A Guide to Understanding and Adapting to your New Role

Caregiving for Your Parent:

The Purpose of this Guide

Caring for a parent is a challenging new role for many children as they enter middle and late adulthood. As affordable alternatives are becoming more difficult to find, children often take up the majority of care. Caregiving can include direct care in your home, helping with everything from bathing to medication management, but it can also include coordinating services to help your parent stay in their independent home or in a facility. Regardless, when you begin caring for your parent, you take up new roles: you may now be the main communicator and advocate with their doctor, their primary chauffer, their chef or maid, and everything else in between. All of these roles are added to your already busy life and adjusting to the changes that come with them can be difficult.

Often, people who provide caregiving to a relative focus so much on the person they are caring for that they forget to give themselves the attention and care they deserve. So take this moment to take care of your needs, as this guide is meant to help you. After all, the healthier you are, the better you can provide for your parent.

The purpose of this guide is to help you understand this transition and provide suggestions to maintain a happy,

healthy life, while caring for your parent.

1............................................................................................. Effects on Your Development

3.............................................................................................. Potential Effects on Your Life

5........................................................................... Role Changes

7...................................................................... Health Concerns

9........................................ Family Conflicts & Ambiguous Loss

10................................................. Risk and Protective Factors

11.................................................................................................. Recommended Activities

15..................................................................................... Resources for Further Assistance

17......................................................................................................................... References

Contents

Effects on Your DevelopmentBelieve it or not, even though you are an adult and may think your years of growth are over, you are still a developing person. In the chart below, typical developmental processes experienced in this stage of adulthood are listed on the left; to the right you can see different ways how caregiving can interact with each of these processes.

1. A new focus on generativity, or a desire to contribute to society in some way. This is often demonstrated in a concern for others and the future generation, or as a desire to produce or create.

2. A rediscovery of “lost parts of the self,” such as picking up old hobbies and passions again, or becoming more in tune with parts of your personality that you have not accessed regularly.

3. Trying to find balance with different parts of your life and identity.

4. Changes in physical appearance, sexual activity, cognitive skills, and physical health.

5. A maturation of coping mechanisms, or skills that help you handle stress, sadness, or pain.

6. The development of a smaller social network, composed of mainly close friends, as acquaintances and others become less involved.

7. The growth and “launch” of children, changing the dynamics between parent and child.

1. Caregiving can increase the sense of purpose and generativity in life, by providing for another person.

2. Caregiving can interfere with some new hobbies, but can also help you discover parts of your past and awaken childhood memories as you spend time with your parent.

3. Caregiving adds a new aspect of our identity, as you take on the role of caregiver. This can make finding balance a little harder, as you have another role to juggle.

4. The stress of caregiving can impact your health in a variety of ways.

5. These coping skills may help you manage the role of caregiving, but caregiving may also prompt you to develop new coping mechanisms.

6. Caregiving has been known to increase social isolation of the caregiver; these close friends will be more important, as the other relationships may be harder to maintain.

7. As your children become more independent, it may give you more time and energy to spend caring for your parent.

Developmental Process Potential Interaction with Caregiving for your Parent

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Potential Effectson Your Life

Studies have shown that caregiving can produce numerous positive effects on your life, such as a feeling of closeness with your parent, a sense of purpose, the satisfaction of being

a good role model to your own children, or the notion that you are“giving back” to your parent or the community. However, caregiving can also yield some negative effects as well. In order to help you face these challenges, some of these negative effects are described in more detail on the following pages.

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Role ChangesCaring for your parent can often feel like roles are reversed, that you are now the one parenting them. Unlike raising a child, caring for your parent comes with the unfortunate reality that as they age, their dependence generally increases, leading to a feeling that your relationship grows less mutual with time. While this is a common sentiment, many parents also like to maintain their autonomy as long as possible and often have the right to do so. This can lead to conflicts between caregiver and parent, or depression in the parent as they grow more dependent against their will. For this reason, working from a perspective of respect and careful communication with your parent can be critical in managing their care in a way that makes you both happy.

Furthermore, you may notice other positions you hold in life begin to be altered. You may be juggling multiple roles (parent, child, sibling, employee, friend), so adding in a new job as caregiver to your parents sometimes off-sets the other positions you hold. Studies have shown that the greatest effects on your life, tend to come in the form of 1) changes to your personal life, 2) changes to your family life, 3) changes to your work life. For example, compared to others of their same age, caregivers tend to have more problems with work and less social interactions with their peers, since oftentimes work, family, or social events have to be sacrificed to care for your parent. In this way, caring for your parent can affect your relationships and ability to participate in your other roles as employee, family, or friend. These changes can be painful or stressful for many caregivers.

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Health ConcernsThe stress associated with caregiving can often lead to various physical and mental health issues. Even if your parent needs a great deal of help, causing them anxiety, studies have shown that the caregivers often have more stress than the patient. In terms of physical health issues, caregiving has been associated with disruptions in sleep, higher blood pres-sure, more physician visits, increased risk of illness, and bodily pain. For these reasons, managing your stress is critical for your overall well-being. When it comes to mental health issues, caregivers often experience anxiety and depression. People sometimes view these mental health concerns with shame, but it is important to know that this is a common re-action and they need to be taken seriously. If you find yourself struggling with these symp-toms, be sure to seek help.

These strong negative health effects of caregiving are generally explained by the stress pro-cess model. This model argues that a combination of factors contributes to stress on the caretaker, including the characteristics and resources of the caretaker (such as culture, in-come, coping strategies, etc.), primary stressors (strains directly related to caregiving, such as difficult behavior of the patient), and secondary stressors (strains resulting from caregiv-ing, or not related to caregiving at all, such as problems at work or with social relationships). The resulting stress, then impacts your health.

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Characteristicsand Resources

of Caregiver

Stress

PrimaryStressors

SecondaryStressors

Family conflicts

Risks and Protective Factors

Frequently, there is only one primary caregiver in the family, with the other siblings, spouses, and relatives taking a “back seat” and only contributing in certain ways (only when asked, only financially, only with social visits, etc.). This is not to say that their roles are not important, but sometimes the unequal distribution of the responsibility can strain your relationships with the other family members. Furthermore, family members frequently argue about the care plan for the parent—what level of care is needed, how much should be spent and out of who’s pocket, where they should live, etc. These kinds of family conflicts further add to the stress and challenge of the caregiving role.

Ambiguous Loss“Ambiguous loss” is a term used in describing the sense of loss that comes from having someone still present physically, but fading in their cognitive abilities and what you see as their identity. This is a common sentiment in dementia care, but applies to many caregivers who see a decrease in their loved one’s functioning. Part of the healing process of this kind of loss includes becoming more comfortable with that kind of ambiguity and finding a sense of peace and purpose in your caregiving relationship with your parent, even as they change over the years. This is something that can be difficult, so give yourself time to grieve and heal from this unique kind of loss.

However, not everyone reacts the same way to caregiving. Studies have shown that some individuals feel the effects more deeply than others, often for reasons out of their control, such as biological vulnerabilities.

Things that may increase risk of negative effects: being female, older, low-income, less educated, living with the person you care for, and having chronic diseases of your own (such as diabetes or chronic heart failure).

Things that may decrease risk of negative effects: being male, having more social support and resources, having a healthy diet, and regular exercise.

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Recommended Activities

Based on the available research, while some of the negative effects of caregiving are unavoidable, there are a variety of things that may help you cope with your new role and live a healthy life. It may take time to realize what works best for you, but in the meantime, here are four possible activities to help improve your overall wellbeing, while caring for your parent.

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3

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Look into respite care (opportunities to take a break from caregiving). This will decrease your exposure to the stresses of caregiving and give you more time to focus on your other roles and your self-care. Caregivers who use respite resources have been shown to feel better about their overall health and well-being.

Have a discussion of care plans with your parent, their doctors, and other family members. This can include a discussion of living wills and rights to make medical decisions, moving plans and living arrangements, distribution of care responsibilities, financial planning, and options for paid/formal healthcare outside the family. People who are suddenly thrust into the caregiving role generally feel less prepared or competent for the job. For this reason, discussing your parent’s care plans are necessary to both decrease stress and relieve your burden in the future, leading to improved health down the road. This can also help you plan for your own future, increase your confidence, and lower the chances of caregiving affecting your work and personal life. These discussions are important to revisit regularly, as your parent’s condition or your family’s circumstances may change.

1Exercise at least 2-3 times a week. No matter your preference, any exercise helps improve physical health, stress-management, and acts as a protective factor against the negative effects of caregiving. In particular, a routine that includes cardio, stretching, and weight-lifting has been found to be the most beneficial for your physical and mental well-being.

2Spend leisure time with your parent. This can serve a variety of benefits. First of all, sharing a hobby or attending a cultur-al event together (such as a musical performance or play) has been shown to decrease loneliness in the elderly, which can decrease their depression and decrease your own caregiving burden as a result. Furthermore, this can be a nice way to step out of the caregiving role and give you and your parent time to talk and simply enjoy each oth-er’s presence. This can improve your relationship with your parent and decrease frustrations you may be having with their care.

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Resources for furtherassistance

• California Association of Adult Day Services – caads.org – Locations and information on Adult Day Services in California (centers for elderly and adults with disabilities to attend, designed to help them stay mentally and physically active and to provide respite for their caregivers).

• Caring Transitions – caringtransitions.com – Helps with every phase of the moving process for seniors, from sorting, storing, shipping, and selling belongings, to cleaning and staging the home for resale.

• Family Caregiver Alliance – caregiver.org – Education, online groups, classes, videos, advocacy advice, policy information, a support group, and more.

• Inland Caregiver Resource Center – inlandcaregivers.com – Support groups, educational workshops, counseling, and referrals.

• Meals on Wheels – mealsonwheelsamerica.org – Meal delivery, which can include a friendly visit and safety check for your parent.

• Rosalynn Carter Institute for Caregiving – rosalynncarter.org – Research-based programs and books.

• AARP Caregiving – aarp.org/home-family/caregiving – Articles, videos, forums, information, and tools relating to topics such as insurance, care planning, legal issues, self-care, and housing.

• Able Data – abledata.com – Unbiased ratings, pricing, and other information on assistive technology (products to help with various disabilities).

• Cal Quality Care – calqualitycare.org – Data from government organizations showing locations, performance, and ratings of healthcare facilities in your area, including assisted livings, hospitals, and home care agencies; contains information on payment and advice in planning care.

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