Dementia - always a few steps behind
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Anonymous
| I am always a few steps behind my mom’s development, just enough that once I get used to a decline, and can enjoy the moments, she seems to decline further and I get upset, sad, angry again. I wish I could just enjoy the moments more that I have with her. It’s so sad. I’ve been spending the better part of the last 2 years utterly devastated, and in hindsight, those years were good. I’m doing it all wrong. |
Anonymous
| Understand. It is like a downward staircase with landings. You go down some steps, level off for a shorter time than you’d like, and then another flight down…. |
Anonymous
| I empathise. I moved my mom across country when she wasn’t managing well (but before diagnosis) into an expensive large independent and assisted living apartment with a kitchen (that she has not once used) and that’s further from me than some of the other assisted living places we visited because it seemed more upscale and active. Well she can’t keep up and now needs to move to memory care. You try to meet them where they are but as soon as you figure it out things change. Like I recently bought a supposedly easier tv and then an Alexa for it and then enrolled her in a class online she wanted to take but now she can’t do any of those things. Assisted living tells me she’s be better off in memory care but at the moment I can’t bear to out her in a locked memory ward because she is not eloping and is terrified of being “locked up” yet I know it’s coming. |
Anonymous
Well said, PP. Thank you for this. |
Anonymous
| How to deal with this? She does things that are either unsafe, or incredibly frustrating (follow me around the house all day, even though I work in a demanding remote job; soak every chair in sanitizer in a restaurant etc) - when we ask her to do do said unsafe or disturbing thing she guilts us tremendously (and I have to admits it’s working, my guilty conscience is killing me), or she starts crying or sulking. I am going crazy, meanwhile I feel so bad for her. |
Anonymous
| Does she have the funds for AL? You need to get her out of your house and into a facility that is designed for her needs. And with others in her same condition. |
Anonymous
She refuses any and all help while being in denial about how independent she is. AL, at home care, it’s all covered. She refuses. Meanwhile I don’t have any space in my house where she doesn’t follow me. I love her but I’m a prisoner in my own home. |
Anonymous
Its not her choice anymore. You will probably have to find a good memory care near you, visit it, take your mom there and tell her she's got to stay for a while because you have to renovate the house/fumigate/leave town for a while, whatever. Then you set up her apartment there and bring her there and the staff helps her adjust. She needs interaction during the day and they will hopefully provide that. I'm experiencing something similr with my mom, who is at AL, but calls me every hour or two because she doesn't know what she's supposed to be doing, or asks why we are not going to XYXZ, etc. The staff has told me that she would be better off in MC where residents are guided during the day to meals, activities, etc. |
Anonymous
| My elderly father with dementia lives with us. I work from home and hired a retired lady to come spend time with him during the day. She cooks for all of us, takes him for a walk, they do puzzles and play board games, she listens to his stories (same ones, over and over), and answers his numerous questions. Without such help, I was getting crazy too: he distracted me from work all the time, asking questions, asking for help - to open some box, to adjust the air conditioner, to turn on his favorite TV channel, etc. |