Stroke: Should I Move My Loved One Into Long-Term Care?
You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.
Stroke: Should I Move My Loved One Into Long-Term Care?
Get the facts
- Care for your loved one at home. This may include part-time care at home with a home health aide or nurse or time in an adult day care.
- Place your loved one in long-term care.
Key points to remember
- People who have had a stroke need a safe, healthy, structured environment. Some families are able to provide this at home. But in other cases, long-term care in a center is a better choice.
- Many of those cared for at home will later have to be moved to a long-term care center.
- Caring at home for someone who has had a stroke can take a lot of time and work. It also costs money if you hire part-time help. Caring for a loved one at home also may take time away from other areas of your life. Every family has different needs and limits to think about.
- By using adult day-care programs and part-time help—whether hired or through family and friends—you may be able to keep your loved one at home longer.
- Remember that your own health, both physical and emotional, is as important as that of the person you're caring for.
- Deciding to move your loved one into long-term care does not mean that you have failed as a caregiver.
When brain cells are damaged or die, the body parts controlled by those cells don't work like they did before. The loss of function may be mild or severe. It could be short-term or permanent. How well your loved one recovers depends on how much of the brain is damaged, where the damage is, and how fast the blood supply returns to the damaged cells.
Many people who have a stroke recover. But a stroke can cause very serious problems. Of the people who survive a stroke, 15 to 30 out of 100 will have a permanent loss of some function, and 20 out of 100 will need long-term care within 3 months of the stroke.1
Your ability to care for a loved one at home will depend on his or her level of disability, your health, and the amount of support that you have from family members or outside help.
After a stroke, your loved one may have trouble with:
- Movement. Your loved one may not be able to walk or to use his or her arms. This is usually because of weakness or paralysis on one side of the body.
- Speech and language. Your loved one may not be able to speak, read, or write. Also, he or she may not be able to understand what someone else is saying.
- Thinking and reasoning. He or she may not be able to think clearly. The stroke may cause changes in behavior.
- Senses. Your loved one may not be able to feel when something or someone touches parts of his or her body, such as the arms or legs.
It could take a long time for your loved one to regain speech and other skills. And some skills may not come back completely.
Many people who have a stroke will have some long-term problems with talking, understanding, and decision-making. They also may have behavior problems that affect their relationships with family and friends. They may need help learning how to act in social situations.
Your loved one could have other problems that happen right away or within months to years after a stroke. They include:
- Weight loss, if the person has trouble swallowing and does not eat well.
- Skin sores (pressure sores) or blood clots within deep veins if the person sits or lies in one position for a long time.
- Shoulder pain.
- A stiff joint that cannot be straightened if the person holds the affected arm or leg in the same position for a long time.
- Infection, especially pneumonia or a urinary tract infection.
- Tight muscles and muscle spasms in the affected arm or leg.
People who have had a stroke may act differently than they did before. They may be slow, cautious, and disorganized when they do unfamiliar activities. They may seem anxious.
The level of care and help your loved one needs may increase if his or her condition gets worse. Basic activities like eating, dressing, bathing, using the bathroom, and simply moving around may be harder or impossible for the person to do alone.
Taking care of your loved one at home may get too hard for you, both physically and emotionally.
"Nursing home" is a phrase commonly used to refer to any long-term care center, but there are several kinds of long-term care. Each provides different levels of medical care, personal assistance, and programs and support services. The quality and costs of care and services at long-term care facilities vary widely, and options vary from community to community.
- Assisted living usually provides private, apartment-style housing and offers a range of services. These services may include meals, cleaning and laundry services, and help with personal needs such as bathing, grooming, and dressing. Assisted-living centers do not provide medical care. This type of housing may be a good choice for people who can't live alone but who can still take care of themselves safely.
- Residential care—which includes board-and-care homes, retirement homes, and foster-care homes—usually provides a greater level of supervision than assisted living. These centers offer community-style housing, meals, laundry and cleaning services, and help with other personal needs. They do not provide daily medical care. Residential care may work well for a person who needs daily help and supervision but does not need nursing care. These centers don't cost as much as nursing homes.
- Nursing homes can provide skilled nursing care up to 24 hours a day. All aspects of care are provided, including medical attention, medicine, housing, meals, laundry, help with personal needs (such as dressing, bathing, and using the toilet), and other support services. This is the most costly type of care in a center. But it may be the best choice for many people who have a lot of trouble with daily tasks and need medical care.
- Continuing-care communities offer several levels of care. They offer assisted living up to full nursing care in the same place. These centers cost a lot. But they may be a good choice, because they can meet the person's changing needs.
Some people find that part-time help allows them to keep their loved one at home for a longer time. Part-time care may take place either at home or in an adult day care.
As in long-term care centers, home care can provide whatever help a person needs. For example, a home health aide can help the person bathe and wash clothes and linens. A nurse can give medical care.
Adult day care and respite services take care of the person so that the regular caregiver can take a break. This may relieve some of the stress of caregiving.
Your loved one's doctor may suggest long-term care if:
- Your loved one's health gets worse, and he or she needs more care than you can give.
- Your loved one has several health problems that require skilled nursing care.
- Your own health is at risk, or you could get injured from caring for your loved one (such as from lifting).
- Long-term care may offer a safer, more controlled situation.
Compare your options
What is usually involved?
What are the benefits?
What are the risks and side effects?
- Your loved one lives in a care center. You can visit as much as you want.
- The type of care you choose depends on whether your loved one can take care of his or her daily needs and on what the family can afford.
- Your loved one has personal care, meals, and other needs met.
- In a nursing home, your loved one also can get medical care.
- A care center may have activities and social outlets to keep your loved one involved and happy.
- Staff members are trained to help people keep up their daily-living skills as much as possible.
- You may be able to focus on your relationship with your loved one, not on his or her daily care.
- You may feel guilty if you think that you should be caring for your loved one.
- You won't know how your loved one is doing at every moment of the day or be able to make sure that he or she is treated well.
- Care at a nursing home or other center can cost a lot.
- You take care of your loved one's needs at home. This may mean helping with cooking, eating, going to the toilet, bathing, and dressing.
- You need to be able to make sure your loved one is safe.
- You may be able to get part-time help with a home health aide, adult day care, or respite care.
- You can be sure that your loved one is okay at all times.
- You can spend more time with your loved one.
- Care at home costs less than at a center.
- You may feel that your loved one will be happier at home.
- Caregiving can be very hard on your body and your emotions.
- You may have little time for yourself.
- Your loved one may not be safe if you can't provide constant supervision.
- Your loved one may have other health problems that need more care than you can give.
Personal stories about moving a loved one into long-term care after a stroke
These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.
I had always told myself that I would never put my husband, Jorge, in a nursing home, and I kept him at home as long as I possibly could after his stroke. But he never seemed to recover from his disabilities. He couldn't go to the bathroom on his own or feed or dress himself. My bad back made it impossible for me to help him. I was afraid I would end up in a hospital myself with no one to turn to for help with Jorge. I just didn't feel I had a choice. I visit him every afternoon, and we watch our favorite shows.
Sophia, age 66
My husband and I thought about putting my mom in a nursing home, but we've decided to keep her here with us for now. We visited several different facilities, but we couldn't find one nearby that we felt comfortable with. If my mom were in a nursing home, I would probably spend so much more time worrying about her that it just wouldn't be worth it. Fortunately, we can afford to hire some part-time help so that we have time for work and other activities. I'm not sure we could keep doing this without that help.
Joanne, age 51
My dad had a stroke about a year ago. For most of the time since then, he's been living with my wife and me and our kids. Taking care of him is a lot of work, and we don't have any other family nearby who can help out. And with our jobs and the kids and other responsibilities, we just can't give him the level of attention he needs. I think he'll get better care in a nursing home than we can give him here.
Bob, age 49
As long as Howell doesn't develop any complications or have another stroke, I plan to keep him at home with me. He's doing fairly well, and our kids live nearby and help out a lot. Every Saturday, one of them comes and gives me an entire day off to myself. But some days it's really hard, and I think to myself, “Will I have the strength to do this in another 5 years?" He's still my husband, though, and I know he would do the same thing for me if the shoe were on the other foot. I just wouldn't feel right letting other people take care of him.
Edith, age 65
What matters most to you?
Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.
Reasons to choose long-term care
Reasons to care for your loved one at home
I don't feel that I can care for my loved one's health problems.
I feel that I can care for my loved one's health problems.
I'm worried that I can't give my loved one constant care and supervision.
I feel sure that I can give my loved one constant care and supervision.
I wouldn't feel guilty about having other people care for my loved one.
I would feel guilty about other people taking care of my loved one.
My loved one and my family can afford a care center.
My loved one and my family can't afford a care center.
My other important reasons:
My other important reasons:
Where are you leaning now?
Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.
A care center
What else do you need to make your decision?
Check the facts
Do all people who have had a stroke need to move to a care center?
- YesThat's not right. Some families are able to provide care at home. But in other cases, long-term care in a center is a better choice.
- NoYou're right. Some families are able to provide care at home. But in other cases, long-term care in a center is a better choice.
- I'm not sureIt may help to go back and read "Get the Facts." Some families are able to provide care at home. But in other cases, long-term care in a center is a better choice.
Should you think most about your loved one's needs and not your own when deciding about long-term care?
- YesThat's not right. Your loved one's needs are important. But your own health is just as important.
- NoThat's right. Your loved one's needs are important. But your own health is just as important.
- I'm not sureIt may help to go back and read "Get the Facts." Your loved one's needs are important. But your own health is just as important.
Can part-time help or respite care help you keep your loved one at home longer?
- YesThat's right. Part-time help may help you keep your loved one at home longer. You may use respite care or part-time care at home or in an adult day care.
- NoSorry, that's not right. Part-time help may help you keep your loved one at home longer. You may use respite care or part-time care at home or in an adult day care.
- I'm not sureIt may help to go back and read "Get the Facts." Part-time help may help you keep your loved one at home longer. You may use respite care or part-time care at home or in an adult day care.
Decide what's next
Do you understand the options available to you?
Are you clear about which benefits and side effects matter most to you?
Do you have enough support and advice from others to make a choice?
How sure do you feel right now about your decision?
Use the following space to list questions, concerns, and next steps.
Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision.
|Primary Medical Reviewer||E. Gregory Thompson, MD - Internal Medicine|
|Specialist Medical Reviewer||Richard D. Zorowitz, MD - Physical Medicine and Rehabilitation|
Last Updated:June 28, 2011