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Frustrated and don't want to visit because of this.


Mom (89) has been placed in a "group home" with diagnosis of dementia. What do I say to her when she constantly begs to go home to her own house? She is on home Hospice care and very well cared for. She is wheel chair bound...no longer can walk on her own. She would need a 24/7 caregiver to live in her home but the cost is between $8K-$10K/month which she can not afford. I visit every other day but I leave each day crying, depressed, feeling like I have let her down. I just can't figure what to do...knowing she is in the best place possible right now. I still feel like I have totally betrayed her wishes. How to get over the guilt and what to say to her each visit. She just does not understand and it is so sad. I am under pressure by my Son and Brother to try to do what she wants but they live out of town only to visit maybe once a year!!! Maybe I should limit my visits and let her settle in better. Maybe there is no answer for me but I am a faithful reader of this website and wanted to see if anyone has advice for me. How do I live with the guilt?????

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My mom had severe vascular dementia and towards the last year walked only in therapy and could not manage a car transfer, plus just bed to chair was pretty rough. She connected her being unable to go home to her not walking, and gave herself hope by saying/thinking she could go home when she could walk again, and needed more therapy...not that she'd actually consistently work hard enough in therapy to make real progress. She did seem to want to go home...but the three home health agency people I got to visit her to just see what was possible were all dismissed because she was gong to go home and be on her OWN once she could walk again. Truth was though the real reason she could not go home alone was because she had lost her judgment and would go into delirium with any infection of any sort, and would never in a million years have even able to keep track of her medications. Before I realized this, I went to the house and set it up to be navigable in a wheelchair and walker, which she yelled at me something fierce for having done (I know, what was I THINKING to tell her I'd done that??)

So, look, if it is not reasonably possible, not safe, and not right for her to be home alone, and she does not have the cognitive ability to understand why, you are doing the right thing, and yes, its a heartache. But it should not be a guilty heartache. And it gets even worse - you may have to sell the home because if it stays unoccupied for long enough they may no longer be wiling to insure it.

If there is a possibility of getting a Medicaid waiver or if the round the clock caregiver could be two shifts and you do one shift routinely and that puts it within budget, sure, consider it. But if there is no way you could do that then DO NOT TRY to do something impossible and do not beat yourself up about the fact that Mom wishes for something that can't happen. Find distractions, postpone it, tell her the house needs a bunch of work done on it, see if you can bring her things from home that will comfort her or make her happier where she is, whatever helps is OK. My mom eventually realized that she would not be going back to her home in Pgh to live alone, but told me maybe we could find her an apartment here in Little Rock. So I said I knew of some and we could look into it. I wasn't lying exactly - I did know of some senior living apartments just around the bock from me. And though in my heart (andby this time in my head too) I knew it was not going to happen, I could have spent some time bringing her pictures of places to think about and I maybe would have except by that time her vision was too poor to really focus on that kind of information. And then it was not long before her coronary artery disease got the best of her and she went into hospice and passed on not too much later.

I don't want my post to make you sadder than you already are, but it helps me to go back through it all sometimes for myself, just to realize again that we did what we could; let's face it, it is a sad thing when our loved ones are losing their health and their abilities, but sad is a better feeling that guilty AND sad.
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Do what I did any time my Mom asked to go home, I would say "maybe tomorrow" and she was content with that. She's happy and your happy that she's happy. Just say those two words, nothing else, as too many words can be confusing to someone with dementia.

Don't forget with dementia when an elder says they want to go home, it could mean they want to go back to their childhood home as they are slowly going backward in time. My Mom thought she was in a hotel in her old hometown instead of being in a nursing home in a State where she had been living for over 40 years.

I know it is hard seeing our parent decline like that. If you learn as much as you can about dementia, it becomes earlier to deal with it. Go to the blue bar near the top of the page and click on SENIOR LIVING. Lot of good articles.

And tune out your son and brother, they have zero clue how much work is involved if Grandma/Mom was to move back to her home.
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Exactly right, limit your visits and let her settle in. Tell your Son and Brother they can take over any time they want, do not let them wear you down. You throw the guilt away. Old age is nobody's fault.
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