Mom has early-moderate dementia and still lives alone. She won't move or accept in-home care. Any advice? - AgingCare.com

Mom has early-moderate dementia and still lives alone. She won't move or accept in-home care. Any advice?

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Mom has early-moderate dementia and still lives alone. I live about an hour away & my sister lives in another state. Mom is very stubborn and doesn't want to "go to a home with those old folks". We have tried home care but she ran them off. This past week I discovered that she has not been taking her meds. I created a checklist for her meds that has been working well for over a year. I call her daily to remind her to take them. I work at home & have small children. I am also in remission from lymphoma and need to take care of myself and watch my stress levels. My Mom has always been high maintenance & difficult. Her boyfriend (married) visits her daily and has for years. He watches out for her but it's beginning to not be enough. He will visit her wherever she is. She drives (I know she shouldn't) to the store & wanders around every day. She cooks huge meals and lets them sit around on the counter for days or weeks in the fridge. I believe that may be the cause of her fecal incontinence, but not for sure. I have found an assisted living facility near me but they won't take residents w/fecal incontinence. She is not ready for a nursing facility. The chances of getting her to any facility are slim, although lately she has begun to suggest that 'it's time" . I understand that a doctor may can help w/fecal incontinence but I doubt she would admit it to him - or me. Her carpet is evidence of her struggle and I feel badly for her. She is a beauty queen type & looks great for her age. I would like input on dealing the the fecal incontinence issue and general info that might help. She also refuses to give up her jewelry and baby grand piano to live in a small room - but that's all she can afford. My sister is not on board and suggests that we wait until there is an 'incident'. I feel negligent & prefer not to wait for a crisis. Any advice is appreciated. I am very stressed about this every day & can't sleep at night. Thank you.

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I agree, I think your mom is at the point where she requires nursing home care. Our problem was similar in that everyone didn't agree that MIL had dementia - seriously. She could have wonderful moments one hour and be terrified the next hour that the blood covered people she was seeing in her home were going to hurt her. She was brought home from the state police of the neighboring state where she had wandered while driving - was taking huge amounts of Xanax as she could not keep track of her meds. Taking Xanax had become one of her dementia habits - is there a better forum word for this- when people with dementia repeatedly perform a task? Luckily, as far as we know anyway, she never hurt anyone, but she did start a fire in her home. One of her systematic habits was CANDLES!! When we cleaned out her home we removed hundreds of candles along with books and boxes of matches and gas lighters. The same lady who ran into the street one morning screaming for help as there were blood covered strangers in her home that would leave - thank goodness this triggered her being evaluated by professionals at a geriatric psych unit. With the official paperwork, the family arguing ended and reality set in for everyone. Of course 5 months later when she was visited by her lawyer in the guardianship proceeding she had such a great day that he had to tell the judge that he could not see any sign of dementia. Luckily, she agreed to the guardianship and we had several doctor evaluations for the court.
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Yes, my sister (a CPA) has a Durable Power of Attorney & handles all of her money. She lives out of state & is in eternal fun & play mode. She insists that she 'won't listen to anything negative' (that leave this situation out & most of life....) Boyfriend isn't helpful about advising me on her status. He says she is just aging normally. He's a very sharp, successful & married businessman. Their relationship is a mystery for 20 yrs now. She has been married multiple times. I agree about her not driving but my sister & boyfriend don't. I may get my husband to disable something on the car so it won't start?? but then she needs to get to the store for food??? He is not the type to shop or cook - she cooks for him (yuck!) I will send the doctor a note and go from there. Thanks for sorting out the priorities. I feel better already. Ultimately, it's all up to the Lord.
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First things first:

1) Do NOT under any circumstance take your mother into your home.
2) A person with dementia should not drive. It isn't just about memory or slowed reflects -- it is about judgment. If you mother no longer has enough good judgment to handle food properly, how is she going to handle something out of the routine when she is driving? This is one case where waiting for an incident could be fatal, not just to your mother but to innocent bystanders. There are lots of postings on this site about stopping unsafe elders from driving. Get her off the road!
3) If there are things you think the doctor should know but you don't think your mother will tell him/her, then tell the doctor yourself. A doctor may not be able to discuss your mother's case because of privacy issues, but can certainly listen to your input. Call or write a note.
4) The daily visit from the boyfriend is a good supplement to your daily calls. But at some point in the course of dementia (and it comes pretty early, really) the patient needs 24/7 monitoring/supervision. It sounds like your mother is at that point.
5) Does anyone have POA?
6) It may be necessary to wait for an incident. Not because that is the best thing or even a good thing, but in some cases it is the only thing. Continue to try to talk your mother into considering assisted living or a foster care home. Continue to look into what is available. Would the boyfriend be in favor of this? Surely he sees how at-risk she is. But ultimately unless she is declared legally incompetent or you get guardianship, you probably cannot force her to move. If she needs to go to an ER, if she sets a pot of marinara sauce on fire, if there is some incident, that will give you a wedge.
7) Sort out the things you can do (contact her doctor, notify the DMV, look for suitable residential options) from the things you have no control over (what the doctor does, your mother's decisions, etc.) Do your best on the things within your control, and let the rest go. This should reduce your stress levels. Things that we can and should be able to do everything is very stressful!

My heart goes out to you. Best wishes as you struggle with this.
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