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My sister passed away at 65 from frontal temporal dementia and I cared for her and my mom at the same time. My mom keeps asking for her sister Debbie. I am her daughter and I am Debbie. She does not have a sister named Debbie. Her sister Jean lives in Texas and I have my mom speak to her once a week. She keeps telling me she wants to be with her sister Debbie. I have been in my moms life and very close to her for the last 61 years. This is so frustrating to me that she can't see me her caregiver as her daughter Debbie. Her Dementia has progressed rapidly in the last 3 weeks. Now I feel I can't leave her in the room by herself. Yesterday came home from work and we were laying down taking a nap. She got up while I was asleep and started going in all the cabinets and wrapping all the items in paper towels and placing them in a garbage bag. When I asked her why she said a man told her to do it. There was no one else in the house at the time. It seemed like she was trying to do this without my knowledge. I went to the store and purchased child proof locks to put on the cabinets but I fear that this now the time for me to check into placing her into an assisted living home. Have checked with most of the assisted living homes in my area and they are all full with long waiting lists. I am seriously thinking of opening my own assisted living home but don't know where to start.

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That's one of the most demanding things about caregiving a person with dementia. Eventually, they require constant supervision. I recall toddler proofing the house, because my LO had no idea what to do with items. They could hurt themselves with sharp objects, electrical appliances, cleaners, medication, etc. I'd be careful to not leave her alone. Do you have outside help coming in to help you?

I might have her checked out by her doctor if she has this new behavior. Any change in mental status, could indicate a UTI or other illness. Just to rule that out. It could be the progression of the dementia though.

I know that it must hurt for her to not seem to know you, but, I'd keep the faith, because deep inside she does. I think holding on to that helps. On some days, those memories return, with some people. My LO's memories fluctuate. She may not know my name, but, she knows that I am a person who loves and cares for her and that seems to make her smile and feel content.

I don't know the requirements of opening an assisted living facility, but, there seem to be A LOT of rules and requirements. Most states have regulatory divisions that license and oversee all long term care facilities. You should be able to find them on line for your state.

As you check with the Assisted Living facilities, I'd ask them directly what level of dementia they are able to accommodate. My LO had to be moved to a Memory Care facility out of a regular AL due to her increased level of need. You might discuss her behavior with her doctor. I found that when it was prescribed by a doctor, things moved faster. The Memory Care unit was better able to work with her on her level. Regular AL staff didn't seem to have the training or ability to attend to her behavior.
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My mom just had a check up with family doctor including blood work and urine and kidney function. She is in excellent health per her doctor. She takes no meds and she can use the restroom on her own with no problems. She has never lost control of her bladder or bowels. Her physical stamina is exceptional. She can walk and move as well as anyone half her age. Her mental state is of great concern to me. I have someone watch her for 4 or 5 hours in the morning when I go to work and her caregiver brings her to my place of business. She is able to be with others and I find small easy tasks for her to keep her mind busy. This is a routine and has been for the last 2 years. Now I have a hard time understanding what she is talking about. She sees things that are not there and talks to people that are not there. I struggle with decisions I need to make but want her to be happy and secure if that is possible.
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Oh, I see. It sounds like she is doing well, but, as the condition progresses, her needs and abilities will change too. I'd read a lot and talk to others about what to expect with the decline. My LO has a type that caused her to decline quickly, including falls, fractures, incontinence, hallucinations, etc. Since you are very concerned about her mental state, I'd get a consult with a geriatric psychiatrist while she is still able to communicate and let him know what she is seeing. If the hallucinations don't bother her, they may not treat her with meds. At least you could get some answers. My LO used to see little animals playing in trees outside her window. (Not squirrels, but dogs and cats.) She also believed that her doctor slept on a couch in hr Memory Care unit. I went along with whatever she said, as long as she was content and not frightened.

You can also view some online videos on you tube by Teepa Snow who has some great tips on understanding dementia behavior.
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Hi Maricopadeb,
I'm sorry for the loss of your sister, especially from dementia at such a young age!
What a difficult life caring for them both and now caring for your mom who has obviously progressed with her dementia. Be sure to take good care of yourself in this process.
My mom is in stage 6 Alzheimer's and she knows (most of the time) that she has a daughter named Susan. (I'm her only child.) She also recognizes my face but can't put the two together. She asks me my name and I respond "Susan" then she'll tell me she has a daughter named Susan who hates her and who she hates! (how sad). She can't reason that 'I' am her daughter, because she likes me (who she sees) but hates her daughter. There is no explaining/reasoning with her. She doesn't/can't get it. Poor thing, at this point, her communication is limited to asking 2 or 3 questions over and over. It's not their fault for not being able to recognize a name with a face. Their brains are being eaten by the disease. However, don't fault yourself for having a hard time with it either. It's rough to watch your parent decline. Why can't they just know this ONE thing, right? Because they have a brain disease.

I agree with having her tested by a geriatric psychiatrist to determine her level of disability.
I wouldn't be looking for an assisted living facility because, clearly, your mom is suffering from a dementia. Look for memory care facilities and the sooner the better. The memory care facility also does the job of assisted living but with a focus on dementias and the care they need. Assisted living is just for physical assistance NOT for confusion/dementia.
If she is wrapping things from the cabinet while you're asleep, what is she doing when you're at work? Time is of the essence. God bless you both.
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maricopadeb, learn everything you can about Dementia, the more you know the better it is to understand what in the world is going on.

Scroll down to the bottom of this page to the blue section.... click on ALZHEIMER'S CARE.... go through all the articles even through it says Alzheimer's, as Alzheimer's is a form of Dementia. The articles will give you suggestion on how to handle certain situations.

With what your Mom was doing with the items in the kitchen cabinets and saying a man told her to do that, that is just part of the Dementia. It is always best to agree with what Mom says, it's less of a mental battle where no one wins.

As for professional care. As Sue mentioned above, your Mom would need Assisted Living/Memory Care. Only look for those facilities. Many times they are part of a regular Assisted Living, usually one floor is just Memory Care. My Dad was in Memory Care and he really liked the place and the Staff... loved the food :)

Oh, my Boss would sometimes bring his Wife, who had Alzheimer's, to the office but it was constant watching of her. She couldn't focus on anything but would go through the motions of thinking she was working as she was the founder of the business. We were up on third floor, and in a blink of an eye, she was going down the stairs as fast as she could. We were able to stop her before she went out the building's door. No more visits after that. Boss had a full-time caregiver at home for 12-hours each day, and he would take the night shift, but he rarely got a good nights sleep.
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