The saying is that there is no place like home. Home is a haven where we can kick off our shoes, remove our make-up, and get comfy under a blanket on the couch.
But what if you never felt at home, always longed for that security, and couldn’t ever find it? That is how it is for most people with Alzheimer’s disease.
My husband, Marshall, is in advanced stages of Alzheimer’s. He’s had it at least 12 years. I cared for him myself for 10. He now resides in an assisted living home for memory care.
Every day he asks to come home. This would break my heart if I didn’t know there is more to what he is saying. I can no longer handle him. Caring for him nearly cost me my life. The round-the-clock responsibilities and stress resulted in numerous health conditions for me, some of which are permanent.
Marshall needs a team of people working together. I now believe I’m an important part of that team.
When I pick him up, I tell him we will stay out all day if he wants. Initially, he is happy about that, but after only an hour or two at the most, he tells me he has to go back. He has an important meeting, or his friends are waiting for him. If a restaurant is too noisy, he puts his head down toward the end of the meal. He needs to shut out the over-stimulating outside world. It is too much for him to process.
I’ve found from speaking to groups of caregivers that this is common even when a person with Alzheimer’s is in their own house. They may be where they’ve lived for 40 years and still ask to go home. Nothing looks familiar anymore, no matter where they are. As they lose their memories, everything is new and different every minute of the day. And when I look back, I remember Marshall asking to go home when we still lived together. He would think we were at a hotel or someone else’s house.
I’m learning how to understand him and what he truly is saying. When he asks to come home, he’s really asking to be with me. I’m “home.” With little ability to communicate, he repeatedly tells me how much he loves and needs me. As long as he continues to recognize me, or at least our emotional connection, he wants to be wherever I am.
Marshall’s ultimate choice would be for me to live in the memory care home with him. He’s asked me several times if we could do this. It is his dream—and my fear.
(For more information on loving and caring for someone with Alzheimer’s disease, see my book, Navigating Alzheimer’s.)
©2016, Mary K. Doyle