How to get care for a very high functioning 81 year old Mom with dementia?

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My mom is 81 and has memory issues. There's been no specific diagnosis. It isn't safe for her to drive any more and she's just starting to run into issues with forgetting how to make a full meal or forgetting to shower. I occasionally see her with several pairs of pants on or her PJ top on under her day time shirt. But, she's high functioning. Very chatty. Moves well. Gets up and down stairs with few issues. She's still living alone and a very large house with lots of steps.

She's completely resistant to any help. She's been single for over 30 years. Raised six kids on her own. Has always managed her own finances, house, etc. I've looked around and am just stymied by where to get help.

We've tried in home help but the ladies who come just try to go through all their Alzheimer's training and try to make friends with my mom or blow up her ego by talking about how wonderful old people are. My mom is instantly distrustful and thinks they are trying to sell her something.

I've checked out independent living in the area. That's ok but there is zero provision for residents with memory issues. She'd be responsible for going to get the food. She'd be responsible for signing up to take the shuttle to the grocery store. She'd be responsible for getting to the exercise classes.

I've checked out assisted living in the area. OMG - so very depressing. Everyone is in wheel chairs. No one is speaking or chatting. Staff is most of the places were pretty awesome and kind but the level the folks in the their care is so very far below where my mom is. Crazy depressing for an active woman like my mom.

I've checked out three different memory care places. All claim to be award winning, cutting edge places. Again, most of the people close to non-verbal. Many in wheelchairs or using walkers. Few offer much chance for outings, etc. All the places presume my mom is incontinent and will need help bathing. No way, no how would my mom allow someone to bathe her.

I need a place where folks are active, moving around, chatty, can easily take trips off campus to the grocery or area attractions BUT also has cueing. Where someone will remind my mom / invite my mom to go to the store, go to dinner, take her meds, etc.

So far, my mom will only accept help from her children and then only when we can do it in a way that doesn't have the appearance of helping. We just happen to stop by with food. We just happen to offer her a ride to the grocery. Since we are around, we just happen to offer to change a light bulb.

Where is that place??? That can do all these things for a person with memory issues???

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Hm. I think I'd go back to the agency/agencies you've tried getting home help from, and insist on being involved in interviewing. Somewhere there will be a calm, experienced, knowledgeable person who has been through this herself and understands exactly what the situation is - when to offer help, when to prompt, when to leave well alone. I know of one, name of Audrey, but unfortunately she's coming to us on a Monday afternoon and is busy the rest of the time. Keep at it: you'll find your Audrey eventually.

I'm sorry you're unimpressed with the facilities you've looked at. Again, I'd keep looking. We visited a long-term care centre yesterday and were shown round by the manager. During our tour, on the dementia care floor, we met a very smartly dressed lady who, however, was wearing no shoes over her stockings and was clutching a scrap book and a dozen daffodil leaves. The manager went over, had a pleasant chat with her, kindly reminded her that she hadn't put any shoes on. The lady didn't want to wear any shoes that day, because she was "in a hurry to get to her class." Ok, fine. We went our separate ways with a smile and a nod.

If my mother decides she wants to try residential care, that's exactly the attitude I want from the staff. I want her to be able to please herself provided it isn't a risk for her or for anyone else. In a fully carpeted facility, not wearing shoes - if it's something the resident chooses not to do that day, and if the resident is in no danger of slipping or tripping - is not a problem. So the manager left her to it.

The other thing that impressed me is that the manager explained that if a resident wants to go out, the staff won't stop her - they'll go with her. "They're not prisoners," she explained, "we're here to help them, not to tell them what to do." If residents wander from their rooms during the night, the staff will check they're clothed so that they don't shame themselves or frighten others. The garden, open during summer, is completely contained within the building so that able-bodied residents can walk around it unaccompanied without risk of getting lost. Essentially, the staff seem to see their role as being to stand beside the resident and act as his or her right mind, guiding only when needed.

Well, I'm impressed. I'm hoping my mother will agree to try this place, so that when her dementia gets worse there will be a safe haven for her that won't make her miserable. The organisation is called MHA, Methodist Homes for the Aged as was when it was founded eighty years ago or so: if you look them up, maybe they'll have links with US organisations. I can't recommend their approach highly enough.
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I understand what your saying, it is very difficult finding the right place not to mention the cost. My mom is in an assisted living home Memory Care Unit. Yes they are locked in so they can't wander off which is part of the disease. The problem I see is the cost is very high and trying to get help through Medicaid is a real challenge. You have to be literally broke to hopefully get any kind of help. Have you looked at bringing in a home health aid to assist your mom during the day. This maybe a short term option for you until you and your family can figure out the best course of action for the long term. Good luck to you!
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I am so frustrated at this point. There really seems to be no place for a person in my mom's condition to go. Either the person needs to be totally able to care for themselves or the are offered a locked ward. Basically, my mom needs a friendly keeper who is willing to deal with the 1,000 repeated questions. Being that 'friendly keeper' is what family has been doing up to this point but it is exhausting and impossible to do and also have a busy stressful full time job. My mom cannot be the only person with dementia that is able to dress themselves and walk up and down stairs and hold a conversation.
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What you described, everyone in wheelchairs, no one chatting sounds like a nursing home, not an assisted living facility. But I have come to realize that there are different terms for these different areas of living depending upon where you are. Here in MO "independent living" is just that. You have an apartment in a retirement community. No nurses. No med reminders. You are totally independent but around other seniors for social gatherings, meals, happy hours, etc. In "independent living" you might get the services of a housekeeper once a week.

Then there's "assisted living". This is for people who need more help but not by much. You live in an apartment by yourself that has a kitchen, living room, a bedroom or two. There are shuttles going out to Walmart or Walgreens or the grocery store. There is no regular nursing care available. There aren't people sitting around in wheelchairs rocking back and forth, unable to verbalize or participate in social situations. That would describe a "nursing home". This is where there is nursing care 24/7. You eat your meals in a dining room 3 times a day. You live in a room as opposed to an apartment. Like a hospital room.

It sound like an assisted living would be more appropriate for your mom than independent living. However in assisted living getting what she needs from the outside would be her responsibility. Taking her medication would be her responsibility. And she would have to qualify for assisted living (or independent living for that matter). The assisted living management would have to approve her and I don't know where they draw the line with memory issues. Is your mom even willing to move? As you know her dementia will progress and she will be unable to function in her own home alone. It's good that you're beginning to think about this now. And your mom may be between places. She may need a little more help than assisted living can give her but not be ready yet for a nursing home. You may want to wait until she's ready for a nursing home (in which case someone will need to help her everyday) or try to hurry up and get approved for an assisted living but that takes a while. They may not have any openings, there may be a waiting list....these things are very common. But the more confused your mom is the greater the risk that she will fall and if that happens and she is injured the choice will be taken out of your hands.
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