Alzheimer's Caregivers: Damned if You Do, Damned if You Don't

06/10/2013 12:47 pm ET | Updated Aug 10, 2013

I'm talking here about the dreaded "N" word -- nursing home. I'm talking about placing your loved one with Alzheimer's in a care facility. Virtually no one wants to do it and few, if any, people with dementia 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 for the patient 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 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.

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 will 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. You may need to revisit the issue further down the road.

Does anyone out there have any further thoughts about this topic?

For a description of how I personally dealt with this difficult and painful issue read my book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, and visit my website, which has a wealth of information for Alzheimer's caregivers.