Wednesday, July 03, 2024

Going Home

 I've been reading a lot lately about dealing with dementia-related requests to "go home".  We deal with this on almost a daily basis with my 95-year-old mother. When she demands to go home, even begins crying because we won't take her home to her own bed in her own room, it is heartbreaking. When she tells us that she has to get out of here because this isn't where she's supposed to be, it feels like negating the sacrifice of the last 18 years of her living with us. 

I can deal with the incontinence, changing the bed almost every day, helping her with her adult diapers and bathroom duties. I can deal with a lot -- that's what loving a mother is all about. 

I can even deal with the 3 or 4 a.m. calls for help, waking us from a deep sleep just to find out that her blanket fell off the bed and she needs it pulled back up. I can deal with being exhausted all day long as a consequence of the early morning demands for attention.

What is hard to deal with is the sense that I'm not doing enough. I've tried to make our house a home for her, bending over backwards (sometimes too much, according to my wife) to keep her comfortable, fed, clean, etc. To be told that she isn't "home" hurts. 

 I've tried to find out what "home" is to her -- is it Mount Pleasant, LaVista, Omaha, Johnny Creek, Delano, ... even back to 23rd Street. She doesn't know (another of the most frustrating issues of dementia is her answer to every question is "I don't know"). As I read about this wanting-to-go-home feature of dementia, I learn that "home" isn't likely a place for her as much as it is a feeling of security, of comfort, of peace. She's longing for that -- and as hard as it is, given the lack of logical processing in her brain, we have to accept that sometimes she doesn't feel home. But home is not here. It isn't a place.

In those moments, we have to restore her sense of security, of comfort, of peace. Since she can't verbalize what is making her uncomfortable, it's a lot like guessing why an infant is crying -- an impossible situation. I don't know how to make her feel at home, but I will keep trying. 

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