Dear Candid Caregiver:
My dad is having around-the-clock home care, which was his choice early on when he was diagnosed with Alzheimer's disease. He’s in the later stages now, but he keeps telling his caregivers, including me when I take a shift, that he wants to go home. I read an article that you wrote where you said that asking to go home didn't necessarily mean any particular home, but your comments were directed toward the idea of someone living in a nursing home. Since Dad is in the home where he lived for nearly 40 years, you'd think he'd feel some comfort from that. In fact, that's one reason we've continued to stretch the finances to keep all of this care in his home. What could he possibly want that we aren't delivering?
– Sad and Bewildered
Dear Sad and Bewildered:
I'm so sorry that after all you’ve been doing your dad is still asking this painful question. It's enough to bring the strongest caregiver to tears. Yet, your dad can't help it, which you seem to understand.
Whether a person living with Alzheimer's has lived in a home for a lifetime or makes a transition to a new home or a care home isn’t likely to make much difference when it comes to this question.
Expert theories about what the person really means when they go through this phase have shifted through the years, but current thinking leans toward underlying feelings. It's believed that the person is looking for a feeling a safety and comfort in a more general sense rather than longing for a physical place, which is something that I alluded to in the earlier article.
More simply put, the word home is standing in for the need to be reassured that they are cared for and safe. In the end, each person with Alzheimer's is different from others more than they are the same, however I think that I'd consider this a legitimate interpretation.
Considering the effort and expense that you've gone to in order to keep your dad in his home, I'm sure that this theory is a little hard to take, so I want to reassure you that your dad has benefited from staying in his home and will continue to do so. You haven’t wasted effort and money. My point is just that, for this particular issue, where he lives isn't what the question is really about.
If you let go of thinking that he should understand where he is, you needn't rack your brain to figure out what home your dad is referring to. Just recognize that for some reason, likely one that has nothing to do with your caregiving or that of his aides, he is feeling lost and insecure. That's part of living with dementia.
The solution, which I acknowledge is a poor offering because you will still have to listen to his plaintive plea, is to remain calm yourself and then try to understand the meaning behind your dad's words at any particular time. This could be slightly different each time, but in essence he probably needs reassurance that he will be taken care of even in his confused state.
Your body language and tone of voice can make a huge difference, so try to keep yourself under control by reminding yourself that his emotional pain isn't your fault.
Just try to comfort him in any way that you can. Touch him by holding his hand or putting your arm around him, unless he resists this, of course. Covering him with blankets, quilts, or lap robes can provide a feeling of security if this is something that he’s enjoyed in the past. A live pet or a stuffed animal can also be calming, as can a warm (not hot) drink if he can swallow without stress.
Some people respond well if you ask them to tell you about home, while some will get upset. Again, your dad's reaction to this could be different every time, so be prepared to try different methods without blaming yourself for “failing.” Try one approach if it sometimes works and if it doesn’t, move on.
If comforting alone doesn't help, try distracting him by suggesting that you watch a DVD of an old musical performance or a movie he enjoys. Some people have taken distraction to such a degree that they’ve gotten their loved one in a car and driven around the block so that they can then come back "home." If this is something that you can do it may be worth a try, though suggesting that you'll have a light lunch or some hot chocolate before you go out to the car may make the trip unnecessary because he'll likely move to another topic even before you leave.
The main thing is to avoid trying to explain, use logic, or argue in any way. Saying, “But Dad, you are home,” will nearly always backfire because he’ll insist that he’s not home, and he’s right because his need for security hasn’t been satisfied.
Whatever you do, Sad and Bewildered, expect that this question will be asked again and again. Be assured that it has nothing to do with what you are doing, not doing, or even where your dad lives. Best wishes, my friend. This is a difficult phase.