Caregivers of people living with Alzheimer’s disease must make some extremely difficult decisions. One decision they may face is whether to place their loved one in a care facility of some type. Virtually no one wants to do it and few if any people want to go. This will be one of the most difficult, heart-wrenching decisions you, as an Alzheimer’s caregiver, will ever have to make.
What if you have to work full-time and can’t provide the 24/7 care dementia patients require – especially those in the later stages of the disease? What if you can’t afford an in-home care service that could help make it possible for the person to remain at home? What about when no friends or family members will help you out? Or what can you do if your loved one becomes combative and you simply can’t manage him or her anymore?
There are other considerations as well. Your loved one may habitually forget to turn off the stove, leading to a risk of fire. He or she may be up all night, causing you to be up as well. You may both become sleep deprived – a serious health risk for both of you. You have to consider your own health, not only for your well-being but because you can’t provide good care if you’re exhausted all the time.
Unfortunately, you and your loved one aren’t the only people in the equation. Family members, especially those who are not involved in the caregiving and thus really have no idea how badly placement might be needed, may argue strenuously against any decision you make in this regard. This can lead to a serious rupture in relationships and family harmony. And it can be worse still if the family members didn’t get along before there was a need to make this decision. They may try to make you feel guilty enough to give up any plans for institutionalization.
What to do, indeed. Sometimes nursing home placement is the best (or even only) solution for your benefit and the benefit of the person for whom you’re caring. But many people feel like institutionalizing their loved one is a cop out – virtually a crime. They feel it would be tantamount to abandoning the person they love most in the whole world.
In addition, it’s possible that you promised you would never put the person in a nursing home. How can you justify breaking that promise? How can you desert your beloved spouse, parent or another dear person just when he or she needs you the most?
If you do it you may feel terribly guilty. But if the person really needs to be in a facility for his or her own safety and well-being you may end up feeling even more guilty if you don’t do it. If something happens to your loved one – such as wandering off or sustaining an injury from a fire or other hazard - you’ll never forgive yourself. And that’s the crux of it. Damned if you do; damned if you don’t.
So how do you decide what’s best? I suggest you ask yourself two questions: 1) Would being in a facility provide your loved one with better care, more personal attention, more opportunities for socialization and – especially – greater safety? and 2) Is taking care of the person at home wrecking your own physical and mental health? If you answered “yes” to either one of these questions it may be time to start looking for a good facility.
Another approach that could help you make the wisest decision is to talk with a trusted person outside your family. You may want to talk with your best friend, your personal physician or your attorney. It can be very helpful to have a frank discussion with someone who is neutral about the situation. In addition, if you are a spiritual person, this is something about which you can pray or discuss with your minister, rabbi or other faith leader.
If you decide to go ahead with it, follow through. Find the best facility you can afford and don’t look back. Don’t worry about your loved one hating you forever. People with Alzheimer’s who are placed in nursing homes typically adjust in time and, if their dementia is advanced enough, they may soon forget they were even moved in the first place.
If you decide not to do it, just remember that Alzheimer’s is a progressive disease. Be open to revisiting the issue further down the road.
If you do place your loved one in a care facility, you may experience guilt and regret but, assuming your loved one is safe and is experiencing a reasonably good quality of life, those feelings will hopefully pass and the time will come when you will feel comfortable with your decision.
Marie Marley is the award-winning author of “Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy” and co-author (with Daniel C. Potts, MD, FAAN) of “Finding Joy in Alzheimer’s: New Hope for Caregivers.” Her website, ComeBackEarlyToday.com, contains a wealth of information for Alzheimer’s caregivers.