To EverythingThere is a Season...

A Guide for Caregivers of Farmersand Ranchers with Disabilities

Hearts Grown ColdMay Be Warmed by the Summer SunDreams You HoldMay Be Closer Than You KnowSeasons Change...

~ Ray Boltz

1

Caregiving:Celebrating the Difference We Make*

By Sally P. Karioth, Ph.D., R.N.

I’ve learned that caring is the hardestand easiest thing I’ve ever done.

I’ve learned to take caring seriouslybut myself lightly.

I’ve learned that MY daily actions areextraordinary, because I do ordinarythings so magnificently.

I’ve learned that a person doesn’t getataxia (a disability), a family does.

I’ve learned that whatever you need ina hurry will be in another room in thehouse.

I’ve learned that if I’m there before it isall over, I’m still on time.

I’ve learned that the spirit of the lawmay be more important than the letter ofthe law.

I’ve learned that everyday I can makea difference in someone’s life, and Ichoose to make it a positive difference.

I’ve learned that the more unloving aperson acts, the more they need to beloved.

I’ve learned that no one says on theirdeath bed, “I wish I’d spent more time atthe office.”

I’ve learned that a man will only askdirections if he’s seen the same cornerfour times.

I’ve learned that if I don’t take care ofmyself, I can’t take care of anyone else.

I’ve learned that time flies whetheryou’re having fun or not.

I’ve learned that if I don’t celebrate theexquisiteness of each day that I’ve lostsomething I’ll never get back.

* Reprinted with permission from Sally Karioth, Ph.D., R.N. LIFE, 2406 Mexia Avenue, Tallahassee, FL 32304

2

PurposePurdue University’s Breaking New Ground

Resource Center in cooperation with theMinnesota AgrAbility Project* has developedthis publication, To Everything There is aSeason, to encourage individuals and familieswho are caring for another family member. Itcontains practical ideas for farm and ranchfamilies who are involved with the joys andstruggles of caregiving following a disablinginjury or illness. The contents are designed toput into perspective unique opportunities thatcome with the different seasons of being acaregiver. It will provide hope for thechallenges that are part of caregiving andequip you, as the caregiver, with informationand resources that will enrich your life and theone receiving care. Since so many caregiversare also the spouse, or a family member,special consideration is given to strategiesthat will strengthen your relationships as yougo through this new season together.

Written and Developed ByBarry Delks M.S. and William Field Ed.D.Breaking New GroundResource CenterPurdue University - ABE Bldg.225 S. University St.West Lafayette, Indiana 47907

In cooperation with theMinnesota AgrAbility ProjectEllie Depuydt, John Shutske, and Ruth Tripp

AcknowledgmentsA special thanks goes to other U.S.D.A.

AgrAbility Project staff who contributed to thisresource including: Eileen Griffen, PatriciaHooper, Brad Marsh, Karen Funkenbusch,Willard Downs, Connie Webb, Tracy Winters,Doris O’Hare, Pat Miller, Mary Yearns, andCarol Maus. Dr. James Sherman andMerlene Sherman, are responsible for manyof the ideas in this resource based on theirbooks, The Caregivers Survival Series. We

appreciate the Shermans for sharing theirinput and expertise. Thanks also goes toDena Targ, Department of Child Developmentand Family Studies, Purdue University, for herprofessional comments and suggestions.

Reviewers including, Diana Doyle, CarolPuckett, Dallas Dinger, Sheri McCormick,Cindy Ade, John Schweitzer, Rita Smith, JillHolton, Michelle Newman, Adrienne Ploss,Sara Tener, Michelle Gruver, Scott Whitman,and Ed Kirkpatrick were most helpful as well.Farm families Kim and Janice McManigal, Edand Debbie Bell, George and Nonalee Bell,J.R. Bradshaw, Devon Page, Don and MyraBaker, Ron and Helen Thomas, RhodaCraycraft, and Susan Pletcher contributedsuggestions and comments for improving thisresource based on their personal experiences.The families of Linda, Shelley, and AustinWilson; Bob and Libby Miller; Becky and RobinEhresman; Martin, Carol, Hans, Heidi and KarlHuelsenbeck; and Carl and Marilyn Shanksterand their children Steven, Mary Frances,Simeon, Esther, Christy, Karen, and Reuben –opened their homes and farms allowing us tophotograph them – Thank-you. Mike Kerper,Purdue University, provided the time and talentfor the photographs. Rosie Lerner, PurdueHorticulture Department, provided aphotograph as well. Creative layout and designwas completed by Heather Bamforth. A specialthanks also to the Purdue University School ofAgriculture which provided partial funding forthis resource through the Dean’s Team Award.

* The U.S.D.A. AgrAbility Program is a national project designed to assist people with disabilities employed in agriculture.Projects are in place in over 20 states. For more information on AgrAbility call 1-800-825-4264.

“There are four kinds of peoplein this world: those who havebeen caregivers, those whocurrently are caregivers, thosewho will be caregivers, andthose who will need caregivers.“~ Rosalynn Carter, former first lady andauthor of Helping Yourself Help Others

3

Table of Contents

Introduction ........................................................................................................... 4A New Season

When the Storms Strike ....................................................................................... 6Impact of Disability

A Season of Rest ................................................................................................... 12Caring for the Caregiver

After the Storm ...................................................................................................... 20Asking For Assistance

Hanging in There Come Rain or Shine ............................................................... 28Commitment to Marriage

Sharing About More Than the Weather .............................................................. 34Communication to Keep Families Working Together

Changing Seasons................................................................................................ 42Accept Changing Roles in Your Family

Hugging in the Rain .............................................................................................. 48Thoughts for Children with Special Needs

Spring is in the Air ................................................................................................ 54Teamwork and Laughter

A Time to Bear Fruit .............................................................................................. 60Healing Through Service

Resources .............................................................................................................. 66Tools for Caregivers

Assistive Devices ................................................................................................ 67

Funding Options ................................................................................................. 70

Phone Numbers .................................................................................................. 71

Programs for Caregivers .................................................................................... 73

AgrAbility Projects .............................................................................................. 73

Other Resources ................................................................................................ 74

Footnotes ............................................................................................................ 77

To Everything There is A Season

4

Introduction - A New Season

“You have to climb up therough side of a mountainto get to the top.”~ Paul Bradshaw, Jr.,Jetmore, Kansas

T he road we travel, regardlessof our plans and dreams, ishighly unpredictable and fullof surprises. There have been

no promises that the seasons of our lifewould be free of cloudy days, droughts,or storms. The unpredictable and oftenuncomfortable events of our life reflectone of the most predictablecharacteristics of life. It should, therefore,come as no surprise that everydayhundreds of farm and ranch* families,like yours, face the beginning of a newday knowing that a family member hasexperienced an injury or illness that isunlikely to go away. Disease, injury, ormaybe the loss of hope has resulted in apermanent disability that will foreverchange your life. The difference is thattoday it’s your family, it’s your husband,wife, son, daughter, or friend who hasbeen disabled. No matter how much youwould like things to be different, or toreturn to their former ways, it might notbe possible. With little or no opportunity

for input from you, you have become acaregiver.

“A spouse, parent, child, orfriend who gives a helping handwillingly with friendship andlove, they are people whocare...”~ Marjory Fritz, Venice, California

Time is not going to stand still, life isgoing to go on. In some capacity you willrespond to this new role as a primarycaregiver for someone who has gonethrough a significant change but remainsvery important to you. This will probablymean giving up some of yourself and yourtime to assume new responsibilities. It maymean putting your personal dreams on theback burner, while undertaking additionaltasks such as unfamiliar farm chores,machinery repairs, marketing crops, payingbills, preparing meals, and transportingchildren.

To Everything There is A Season

* The term farm or ranch is used to define all types of agricultural operations including: farms, ranches,orchards, vineyards and vegetable operations.

5

* See footnotes on page 77.

You may be asking yourself, “Will I beable to muster the determination andcourage to weather this storm and theones to come? Will I have the patience tomake the very best of the existingcircumstances that I cannot control? WillI have the humility to seek a helping handwhen it becomes necessary? and, Will Ihave the faith to believe that maybe thebest is yet to come?”

“Nothing splendid has everbeen achieved except by thosewho dared believe somethinginside them was superior tocircumstance.”~ Donna Direst, Wisconsin

You are not alone. More than 49 millionAmericans have some type of disability.Many require some type of assistance orcare from a family member, friend, orprofessional. As a caregiver you wouldprobably identify with many of the basicaspects of caregiving. These include:

• Giving more assistance in time,energy, and costs, than familymembers usually provide

• Caring for an individual who has somephysical or mental impairment that willlast a long time

• Helping with many basic dailyactivities, such as going to work,getting out of the house, completingpersonal hygiene and care, attendingchurch or social activities

• Having your family member dependupon your care for their well-being (1)*

As a family that has been involved inagriculture, your work has probably beenmore than just an occupation, it has been

a way of life. The farm or ranch, the land,and even the family home are all animportant part of your life, your heritage,and even your identity. As you considerwhether life will ever be “normal” again,this publication will provide ideas,resources, and suggestions that willassist you, the caregiver. Hope is offeredby others who have weathered the samestorms and overcome barriers with thesupport of family, friends, neighbors,community agencies, and their faith.Each year, thousands of farm and ranchfamilies encounter the impact of disabilityon a family member and continue to workand live productive lives. This resourcecontains real life stories and practicalsuggestions to help you face and actuallybegin to enjoy your days as a caregiver.

As your family begins this journeytoward a new season of life, we urge you toconsider the advice of Sir WinstonChurchill to the citizens of Great Britainduring one of their darkest periods. In oneof his most famous, and shortest speecheshe encourages them to: “Never Give Up,Never, Never, Never Give Up.”

“Suppose you arrive at your doorwith your arms full of packages.It is an inconvenience that youdo not have a third hand to openthe door, but you wouldn’tconsider yourself handicappedor feel sorry for yourself becauseyou lack three hands. You mustlearn to consider your blindness(or disability) in the same way,an inconvenience at times butno cause for self-pity.”~ Ralph Teetor, Hagerstown Indiana (2)

To Everything There is A Season

6

When the StormsStrike - Impact of Disability

“Of course, my first reaction was oneof utter shock. For a time I was justtraveling on remote control.”

~ Libby Miller,Decatur, Illinois

7To Everything There is A Season • Libby’s Story

On July 18, 1995 myhusband was involved in atraumatic accident. Heand our son Roger were

putting machinery away when a cultivatorthey were parking collapsed. Bob’s headwas caught between a tractor tire and thewing of a cultivator. That changed our lifecompletely. As a result of his severeinjury, my husband lost sight in botheyes.

Of course, my first reaction was one ofutter shock. For a time I was justtraveling on remote control. I look backnow to my reaction and I think, God hadto be with me because I did all the rightthings. At the time I was just simply doingwhat I had to do.

This new role was rather a frighteningone for me because Bob was a personwho did everything. He repairedeverything around the house. He did all ofour bookkeeping and with income taxcoming on, I was very skeptical of how Iwas going to handle it all.

For a while I was still pretty much inshock and I’m sure that I went throughdepression. I cried a lot every day. That’sone of the things I thought of the otherday. I haven’t had a big teary session fora while and evidently I’m healing. But ittakes a long time, it’s been over a yearnow and I think after the depression,reality sets in and you do the best youcan in positive ways because life has togo on.

Later, I stressed to the people in rehabthat nobody ever warned me what thereaction of others would be to mydisabled mate. I was really overwhelmedand distressed when I found that peoplewere ignoring him. They would speak tome but they would ignore him. I wantedto yell at them, “He’s not dumb, his brainis great. Just because he can’t seedoesn’t mean that he is not a wholeperson.”

Probably anyone who is disabledneeds to know this. Whenever there is adisability, of any kind, to the body, you’regoing to get some negative reactionsfrom other people. We have friends thatto this day don’t feel comfortable talkingto Bob. And this hurts so badly.

It took me a little while to think ofmyself as a caregiver. And I’m sure thatI’m giving care but I’m doing it as apartner, wife and friend. I try to act in apositive way instead of a negative waysimply because it’s my personality. I’m apositive thinking person so I’ve tried toget Bob into new situations, to constantlykeep him in a social atmosphere and notlet him just sit at home, which sometimesis the easiest thing to do.

I think probably the most helpful thingfrom day one was having our faith.Through our faith we have a churchfamily that has supported us everymoment since Bob’s injury. Our familyand our friends have surrounded us withtheir love and their care and they havebeen invaluable to us.

My motto every day at the hospitalwas, and it continues to be, take one dayat a time. You can’t look too far ahead.You have to just take each day as itcomes, do the best you can with that day.This is the way I got through that periodof depression and change.

The commitment to our marriage hasbeen strengthened enormously. Beforethe accident we were both so busy justtrying to keep the farm going. We nowhave all this togetherness, and it hasbeen a wonderful asset that I neverthought of before. Verbal communication,of course, is basic, but the communicationof love and hugs, and friendships iswonderful and most helpful.

~ Libby Miller, Decatur, Illinois

8 Impact of Disability • To Everything There is A Season

“My new role was a ratherfrightening one for me becauseBob was a person who dideverything. “~ Libby Miller

The period immediately following adisabling injury or illness is a critical timeof transition for your family and the farmoperation. A disability brings enormouschange to the entire family, often with littlewarning or time for preparation. In a ruralsetting you may be especially frustratedwith the lack of nearby medical orrehabilitation facilities, long travel times toobtain necessary medical supplies, andfew supporting agencies or disabilitygroups. You may struggle with getting“anything” done and be completelyoverwhelmed with your expenses. Initially,much attention will be given to thephysical and emotional needs of theperson with the disability. As a caregiveryou may feel left out and neglected. Theimpact of a disabling injury or illness leadsto many changes.

Disability can bring about…• Changes in the pace of life and

personal freedom

• A need to be more patient withyourself and others

• A need to reassign responsibilities

• A feeling of being burdened and attimes overwhelmed

• A reduction in social interaction

• A decrease in income

• A renewed commitment to the family

• An exchange of love and respect

• Joy based on serving one another

• More time for family

• An opportunity to learn new skills

• Time to listen and care

“I haven’t had a big tearysession for a while andevidently I’m healing.”~ Libby Miller

Each of us reacts differently to atraumatic or life-changing event.Common stages of emotions that yourfamily may experience following adisabling injury or illness include:

• Shock – disbelief or denial thatanything serious has occurred

• Expectations for recovery – hopethat the injury or condition istemporary

• Mourning – grieving the loss ofprevious abilities or good health

• Defense – anger, aggressiveness,and struggle with dependence/independence

• Adjustment – acceptance, andinterest in future goals and the qualityof life

Impact of Disability

9To Everything There is A Season • Impact of Disability

Realize that others are experiencingsimilar feelings. These feelings can be apart of the normal process of adjusting tothe disability. Do not become discouragedbecause you are in a certain stage or thata stage reoccurs. It’s even possible thatyou may not relate to any of these.Regardless of which stage you are at, animportant question to ask may be: “Howcan I best adjust to the impact the disabilityhas had on my family?”

“But it takes a long time, it’sbeen over a year now and Ithink after the depression,reality sets in and you do thebest you can in positive waysbecause life has to go on.”~ Libby Miller

Regardless of how you approach theimpact of disability, you may experiencestress to the point of weariness and youfeel that you have nothing more to give.There are many reasons you mayexperience stress. One reason is that aperson with a disability may require morecare than you are able to provide.Another is that no matter how well youare handling the situation, you areexperiencing intense and difficult times. Athird reason is that you may give in tounreasonable demands from the personbeing cared for because you areexperiencing many strong feelings.

Some of these feelings may include:• Guilt because you are still healthy

• Responsibility for keeping your loved-one happy

• Hopelessness and the belief that youhave no other option

• Burdened and believing that you haveto do it all

• Confusion about expectations

• Victimized by the person with adisability

• Fear that others will view you asneglectful

• Anger, weariness, and resentment ofyour spouse or loved one

All these feelings add to the impact theinjury or illness has on the entire family. Itis normal for you to feel extremeemotions during the changes you andyour family experience after a disablinginjury or illness. It is OK to feel angry,frustrated, tired, and resentful. However,caregivers who allow themselves to bedominated by unrealistic expectations ornegative emotions are likely to become“burned out or stressed.” It’s time to start“caring” for yourself! (3)

I am thankful for those who understoodthat tears, or lack of them, do not measurethe depth of my grief. Those who were ableto put aside their own agendas and feelingsof loss, to listen to me speak about mysadness, gave me a gift of presence.Those who admitted their discomfort withmy grief opened the door to realcommunication. Tears were morecomforting than “answers,” hugs morehealing than reason. Those who talkedabout my loved ones as if they reallyexisted and understand the value of eachindividual help to keep memories of themalive. I am grateful for those who haveallowed me to choose my path throughgrief, who have not urged me to hurrybecause they felt uncomfortable. Thosewho offered concrete assistance when theyobserved I needed it helped to preserve mylow energy supply and offered hope. Thosewho have continued to call, visit, and reachout when the crowd has dwindled havehelped me to feel less alone.

~ Sara Wengard, Grief in Community,Reunion Summer 1996

10 Impact of Disability • To Everything There is A Season

Brightening the SeasonDesired Outcome

This activity will help your familydiscuss both the positive and negativeaspects of the disability. It will alsoencourage dialogue even when it may bedifficult or there is little desire to addressimportant issues.

ActivitySince it is not possible or healthy to

discuss all of the important issues relatedto a disability in one discussion, considerfocusing on one topic at a time overseveral weeks. Set aside a specific time,such as after dinner to spend 10 – 20minutes on one topic. You may want toput each topic of concern on separatecards and place them all in a jar to drawfrom at the beginning of each discussion.Use the list below as a starting point.

• What is really important to our family?

• How will this disability affect our farm,home, and plans for the future?

• Will we be able to take a vacation?

• How do we communicate what hashappened to others?

• Should we develop a budget?

• How should we share anger andfrustration?

• How should we reassignresponsibilities around the home andfarm?

AssignmentAfter everyone has had an opportunity

to talk and share their feelings, decide asa family on one area that you want towork on together to improve or overcomeone of the negative aspects of a specificissue. Pick one positive aspect andexplore ways that it can be enhanced tostrengthen your family. Remember whensharing your feelings, there are no rightor wrong feelings. Allow everyone toshare without fear of having their feelingscriticized. In a few weeks, assess whatyou have accomplished. Determine whatyou need to keep working on and tryagain!

Note: Developing an honest openrelationship takes time and patience.Progress comes in small steps and theeffort is more important, in most cases,than the outcome. It is critical that you becompletely honest if you expect others tobe likewise.

Activities

11To Everything There is A Season • Impact of Disability

Personal ThoughtsIn the space below, attempt to describe your feelings at this moment about your

situation as a caregiver. Then list a few ways that you plan to respond to them. Revisityour notes at the end of the month and assess your accomplishments. If some of yourfeelings, such as anger, have become more intense, find someone you trust to talk toabout them.

Feelings

How I plan to respond to them.

Activities

12

A Season of Rest -Caring for the Caregiver

“Life outside of rehab is not the same.You don’t have perfect exerciseequipment, everything is notaccessible, and you don’t have therehabilitation professionals around.So you have to take care of yourself –establish your identification rightaway and have the person with thedisability do that also.”

~ Kimberly Zimmerman,Courtland, Minnesota

13To Everything There is A Season • Kimberly’s Story

W hen I got the call in June1986 that David hadbeen in an accident, Itold my boss the

circumstances and left work. A car hadturned into David while he was drivinga motorcycle. When I got to the hospital, Iwas told that with every hour that passedthere was an increased chance Davidwould not walk again. We have never saidhe will not walk again. You have to havehope.

Before the accident, my job was totake care of the children and the houseand I was working full time in town. Afterthe accident, I still had to do that, and alot of farm chores too.

We had Jessica, our daughter, twodays after David’s release fromrehabilitation. We taught our oldestdaughter, Brittany, to climb up the spokesof his wheelchair like a ladder.

At first I had to ask people to back offso I could deal with my own emotions. Iwas told I was the support and could notbreak or they all would break. I finally hadto admit that I couldn’t handle it alone. Itwas tough to go to family and say canyou do this or will you do that. Youwonder if you have used people toomuch. You have to allow people to offerhelp. My mom reminded me I was notsuperwoman.

We did tap into public health nursing.That was hard. I felt I should be doing it,being his wife. Not only did the nurse helpwith David, but I was able to bouncethings off her when I was stressed.David’s grandma was always good forwords of wisdom. She, along with otherfamily members, helped with the chores.We also went to the social worker todiscuss what David could do. We saw amodified tractor in a Breaking NewGround manual.* My dad was amechanic, and I asked him if he couldbuild one – he did.

Life outside of rehab is not the same.You don’t have perfect exerciseequipment; everything is not accessible,and you don’t have the rehabilitationprofessionals around. So you have totake care of yourself. Establish youridentification right away and have theperson with the disability do that also.

I would encourage other caregivers tomaintain their sense of self-worth. Keep apositive light on things. It can be agrowing experience for all, and thingscan change for the better. Dave hasmore time now and has his priorities setbetter.

~ Kimberly Zimmerman, Courtland,Minnesota

* See Resource Section.

14 Caring for the Caregiver • To Everything There is A Season

Many people accept the role of acaregiver gladly, while others view it as asignificant burden and intrusion into theirlives. Devoting yourself to caring foranother individual can either enrich yourlife or leave you bitter and angry. LindaBerina, R.N., states, “Stress affects theextent to which a disabling conditionbecomes a handicap.” (4)

You need to recognize negativeemotions and signs of burn out early soyou can begin to deal with them.Recognition of the first warning signsmay prevent a sense of beingoverwhelmed.

Caregiver Needs Help! (5)If you notice any of the following

danger signals, consider seeking helpfrom a friend, your pastor, a counselor, asupport network, or one of theorganizations listed in this resource.

• Your family member’s condition isworsening, despite your efforts

• No matter what you do, it doesn’tseem to be enough

• You have no time alone

• Family relationships seem to bebreaking down

• Communication between familymembers is negative, tense, orsarcastic

• You have no social life because ofyour caregiving duties

• You have shut out everyone who hasoffered to help

• You have self-destructive thoughtsabout yourself or the person whoneeds you

• Your coping methods are destructivesuch as overeating, not sleeping, orabusing drugs

• Loving and caring have given way toexhaustion and resentment

Don’t wait until you are sick or untilyou have reached the end of your rope.Seek out help today and take positivesteps toward overcoming the stress. Thefollowing are additional ways to deal withnegative emotions and prevent yourselffrom becoming burned out.

Maintain A Positive ApproachOne way is simply choosing a positive

approach. Keeping a positive attitude willreduce the buildup of negative feelingsand the effect of stress. It has been said,“Life is 10 percent what happens to usand 90 percent how we react to it.”Begin to react with the most positivestatements and attitudes you can muster.

“Keep a positive light onthings.”~ Kimberly Zimmerman

However, the reality is you willcontinue to have some negativeemotions. If you can use that emotion ina positive manner instead of denying it oracting on it negatively, you can go a longway toward keeping your mental andphysical health. Consider the followingthoughts from Gary Smalley, President ofToday’s Family:

Caring for the Caregiver

15To Everything There is A Season • Caring for the Caregiver

“Negative emotions can remindme I am expecting fulfillmentfrom people, places andcircumstances. It is learningthat people, places andcircumstances are gifts of lifenot the source of our life… thefreer we are of others’expectations to make ushappy, the more honest ourlove for others will become.” (6)

Concentrate on the Important –Forget About the Rest

Another approach to reducing stress isto sit down with a friend, mentor, orcounselor and express how you feel andwrite out what is causing stress in yourlife. Decide which factors are notimportant enough for you to worry aboutat this time. Then brainstorm on ways youcan begin to give more attention to theitems causing the most stress andchoose to leave the other issues foranother day. Concentrate on the momentat hand. As one farmer put it – “live oneminute at a time.”

“Before the accident, my job was totake care of the children and thehouse, and I was working full time intown. After the accident, I still had todo that, and a lot of farm chores too.”

~ Kimberly Zimmerman

Make Time For YourselfThe most effective caregivers learn to

make time to care for themselvesphysically, emotionally, spiritually, andsocially. By making time for yourself youwill actually have more energy andpatience for caring for your family. Maketime for activities that refresh you suchas spending time with a friend or walkingalone in the woods. Making time foryourself will recharge you and make youmore effective.

Diet and ExerciseProper diet and exercise are essential

to your physical and mental well-being.One of the best ways for you to take careof yourself and your family is for you totake time to exercise at least two or threetimes each week. Eating healthynutritious meals and eliminating junkfoods will actually give your body moreenergy and strength to face the demandsof your family. If you need ideas fordeveloping a better diet contact yourcooperative extension office or PublicHealth Department.

Music in Your LifeMusic has wonderful therapeutic effects

as well. It has the potential to encourageand brighten up the dreariest farm orranch home. The long periods ofcaregiving may also prove to be anopportune time to learn how to createmusic on your own. If you have not playedan instrument before, even a harmonica,try it; if you can whistle, do it; and if yousing, let’er fly. Buy a kit and build adulcimer and learn how to play it! Get thewhole family involved, one on the piano,one with a harmonica and one withspoons. Create your own tunes. No doubtyou will be laughing before it is all overand you will have drawn your family closertogether at the same time.

16 Caring for the Caregiver • To Everything There is A Season

“Little by little time goes by,Short if you sing through it,Long if you sigh.”

One pianist, Dino Kartsonaskis,produced a “therapeutic” album for hisdaughter, who has multiple sclerosis. Hehas recorded the Peace Series, whichincludes classical, hymns, and naturesounds to provide a therapeutic effect(see the Resource Section for moreinformation). Experiment and seewhether music brings laughter and ahealing effect in your home.

Helpful Hints to Prevent Stress *• Focus on the positive

• Learn to laugh more

• Find someone to confide in

• Keep connected with friends

• Enjoy what you do accomplish

• Leave unimportant tasks undone

• Don’t try to do everything yourself

• Allow for time by yourself everyday

• Ask others for help and accept helpoffered

• Seek financial, legal, spiritual, andmedical advice

• Maintain activities that do not includethe person you care for

• Practice good health habits – exercise,rest, and eat a proper diet

• Reward yourself by reading a book orhaving lunch with friends

“The toughest part of takingcare of a loved one isremembering to take the timeto take care of yourself.”~ Diane Thomas, R.N

Summary (7)Hopefully you will realize the

importance of taking care of yourself.Part of caring for yourself is finding thatthere is joy in being a caregiver. Possiblemeans of joy and satisfaction may comethrough:

• Self-satisfaction from being useful

• A greater sense of self-worth

• The appreciation from the individualwith a disability

• The ability to take your mind offyourself and your own worries

• An exchange of love and respect

• The feeling that you are making adifference

Finding joy may begin with admittingyou can’t do it alone. It is OK to giveattention to some of your needs. And bytaking care of yourself, you will berefreshed and find it easier to care forothers.

“Real joy is not dependentupon the outward events in ourlives. When we help and carefor other people, the one whocares is the person whobenefits the most.”~ Gary Collins, Family Counselor

* Adapted from ideas from the Caregiver Survival Series, by Dr. J. Sherman; When You’re the Caregiver, byJames E. Miller, and from farm families who shared their ideas and lives.

17

Keeping Your Eye on the SkyDesired Outcome

Through this activity, you will identify those characteristics in your life that need moreattention in order for you to become a better caregiver.

To Everything There is A Season • Caring for the Caregiver

Activity

Remember the old saying:Red sky at night shepherd’s delightRed sky in the morning shepherd’s warning

Being able to read the warning signs can help avoid trouble by making youbetter prepared. Review the following list of qualities related to good caregiving.Put a check mark after each quality under the headings clear sky or stormcoming for the areas you are doing well with or areas you need to work on.Notice that many of these qualities relate to taking care of yourself.

As a caregiver I: clear stormsky coming

Realize that sometimes it is best to take a break andtry again the next day

Help the person receiving care to Find and developnew resources

Encourage others to master new tasks and acceptnew responsibilities

Tolerate failure both in myself and the oneI am caring for

Do not solve problems that others can solve themselves

Do not take bitterness or anger from others personally

Maximize the abilities of the one I am caring for

Focus on what can be done not the impossible

Remember I have needs too

Activities

18

Keeping Your Eye on the Sky (continued)

Caring for the Caregiver • To Everything There is A Season

AssignmentAs you review the list on the previous

page, which item(s) suggest that a stormmay be brewing? Acknowledge the thingsyou are doing right. Now is the time totake care of yourself and prevent a futurestorm!

Pick one item that suggests that astorm may be brewing and work on it thisweek. Tell a friend what you are going todo and ask for help. Encourage him orher to hold you accountable in the areaselected.

During the coming week, I will work on the following warning sign:

The specific steps I will try to take are:

1.

2.

3.

4.

5.

6.

7.

8.

9.

Activities

19

Personal ThoughtsIn the space provided, write out a few specific goals relating to your life that you

would like to accomplish over the next 30 days and over the next six months. Revisityour notes at the end of the month and assess your accomplishments. You might besurprised by the progress you have made.

Personal goals for the next 30 days:

1.

2.

3.

4.

5.

Personal goals for the next six months:

1.

2.

3.

4.

5.

6.

To Everything There is A Season • Caring for the Caregiver

Activities

20

After the Storm -Asking For Assistance

“Such an outpouring of community spiritand thoughtfulness was indeed bothtouching and humbling. I had alwaysfound asking for assistance very hardto do. But in such a situation, you soonadmit you can’t do everything. You learnthat occasionally you must swallow yourpride and request help.”

~ Debbie Bell, Hagerstown, Indiana

21To Everything There is A Season • Debbie’s Story

~ a wife’s thoughts

As a caregiver, you soon learn thereare a number of responsibilities toshoulder. Time is always at a premium,and the many tasks you must performrequire a great deal of energy if you areto keep up. The trick is not to let the joboverwhelm you. An exhausted caregiverbecomes inefficient. So look for someone(or several someones) to provide you abreak from the routine.

Some people find caregiving easierthan others. Those who bring a cheerful,energetic spirit to the task each day areblessed and deserve our praise. After all,caregiving is one of the most Christianacts an individual can perform. And doingit on a daily basis, with patience and love,is certainly giving of oneself.

Along the way, you learn it is mucheasier to help others because of whatyou have been through. As a registerednurse, I can now provide moreunderstanding and support to others.Often, just listening is one way to helpthose undergoing difficult times.

~ By Debbie Bell, wife of Ed Bell

A fter Ed was injured in a crime (from a gunshot), I

found it necessary to adapt quickly to several changes in

my life. Not only was I a young city-bornwoman about to begin married life in thecountry, but my husband-to-be was nowparalyzed from the waist down. He hadsuffered a permanent T1 – T2 spinal cordinjury in the shooting.

As many couples have done when onebecomes disabled, we struggled togetherand learned along the way. During theweeks immediately following Ed’s injury,we received lots of help from relativesand friends in the community. A rampwas built, an accessible bathroominstalled, a sidewalk poured, and a vanwith a wheelchair lift was purchased.Church members, merchants, the localvocational rehabilitation service, familyand friends, and even those unknown tous came to our rescue.

Such an outpouring of communityspirit and thoughtfulness was indeed bothtouching and humbling. I had alwaysfound asking for assistance very hard todo. But in such a situation, you soonadmit you can’t do everything. You learnthat occasionally you must swallow yourpride and request help. Usually, theassistance given initially tapers off after afew weeks. This doesn’t mean peoplehave deserted you. It just means othersare busy with their own lives. Family andfriends will still respond to your needs,although it may not come as quickly asyou wish.

22

~ a mother’s thoughts

Because our son had just finished hisschooling and had not begun to paySocial Security, there were no benefitsavailable. With help from family andfriends, and by liquidating all ourlivestock and equipment, and cashing inall life insurance policies, we were stillshort nearly a third of the $175,000 debt.I found myself facing mountains ofpaperwork and forms to fill out in order tohelp my son qualify for Medicaid and SSI,(not something that we ever dreamedcould happen to us). Ultimately, I foundmyself sitting across from our attorneysigning papers that would declare usbankrupt.

In addition to all that was happening tous, there was the constant fear that myhusband could not physically cope. Just afew months before our son wasparalyzed, George, my husband, hadspent many months in the hospital with aserious heart problem.

In summary, I need to tell you that it isimportant to accept help when it isoffered. Do not rob others of theiropportunity to give and be blessed. Ihave learned that God sends angels inmany different forms. Put your trust inHim, allowing Him to lead you through themaze, and while your life will never be asit was before, much can be learned.There is happiness to be found in anycircumstance.

~ Nonalee Bell, mother of Ed Bell

Nonalee’s Story • To Everything There is A Season

W hen my 21-year-old sonreceived a T1 – T2 spinalcord injury, our immediateconcern was, of course,

for his life and then his rehabilitation. Astime went on and reality began to set in,we realized that in addition to the painand trauma of watching our son struggleto rebuild his quality of life andindependence, we were also faced withfinancial devastation.

Help came quickly from manysources. Family, of course, churchfriends, and neighbors, supplied many ofour needs. They harvested our crops thatFall, and one Saturday truckloads ofthem descended upon the farm andreplaced old broken sidewalks withsmooth new ones as well as a concretepad to ease the access to and from thenew handicapped van purchased from alocal car dealer at cost. The town folkshad even raised the down payment forthe van.

Because of the time required awayfrom our large farrow-to-finish hogoperation, the profits were lost. We werefacing unpaid bills to feed companies aswell as the astronomical hospital andmedical bill, which a $65.00 a dayinsurance policy didn’t even make a dentin. The feed company continued todeliver feed for the animals even thoughthey were well aware of our situation.They even refused to charge interest onthe escalating bill. All of these things,which we did not ask for but were sofreely given, were indeed humbling. Butthe real lessons in humility were yet tocome.

23

calling 911 when we see smoke comingfrom the hay mow or calling theveterinarian when a cow is down. Thinkhow easy it is to call the equipmentdealership to solve a problem with thecombine or baler, or the county ExtensionEducator when a weed control program isnot working the way you think it should.The well-being of you and your family aremore important than the weeds in the cornor the life of a cow! As a caregiver, youmay need help from others to successfullymeet upcoming challenges.

If you don’t ask for help, itwon’t get done! And I thinkasking for help also helpsother people – because a lot ofpeople sit back waiting for youto ask them – it makes themfeel better when they can helpyou.”~ Debbie Bell

Asking for this help may be extremelydifficult for you, however, managing thefarm or ranch and completing day-to-dayoperations is a big job. With the additionaltasks and energy required to meet thenew needs of a disability, it may becomeoverwhelming without help and supportfrom others.

“It is real important to askothers for help so you’re notstressed and just to get thingsdone.”~ Debbie Bell

To Everything There is A Season • Asking for Assistance

“The hardest thing to do is toask for help”~ Debbie Bell

Being a caregiver can be hard work.Making transfers, loading and unloadingwheelchairs, and lifting heavy medicalequipment all take time, energy, andeffort. When an injury or illness to afamily member results in a long-termdisability, there are many new tasks to becompleted. In addition, the farm or ranchrequires daily attention that does not waituntil the family is “ready” to work. Yet youmay be avoiding asking others for help.

Characteristics that previously helpedyou succeed as a farmer or rancher maynow be the very characteristics that makeit difficult to seek help from others. Howmany of these characteristics can youidentify with?

• Do not usually seek help for personalmatters

• Have always “done fine” on your own

• Usually keep “private” matters in thefamily

• Fiercely independent

• Don’t like asking others for assistance

This independence and self-reliantstrength is evident in the words of onefarmer with a spinal cord injury, “If you can’tpull your own weight, pull what weight youcan…” There is truth and encouragementin those words. However, even thoughthese traits may have served this farmer oryour family well in the past, you need tosee the value of reaching out to others. Forexample, few of us have any reluctance

Asking For Assistance

24

Seek out Friends and Support!Some caregivers find help from

friends, family, church or other localorganizations. Begin to seek out supportso you are not pulling all the weightalone. At some point, you must decidethat it is OK to ask others for help!

We all need friends. During some ofyour toughest days you will need the typeof friend who will stick “closer than abrother.” In addition, seek out others whohave a family member with a similardisability. Share common experiences,learn from each other, and ease yourisolation. A close friendship with just oneother person can make a big differencein “making it” through tough times. Spendtime every week with your friends; theywill be good medicine.

Consider trying one of the followingactivities to help you break out of anisolation cycle and renew friendships anddevelop new ones. If it is successful, tryanother one. If it is not, try one more!

• Buy or bake cookies and take them toa neighbor

• Call an “old” friend and talk about thegood times you have shared

• Participate in church activities, andinvite a friend

• Schedule a weekly visit to the localcoffee shop

• Attend an educational or inspirationalmeeting with a friend or neighbor

• Join a support group, bowling leagueor Extension Homemaker Club

• Demonstrate hospitality – remember,good friends are more interested inyou than the condition of your house

“Two are better than one… Ifone falls down, his friend canhelp him up.”~ Solomon

Some people you have consideredclose friends in the past, may not dealwell with the disability and may drop outof your life. On the other hand, you mayfind individuals who were formerly mereacquaintances become close friendsbecause of their common experiences.Prior to the disability you and yourspouse were probably part of severalnaturally occurring “support groups.” Thismight have included people from church,bowling league, Farm Bureau, volunteerfire department, 4-H, ExtensionHomemakers, Lions, Optimist, or themorning coffee hour at the elevator.These groups represent some of yourclosest friends and supporters. Don’twithdraw from them now. They neededyou before, and they need you now – andyou need them. As soon as possible,return to the groups you enjoyed.

Asking for Assistance • To Everything There is A Season

25

“Usually, the assistance giveninitially tapers off after a fewweeks. This doesn’t meanpeople have deserted you. Itjust means that others are busywith their own lives. Family andfriends will still respond to yourneeds although it may notcome as quickly as you wish.”~ Debbie Bell

Other sources of support includegroups that have been established for thepurpose of meeting the needs of personsfacing specific issues such as disability.These range from groups addressingillnesses such as arthritis, cancer, ordiabetes to amputation support groups.Check with your local physician, hospital,Cooperative Extension office, ortelephone book for information oncontacting these groups. Take theplunge! Show up at their next meeting.What you will most likely find is a groupof people like you. They are facingsimilar struggles and want to encourageand help you in any way possible.Caregivers with a support system livehappier lives than those who are isolated.

More Ideas for Pulling Togetherafter the Storm (8)

As you look for a group to join,consider the following ideas that can helpmake your involvement in a supportgroup successful:

ConfidentialityFind out if the group has a reputation

for keeping private matters confidential.You need to be able to trust your supportgroup.

Shared leadership responsibilitiesDoes the group provide for shared

leadership? Leadership experience helpsbuild self-worth and will bring morecreativity to the group.

Realistic expectationsDon’t be discouraged if there are only

two or three people in attendance at themeeting. Enjoy learning from thoseattending.

Responding to the groupmembers’ needs

Determine if the meetings are practicaland helpful to those participating. Itshould not be a gripe session just forvocal members.

“Friendship improveshappiness and lessens misery,by the doubling of our joy andthe dividing of our grief.”~ Cicero

To Everything There is A Season • Asking for Assistance

26

Pulling Together After the StormDesired Outcome

This activity will demonstrate the valueof getting together with others who haveexperienced similar storms in their lives.

ActivityIn many communities a wide variety of

support groups have been formedbecause people have sensed the need toshare their burdens with one another andto encourage those who are passing

through a difficult time. At some pointduring the week make the commitment toattend one of these groups that relates tothe disability or the situation you findyourself in. This might require findingsomeone to fill in for you for a few hoursor to arrange transportation. The result,however, is worth it. The strength andencouragement that these groups canprovide is essential to your well being as acaregiver.

Asking for Assistance • To Everything There is A Season

AssignmentTask Completed

1. Check the yellow pages and community events sectionof the newspaper, or call the local hospital to find outwhat groups meet, when and where.

2 Call the contact person and confirm the next meetingdate, place, and time.

3. Attend a meeting of a support group this week.

4. As you talk to someone who has already been througha similar storm, be grateful for what you are doing rightand learn from the experience of those who have passedthrough this storm before you.

Activities

27

Personal ThoughtsIdentify one group that has meant a lot to you. It might be a group of neighbors, a

Sunday school class, an Extension Homemaker Club, or a civic group. List the waysthat this group has made you a stronger, more mature person.

1.

2.

3.

4.

5.

6.

What are your feelings toward this group and how have they responded to you inyour new role as a caregiver?

To Everything There is A Season • Asking for Assistance

Activities

28

Hanging in ThereCome Rain or Shine -Commitment to Marriage

“I married him for life! The GoldenRule is the law I follow in life. I believein doing unto others as you wouldhave them do unto you. That’s what Iwould have wanted Ron to do if I hadbeen the injured one.”

~ Helen Thomas,Tangier, Indiana

29

A s I watched Ron lay helplessin the hospital, a T-11paraplegic, I decided that Iwould make things happen for

him. I married him for better or for worseand if love is true, it just doesn’t stopwhen the person needs you most.

I went home and started knocking theplaster off the bedroom walls and makingan accessible bathroom and wheel-inshower. I drew on all the strength I couldmuster. I would remind myself that thiswas a labor of love. And with my prayersI found strength to continue the work.

We didn’t have the money to hire thework done. Ron lost a good paycheckand major medical policies when he wasinjured. Later our church and friendshelped us finish the work. We sold atractor, a motor home and other thingsand took out another loan on our home tobuild Ron an accessible wood shop.

The Breaking New Ground ResourceCenter at Purdue University (seeResource Section) shared creative ideasto modify the work area. With the help ofVocational Rehabilitation, a lift and drivercontrols were added to our Ford van. Afriend, who was a medical salesman,brought in a hospital bed and in time wehad Ron all fixed up. This took about twoyears.

With each step I could see the lightcome back into Ron’s eyes. I helped himwith most of his personal needs until helearned how to care for himself, and intime he did achieve this. I would not dofor him what I thought he could do forhimself. At first that made him angry, butnow he jokes about it.

My decision to make things happen forRon has been refreshing and gratifying.Making Ron happy was the reason Imarried him. Why would I stop now, evenif he isn’t the strong man I married. Oldage brings it on anyway.

The counselor told us many marriagesend in divorce after a disabling injury. Imarried him for life! The Golden Rule isthe law I follow in life. I believe in doingunto others as you would have them dounto you. That’s what I would havewanted Ron to do if I had been theinjured one.

~ Helen Thomas, Tangier, Indiana

To Everything There is A Season • Helen’s Story

30

“I decided that I would makethings happen for him. I marriedhim for better or for worse and iflove is true, it just doesn’t stopwhen the person needs youmost.”~ Helen Thomas

Ron and Helen Thomas have set agood example for all of us to follow.Because of their commitment they havekept their home loving and have enjoyedmany new seasons planting andharvesting their crops together. Onesurvey conducted with individuals withspinal cord injuries found that thosepersons who had made an excellentmental adjustment had come from“exceptionally warm and lovingbackgrounds.” (9) Maybe you arewondering, “How can I be warm andloving during this time of turmoil?” “Howcan I really be committed like Helen?”Family counselor, John Trent states,“Remaining tender during a trial is one ofthe most powerful ways to build anintimate relationship.” Look at thefollowing suggestions and talk aboutthem with your spouse. Ask him if thereis one thought that you both could workon together.

Thoughts to Keep Your MarriageStrong (10)

• Difficulties do not mean something iswrong with your marriage

• Your response to difficulties will eitherdrive you apart or bind you together

• Become dedicated to “binding”together

• Your mate’s needs are opportunitiesfor personal growth, not inadequaciesor problems that makes him lessdesirable

• Find your mate’s #1 need and strive tomeet it

• Remember your mate is not yourenemy

• Don’t focus on your mate’sweaknesses but rather on hisstrengths

• Never criticize your mate in public,discuss your differences in private

• Walk in the other person’s shoes…think about what it would be like to bemarried to someone like yourself!

• Do not harbor secrets or anger. Behonest and sensitive in sharing yourfeelings

• Never play games to “get even.”Instead build trust, respect andsecurity through youractions and words

Commitment to Marriage • To Everything There is A Season

Commitment to Marriage

31

In Helen Thomas’ story she states thatshe decided that she was going to startmaking things happen for Ron. She usedher energy to even start remodeling andmodifying their house. An important part ofany marital commitment is serving oneanother. As a couple, discuss ways youcan commit to serving each other. It can beas simple as treating your family withcommon courtesy and respect or asimportant as “sticking it out” together nomatter how hard the winter winds blow.

“I believe commitment is forlife and when somethingterrible happens to you I feellike part of that commitment issticking it out, staying in there,helping that other person.”~ Helen Thomas

As part of the rehabilitation process,plan to attend a Marriage Encounterweekend. These special weekends areheld all over the United States and aredesigned to strengthen good marriagesby improving communication skills. Youwill meet with other couples with a strongcommitment to their marriage and be ledthrough a series of exercises toencourage regular and meaningfuldialogues on issues effecting yourmarriage.

The YMCA, community college,hospital or a local church may offer acourse on communication or listeningskills. Go to an enjoyable class togetherand commit to strengthening yourmarriage.

Sweat trickled down my back asI grabbed a hay bale from thewagon, planting it on theelevator. Turning back foranother, I was greeted by myhusband’s smiling, wind-burnedface and a glass of iced tea.“Let’s take a break,“ hesuggested, heading for theporch swing. “Thank you for yourhelp,” I said, smiling through thedirt on my face. “That’s OK,” hereplied. “When I said those vows20 years ago, I knew it includedkids, hay bales and horses. I stillthink it was worth it.” I huggedhim hard, dirt and all. Thank you,Lord, for the special people youplace in our lives. I prayeveryone be as blessed as wewere in finding that someone.~J. Rhodes

To Everything There is A Season • Commitment to Marriage

32

Hang in There Come Rain or ShineDesired Outcome

The purpose of this activity is toencourage you and your spouse to makea stronger commitment to each othereven during the tough times.

ActivityRead the following story by Robertson

McQuilkin. Like Ron and Helen Thomas,this story is written to encourage you tobe committed to your spouse – especiallyduring the hard times.

Sustaining Love in Marriage*It had been a decade since that day,

during a Florida vacation, when Muriel,my wife, repeated the story she told justfive minutes earlier. “Funny,” I thought,“that’s never happened before.” But itbegan to happen occasionally. Threeyears later, when Muriel was hospitalizedfor test on her heart, a young doctorcalled me aside and confirmed that shehad Alzheimer’s.

Trusted, lifelong friends urged me toarrange for institutionalization. “Murielwould become accustomed to the newenvironment quickly,” they said. Wouldshe? Would anyone love her at all, letalone love her as I do?

Years later Muriel cannot comprehendmuch or express many thoughts. But she

knows whom she loves, and she lives inhappy oblivion to almost everything else.She is such a delight to me. I don’t haveto care for her; I get to. One blessing isthe way she is teaching me so muchabout love, God’s love.

Muriel cannot speak in sentences now,only in phrases and words, and oftenwords that make little sense: “no” whenshe means “yes,” for example. But shecan say one sentence, and she says itoften: “I love you.” She not only says it,she acts it.

During the last two years it becameincreasingly difficult to keep Muriel home.As soon as I left, she would take out afterme. With me she was content; withoutme she was distressed, sometimes terrorstricken. The walk to work is a mile trip.She would make that trip as many as tentimes a day. Sometimes at night, when Ihelped her undress, I found her bloodyfeet. When I told the family doctor, hechoked up. “Such love,” he said simply.

As Muriel needed more and more ofme, I wrestled with the question of whogets me full-time, Muriel or work. Whenthe time came, the decision was firm. Ittook no great calculation. It was a matterof integrity. Had I not promised, 42 yearsbefore, “in sickness and in health… tilldeath do us part.”

Commitment to Marriage • To Everything There is A Season

* Reprinted with permission from Dr. Robertson McQuilkin, President emeritus Columbia Seminary.

Activities

33

AssignmentWrite your mate a love letter. Express

to him how important he is to you andidentify two or three characteristics thatyou especially appreciate. Thank him forwhat he has done for you. Remind himthat you desire to go through this difficulttime together – no matter what.

Hang in There Come Rain or ShineDon’t expect a response. Then follow-

up with short notes on the mirror, on hisplate at breakfast, or stuck in his hat orboot. Love notes will often soften eventhe toughest heart.

Personal ThoughtsAre there couples in your community that you admire? What aspects of their

marriage could you emulate?

1.

2.

3.

4.

5.

6.

To Everything There is A Season • Commitment to Marriage

Activities

34

Sharing About MoreThan the Weather -Communication to Keep FamiliesWorking Together

“After the accident, there wasrehabilitation, the loss of a job,paralysis, then all the financialburdens. I was overwhelmed. I knewthe answers… I had read the books.But I needed to express my needs tomy spouse first. I had said it in mymind, but there is something healingabout grieving out loud…”

~ Janice McManigal,Veedersburg, Indiana

35

It was a cold, rainy Januarymorning, and I assumed thegreatest challenge of the daywould be my third grader’s

language test. We never saw that test.My husband, Kim, was driving his vanwhen it hit some ice, slid and rolled overfour times before stopping. Kim wasthrown from the van, and this resulted inpermanent paralysis from the chestdown. Little did we realize, as the doorof our world as we knew it slammed shutand this new world of paraplegia wasushered in, the barrage ofcommunication that was to lie ahead.

Our first challenge was finding andtalking to doctors. We quickly realizedsome doctors weren’t goodcommunicators and that we were goingto have to assume the role of the initiator.We made lists, talked to nurses, andread to form a base of understanding anda source from which to draw questions.We even taped all conversations withdoctors so we could listen again andmake sure communication was clear.This was necessary to assist us with ournew disability.

During those 16 months ofrehabilitation we had to learn tocommunicate grief. This task ismultifaceted. We found cards a goodmeans of sharing our hearts. We alsodiscovered others could enter in bysharing their music with us. Then therewas silent grieving. As friends wouldpraise our new accomplishments ourhearts ached because we just wanted towake up and see the whole thing was abad dream. There was the grieving thathad to be done out loud as well.

I remember the night Kim told me thatour insurance company was fighting tokeep from assuming workercompensation responsibilities. That was

To Everything There is A Season • Janice’s Story

it! I had had it! I just wanted to get inGod’s face and yell at Him. I held ontothat anger until Kim asked me toverbalize my grief allowing me to getrelease. My soul was lifted because I wasfree to communicate my anger, and myhusband was able to comfort me throughthat night. We found much healing incrying together as we reminisced on whatwe had lost – things great and small. Wecried as we tried to figure out how tomake inroads to the future.

My soul was lifted because Iwas free to communicate myanger, and my husband wasable to comfort me through thatnight.~ Janice McManigal, Veedersburg,Indiana

Our next task was to communicate withour children. We found the long rideshome from rehab provided a safeenvironment for them to share theirfeelings. We watched videos to teachprinciples of hardship and rising abovethem. When someone disabled was onTV we would watch as a family anddiscuss issues. We would include ourchildren in some of our discussions on thefuture and get their input. We always triedto encourage honest feelings, words, andemotions. We didn’t always have all theanswers. The important thing was that wewere going through this together, notseparately living in the same house, buttogether.

Communication with friends, family,and church took on new meaning. Wehad to humble ourselves and bevulnerable. We had to share our pain, thefrustrations, the anger, theaccomplishments, and our needs(physical, emotional, spiritual). These

36

Communication

lwere times they carried us. Those wholoved us needed to know these things;otherwise we were keeping them fromtheir full capacity of helping andcommitment.

Last, we needed to communicate withour community. We found if you couldmake those you spoke to feel what wefelt they had a better listening ear. This isa key when trying to show a restaurantowner the frustration of being blocked into a “handicapped” parking space, orshare with a department store managerthat boxes in the aisle blocked passage

for a wheelchair. We found many peopleresponded if given the facts that werepresented in a kindly manner.

Our disability reached from our lives tothe lives of our family, friends, church,and community. All were affected. Thetruest gift of communication is its abilityto bond people and even makecatastrophic disabilities conquerable.

~ Janice McManigal,Veedersburg, Indiana

“There’s a delicate balancebetween giving in, hanging on,and graciously accepting theinevitable. We had to recognizethat our different emotionalneeds couldn’t be ignored – nothis, not mine.”~ Suzanne Mintz, co-founder,National Family CaregiversAssociation

Effective communication is a key to ahappy and successful home for anyfamily. With the added stress ofdepending upon one another and ofspending extended periods of timetogether because of a disabling injury orillness, communication between you andthe care receiver is vital.

One approach to consider in trying toassess your level of communication is toask your children. Their honest answersmay hurt but could prove helpful.

The following ideas can provide a goodfoundation for communication to keepyour family working together: (11)

• Practice listening to every word andthen restate what you heard

• Avoid using sarcasm, criticism,avoidance and teasing

• Share your feelings and offer asolution to a troublesome problem

• Touching is an added accent tocommunication

• Keep your complaints short and endthem with an expression ofappreciation

• Remember – this is not a tractor pull– you should not be out to see whocan win! Your purpose should be tounderstand each other

Communication • To Everything There is A Season

“Interpersonal issues are a lotlike weeds – they don’t go awayunless you root them out...”~ Roger Williams,University of Wisconsin

37

“Even though my illness was atrial to you, you did not treatme with contempt or scorn.Instead, you cared for me as ifI were an angel of God…”~Paul

Communication takes work, just like agood garden does. Even if you have thebest soil and the finest seeds, withoutconstant weeding you could lose yourwhole garden to neglect. Similarly, goodcommunication takes constant attentionand effort, even with your own familymembers. Because you are in thecaregiver role, there may be some thingsthat you or your spouse are taking forgranted. Look over the list below. Whichidea would you most like to communicateto your spouse? When the time is right,communicate that idea to your spouse.Then a week or so later share anotherone. Sharing the following thoughts withyour spouse may help pull some of theweeds that are creeping into yourcommunication.

• Tell me what helps you – be kind, bepatient, but be clear

• Let me know you appreciate specificthings I do for you

• Praise me openly and often andcriticize me privately and infrequently

• Do as much for yourself asappropriate

• Every task that you do is one lessthing for me to do

• Offer me whatever you have to offer –encourage me

• Try to imagine what it is like for me

• Allow me to give suggestions

• Learn new skills or take on new rolesaround the house and farm

• Take greater responsibility for yourself;call the doctor or pharmacy, orcomplete other tasks that may behelpful to me and the family

“You don’t even know what helpyou need… for example onenight my husband spent45 minutes telling me how towire a light that he could notreach from his wheelchair… hehad the knowledge and I had thehands. But after 45 minutes offrustration, a friend came overand fixed the wiring in 45seconds.”~ Janice McManigal

To Everything There is A Season • Communication

38

“The truest gift ofcommunication is its ability tobond people and even makecatastrophic disabilitiesconquerable.”~ Janice McManigal

Communicate to Make Your HomeLoving (12)

In their book, Love is a Decision, GarySmalley and John Trent makesuggestions for communicating love inyour home. Read the following strategies.Is there one that your family can try thisweek? Remember, changing habits andbehaviors isn’t easy! You must becommitted to positive communicationeveryday of every season.

• Be kind with a spoken word – “You’respecial to me.” Be kind with an action– a hug, a gentle touch, or holding ahand. Combine a kind word with a hugand the results can be fantastic!

• Ask your family: to define tenderness,to describe the best way to be held tofeel safe and loved, and when is thebest time to show sympathy orcomfort. After a disabling injury,communicating these key conceptscan keep a relationship“ warm andloving”

• Avoid mixing lectures and tenderness.Instead of a lecture, what a familymember needs in times of frustration isa shoulder to lean on, comfort andencouragement, and a tender touch,not a pointing finger

“We need to understand thatwhen someone is goingthrough a trial, they sometimesexpress that emotional drainingof energy through their anger,discouragement, hurt feelings,or anxiety. The last thing ahurting family member wantsfrom us is a lecture, especiallyone that’s delivered inharshness and anger.”~ Gary Smalley,President, Today’s Family

Communication • To Everything There is A Season

39

Sharing About More Than the Weather…Desired Outcome

This activity is designed to encourageyou and your spouse to share on adeeper, more intimate level.

ActivityCommunication that strengthens your relationship with your spouse and family takes

work! If you really desire better communication with your spouse, you probably shouldstart by looking at some of your own habits, attitudes, and motivations. Read through thefollowing list, and put a check by the items you need to work on. Now put a check by theareas you would like your spouse to work on.

You Spouse

Steps to Improve Your Communication:• Make listening a habit.

• Let my words be windows, not walls.

• Never blame my spouse for problems.

• Sometimes truth is best served by my silence.

• If I will change my attitude, it will change my spouse.

• When speaking to my mate, don’t manipulatebut encourage!

• I must allow freedom for differences in communicationstyles.

• Conflict is normal and useful. How I manage itdetermines my whole life pattern.

• Demonstrate listening by putting aside distractionsand focusing on the other person.

• Encouragement means specific acts of building myspouse up, it says, “I believe in you!”

• Communicate in a way that will teach my children tocommunicate during their own trials.

• Respond kindly when ill-treated. I will make it ahabit to return a kind word from an insult.

• The difference between responding and reacting is10 seconds… I wait 10 seconds, then respond.

To Everything There is A Season • Communication

Activities

40

Sharing About More Than the Weather…(continued)

AssignmentDuring the next month, set aside 30 minutes as often as possible to get beyond the

basics by sharing your feelings with each other. Use quality time when both of you arerested and when you have the fewest distractions. Use the time to talk, listen, and enjoyeach other. Remember feelings are neither right or wrong, so avoid judgments. Checkoff each day that you are able to complete the assignment. If it works, try it again.

Communication • To Everything There is A Season

1 2

8 9

15 16

22 23

29 30

3 4

10 11

17 18

24 25

31

5 6

12 13

19 20

26 27

7

14

21

28

Activities

41

Personal ThoughtsDo you remember when you were first dating and would talk until 2:00 in the

morning? Recall a favorite date and write down what made it so special.

To Everything There is A Season • Communication

Activities

42

Changing Seasons -Accept Changing Roles in YourFamily

“I remember several days lastsummer when I came into the houseannouncing, ‘I am finished with choresand I’m hungry!‘ And my husbandwould say, ‘I’ve set the table, anddinner is in the oven.’ What a laughwe had about our change in roles!”

~ Carol Hulsenbeck, Kendallville,Indiana

43To Everything There is A Season • Carol’s Story

O n January 25, 1996, lifewas dramatically changed.My husband, Martin, wasrun over by a gravity bed

wagon full of corn. I sat under the oak treewith our dog and cried as the helicopterfrom the hospital landed. We had no ideaif Martin would live at first since his injuriesincluded a crushed left shoulder, a brokenforearm, five broken ribs, a crushed pelvis,nerve damage to the right leg, andcontusion of the kidneys. Martin was inintensive care for six weeks. As Martin gotbetter, he was moved from intensive careto a regular hospital room, where he wouldstay for four months.

Martin was on a ventilator for fourweeks and kidney dialysis for three weeks.He had nine surgeries from eight differentdoctors. The time required forrehabilitation, trips to the hospital, andtrying to keep the farming going wasincredible.

Our children had to accept the factthat our family was different now andneeded help, not just with farm choresbut financially and spiritually as well. Oneday I just wanted to sit and cry, but Icouldn’t do that. Crying would take toomuch time, and I had a lot of work to do.

In the past I was just a tag-a-long forMartin. Someone to keep him company. Igrew up a city girl and had never reallydone a lot of the farm chores, but Martinand I always talked, and I basically knewwhat needed to be done. Martin and ourthree children took care of the choreswhile I worked as a preschool teacher anda full-time mom, wife, and homemaker.

All that changed when Martin wasinjured. The tasks were still there. Thechores of feeding the animals and doingthe field work all had to be done. Iimmediately took a leave of absence from

work. For the first eight weeks after theaccident I wasn’t home much. I spent daysand evenings at the hospital, sleeping atmy mother’s house nearby . The choreswere completed by relatives, neighbors,friends, and our two sons.

Martin was unable to talk for six weeks.Every decision about our farm rested onmy shoulders.

I ran the farm by phone from thehospital intensive care lounge, calling infeed orders, purchasing nitrogen forwheat, and marketing corn. At night myson and I would discuss with our volunteerfarm hands the plans for chores, field workand selling of livestock. Fortunately, I hadalways handled the books. I couldn’timagine having to learn all of that on top oftaking care of everything else.

It was not until the first of June that Itook over doing chores with the children,Hans-16, Heidi-15 and Karl-11. Now, it isnot unusual for the animals to see me withfingernail polish, jewelry, and a new haircut. From June through August, our twosons did all the summer field work. Ourdaughter did all the housework andmowed the yard.

Then one day shy of four months afterthe accident, Martin came home. It was agreat day, one we thought would nevercome. But more changes needed to bemade. The children had to help more too!Not just with farm chores, but with all thedaily tasks around home while I was takingMartin to therapy and taking care of him athome. All the care the nurses andrehabilitation professionals provided, nowneeded to be done by us. Martin had somany changes to go through as well. Hewas use to doing all the chores and nowwas at home in a wheelchair. He had toprovide instruction and direction andmanage the farm from inside.

44

It has only been about a year since theaccident and so much has changed. Butnow many things are changing back to“normal.” I have returned to teaching atthe preschool, and the kids are all inschool. This fall, with the help of a lift,Martin was able to get back on a tractorand combine for the first time in a year.

I know there will be more changes tobe made. I would just recommend thatyou accept help from others graciously.They want to help. It is, after all, part ofGod’s plan that we take care of one

another. Keep a journal of progress.Always be thankful for what you have.Take time for yourself. Keep a sense ofhumor. I remember several days lastsummer when I came into the houseannouncing, “I’m finished with chores andI’m hungry.” And my husband said, “I’veset the table, and dinner is in the oven!”What a laugh we had about our changeof roles!

~ Carol Hulsenbeck, Kendallville,Indiana

“I know there will be morechanges to be made. I wouldrecommend that you accepthelp from others graciously.”~ Carol Hulsenbeck

After a disability impacts your home, itoften becomes necessary to changeroles within your family. Overcomingstereotypes of male and female rolesmay be vital to relieving burdens on thefamily and marriage. Rethink family,household, and farm chores. As a family,discuss: Which tasks are essential? Cansome tasks be eliminated? Can sometasks be postponed? What new taskscan each family member learn? Who isthe best person to do these tasks? Theentire family needs to rethink who can doeach task best, because of this newseason in your family’s life.Communication is a key element insuccessfully “changing roles.”

“So much has changed. Butnow so many things arechanging back to normal.”~ Carol Hulsenbeck

Example of Changing RolesAs you read the story of Martin and

Carol Hulsenbeck, you may have beenstruck with the many changes they had tomake. These included: changes in jobresponsibilities, changes in who did thefarm chores, and changes in who did the

Accept Changing Roles • To Everything There is A Season

Accept Changing Roles

45

cooking and cleaning. With changescomes the need to learn new skills and toset realistic expectations. There will besome uncomfortable moments, morethan one burnt meal and many farmchores completely overlooked. To keepyour farm and household successfulmake the role changes with the sense ofhumor and determination that theHulsenbecks used!

To help with the changing roles, involveyour care receiver in as many meaningfultasks as possible. This provides a positivefeeling of self-worth to him or her andreduces the caregiver’s burden. Begin withjobs that can be accomplishedsuccessfully. Avoid unattainable tasks thatcould lead to more frustration orunnecessary failures.

I have returned to teaching atthe preschool, and the kids areall in school. This fall, with thehelp of a lift, Martin was able toget back on a tractor andcombine for the first time in ayear. I know there will be morechanges to be made.~ Carol Hulsenbeck

Changing Roles for theCaregiver Who WorksOff the Farm

An increasing number of farm womenwork off the farm in order to supplementfarm income and often to gain access toaffordable health care insurance. When adisability occurs this source of incomeand the health plan may become evenmore important to the family. However,there will also be changes that will needto be made and expectations to fulfill

from both the family and employer. Thefollowing are some tips for the caregiverwho is trying to maintain a job, keep ahome in order, complete farm chores andhandle the tasks of a caregiver.

• Focus on what is really important toyour family

• Establish priorities for each areaof your life (home, farm, work,church, etc.)

• Talk about your concerns andexpectations with the entire family

• Schedule “telephone time” at work totalk with your family and friends

• Talk with your employer about howyour situation may impact yourschedule and your performance

• Consider some form of flexible workhours or the possibility of doing workat home

• Seek support and assistance fromothers, including other caregivers

• Explore techniques that improve yourefficiency, but do not expect toaccomplish everything you did before!

“The changes in my journeykeep unfolding like the petalsof my rose bush. Who I am –really am – keeps changing.But in a nice sort of way.Trusting, obeying, submitting –I am finding my life. Like thatrose, I am a bud beingtransformed from glory toglory.”~ Joni Eareckson Tada, author ofChoices and Changes

To Everything There is A Season • Accept Changing Roles

46

Changing Roles During Changing SeasonsDesired Outcome

This activity will help you focus on thedifferent roles that members of the familyhave traditionally played and how they

ActivityGather the family around the kitchen table. Give each person a pad of paper

and a pen.

Across the top of the paper write out three headings:

Mom/Wife Dad/Husband ChildrenBefore After Before After Before After

Write out the main responsibilities and chores each family member did beforethe disability. After everyone has completed their list, read each list aloud. Whatare the similarities and differences? Now write down the responsibilities after thedisability. Discuss the following questions:

• What roles have changed?• What roles still need to change?• Who is best suited for each particular task?• Who can learn to do a task that needs to be completed?• What chores can be eliminated?• What tasks can be done less frequently?

AssignmentFirst, thank each family member for

what they have contributed. Based onyour family discussion, assign the tasksdiscussed and have a trial period for aweek or so and see if the tasks are beingcompleted. Talk about what happened.Then reassign the tasks as needed.Remind everyone you are on the same

team. At this particular time some rolechanges may need to be made to keepthe home and farm operating smoothly. Ifyou think about it, those who succeed inlife are those who learn to change withthe different roles that they face throughthe seasons of life.

Accept Changing Roles • To Everything There is A Season

may change due to the impact of adisability. It will also assist in identifyingtasks that are less important and can beeliminated or done less frequently.

Activities

47

Personal ThoughtsWrite down your feelings about what your changing responsibilities have meant to

you.

Be specific, list any new responsibilities that you actually enjoy doing.

1.

2.

3.

4.

5.

Are there new responsibilities that you don’t enjoy?

1.

2.

3.

4.

5.

To Everything There is A Season • Accept Changing Roles

Activities

48

Hugging in the Rain -Thoughts for Childrenwith Special Needs

“When Robin was first placed in myarms as an infant I marveled at howcute she was. Now Robin is 11, andI still marvel at what a completelybeautiful person she is, both insideand out.”

~ Becky Ehresman, Brookston, Indiana

49

I sat down with a pencil and apiece of paper last year andstarted to write in a “stream ofthought” fashion: “When Robin was

first placed in my arms as an infant, Imarveled at how cute she was. NowRobin is 11, and I still marvel at what acompletely beautiful person she is, bothinside and out.” This line of thought wasin response to a particularly difficult dayfor me and my daughter. She wasentering puberty, a difficult time for anykid. I am so glad that Robin had alreadydeveloped a positive self image and astrong network of caring and supportivepeople; a support system that has seenus through some pretty tough times.

Tough times come in all shapes andsizes throughout a lifetime. Being able toproblem-solve rather than surrender;being able to establish and maintain aholistic balance in life; building courageby never fearing to try; taking due pride inall successes, great and small. These arevaluable weapons in the war againstdespair and watching a much loved childbattle with severe physical disability iscertainly fertile ground for despair. Thevery foundation of my ability to regard mychild with love and optimism is built on afirm belief in a loving God, Jehovah, withwhom I talk daily regarding my fears, myhopes and my gratitude for being chosento parent this special child.

The nicest thing that I can do formyself is recognize and accept myhumanity. I can’t fix all problems; I can’t

be perfectly understanding all the time,and I may be a bit difficult for Robin’sschool system to deal with from time totime. But hey, it’s O.K.!!!!

I think that the best thing that I can dofor my daughter is to be a role modelbased on the strength of integrity,courage, and deep, abiding love. I needto remember to treat her in an ageappropriate manner and be mindful ofher emotional and intellectual normalcy.Well…whoever said it would be easy?

~ Becky Ehresman, Parent,Brookston, Indiana

To Everything There is A Season • Becky’s Story

50

“I think that the best thing that Ican do for my daughter is to bea role model based on thestrength of integrity, courage,and deep, abiding love”.~ Becky Ehresman

Another group that has additionalneeds is the family with a child with adisability. Whether the child’s disabilityresults from an injury or illness, somethings remain the same – the disabilityaffects the parents, siblings,grandparents, and friends. You will needto find as much help and assistance aspossible!

Although the most common responseto being told that your child has a severedisability is shock, disbelief, guilt, and asense of loss, some parents choose torespond differently. Some of your family’sclosest times and greatest joys can bethe result of spending time together withyour child who is disabled. Familymembers learn to work togethereffectively and find a special bonding,while other siblings may become moremature and caring.

When a child has a disability, thedevelopment of a positive self-conceptmay be difficult. Parents are usually soexhausted from the daily routine of lifting,helping, therapy, giving medication, andproviding care that they sometimes forgetactivities necessary to develop a child’spositive self-esteem.

If you and your family accept,embrace, and show unconditional lovefor the child with a disability, the child’sself-concept tends to be good. The

following suggestions will foster apositive self-concept in your child.

• Focus on the positive aspects of yourchild’s body

• Focus on your child’s positivetemperament traits

• Focus on the skills and abilities yourchild has

• Look beyond the disability and acceptyour child just as he or she is (13)

“I am so glad that Robin hadalready developed a positiveself image and a strongnetwork of caring andsupportive people; a supportsystem that has seen usthrough some pretty toughtimes.”~ Becky Ehresman

Life on the farm can be a great place tobuild positive self-esteem. Spending timearound plants and animals providestherapeutic benefits for children. A childsitting astride a horse, for example,experiences a sense of freedom andaccomplishment that often cannot beduplicated through any other activity.Therapeutic horseback riding has shownbenefits in improved general health andwell being. Caring for livestock, having a4-H livestock project, or even having aservice animal can all benefit children withdisabilities. Gardening, even if done incontainers, can demonstrate to children themiracle of life as it grows through itsseasons. A child’s self-concept can benefitfrom completing daily responsibilitiesaround the farm.

Thoughts for Children • To Everything There is A Season

Thoughts for Children

51

Seeds That Will Help Your ChildGrow into a Healthy Adult (14)

There are many seeds that you canplant in your child’s life that will help themgrow and mature into a healthy adult.Read the following list for “seeds” youcan sow in your child during this seasonof their life.

• Balance – There’s more to life thanyour child’s disability. Find time forfamily fun and recreation

• Communication – Spend timelistening to your children. Focus onunderstanding each other

• Fun – Find family routines that are funfor everyone (Friday night-pizza night)

• Unity – Commit to keeping familyunity by sharing farm chores,responsibilities, and looking at the“bright side” of situations

• Overcoming – Learn new ways andidentify new resources to assist you inovercoming barriers

• Friends – Maintain strongrelationships with old friends. Childrenneed relationships with other caringadults

• Sharing – Teach your children toshare their time and resources withothers

• Service – Encourage your children toparticipate in community serviceactivities

• Goals – Help your children to setrealistic goals

• Involvement – No one knows yourchild better than you. Develop qualityrelationships with the physicians andmedical caregivers and share yourchild’s medical information that will behelpful for the best possible care. Asklots of questions including, “Whatbenefit will my child receive from thisprocedure?”

• Keep these thoughts in mind – Don’tsecond guess yourself by asking “whatif?” Some things are out of yourcontrol; accept this situation instead ofbeating yourself up. When things arespinning out of control, remember youdon’t have to go through this alone,ask for help!

Resources for ChildrenThere are many resources for children

with disabilities. A few unique resources forfarm children include, A Perfect Fit: 4-HInvolvement, Bridging Horizons – An FFAAdvisor’s Guide to Involvement forMembers with Disabilities, and Backyardsand Butterflies – Ways to Include Childrenwith Disabilities in Outdoor Activities (seeResource Section). All of these resourcesprovide practical ways to include youth withdisabilities in school and extracurricularactivities. Another source is a compre-hensive textbook, Children with Disabilities– A Medical Primer (Batshaw and Perret,Brookes Publishing). This text includestopics on home care, sources of funding,types of medical technology, caring andcoping for the family of a child withdisabilities, and additional chapters onmore than ten different disabilities. Visit

To Everything There is A Season • Thoughts for Children

52

your local library and browse through theresources and books available to help andencourage you.

There are also many communitygroups for parents of children withdisabilities. Ask your pediatrician, specialeducation teacher, or county healthdepartment for additional resources.Consider seeking help from inhome careagencies, visiting nurses, andrehabilitation counselors. Some groupswill be informal and advertised only byword of mouth, while others can be foundby contacting agencies listed in theYellow Pages. As a parent or guardian ofa child with a disability, you must seek

and develop as many partners in raisingyour son or daughter as you can.

“Being able to problem-solverather than surrender; beingable to establish and maintaina holistic balance in life;building courage by neverfearing to try; taking due pridein all successes, great andsmall. These are valuableweapons in the war againstdespair.”~ Becky Ehresman, Parent

Hugging in the RainDesired Outcome

This activity will prove without a doubtthat a hug can make even a rainy dayseem brighter and warmer.

ActivityImagine the last time someone who you really care about gave you a great big

bear hug. How long did the effects last?

_____ 1 minute

_____ 1 hour

_____ 1 week

_____ I still remember it!

Thoughts for Children • To Everything There is A Season

Activities

53

Hugging is healthy: it helps thebody’s immune system, it curesdepression, it reduces stress, it inducessleep, it’s rejuvenating, and hugging isnothing less than a miracle drug.

Hugging is all natural: it is organic,naturally sweet, no preservatives, noarti•cial ingredients, and 100%wholesome.

Hugging is practically perfect: thereare no movable parts, no batteries towear out, low energy consumption, highenergy yield, non-taxable, and fullyrefundable.

AssignmentStart with someone you care about

and surprise them with a “reckless act ofkindness” – give them a hug. Don’t sayanything. Don’t expect anything.

Are you aware hugging is good for you?Just give unselfishly. Make a list of atleast five people that you will give aspecial hug during the next two weeks.

1.

2.

3.

4.

5.

Caution! Some folks are fearful of ahug. Respect those who want to maintaintheir “own space.”

Personal ThoughtsCan you remember a time when you picked up a hurt child and soothed their pain

and you were rewarded with a big bear hug? How did it make you feel?

To Everything There is A Season • Thoughts for Children

Activities

54

Spring is in the Air -Teamwork and Laughter

“Love of family, joy of living, faith inGod, trust in each other, and respectfor the bond of family teamwork wereproved to us…”

~ Marilyn Shankster,Silver Lake, Indiana

55

Carl was 32 when injuries in acar accident left him a T-12paraplegic. At the time, wehad eight young children to

raise, ranging in age from nine months toeleven years.

Carl tried not to let the injury slow himdown much. A teacher during the schoolyear, Carl also operated a ditching andbackhoe service. He always says thefamily was a great help to him both in thebusiness and in his daily routine. Today,the oldest son is married, and the nexteldest boy is planning to assume part ofthe family’s business. Here’s how ourfamily recalls one event shortly after theirfather was injured…

Six months after Dad’s injury, wedecided to go camping. So onto ourflatbed truck went all the supplies. At thelast moment we realized we hadn’tloaded one important item – Dad’s four-wheeler, called “Sam.” Off came three–fourths of our load to make room for“Sam.” Then someone noticed “Sam” hada flat tire. So off to the tire shop we went– and another removal of half the load toget the tire repaired.

Finally, we were off to the campingsite, a drive of some 20 miles. At thecampground, the attendant was friendly,but informed us that it was illegal tooperate “Sam” in the park without alicense. (Later, to our pleasure, anexception was granted.) Three tents wereset up by Mom and the boys, with Dad’sexasperating instructions. As soon as itlooked like Mom could finish thingsbefore dark, the boys and Dad dashedoff to check out the fishing spot.

Since no block-and-tackle wasavailable, a human chain was set up toskid Dad and his wheelchair down a gullyto the bank. A dead log was set to keephim from rolling into the lake. Fishing, asit turned out, was TERRIBLE! The familyonly snagged one fish in three days! Wasit worth it? Definitely. Here’s what welearned.

• Teamwork is essential

• Courage is rewarded with satisfaction

• Determination reaps results

• Ingenuity is better than strength

• Love of family, joy of living, faith inGod, trust in each other, and respectfor the bond of family teamwork wereproved to us!

~ Marilyn Shankster,Silver Lake, Indiana

To Everything There is A Season • Marilyn’s Story

56

“To us, what matters is anindividual. To get to love theperson, we must come in closecontact with him. We ourselvesfeel that what we are doing is adrop in the ocean. But if thatdrop was not in the ocean, Ithink the ocean will be lessbecause of that missing drop.”~ Mother Teresa

TeamworkTeamwork can make the days easier

and the work and chores more enjoyable.Some of the best times come when youare working together as a team. It hasbeen said it is easy to get the players fora team, the tough part is getting them toplay together. That can be true of yourfamily as well!

Helping your family work together as ateam is definitely a key to helping you, asthe caregiver, reduce some of the stressthat you are facing. A few ideas that canhelp your family work more effectively asa team are:

• Hold regular family meetings todiscuss chores, answer questions, andsolve problems

• Honestly respond to questions thatyour children may have about thefarm, the family or the disability

• Plan work according to each person’sinterest and have family members helpone another

• Plan for regular fun time as a family.Maybe you all love playing CrazyEights or basketball. Find thatcommon fun activity that fosters unityin your family

Next time you have an unpleasantchore to do, get your children singingalong with you. It will make the task morepleasant and the time to go by quicker.There’s an old song that goes somethinglike this, “There’s nothing better thanwhen family works together, when familyworks together, and we are having fun!”

“Teamwork is essential”.~ Marilyn Shankster

LaughterAllow yourself the pleasure of

laughing. Read happy books and spendtime with happy people. Laughter is notonly contagious, it’s good for your health.Start a hobby that brings a smile to yourface. Maybe it’s having a fish tank,planting flowers, painting or learningwoodworking. Choose a hobby thatbrings you joy. Take time to think of threesimple things that you can do that willmake you and your family laugh. Committo doing at least one of these every day.

Teamwork and Laughter • To Everything There is A Season

Teamwork and Laughter

57

Cultivate LaughterThe first sounds that babies make

when they are born are cries of fear anddiscomfort – not laughs or giggles.Laughter needs to be cultivated andtended just like a flower bed. Encourageyour children to laugh on a regular basiseven if it takes a little tickling.

Board games, hide-and-seek, pillowfights and funny faces will usually crackthe stiffest face and generate those deepbelly laughs that have such a healinginfluence.

Sources of Humor (15)

Sources of humor are as close as yourlocal library, video store or grocery. Pickone of the following resources and get agood belly laugh this week!

“We learned about theimportance of the love of familyand the joy of living...”~ Marilyn Shankster

BooksMurphy’s Law – Arthur Bloch

The Grass is Always Greener Over theSeptic Tank – Erma Bombeck

Dr. Burns Prescription for Happiness –George Burns

The Fourth Garfield Treasury – Jim Davis

How to Eat Like a Child and OtherLessons in Not Being a Grown-up –Delia Ephron

How to Make Yourself Miserable – DanGreenburg

Shoot Low, Boys – They’re RidingShetland Ponies – Lewis Grizzard

Momma Get the Hammer – There is aFly on Pappas Head – BarbaraJohnson

Put a Geranium in Your Hat and BeHappy – Barbara Johnson

Mouse Breath Conformity and OtherSocial Ills – Jonathan Winters

Lake Wobegon Days – Garrison Keillor

Please Don’t Eat the Daises – Jean Kern

Audio CassettesThe Ambassador of Goodwill – Jerry

Clower

The Best of Bill Cosby – Bill Cosby

The Best of W.C. Fields – W.C. Fields

The Works – Groucho Marx

News from Lake Wobegon – GarrisonKeillor

Crackin’ Up – Ray Stevens

VideoAirplane

Back to the Future

Blazing Saddles

Making Mr. Right

The Return of the Pink Panther

The Making of the Stooges

The Films of Laurel and Hardy

“A cheerful heart is goodmedicine, but a crushed spiritdries up the bones.”~ King Solomon

To Everything There is A Season • Teamwork and Laughter

58

Spring is in the AirDesired Outcome

Teamwork and laughter are asrefreshing as a cool summer shower.This activity will help you laugh and worktogether as a team again.

ActivityHave you ever seen a sad person

square dancing? Obtain your favoritesquare dancing music. Clear the floor inyour living room, shop or barn and bringthe whole family in for a good old-fashioned square dance, a few hollersand some hand clapping. The childrenwill love it, you will laugh together, andeven though you may not be able to“dance” with your disability... make thebest attempt you can or you can be thecaller!

Remember singing in the rain, dancingin puddles, or whistling and singing with acarefree heart can be refreshing for theentire family.

Teamwork – A Lesson in Thinkingof Others (16)

Parents, this supplemental activity isfor you. You’re responsible for setting theclimate in your home just as a coachcultivates a winning climate for a team.As the coaches on your team, askyourself:

• What am I doing to make acontribution?

• Do I encourage time for fun, relaxationand privacy for my family?

• Do I really need the help I am askingfor? Could it wait? Is it necessary?

• Do I let my family know that Iappreciate the routine tasks that helpme?

• Do I take the time for simplecourtesies like saying “please andthank-you”?

• Have I planned something to make myfamily laugh or feel special?

• Do I help every member of the familyfeel a part of the team?

AssignmentOver the next week assess the

amount of laughter that occurs in yourhome. Is there enough? Would you liketo hear more?

If you would like to hear morelaughter, select two or three activitiesfrom the suggestions provided and see ifyou can make it happen. Bring back thelaughter and team spirit into your homeand spring into life!

Teamwork and Laughter • To Everything There is A Season

Activities

59

Personal ThoughtsHow has the impact of disability effected the way your family works as a team or

laughs together? In what positive ways?

To Everything There is A Season • Teamwork and Laughter

Activities

60

A Time To Bear Fruit -Healing Through Service

“Even though there are many thingsBob can no longer do physically onour farm, his years of experience andknow-how as well as his emotionalsupport are a real asset to us.”

~ Penny Piper,Davenport, Washington

61

Bob has a T1 spinal cord injury with Syringomyelia. Penny Piper, Bob’s wife writes these encouraging thoughts to her

husband.

As a caregiver for the past 11 years, Ihave written down some things that cameto mind as I think about Bob, whom Iassist as a wife and caregiver.

I feel bad that this has happened tous. I’m so glad that you still want to be apart of what is happening on our farm. Istill want you to be part of it; you are thebest parts gopher and provide the bestmoral support possible. Your son and Iappreciate that! Even though there aremany things you are no longer able to dophysically on our farm, your years ofexperience and know-how as well asyour emotional support are a real assetto us.

We’ll make the best of whateverhappens. We’ll plan ahead when we can,we’ll take one day (or hour) at a timewhen we have to. Both of us have gooddays and bad days. I’ll do my best to beunderstanding and hope you will too. Istill love you. Keep smiling – it makes usall feel good.

You are my sounding board when I amdiscouraged or frustrated and I love youfor allowing me to vent! You are also mycheering section and are quick to praisewhen things are going well! Thank youfor being appreciative of our help and foroccasionally telling us that youappreciate all we do.

On the days that your day-to-day carebegins to get to me, you seem to sense it– then pick just the right moment to say,“Thank you, honey” or “Gee, I love you.”And that puts it all back into perspectivefor me.

We also have learned over the yearswhen we should keep our mouths shutand not say something we might regret.Hurt feelings can take a long time tomend – sometimes they don’t – but asimple “I’m sorry” will help. We’ve alluttered those words more than once –we’ve all had our moments. Thosemoments are behind us, but there willprobably be more, we aren’t perfect.

Time helps to heal many differenttypes of wounds. Humor usually makes itall seem bearable – that and a goodnight’s sleep! We do a lot of goodnatured joking, and it really helps us.

For instance, we were all dressed up,on our way to dinner to celebrate our30th wedding anniversary. It was pouringrain, and we were driving the van downthe highway about 55 mph, when theelectric motor on the wheelchair liftshorted out and filled the van with smoke– we won’t go into the whole story – but itwas not a fun evening! Several monthswent by before we were able to just lookat the humorous aspect of our evening –but we’re okay, and are able to laughabout it now.

Our lives changed when my husbandbecame a paraplegic. Our lives hadalready changed when our son died in acar accident at age 17. Other people hadsurvived such changes, so I knew wewould too – it hasn’t been easy – but Ifeel like we’ve made it!

~ Penny Piper,Davenport, Washington

To Everything There is A Season • Penny’s Story

62

Giving Encouragement

“One of the highest of humanduties is the duty ofencouragement… Many a timea word of praise or thanks orappreciation or cheer has kepta man on his feet.”~ William Barclay

As you read Penny and Bob Pipersstory there is a common thread of mutualencouragement to one another. Whohasn’t felt better from receiving onesimple compliment or encouraging word.The exciting news is that anyone candecide to become an encourager toothers. Maybe this will be the way youdecide to serve others and forget aboutyourself. You won’t have to look far forsomeone who needs encouragement andwith a little practice you may be known asthe most encouraging person in yourcommunity!

“You are also my cheeringsection and are quick to praisewhen things are going well!”~ Penny Piper

Serving OthersThe story is told of “The Keeper of the

Spring,“ a quiet forest dweller who livedhigh in the mountains above the village.The old man had been hired to clean thestreams up in the mountains that fed thebeautiful cool spring flowing into thevillage. Year after year he faithfully andsilently removed all the debris and silt

that would otherwise contaminate themountain stream. The crystal clearwaters made the village popular forvacationers who enjoyed seeing thebeautiful stream, swans and the naturallyirrigated farmland.

Years passed and at a town meetingthe accountant decided to fire this oldman who was never seen doing his job.The town council decided he was nolonger needed. In only a few short weeksafter the man was relieved of his duties,the sparkling stream became discoloredand full of debris. The town councilquickly called an emergency meeting tohire back “the keeper of the spring.” Themountain stream was restored and all thevillage people where happy once again.(17)

What “the keeper of the spring” meantto his village, you mean to your town orcommunity. Even if your acts of servicego unseen, your contribution helpsimprove your town. Just like the villagethat could not live without this old mandoing such a small task, neither can yourcommunity be the same without youusing your talents, gifts and resources.

You may not consider yourself aservant or having something to give.However, service can be as simple astaking the time to listen to anotherperson. A sincere compassion for othersor taking the time to show a specialkindness or gentleness to one in need isa great way to serve. Also, taking thetime to say an encouraging word canchange an entire persons life.

Healing Through Service • To Everything There is A Season

Healing Through Service

63

“Love is a fruit always inseason.”~ Mother Teresa

A Decision to Serve –Thoughts from Bob Piper

Since my son died at age 17 in anauto accident I have tried to channel mythoughts to positive ways of helpingothers. When life’s events leave you in awheelchair, it makes you assess how youhave treated people, how people havetreated you, how you want to proceed,and whom you want to ask along to helpyou. Simplified this means – I still want tobe a nice guy and treat others the best Ican!

I can’t physically do some farmchores, so I have used the following aspositive ways to serve others.

• Talk with newly injured patients at ourSt. Luke’s Rehabilitation Institute

• Share my common sense farmbackground as a board member of ourIndependent Living Center

• Take on projects such as making apublic service clip on the ADA for localtelevision

• Tell others what people canaccomplish with a physical challenge

• Assist with the awareness that personswith physical challenges can golf

• Give advice to a local pontoon boatbuilder for adapting his product; hewas awarded a grant!

• Help start a CAST program locally(Catch a Special Thrill) to provide aday of fishing for children

• Volunteer to give common sense ADAadaptations for our Lincoln CountyMental Health, Alcohol Drug Center,and Extension office

• Volunteer to input computerinformation at the local SoilConservation office

• Talk to numerous people aboutadapting farm operations after aninjury or illness

• Assist our Governor’s Committee onDisability and Education to hold localmeetings

• Take a Strobe light, a fluorescent vest,and a shovel to emphasize the needfor snow removal on curb cuts in mywheelchair, one winter day

• Assist a local pharmacist making hisfront doors easy to use from awheelchair so he could win aninsurance contract

• Assist with a slide presentation at anAgrAbility Workshop!

• Explore many ideas to maintain myphysical and mental independence!

• Maintain an upbeat and active attitudeto help my wife and son

To Everything There is A Season • Healing Through Service

64

ActivityOne way to take the focus off your

own needs is to start to give and serveothers. There are many simple,inexpensive ways to serve. Servingothers not only brings satisfaction andjoy, but also it encourages the one youare serving. In addition, it will help youfrom wallowing in self-pity or dwelling onyourself.

A Time To Bear FruitDesired Outcome

This activity is designed to get yourfocus off yourself and onto others.Whether you are the caregiver or thecare receiver, it is easy to be consumedwith self-centered thoughts that lead intoa negative cycle of thinking only of yourown needs, hurts or pain. Begin thinkingof others today.

AssignmentEither by yourself or with your spouse develop a list of names of people or

groups who could benefit from some type of help. You can encourage your spouseas well as others! For example, you may start by sending cards and letters toothers who need encouragement in your community. Start a “telephone service” tocall shut-ins, children who may be home alone or others who need someone totalk to. A short phone call, a card, a bag of groceries or a flower can go a long waytowards brightening somone’s day. A little paperback book titled, How To MakeSomeone’s Day – 365 Ways to Show You Care, is an inexpensive book with thepurpose of helping you “scatter seeds of joy” (K. Peel, Word Publishing, 1994).Buy one this week and try some of the simple ideas to help someone else. In thespace below, make a list of those you plan to serve in some way during thecoming ten days.

A Time To Bear FruitName What they need How I can help Date

Healing Through Service • To Everything There is A Season

Activities

65

Personal ThoughtsReflect on a time when you have wholeheartedly served someone else. How did you

feel?

Consider a time that someone wholeheartedly served you. How did you feel?

To Everything There is A Season • Healing Through Service

Activities

66 To Everything There is A Season

“Life is not a problem to be solved,but a gift to be enjoyed.”

~ Mrs. L. Faulstich,Monterey, Indiana

Resources -Tools for Caregivers

67

Assistive devices can be very helpfulfor the caregiver. Adaptive equipment,methods or modified practices do notneed to be expensive! Many devices caneven be homemade or constructedlocally. An especially helpful book forcaregivers for low-cost solutions is EasyThings to Make… to Make Things Easy-Hundreds of “how-to” suggestions forolder people who have physicallimitations (see Resource Section). Localdisability organizations can also assistyou in devising low-cost, practicalsolutions. For example:

• There are plans for constructingaccessible ramps for the home thatcan be built by volunteers, such asYoung Farmers, a Scout Troop, or anFFA Chapter

• A low-cost intercom system can beinstalled to save steps and energyinstead of making repeated trips to thebedroom or living room to check theneeds of an individual

• There are equipment loan programsadministered by local disabilityorganizations such as the Easter SealSociety, senior centers, and localcommunity groups that can help inobtaining equipment

• Services are available such asaccessible transportation or “meals onwheels” which reduce the need totravel

“The family is the mostimportant resource in assistingan individual return to a normallifestyle.”

Caregiving can be physically andmentally draining. The demands absorb aconsiderable amount of your time.Adaptive devices or practices can helpmake a caregiver more efficient and lessfatigued.

The following section providespossible assistive devices to help you inyour home and work.

TransportationWheelchair Transport

A rear-mounted wheelchair transportlift or rack allows a scooter or wheelchairto be transported without using cargospace.

Portable RampsLightweight portable ramps can make

many locations accessible.

Vehicle LiftsPowered devices which lift a

wheelchair and its user into a van withoutthe assistance of others.

Transfers and LiftingLifting Systems

A wide range of electrically ormanually powered devices lift users andeliminate difficult transfers. Lift systemscan be purchased, which allowindependent lifting from bed to bathroom,wheelchair to bed, and otherapplications.

Transfer BoardsWood or plastic boards used as a

bridge for transferring over a distance ofone to two feet. Example: wheelchair tocar seat.

To Everything There is A Season

Assistive Devices

68

Stair-ClimbingStair Transporter

Small, tracked vehicles allow a user toclimb and descend stairs.

Stair LiftA chair permanently mounted on a

track which moves the user up and downstairs.

Bathroom NeedsBathtub Lift

A lift in the bathtub facilitates transfersand operates using water pressure or amechanical lift.

Commode LiftsToilet seats can elevate users to a

standing position.

Twin Shower HeadAn extendible arm on the shower head

allows the user to position the head.

Hand-held ShowerThis shower head is on a slide bar

mount which the user can position at anychosen height along a vertical slide bar.

Roll-in ShowersAllows wheelchair user to roll into

shower or for those who have difficultystepping over the side of a bathtub.

Anti-Scald MonitorsRegulates water temperature in the

shower.

Walk-in BathtubLarge volume tubs with a swinging

seal-tight door and grab handles allow auser to walk in for bathing or therapy.

Shower & ToiletCombination shower and toilet

compartment is good for maximum useof area and reduces transfers.

Communication DevicesCellular Phone, CB, FM Two-wayRadios, Intercoms, and Bells

Having a proper communicationdevice and a secondary or backupsystem is essential to reducing thepotential of risk or injury.

Speech Output Communication AidDevices that allow users to type words

or select pictures to verbally expressthemselves through computerized voiceoutput.

Page Turning DeviceAutomatically turns book pages

through an electric switch activated bythe user.

Conveniences in the HomeDoor Levers

Levers replace round door handlesand improve access.

Swing Away HingesHinges that allow increased access

width by simple hinge replacement.

Pocket DoorsSliding doors reduce obstructions and

increase access.

Swing Up Cabinet DoorsReduce the possibility of colliding with

protruding doors for persons with visualimpairments.

Home PagerA device that signals the caregiver

when an individual crosses an infraredbeam.

Auto Door OpenerUnits are activated by remote control

to open doors for easy access.

Portable RampsLightweight portable ramps can make

almost any room or building accessible topersons using a wheelchair.

To Everything There is A Season

69

Recliner Seat-Lift ChairsComfortable chairs that use a lift under

the seat cushion to elevate the user to astanding position.

Reaching AidsTrigger activated tool that allows user

to pick up items that are ordinarily out ofreach.

Jar & Bottle OpenerAids that allow the easy removal of the

tops of jars or bottles. Can be eitherpowered or stationary nonpowered unit.

Home SafetySmoke Detector

Alerts someone of smoke byproducing an audible alarm or byactivating a strobe light for those with ahearing impairment.

Motion DetectorMotion sensors are mounted at

strategic locations to alert you by aflashing light or audible signal thatsomeone has arrived.

Strobe LightActivated by an alarm, doorbell,

telephone or baby crying, the strobe lightflashes to alert you.

Visual NotificationUtilizing a flashing lamp, bed shaker

and panel of lights, this system alerts youwhen the telephone rings, there is aknock at the door, an alarm goes off, andwhen the smoke detector or other audioalarm system is activated.

Emergency Escape PlanThe value of a well thought out family

escape plan in case of fire or other crisiscannot be underestimated!

First Aid KitEvery home should be equipped with a

well stocked first-aid kit.

Fire ExtinguisherABC fire extinguishers should be

located in the kitchen, laundry room,garage and furnace area.

ComputersHome Design

Software for redesign ideas. Allowsuser to map out changes before makingpermanent modifications.

Computer TTComputer software and an internal

modem transform your computer into atext telephone (TT).

Computer ScannersScanners transfer written and

photographic materials into the computerfor further processing.

Software and DevicesHundreds of software programs and

assistive devices are available. Theseassist both the person with the disabilityand the caregiver to activate a computerto be: voice activated, print large print orBraille, or serve as environmentalcontrols.

Voice ActivatedThere are hardware and software

packages available that read aloud orrespond to voice commands.

Video MagnifiersElectronic system that enlarges text on

a computer screen for easier reading.

Companion DogWorking Dog

Common breeds such as BorderCollie, Australian Shepherd, and Red/Blue Heelers can provide assistance to aperson with a disability.

Service DogDogs of several breeds guide and

retrieve items for owners.

To Everything There is A Season

70

The primary funding sources forassistive technology can usually becategorized into either medical orvocational sources. Secondary sourcesinclude private or alternative funding. Apartial listing of organizations that providefunding for or assistance in obtainingassistive technology include:

Medical Sources• Private Insurance

• Medicaid

• Medicaid Waiver Services

• Medicare

• Bureau of Developmental Disabilities

Vocational Resources• Vocational Rehabilitation Services

• Impairment Related Work Expenses

• Plan to Achieve Self Support

• Social Security

Disability Specific Organizations• Easter Seal Society

• Muscular Dystrophy Foundation

• United Cerebral Palsy

• Multiple Sclerosis Society

• Paralyzed Veterans of America

Local Service OrganizationsElks, Moose, Lions, Rotary, Kiwanis,

American Legion, Veterans groups,Foundations, Local trust, Churches, andCorporations.

Other Organizations that Assistwith Financial ConcernsInstitute of Certified Financial Planners3801 E. Florida Avenue, Suite 708Denver, CO 80210303-759-4900

Medicare Consumer LineP.O. Box 5798Timonium, MD 21094410-252-5310

National Insurance Consumer Helpline110 William St.New York, NY 10038800-942-4242

To Everything There is A Season

Funding Options

71

Aids to Daily Living CataloguesEnrichments .............................................................................................. 800-323-5547

Independent Living Aids .............................................................................800-537-2118

Ingenuity Inspiring Independence ............................................................. 800-645-5272

Rifton ......................................................................................................... 800-374-3886

Sammons-Preston .................................................................................... 800-323-5547

Sears “Home Health Care” ....................................................................... 800-326-1750

Hand Tools & EquipmentA.M. Leonard, Inc...................................................................................... 800-543-8955

Gemplers .................................................................................................. 800-332-6744

Hard-To-Find Tools Brookstone ................................................................ 800-846-3000

Northern Tool & Equipment ....................................................................... 800-221-0516

Ben Meadows Company ........................................................................... 800-241-6401

Residential HardwareClairson International ................................................................................ 800-874-0008

Van Duerr Industries ................................................................................. 800-497-2003

Patient Aid EquipmentGuardian ................................................................................................... 800-255-5022

Invacare .................................................................................................... 866-533-5319

Automatic Door OpenersHorton Automatics ..................................................................................... 800-531-3111

Power Access Corporation ....................................................................... 800-344-0088

RampsUniversal Ramp Systems.......................................................................... 800-648-3696

Van Duerr-Portable Ramps ....................................................................... 800-497-2003

Kitchen CabinetsMerillat ....................................................................................................... 800-771-2158

American Standard ................................................................................... 800-442-1902

To Everything There is A Season

Phone Numbers*

* Adapted from the Missouri AgrAbility project

72

Vertical Wheelchair LiftsConcord Elevator .......................................................................................800-661-5112

Cheney/American Stairglide ..................................................................... 800-925-3100

National Wheel-O-Vator Co., Inc. ............................................................. 800-551-9095

Wheelchair Stair LiftsGaraventa Ltd. .......................................................................................... 800-663-6556

Savaria, Inc. .............................................................................................. 800-931-5655

Stair Lift ChairsBruno Independent Living Aids ................................................................. 800-882-8183

Inclinator Co. of America........................................................................... 717-234-8065

Communication ProductsHITEC Group International ....................................................................... 800-288-8303

Innocomp .................................................................................................. 800-382-8622

Product Information/Research SourcesABLEDATA (Database Searches) ............................................................. 800-227-0216

JAN-Job Accommodation Network ........................................................... 800-526-7234

Other Disability Related CataloguesJC Penney................................................................................................. 800-222-6161

LC Technologies ....................................................................................... 800-393-4293

Shop at Home ........................................................................................... 866-366-4010

The Complete Product Guide for People with Disabilities ........................ 800-952-2248

Maxiaids .................................................................................................... 800-522-6294

Hamilton’s Assistive Technology Service .................................................. 800-349-2499

To Everything There is A Season

73

ADOPT a Farm Family of America, Inc.P. O. Box BSikeston, MO 63801-0936573-472-46731-800-472-4674

The Cancer Care Counseling Line1180 Avenue of the AmericasNew York, NY 100361-800-813-HOPE

The Compassionate FriendsP.O. Box 3696Oak Brook, IL 60522-3696630-990-00101-877-969-0010

National Alliance for Caregivers4720 Montgomery LaneBethesda, MD 20814301-718-8444

The National Association for Parentsof the Visually Impaired

P.O. Box 317Watertown, MA 022721-800-562-6265

National Caregivers Foundation801 North Pitt Street, Suite 116Alexandria, VA 22314703-299-93001-800-930-1357

National Family Caregivers Association10400 Connecticut Ave, Suite 500Kensington, MD 20895-3104301-942-6430

Partners Promoting Interfaith Caregiving368 Broadway Street 105Kingston, NY 12401-0227914-331-0016

Rosalynn Carter Institute600 Simmons StreetAmericus, GA 31709-4693229-928-1234

National AgrAbility ProjectUniversity of WisconsinBiological Systems Engineering Dept.460 Henry MallMadison, Wisconsin 53706(800) 259-6280 (Toll Free)(608) 262-0613(608) 262-1228 (FAX)rschuler@facstaff.wisc.edu

National AgrAbility ProjectNational Easter Seals700 Thirteenth Street, N.W., Suite 200Washington, DC 20005(800) 914-4424 (toll Free)(202) 347-3066 or (202) 347-7385(202) 347-0711 (FAX)cmaus@easterseals.com

To Everything There is A Season

AgrAbility Projects

Programs for Caregivers

74

Books and PublicationsAgricultural Tools, Equipment,

Machinery & Buildings for Farmers& Ranchers with PhysicalDisabilities, Purdue University,2004.

As Your Years Increase – Loving,Caring, Preparing for Life Past 65,Tim Stafford, Harper, 1989.

Backyards and Butterflies – Ways toInclude Children with Disabilities inOutdoor Activities, D. Greenstein,Cornell University, 1993.

Barn Builders – A Peer SupportNetwork for Farmers and Rancherswith Disabilities, Breaking NewGround, Purdue University, 2002.

The Best of the Stroke Connection: ACollection of Personal Stories byStroke Survivors and Caregivers,Courage Stroke Network, 1990.

Bridging Horizons – An FFA AdvisorsGuide to Involvement for Memberswith Disabilities, Purdue University,1996.

Building a New Dream: A FamilyGuide to Coping with ChronicIllness or Disability, Janet Maurerand Patricia Strasberg, 1989.

Caregivers Products, Caregivers Inc.1077 Race Street #804 Denver, CO80206.

Caring Families Leader’s Manual: Howto Lead a Group of FamilyCaregivers; C.D. Fernald, J.R.Cook, C.A. Gutmann; The FamilyCaregiver Project at UNC Charlotte,Department of Psychology,

University of North Carolina atCharlotte, Charlotte, NC 28223

Caring for Yourself When Caring forOthers, Marget Hover, Twenty-ThirdPublications, 1994.

Children with Disabilities – A MedicalPrimer, M.L. Batshaw, M.D., Y. M.Perret, M.S.W., Brookes Publishing,1986.

Coping with Caregiving, HE-455,Purdue Cooperative ExtensionService Publication, 1988.

Easy Things to Make Things Easy –Hundreds of “how-to” suggestionsfor older people who have physicallimitations, D. Greenstein, CornellUniversity, 1996.

Family Centered Care for Childrenwith Special Health Care Needs,T. Shelton, E. Jeppson, and B.Johnson, 1987.

Friendship Unlimited – How You CanHelp a Disabled Friend, JoniEareckson Tada, Zondervan, 1987.

Handicapped’s Only a Word (HOW),Cooperative Extension Service,Derwood, MD 20855

Helping Yourself Help Others: A Bookfor Caregivers, Rosalynn Carter,Times Books, 1994.

How to Make Someone’s Day, 365Ways to Show You Care, KathyPeel, Word Publishing, 1994.

The Joy of Caring, Gary Collins, WordBooks, 1980.

Love is a Decision, G. Smalley andJ. Trent, Pocket Books, 1989.

To Everything There is A Season

Other Resources

75

The National Council on Aging, FamilyCaregivers Program, 600 MarylandAvenue SW, West Wing 100,Washington, DC 20024

Family Home Caregiving Guides

Idea Book on Caregiver SupportGroups

Guides for Caregivers SupportGroups

Caregiving Tips

Assistive Devices

Managing Medications

Respite: You Deserve a Break

Taking Care of Yourself While YouTake Care of Others

Neighbor to Neighbor – A Do-It-Yourself Guide For OrganizingFarm Family Support Groups,Roger Williams, University ofWisconsin, 1987.

Parkinson’s Disease: A Guide forPatients and Family, RogerDuvoisin, 1984.

A Perfect Fit: 4-H Involvement, ALeaders Guide for Involving Youthwith Disabilities, Purdue University,1992.

Preparing for Emergencies. AChecklist for People with MobilityProblems. American Red Cross.

The Resourceful Caregiver. HelpingFamily Caregivers HelpThemselves, National FamilyCaregivers Association, 1996.

Resources for Rehabilitation, 33Bedford Street, Suite 19A, Lexington, MA02173, 617-862-6455

A Man’s Guide to Coping withDisability

A Woman’s Guide to Coping WithDisability

Resources for People withDisabilities and ChronicConditions

The Self-Help Sourcebook. E. Madaraand A. Meese, St. Clares-RiversideMedical Center, 1990.

Today’s Caregiver – The Magazine forPeople Caring for Loved Ones,1814 NE Miami Gardens Drive,Suite 801, North Miami Beach, FL33179.

When Bad Things Happen to GoodPeople, H. Kushner, Avon Books,1981.

When You’re The Caregiver and WhenYou’re Ill or Incapacitated, J. Miller,Willowgreen Publishing, FortWayne, IN, 1995.

Where is God When It Hurts? Comingto Terms with Tough Times in YourLife, P. Yancey, Harper Paperbacks,1977.

Words to Live By, Jerry Wiebel,Farming Magazine, 1990.

VideotapesThe Grit and Grace of Being a

Caregiver – Maintaining Balance asYou Care for Others, and You ShallOvercome – Promise and Prayersfor Uncertain Times, WillowgreenPublishing, P O Box 25180, FortWayne, IN 46802

MusicDino Kartsonakis, Peace Series –

classical, hymns and nature soundsfor a therapeutic affect. DinoProductions, 800-775-3466.

To Everything There is A Season

76

InternetCaregiveing Online:

http://www.caregiving.com

National Family Caregiver Association:http://www.nfcacares.org

Patient Care Technologies:http://www.ptct.com

Today’s Caregiver – a quarterly magazinecreated for Caregivers by Caregivers:http://caregiver.com

Mailing List for Caregivers – this is adiscussion group for caregivers:PUBYAC@lis.pitt.edu

National AgrAbility Project:http://agrabilityproject.org

National Easter Seal Society:http://www.easterseals.com

Job Accommodation Network:http://janweb.icdi.wvu.edu

ADA & Disability Information:http://disability-resource.com/ada.html

The ARC (information on individuals withmental retardation):http://www.thearc.org

Resources for Caregivers:http://www.makoa.org/caregiver.htm

National Association of Home Care:http://www.nahc.org

Friends Health Connection:http://www.48friend.com

To Everything There is A Season

Self-Help Sourcebook:http://mentalhelp.net/selfhelp

Parents Helping Parents:http://www.php.com

Medicaid and You:http://medicareinfo.com

77To Everything There is A Season

Footnotes

1 Caring Families, Leader’s Manual:How to Lead a Group of FamilyCaregivers, C. D. Fernald, J. R.Cook, and C. A. Gutman. The UrbanInstitute, University of North Carolinaat Charlotte, Charlotte, NC 28223

2 One Man’s Vision, M. Teetor Meyer,1995.

3 Parent Care, 1987.

4 Paraplegia News, January, 1992.

5 Modern Maturity, 1987, AARP

6 Love is a Decision, G. Smalley andJ. Trent, 1989.

7 The Joy of Caring, G. Collins, 1980.

8 Self-Help Network, September, 1995.

9 Kemp and Vash, 1971.

10 Homebuilders, Family Ministry, P.O.Box 23840, Little Rock, Arkansas72221, 1994.

11 Neighbor to Neighbor – A Do-It-Yourself Guide For Organizing FarmFamily Support Groups, University ofWisconsin, Roger Williams, 1987.

12 Love is a Decision, G. Smalley andJ. Trent, 1989.

13 A. Johnson, Auburn Family Institute,MA.

14 Children’s and Youth’s Health Issues,May 1996, Center of Children withChronic Illness and Disability,University of Minnesota.

15 The Caregivers Survival Series;Preventing Caregiving Burnout; TheMagic of Humor in Caregiving;Positive Caregiving Attitudes; andCreative Caregiving, Dr. J. Sherman,Pathway Books, Golden Valley, MN,1994.

16 The Caregivers Survival Series;Preventing Caregiving Burnout; TheMagic of Humor in Caregiving;Positive Caregiving Attitudes; andCreative Caregiving, Dr. J. Sherman,Pathway Books, Golden Valley, MN,1994.

17 Improving Your Serve, C. Swindoll,1981.

78 To Everything There is A Season

Notes

79

Your feelings may be stronger thanyou expect.

There are no “right or wrong” feelings.Everyone is different, people handlestress differently. There is no gauge forpain or suffering, but perhaps you canidentify with some common reactions:fear and anxiety, anger, sadness anddepression.

Your feelings are designed to beexpressed.

Studies show that you tend torecuperate better and heal faster whenyou can release your feelings regularly.Sometimes it helps to have a good cry.

You are the most important personon your medical team.

Never forget you and the care receiverare a central part of the team. It’s yourbody, your health and your future. You arethe customer and you can directyour recovery by: insisting people uselanguage you can understand, askingquestions until you understand, andseeking second and third medical opinions.

Whatever is happening to you ishappening to others.

Accept that people close to you will bemaking their own adjustments to whathas happened to you. You are not theonly one suffering or makingadjustments.

However hard it may be for you, thisis a time to take it easy.

For a period of time it is OK to switchfrom keeping busy and productive to relaxand be patient with yourself.

This serious time is bestapproached with a sense of humor.

In the midst of anguish and fear,humor can divert your attention, bring joyand cheer up your day as well as yourcaregiver’s. Research has shownlaughter produces natural painrelievers.

You have the resources to do whatyou have been given to do.

You have survived past crises. Youpossess coping skills. As a farmer/rancher you have already overcomemany barriers. You have resources,including courage, hope, and faith.

~ Revised 2004, Purdue University

Final Thoughts on Caregiving

* Adapted and reprinted with permission from “When You’re the Caregiver – When You’re Ill or Incapacitated,”James Miller, 1995. Willowgreen Publishing, PO Box 25180, Fort Wayne, IN 46825 219-424-7916