Caring for a Stroke Survivor

Jon Caswell, is the lead editor and staff writer of Stroke Connection Magazine, published by the American Stroke Association.

Caring for a loved one in a time of medical need is a generous and loving thing to do. It is also trying, exhausting and a good way to burn out. Caring for a stroke survivor can be all that and more. Recovery from a stroke can be very slow, and caregiving can become a marathon.  Depending on their age as well as the size and location of the injury (often called a “lesion”), survivors may recover all their facilities, some, or none of them. They may be greatly disabled for months and gradually recover for years. There are often cognitive and emotional changes. All of this is further complicated by the fact that every stroke is different, so what works for one may not work for others. It’s hard to generalize about the stroke caregiving experience.

Because of the nature of a stroke, most caregivers come to their roles suddenly, essentially overnight, without any training. Often, family members assume the caregiving role by default, because they are the spouse or because they are the child who is closest. The first question that must be answered is whether you are emotionally and physically able to do the work, because it is work – you are taking on the responsibilities of at least some portion of another person’s life. Training on how to be a stroke caregiver is minimal, so you will be on your own. This is not to say you should not look for resources and training. My point is that you will have to look for it, it is not obvious. You can start your search with the National Family Caregivers Association and the Family Caregivers Alliance.

Before you can honestly answer that first question about your emotional and physical ability, you must assess your loved one’s level of disability. If you are not familiar with the term “activities of daily living,” you soon will be. Activities of daily living, ADLs for short, are things that people do everyday like eating, dressing, grooming, taking medication and toileting. How many of your loved one’s ADLs have been affected?

In addition to ADLs, there are “activities important to independence” to be considered. These include things like paying bills, cooking, shopping, keeping house and managing money. If your loved one’s deficits are such that he or she cannot perform one or more ADL or act independently with these other tasks, someone must accomplish those things for him or her. These items cannot be left undone, so it’s up to you, another family member or someone you hire. So, again, the question -- are you emotionally and physically able to do the work?

If the answer to that is yes, then there is an important first step you need to take in order to accomplish the work you are undertaking: accept that the role of caregiver is a separate and additional role in your life. It may feel like the extension of the spousal or parent-child relationship, but it is a different role that requires different skills. In my interviews with experts on this subject during 16 years of writing about stroke, they say this simple shift in attitude makes a huge difference in a family caregiver’s success, satisfaction and health.

One reason accepting this difference makes such an impact is that they are more open to help. Accepting help is crucial if you are not to burn out. Whatever your relationship to the survivor, whether child, sibling or spouse, caregivers need assistance and respite. Decide now that you will accept assistance when offered, make specific requests for assistance from family and friends, and find resources in the community for respite care. Respite care is provided by home care agencies like Right at Home for a few hours a day. It allows the caregiver some time to take care of his or her own life. Your Area Agency on Aging is a good starting point for finding respite care.

Think of this undertaking as a marathon, not a sprint. This means that you are going to have to pace yourself. That is why you need to accept help. Another important thing you can do for your loved one is to institute a program of self-care for yourself from the beginning. If you don’t do this, you will almost certainly burn out, and where will that leave your loved one? Consider the oxygen-mask presentation the flight attendant gives before take-off – put the mask on yourself first before trying to put it on your child because if you don’t, you may well pass out and the child will be in real danger. In order to provide the ongoing care your loved one needs, you are going to have to take care of yourself.

What do I mean by self-care? First of all, it means doing something for your own well-being every day. This may seem impossible when you have literally two to-do lists to accomplish, especially when your loved one’s list is filled with items you are unfamiliar with. Your period of self-care may not be long, but it needs to be consistent, and that means you will have to plan for it. Perhaps you can take a few minutes for prayer or meditation or completing the daily crossword puzzle when your loved one is taking a nap. Maybe it means hiring outside help for a few hours a week so you can go to an exercise class or a movie. You will have to defend this time against other things that come up; it will not magically appear. Remember, if you treat caregiving for a stroke survivor like a sprint by trying to do everything and not taking time for yourself, odds are you won’t last, no matter how devoted you are to your loved one.

Finally, join a stroke support group. There are many caregiver groups. If you can’t find one, start one. It is a place where you and your loved one can share with people who understand what you are going through. I have interviewed hundreds of stroke survivors and caregivers, and they all sing the praises of groups. Not only are they emotionally satisfying, you can get practical solutions from people who have been there. Ask your therapists if they know of one in your area. For a non-definitive list and a lot of other valuable information go to the American Stroke Association website and type support groups in the search window. If you can’t find one near you, you can find information on starting a group at the same website.

Caring for a loved one who has experienced a stroke is a loving and generous thing to do. However, unless you are a trained nurse or paid caregiver, you are probably not prepared for this role. To succeed in providing care, you will need to find training and help, and a little time to take care of yourself.

If you find that you’re unable to provide all of the care that your loved one needs while recovering from a stroke, consider hiring a Right at Home caregiver. Find the Right at Home office nearest to your home by visiting our location finder.