How Much Care Will Your Parent Need After a Stroke?

Guidelines for decision-making after a stroke

If your parent has recently had a stroke, you're probably still reeling. Not only do you have to come to terms with your parent's acute illness and possible disability, you have to make plans for the future. Will your parent be able to return to his former living situation, or will you need to arrange for more care? Should you move your parent into your own home or a long-term care facility? And how do you manage the feelings and needs of your other parent, your spouse, and your children?

Deciding how much care your parent will need isn't easy. One of the most frustrating aspects of stroke is that there's no magical formula or timeline for recovery: life after stroke means coming to terms with uncertainty. But once you have a reasonably good idea of your parent's prognosis, you can at least begin doing some research and weighing the pros and cons of different options.

Armed with this information, you'll be able to make an informed decision about what's best not only for your parent, but also for you and the rest of your family.

Know your options

If your parent isn't able to return to his former living situation after a stroke, the decision you'll face is whether to care for him in your own home or find a long-term care facility. If you think you can care for your parent yourself, you may want to look into some type of part-time help:

• In-home help. Part-time home care costs more as the level of care increases. A home care aide is the least expensive and can help with household tasks like cleaning and laundry. A home health aide can also help with bathing and grooming; oversee medications; check pulse, temperature, and blood pressure; and help with simple exercises. A nurse provides more medical care but is considerably more costly.

• Adult daycare and respite services. This option might enable you to keep working outside the home or simply give you a much-needed break from care giving. Adult daycare centers usually offer special activities, such as exercise programs, arts and crafts, and music. Some adult daycare also offers occupational, speech, and physical therapy.

If you can't care for your parent at home, you'll need to choose a long-term care facility. As with home care, the expense of these options increases with the level of care provided.

• Assisted-living facilities. If your parent needs minimal assistance with daily activities, this relatively inexpensive option will allow him to live fairly independently. Assisted-living facilities feature private apartments and offer help with meals, cleaning and laundry, bathing, dressing, grooming, and managing medications. On-site medical care isn't available.

• Residential care facilities. Like assisted-living facilities, residential care offers laundry and cleaning services, help with personal care, and help with medications. Although on-site medical care isn't available, residents are more closely supervised. Meals are communal and rooms usually don't include a kitchenette.

• Nursing homes. This is probably the best choice if your parent requires skilled nursing care around the clock. Nursing aides help with all aspects of personal care, including using the toilet. Trained medical professionals are always available in case of emergency. Although a nursing home is the most expensive option, it may be your only choice if your parent is severely disabled.

• Continuing-care communities. A continuing-care community is a single facility that offers all the different levels of care, from assisted living to full nursing care. This is a great way to meet your parent's changing needs while giving you both a sense of continuity.

Assess your parent's needs

Your parent's doctors and rehabilitation team will be able to help you determine how much care your parent needs, both in the short term and in the future. Request a detailed evaluation of your parent's brain injury and prognosis, then start looking at more specific care needs. Ask a doctor or rehabilitation specialist to sit down with you and go through the following list of questions:

• Will my parent be able to get out of bed by himself? If not, how much help will he need?

• Will my parent be able to go to the bathroom by himself? Will he have any urinary incontinence? Bowel incontinence? Will he be able to clean up after himself?

• Will my parent be able to bathe or take a shower on his own? If not, how much help will he need?

• Will my parent be able to get dressed by himself? If not, how much help will he need?

• Will my parent be able to feed himself? If not, how much help will he need?

• Will my parent be able to walk on his own or with a walker or cane? Will he need to be in a wheelchair? Will he be able to get in and out of the car by himself?

• Will my parent be able to speak, read, or write? If not, will his ability to communicate ever improve?

• Should we expect any kinds of behavioral problems?

• Will my parent be able to remember things? Will he be able to think clearly?

• What long-term medical complications might we expect?

The doctor or rehab expert doesn't have a crystal ball, so don't be too frustrated if she can't give you hard-and-fast answers. But by asking specific questions, you'll be able to get a sense of how much your parent will be able to do, with or without help.

The next step is to figure out whether you'll be able to help your parent do the things he can't do on his own. For example, are you physically capable of getting your mother in and out of the car? Are you prepared to deal with your father's angry outbursts? How will you take care of your mother if she can't tell you what she needs? Can you prepare all of your father's meals and feed him while also taking care of your young children? Whether you're able to care for your parent at home will depend in part on how disabled he is, how fit and healthy you are, and how much time you have to devote to his care.

Weigh the needs of other family members

Of course, you'll also have to consider the needs of the rest of your family. If you have children, it may be impossible for you to raise them while providing adequate care for your severely disabled parent. Or perhaps having your parent in the home will put too much strain on your marriage. And if your other parent is in the picture, you'll have to take into account her needs, feelings, and ability to care for her spouse. You may need to find a new living situation for both of them.

Figure out your finances

Unfortunately, your options may be limited by your finances. Part-time home care, adult daycare, and long-term care facilities all cost money, and not everyone's insurance covers these services. Once you've decided which services you'd like your parent to have, you'll need to determine what you can afford. Find out if your parents have health insurance in addition to Medicare, if they hold any long-term care insurance that will help pay for nursing home or in-home care, or if they've put money aside or in investment accounts to help offset the cost of care. If not, and if they own their home, consider looking into an equity loan on their house.

Ask for help

If you're feeling completely overwhelmed by all the decision-making, don't despair. A hospital social worker may be able to help you sort through insurance and Medicare, find financial aid, and contact local care facilities. Hospital social workers tend to have a lot of demands on their time, so if you can't find one to assist you, you may want to consider hiring a care manager. Like a social worker, a care manager can help you research local care facilities and figure out your finances. She can also help you communicate with other family members, work with the doctors and rehabilitation team, and figure out creative options for getting what your family needs. Ask a hospital social worker for a referral, and be sure to check the care manager's references so you know she has done a good job for other families in your area.

Don't give in to guilt

Coming to terms with the fact that your parent needs to go to a long-term care facility can be difficult and painful. You may feel that you're abandoning your parent or breaking a promise you once made to care for him. But the most important thing is that your parent gets the care he needs. People who've had a stroke need a safe and healthy environment with the appropriate level of support. If you can't provide that in your home, then a long-term care facility is the best thing for your parent. Although it may be heart wrenching when your parent asks to go home, realize that you're keeping the spirit of your promise by making sure he gets the best possible care.

Plan for today, but be prepared to re-evaluate

No one can predict exactly what the future will hold. Some stroke disabilities get better over time. With speech therapy, your parent may regain some ability to communicate. Physical therapy may improve his range of motion. If this is the case, your parent may actually need less care as he regains more independence.

But you should also be prepared for the opposite scenario. A brain injury almost always has permanent effects: if your parent has trouble communicating, making decisions, or remembering things, the situation is not likely to improve dramatically. If your parent is partially paralyzed, he's susceptible to medical complications like pressure sores, blood clots in the legs, muscle spasms, and infection. Such complications can result in a rapid decline, requiring you to provide or seek more assistance and care. If your parent will require only minimal care after hospital discharge, consider it an opportunity to make plans for the future.