The Mudcat Café TM
Thread #150683   Message #3513206
Posted By: YorkshireYankee
08-May-13 - 08:12 PM
Thread Name: BS: Dementia tips for carers
Subject: RE: BS: Dementia tips for carers
My mother has (officially) had Dementia (probably Alzheimers) for nearly a year now (although looking back over the last 10+ years, that sure explains a lot).

I spent most of this past March and April helping my parents downsize/pack/get rid of stuff (from a BIG house) and move to a (MUCH smaller) apartment in a place where they will not have to worry about cooking & cleaning, and where assisted living and "memory care" will be available when needed.

The most stressful part of the entire seven(-ish)-week period was trying (to no avail) to get my mother to be realistic about how much she needed to discard before the move. Friends who'd been through the same kind of thing all said, "Have her decide what to keep, rather than try to sort through everything trying to decide what to leave behind." Excellent advice, but...

We explained, reasoned, explained again, begged, argued, begged again, lost our tempers (we could see that Mom's stress and panic in trying to sort through EVERYTHING before moving day was making her much worse) and (sometimes) yelled (I feel badly about that, but remind myself that I was completely stressed and exhausted as well, and am only human), begged some more -- and in the end the movers looked in disbelief at the masses of stuff Mom insisted on bringing along and queried, "Couldn't you persuade her to bring less?" sigh...

Many, many, MANY people suggested just putting her stuff in storage until she forgot about it, then getting rid of it. Or even just saying it was going into storage and then getting rid of it. My Father feels that lying to Mom would be a betrayal. I respect and admire his resolve to be honest with her, but I also see how it is going to make his life much more difficult...

Here is what I learned to do -- that I dearly wish I'd known at the start of this endeavor, and which I share here in the hope that it may help someone down the road:
Don't ask your loved one to decide what to keep and what to leave behind. If they're anything like my Mom, it tears them to pieces to make those decisions. What's worse, the decision doesn't stay made, because if you cannot immediately remove the item(s) they managed to decide to discard, they will not remember their decision and will have all the stress of trying to make up their mind about it again -- say 15 minutes later, and then an hour or two after that, and then the next day, etc.

DO ask: What do you use every day? What do you use every week? Every month?

I came up with this approach when trying to prioritize where Mom's clothes should go; figuring that the stuff she wears most often should go in the highest-visibility places. She frequently asked what would happen to the clothes she didn't pick -- anxious I would throw them out -- but was OK with the idea that they would go into drawers that were in less convenient places. This was SO much more effective than trying to get her to let go of things (even things that are irrecoverably ripped or stained, she can't bear to throw away; "I can wear it around the house..." My guess is that it has a lot to do with growing up during the Depression and having a dad who was often unemployed.)

As for my own honesty/"betrayal"? I was mostly honest, but there were times when I got rid of things when she wasn't looking -- especially the aforementioned badly stained and/or torn items of clothing. I'm not sanguine about lying to her; it still bothers me. I feel I did it "for her own good," but I also know it's easy to make rationalizations for behavior that's wrong as well as right. I'll have to live with what I've done, and know that I did it out of love (and -- to be honest -- impatience, and a feeling of desperation).

That's all I can write at the moment; more later...