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I feel so lost and depressed. I have had my mom with me now for almost 5 years. Her Alzheimer’s is progressing but she is still functioning with a lot of assistance. She lives with us in a separate suite. The problem is I don’t get a minutes peace - she wants to come everywhere I go, if I am just reading she sits and stares at me, if we have company she plunks herself down, my husband and I try to sneak out but then she is sad saying she is always alone. I keep telling her that she would be better somewhere with people her own age but then she cries and says she doesn’t want to go. I know many will say just move her and forget the guilt, I am asking for suggestions on how to make this work where we can both be happy with the decision.


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Sadly, when it comes to dementia, there may not be a way to avoid some upset or anxiety. People with dementia are often not able to see the situation for what it is, use proper judgment or even process that there is a problem. So, I'd try to adjust you expectations. It might be that she will never really be happy or content, though, medication really helped my LO who suffered with depression and anxiety. That often evades people who continue to live in their own home, because, eventually, she won't know where is living. So, it's often a matter of making the right decision and implementing it. Not long after my LO settled into MC, she thought that she was living in her own apt there and working in the office. (They let her sit there and fold papers. She used to work in a medical office setting, so, it made her feel comfortable. Eventually, she told me she was retiring from that job and I agreed it was time if she wanted to retire. This was a delusion that seemed to bring her comfort. She was content to continue to live in her apt though, which was actually a room in MC where she received total care of all aspects of her daily life.)

In my opinion, it's very stressful to live with a person who has dementia around the clock, especially, during the repeating stage. It can also be exhausting. That kind of wear and tear on your body and mind can be devastating. It took me a year to recover my health after a short stent at at home care giving. I don't fault myself. I did the best I could, but, it was not feasible for our situation. I anticipate bringing my LO back home from MC at some point. She's end stage now, but, I have to ensure that I have shifts of people to be with her and help me. One person doing this is just not realistic. Covid makes long term care facilities really scary right now, but, I would still explore your options. Whether it's bringing in outside help or placement. Convincing her that she would be better in a facility is probably not something I would plan on happening. Even if you did, she's likely forget it soon after.

I'd also read a lot about what the work for you will be as her dementia progresses. How would you manage if she is wheelchair bound and you need help transferring her to the bed. Or what about when she is incontinent and she needs changing her depends? Or, if she resist care and you must manage that alone? It's a lot to consider.
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God bless you for your valiant caregiving. When the quarantining is over, research adult day cares. You cannot reason with mom in her condition. She won't change, or understand ever, only decline. Caregiving needs to be a mutually beneficial arrangement. When it begins to negatively impact the caregiver, things need to be rearranged so that it is at a level the caregiver is willing to accept. This is an ever-moving target. For some problems there are no perfect solutions. But, you need to protect your marriage and yourself. If you burn out, this won't help your mom, either. Would your mom want you to burn out on her behalf? I doubt it. May you have peace in your heart and success in finding the right arrangement.
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Many facilities offer short stays as respite for caregivers and/or trials for the person potentially moving in, that might be a good icebreaker for both of you.
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I doubt that assisted living WILL be better for her. It will be better for you, and that is what you need to accept. We all have our human limitations. Until we do accept reality, there is honestly no answer, and no way to make anyone happy with the decisions. Mom will almost certainly never see the light to say "Oh, I would much rather leave my daughter and move somewhere where everyone is "challenged" in some way or another, and I know none of them". You are asking for the perfect world that you understand on some level doesn't exist. Guilt belongs to those who intentionally do harm to others. Accepting that we are human beings and not Saints means we have grown up. Remember, Saints have a very bad job description: be willing to be tortured to death, then spend your eternity trying to answer the prayers of all. I am not up to that job.
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