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Bonnie Lawrence, Family Caregiver Alliance
Bonnie Lawrence, Family Caregiver Alliance
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Caring for an aging parent alone is complicated. When your brothers and sisters are also involved, and when care, medical and financial decisions must be arrived at together as a team, caregiving can become even more complex. Your siblings can be enormously helpful and your best support. But in many families, they can also be a source of stress. No two families are ever alike.
In this column, we’ll talk about how to identify the family dynamics that can impact shared caregiving, ways your siblings can help, how to increase your chances of getting that help, and how to deal with emotions that arise.
A visit home. Often, around this time of year, adult children returning home for a visit realize for the first time that their parents are far more frail than they expected. Although Mom or Dad always report they are “just fine” when you make those weekly phone calls, during a visit, you realize that this is not the case. Your parents suddenly seem much older, and you see the memory lapses, or shortness of breath, wavering balance, multiple prescription containers, or other signals of waning health.
Reactions differ among your siblings. Perhaps your sister, who lives two hours away, is angry that her mother is not the source of emotional support she used to be and doesn’t want to accept what she sees; your brother, who lives across the country and only gets home once a year, is stunned by changes he didn’t expect.
You and your siblings talk in whispers about what should to be done to ensure Mom’s safety and care. There is no money for assisted living, even if your mother would agree to it. Someone needs to step up, to see what can be done, to make decisions, to find some help, or even to live with your Mom to keep her as safe and healthy as possible. And it’s determined, often by default, that one person — perhaps the one who lives the closest, or doesn’t have kids, or is the oldest — will take on the role of primary caregiver.
People are living longer — but not necessarily in good health. Their adult children may be caring for them for years or even a decade or more. Siblings or step-siblings are coping with a major emotional passage that stirs up childhood feelings and conflicts. But it’s made more challenging when there’s no model for working together as a team to handle the practical, emotional and financial issues that go with caring for someone who is no longer able to be independent. Some families are able to work out differences; many others struggle.
Consciously or unconsciously, needs arise for love, approval, or being seen as important or competent as a sibling. The disagreements now are over care for your parent: who does or doesn’t do it; how much; who’s in charge. At the same time, your parent is very aware — and most likely not happy — that he or she has become so dependent on you.
1. Think about, and talk about, family history and dynamics, and how they might affect caregiving. When we get together with our families, many of us tend to slip into our old roles. Maybe one person was the “responsible” one, one was the “social” one, one was the “helpless” one. But do those roles define you today? And more importantly, can you take a fresh look at who your siblings are now in the context of how these roles and assumptions can affect care for your parents?
2. Consider that care for a parent is a shared responsibility. A key concern is who will be the primary care provider(s) and what support other family members can provide. Since this is a role that can progress to more than a full-time job, this is an important decision. Rather than letting assumptions become default decisions (e.g., Barbara is oldest so she will be in charge, or Max needs a place to stay, so he’ll take care of mom), really consider who is most able, willing, skilled, and emotionally prepared to fill this role. Then consider what other family members can contribute in time or money.
3. To help reach the goal of effective shared decision-making, hold a family meeting. Family meetings are a way for siblings, parents and other concerned relatives or friends to try to clarify the situation, work out conflicts and set up a care plan that, ideally, all can agree upon. If the meeting is likely to be contentious, or if you want an experienced, objective voice to guide it, involve a facilitator such as a social worker, counselor, geriatric care manager or trusted outside party who will ensure that all participants have a chance to be heard. You may need more than one meeting. And although emotions might run high, it’s possible to conduct a productive meeting by following a few guidelines:
4. Understand and respect that your brothers and sisters might have different ideas about the care your parent needs. It’s hard to accept that your parent now need your help. Unless there’s a sudden crisis like a stroke, adjusting to this new reality takes time. Some adult children have to work through their denial that anything serious is wrong. Others might feel reluctant to get involved, fearing they are “meddling” in their parent’s life.
Yet, to the primary caregiver, the person who is present day-to-day, it’s clear that his or her parent is less and less able to handle everyday needs. They see that Mom requires assistance with grocery shopping and cooking, that transportation and bill paying are problems, or advancing memory loss or fading eyesight or painful joints keep her from normal activities. Her needs are evident and most likely will become more intense.
Some caregivers really don’t want help, or can’t rely on help from siblings who are undependable or unavailable. If you’re in this situation, admit it to yourself, accept that you’re on your own, and work to make the care as efficient as possible while still attending to your own health and well-being. If other relatives or friends are willing, ask for help from them or from religious communities your parent might have been involved in. Check for resources in your community. When people offer to help, say yes.
With Durable Powers of Attorney or an Advance Health Care Directive, your parents can designate who will be in charge if they become incapacitated. Sometimes this creates tension among the adult children. If at all possible, this should be discussed at a family meeting and clarified for everyone concerned. An advance directive will outline the types of care that your parent desires at end of life. With this information in writing, a difficult situation is made a little more tolerable.
Some families compensate the primary caregiver for their work, particularly if he or she has cut back on employment to care for their parent. How much the compensation is and who pays it can be covered in a Personal Care Agreement, which is a written contract. This can be reviewed periodically to ensure it reflects any changes in care.
If an inheritance is in question, or if someone feels they should get a larger portion of an inheritance because of their caregiving duties or other reasons, this is another source of potential conflict. Be aware that your parent’s will is his or hers to direct as they like, and is not necessarily representative of who was the “good” son or daughter or who did more or less for their parents.
Sharing care among siblings is a reality that millions of Americans manage on a daily basis. By taking steps to foster positive communication and support one another as much as possible, the challenging role of providing care for elderly parents can be a fulfilling, rewarding experience, which ultimately can bring siblings closer together.
Locate Area Agencies on Aging and other resources
National Association of Professional Geriatric Care Managers
3275 West Ina Road, Ste. 130
Tucson, AZ 85741
Lotsa Helping Hands
A website to help you create, organize and stay in touch with your family, friends and care community.
Residential Care Search
Listings by geographic area:
More Helpful Publications from Family Caregiver Alliance:
Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
Family Caregiver Alliance (FCA) offers an extensive online library of free educational materials for caregivers. The publications, webinars and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.
Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease-specific organizations and more.
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