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My wife was diagnosed with early onset alzheimers about 8 years ago. Progression of the disease was slow at first but the progression is very fast. Some mornings she recognizes me, but by early afternoon she is agitated and wants to go home. She can't remember how to do anything anymore. She is still physically healthy, but I have to help her do everything because she doesn't remember where she is in the process.

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Just recommending an appointment with an Elder Law Attorney to get placement information in motion (Memory Care is expensive; you need to learn how to finance that care) and a joint meeting with a Geriatric Psychiatrist who can prescribe medications.

Do this will give you insights into setting up your own end-of-life care.
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Now is a good time to think about placing your wife in a Memory Care Assisted Living community. Why wait any longer when she's already in need of so much care? She'll get a lot of socialization in the community also, crafts and games to keep her busy, and you can go visit her there anytime. My mother lived in a Memory Care AL for nearly 3 years and received an excellent level of care by aides who truly loved her.

Best of luck to you, Brian.
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Annie65 Aug 2022
So glad to hear of your good experience with memory care. As in my reply mine was not good at all and I pray that whoever posted this question finds some place as good as you describe
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I agree. Sadly, Now
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Immediately, and professionals will be able to manage her care much better than it’s possible for you at home. So sorry.
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I’m sorry you’re both going through this. Now is the time to start visiting places you may be interested in and gathering information. Knowledge is power, you’ll feel more in control knowing more about your options and getting a visual of memory care places. When her care is more than you can safely provide, when it’s more than you can physically and emotionally handle, when it would be better handled by professionals with you becoming her advocate, it’s time, and it’s okay. I wish you both peace
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Look into memory care communities that are small to medium sized in nature, say 6-30 people.

My friends mom was in a board and care that cost about 5k in 2016. It being on the smaller side, everyone tended to congregate naturally with lots of 1 on 1. The top rated mc here is only 23 units, costs about 7.5k, and offers different choices of activities. One can have aides take them out to shuck peas in their vegetable garden or look at their chickens. If they don’t want to go out, there’s the indoor activity room. And if a senior would just like to stay in their room and watch tv or read, they will go in periodically to check up on her, make sure she’s not wet or hungry, watch part of a show.

These options are far more than you typical corporate ones.
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My only advice is if you do decide on memory care please visit often after your wife moves there. I thought I had found the perfect place for my mom. It was in a home with a lovely yard and only 9 residents. And the owner sold me on how wonderful it was with activities, good food. etc. Because I was there a lot I saw the truth....neglect(would find mom in wet bed, not bathed, and generally ignored), and no so called activities. The residents were put in front of large TV after meals and always on news (how depressing for dementia patients!) and the food....well I guess tough as leather pork chops for people with teeth problems is a good choice e.g. And since it was summer I would take mom out into yard but in the two months she was there (yes I took her back to live with me) none of the other residents were taken outside. Terrible place!! Best of luck to you in finding a good place.
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PeggySue2020 Aug 2022
Thanks for your insight. You’re right, size isn’t the only factor.
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My brother and I had 3 in AL, 2 different facilities. One died, 2 in AL remained, one in an upscale facility that did not communicate anything, also had some drug stealing going on by an employee.

We had to move the one with dementia to MC, so we moved her out of the glitz & glam to the same place the other one is in.

Small, clean & homey, better communication, not great but better.

We visited 15 homes before we picked the original ones, do your homework.
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In our area, we have small homes with a few (3-4) residents managed by the owner with an aide or two. These can be excellent (Depending on the obvious, the character of the owners.). Would be less confusing and stimulating for a person with dementia. There is chance to establish real ties with their caretakers who will stay on. Put her in a small place, and watch that place! Much preferable to the fancy corporate AL I live in now, which is a pretty good one but...
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I find that far too many have the knowledge needed at this stage of life. It's sad that no one knows the complexity of extended care until its dropped in your lap.

Navigating this whole process with no direction is devistating. AL is NOT covered by Medicare. If you do not have long term care insurance or longterm care planned, expect your retirement savings to be depleted over time in hope's there is enough left for the other spouse.
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Now is a good time while she can still remember a little bit. I waited too long to put my husband in memory care. By the time I moved him, he was no longer safe at home. He was wandering in the middle of the night and also falling down stairs. It's hard but it will be best for her. I visited everyday and he adjusted quickly. I'm praying for you both.
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My mother is in memory care on a large, continuing care campus that has it's own rehab center. It is not owned by a chain. The memory care buildings have room for 16 residents each, private rooms. They have meals in the dining room, activities throughout the day, an outdoor patio garden area the residents can walk or sit. Musicians come and give concerts several times per week. Although it looks, smells, sounds, and often feels like a great place, there are a lot of downsides--poor communication, untrained employees, barely literate employees, high turnover among employees. Employees are generally exhausted on their day shift because they have a night job somewhere else in order to make ends meet and send money home to family in other countries. There is an overall culture of denying any problems and blaming the resident for problems. In addition to the heartache of moving your spouse, you will spend much more time than you think dealing with all aspects of the facility, especially your wife's medical care. And every time you visit, you will see the other residents who are even more impaired than your wife, so you'll see where she's headed. Added to the monthly cost of the place, you may need to hire a private duty "sitter" (usually another semi-literate immigrant) for your wife if she's agitated, or recovering from a broken bone, or recovering from a medical condition. If she ever needs regular injections, she will no longer be allowed to stay in memory care and will have to move to skilled nursing. Sorry to be a downer, but it won't be as much of a break for you as it should be.
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TeethGrinder65 Sep 2022
"Barely literate employees" are the result of poor pay. That's the conundrum. So many people need care, but NHs and ALFs are not paying, even though they are HUGELY profitable.
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I would tour Memory Care places. Observe the residents at each of the places that you tour. Different places have different memory level of residents since the kind of care for Memory Care and the type of treatment varies so much. Find out as much as you can about the different places, like visitors, what they will/will not provide, what kind of memory issues do they specialize in, bathing, toileting, cleanliness, going outdoors, whether you have to sign over health care, etc. More expensive does not mean better, however, it does mean that they will provide care differently.

You will learn a lot just by visiting and observing.

If you see no one in the hallways, that is also an indicator, especially if your wife enjoys company. Some places encourage their residents to get out of their rooms, some places prefer their residents to stay in their rooms and watch TV. (Warning: some places will recommend drugs to keep their residents in the behavior spectrum that they want.)

Look at the walls of the hallways. Some places provide tactile activity on the walls to keep the brain stimulated. Some provide soft music. Some places have to keep hallways extremely clean as they have patients that pick stuff off the floor thinking it is food.

Go to the same place at different times of the day and different days to see if your first observations were really a good sample of what is happening.

Some places have Assisted Living in the same building as Memory Care. Therefore, you could live in AL at the same time your wife lives in MC. This can make it much more convenient to visit her and for you to have company.

From what you learn, you can decide what is the proper time and place for her.

Good luck on your journey!
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brianlk: Quite honestly, you should begin the process of locating a memory care facility and placing your wife in it now.
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As soon as possible ! It takes “ time”
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In my opinion and experience, memory care will make it worse for her. She will be in unfamiliar surroundings with strangers who may or may not know what they are doing. If you can, get in-home hospice involved and an in home caregiving service. If she goes into memory care, make sure you are involved with her care. However, again in my opinion, most memory care facilities like to "warehouse" people and don't provide the care that is needed.
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Sherwood Aug 2022
You are correct!
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Keep her home with home care as long as possible. It is cheaper than any memory care, assisted living or skilled nursing care, unless she qualifies for Medicaid. Then you do not have to worry about the expense. She will deteriorate rapidly in any care facility. As someone very clearly explained the care is terrible especially since Covid.
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LoopyLoo Sep 2022
“She will deteriorate rapidly in any care facility. As someone very clearly explained the care is terrible especially since Covid.”

This is false. Believe it or not, there’s actually facilities out there that have caring staff who want the best for their patients and aren’t trying to kill people.

What “someone” clearly explained this to you?
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Mostly it will depend on you and how much you are able to take on with her care. When my mother was in that state, sometimes it took 2 people to transfer her from bed to wheel chair if she didn't assist (she "forgot" how to walk). She also had to be fed (she "forgot" how to eat and had to be fed soft foods). You have 2 basic options, getting in-home caregivers for her to help you, or moving her to an assisted living facility. The advantage of a memory care/skilled nursing facility is that she will have skilled professional care by people who know how to handle dementia, they will have ability-appropriate activities for her. If you decided to go that route, try to find a place nearby so that you can visit often and oversee her care. Wanting to go "home" is symbolic for people with dementia. It means wanting to go back to a time when they were independent and could do things for themselves. Try not to feel guilty if you decide that a memory care facility is the best option. She'll get good care there if you choose a good facility.
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The nice part of MC is that she will be included in activities geared for keeping her busy if she chooses to join. Look at activities lists when you shop arounf
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Just wanted to say how sorry I am about your situation, BrianLK.
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