If your family member or close friend has recently had a stroke, you're probably still reeling. Not only do you have to come to terms with her acute illness and possible disability, you have to make plans for the future. Will she be able to return to her former living situation, or will you need to arrange for more care? Should you move her into your own home or a long-term care facility? And how do you manage the feelings and needs of your other family members, including kids, during your loved one's recovery?
Creating a stroke care plan and deciding how much care someone 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 the patient'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 the patient, but also for you and the rest of your family.
Stroke Care In Your Home
If your family member can't return to her former living situation during recovery from a stroke, the decision you'll face is whether to care for her in your own home or find a long-term care facility. If you think you can care for her 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 health 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 day care and respite services. This option might enable you to keep working outside the home or simply give you a much-needed break from caregiving. Adult day care centers usually offer special activities, such as exercise programs, arts and crafts, and music. Some adult day care also offers occupational, speech, and physical therapy.
Post-Stroke Care in a Facility
If you can't provide post-stroke care for your family member 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 family member needs minimal assistance with daily activities, this relatively inexpensive option will allow her 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.
- Care homes. 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 the patient 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 the patient is severely disabled.
- Continuing care retirement communities (CCRCs). A continuing care retirement 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 a stroke patient's changing needs while giving you both a sense of continuity.
Assess the Patient's Needs
Your family member's doctors and rehabilitation team will be able to help you determine how much care she needs, both in the short term and in the future. Request a detailed evaluation of her 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 she be able to get out of bed by herself? If not, how much help will she need?
- Will she be able to go to the bathroom by herself? Will she have any urinary incontinence? Bowel incontinence? Will she be able to clean up after herself?
- Will she be able to bathe or take a shower on her own? If not, how much help will she need?
- Will she be able to get dressed by herself? If not, how much help will she need?
- Will she be able to feed herself? If not, how much help will she need?
- Will she be able to walk on her own or with a walker or cane? Will she need to be in a wheelchair? Will she be able to get in and out of the car by herself?
- Will she be able to speak, read, or write? If not, will her ability to communicate ever improve?
- Should we expect any kinds of behavioral problems?
- Will she be able to remember things? Will she 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 he 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 family member will be able to do, with or without help.
The next step is to figure out whether you'll be able to help her do the things she can't do on her own. For example, are you physically capable of getting her in and out of the car? Are you prepared to deal with angry outbursts? How will you take care of her if she can't tell you what she needs? Can you prepare all of your family member's meals and feed her while also taking care of your young children? Whether you're able to care for the patient at home will depend in part on how disabled she is, how fit and healthy you are, and how much time you have to devote to her 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 family member. Or perhaps having the patient in the home will put too much strain on your marriage. And if the person who had a stroke is your parent, and your other parent is in the picture, you'll have to take into account his needs, feelings, and ability to care for his spouse. You may need to find a new living situation for both of them.
Which Care Options Can You Afford?
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 the patient to have, you'll need to determine what you can afford. Find out if she has health insurance in addition to Medicare, if she holds any long-term care insurance that will help pay for nursing home or in-home care, or if she's put money aside or in investment accounts to help offset the cost of care. If not, and if she owns her home, consider looking into an equity loan on her home.
Get Help From a Social Worker or Care Manager
If you're feeling completely overwhelmed by all of the decision-making involved with your loved one's post-stroke rehabilitation, 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. He 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 he has done a good job for other families in your area.
Choose What's Best for the Patient
Coming to terms with the fact that a family member needs to go to a long-term care facility can be difficult and painful. You may feel that you're abandoning her or breaking a promise you once made to care for her. But the most important thing is that the patient gets the care she 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 family member. Although it may be heart-wrenching when she asks to go home, realize that you're keeping the spirit of your promise by making sure she gets the best possible care.
Stay Positive, but Stay Alert
No one can predict exactly what the future will hold. Some stroke disabilities get better over time. With speech therapy, your family member may regain some ability to communicate. Physical therapy may improve her range of motion. If this is the case, your family member may actually need less care as she regains more independence.
But you should also be prepared for the opposite scenario. A brain injury almost always has permanent effects: if the patient has trouble communicating, making decisions, or remembering things, the situation is not likely to improve dramatically. If she's partially paralyzed, she'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 she'll require only minimal care after hospital discharge, consider it an opportunity to make plans for the future.
Medically reviewed by Dr. Farrokh Sohrabi