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  • New to the disease with a parent

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    Old 07-06-2019, 06:32 AM   #1
    helpthemom
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    New to the disease with a parent

    About a year and a half ago, my husband noticed his mother was repeating questions and conversations while he was on the phone with her. She lived in Alaska and we are in NY. It was concerning enough that he asked her to move here and she said yes so we jumped on it.
    It has now been almost a year since we moved her here. We got her set up in an apartment in a senior community and finally just got her diagnosed. We do her laundry, have set almost all of her bills on autopay because she isn't capable of handling finances, take her to appointments and grocery shopping. We stopped taking her to our kid's events because she makes very inappropriate comments about other people, other children, and is very loud about it. She has NO filter anymore. It was really embarrassing and we weren't always able to explain to people that she has Alzheimer's.
    When she first moved here last August, it was chaotic but then we got her settled and she seemed ok until December. Since then, it seems like she has had more bad days than good. Just yesterday we took her to lunch and she was reading a pamphlet on the table about an upcoming benefit. I explained it to her and she commented appropriately and she set it down. Not even a minute later, she picked up the pamphlet and repeated her original comments. We do this often and will have a conversation 5-6 times in a row but I just didn't have it in me so I ignored her. She'll call me and if I miss her call, I will call her back within 10 minutes but she will insist she never called me. We'll set up an appointment or trip to a store and when we show up and won't remember and say "I wish someone would have told me!" Other comments she makes to circumvent not remembering is "Well, I wasn't paying attention", or "You must not have been interesting enough to remember" (this one is my favorite). She eats horribly. When she first moved her, she would buy things to make meals. Now she buys chips, ice cream, parfaits, and sometimes meat. If we mention it to her, she gets irate and says she can eat what she wants. I have started to pick her up pre-made meals from a take out restaurant with a variety or wraps, salads, fruit, soups, etc. to make sure she is getting a good variety with minimal cooking.
    She has stopped showering regularly, messes up her medication, has instances of incontinence, cleans EVERYTHING with her dish sponge (she would be mortified if she actually realized this). Yesterday she told me she just got her cat and told me her name was that of a cat that passed years ago. She remembers her other son if we call him by name but if my husband mentions his brother she'll ask "who is your brother?" Once, she couldn't remember how to get back to her apartment after walking to the management office to pay her rent (which we had already paid). The local police often patrol through the complex since it is for seniors and someone picked her up. She couldn't tell him where she lived so he went to the management office to find out and made sure she got safely home. My husband went and spoke to the local police and made sure she was flagged in their system and his contact information was with them.
    We really are trying to do our best to keep her happy and where she is. Sometimes I feel nuts because others have mentioned that she seems "with it" while they briefly converse with her, but then I have to remind myself of the big picture. She is definitely NOT okay.

    Are we doing all we can at this point? Is there more we should be doing?

     
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    Old 07-06-2019, 06:48 AM   #2
    MSNik
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    Re: New to the disease with a parent

    Hi. I feel for you and have been where you are. You are lucky you at least got her to agree to moving close by! Across the country would have been a nightmare.
    I am sorry to tell you this, but she needs to be upgraded once again. She needs a dementia ward. A locked ward where patients can roam about freely, but there are aides and nurses on the floor with doors which lock so that she cannot escape and potentially get lost or hurt herself. Sounds like when she first got here she was okay with assisted living, but its time to move her again.

    Does the place you have her in offer dementia wards? If not, where do they suggest? You run the risk of her hurting herself or someone else if you keep her where she is now. Its very hard to accept this, but you have already seen what is happening and now she needs even more care. Dementia can happen very quickly or very slowly, unfortunately it sounds like your MIL is happening kind of fast.

    I went through this with my dad. Actually, as hard as it was, I slept 100x better at night knowing I would not be woken up with emergencies that he was "missing" or "lost"... in the end it was the best thing I ever did.

    Good luck!
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    Old 07-06-2019, 07:41 AM   #3
    helpthemom
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    Re: New to the disease with a parent

    Hello, thank you for your response. The senior apartments we have her in is exactly that. No care at all. It is an apartment complex designed for seniors. It is less than half a mile from our home and we check on her daily although she will sometimes say she hasn’t seen us in weeks.

    My husband and I have talked about putting her in a memory care assisted living but she is still with it enough at times that we feel like she would not take kindly to it. I feel like the structure and routine of a facility would greatly benefit her. She does not exercise her mind much except to read. She often says she likes being alone and doesn’t want to socialize with the other seniors in her building. I have even offered to go with her to the local senior luncheons but she balks at the idea. I am going to call her today and see if she’d like to run to a store just to get her out for a bit. We find anything much more than an hour seems to really tired her and causes her to be even more “off”.

    She is young. She just turned 68 and based off of when she stopped filing her taxes, we estimate her memory really started slipping 4-5 years ago. It just got bad enough for us to notice in conversation when we asked her to move here last year.

    How did you broach the topic of moving into a care facility?

     
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    Old 07-06-2019, 06:50 PM   #4
    MSNik
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    Re: New to the disease with a parent

    I actually told my father that we were taking a trip. The memory care facility he was in was so new and pretty- it looked like an upscale hotel. He loved it while we were walking around.
    He thought that the wall of mailboxes (little sliver mail boxes) were a bank...he saw the people eating in the lunch area and called it the restaurant..he saw his room and told us that it was the nicest hotel he had ever been in- which was very sad since he was well traveled and had stayed in 5 star hotel rooms all around the world.

    He liked what he saw until we told him we were going to run some errands and be back in a few hours. (They asked us not to come back for 24 hours). When we got back he was throwing a fit calling us every name in the book and it was heart breaking... we left very upset but knew it was the right place for him.

    24 hours later when we went back he was smiling, telling us about the maid..who was actually an aide- but he took a liking to her. He told us that he could get room service..he told us that he was going to the movies the next day (they had a small theater in the building where they did show old movies). He was excited. It went like this for about a month...some days he was happy, other days he was angry- but even when he was angry, he usually forgot what he was angry about after an hour..

    The staff was wonderful and they loved him.. he adjusted within about 3 weeks.. we kept telling ourselves it was the best thing for him because IT WAS. Eventually he started having hospitalizations- he had Parkinson's disease..and he wound up needing 24 hour care, which meant that he was now bed bound in a nursing home where he received lousy care. At this point, he kept begging to go back to the hotel.
    Fortunately for him, his illness took him rather quickly...after living with it for 16 years, the last year of his life was spent in and out of hospitals and he actually died 2 months ago in the hospital- he was too weak to move him back, which was a blessing since he got great care in the hospital...but his time in the memory care unit, although trying at times, was actually very good for him. He received the type of care he deserved, he was safe, clean and well fed.. he was happy once the initial shock of being moved there wore off.

    I am sorry you have to deal with this. Its heartbreaking, but you sound very balanced and you already know she needs more than you can give her. Dont wait until its 'too late", let her enjoy what time she has left - she may tell you what she thinks she wants or doesn't want- but you know that she really doesn't know...

    good luck!
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    Old 07-09-2019, 07:22 AM   #5
    helpthemom
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    Re: New to the disease with a parent

    I can deal with this because it's not my mother. Even though I am "in it", I still have the outsider perspective. I worry greatly about my husband because he is a fixer and he can't fix this. It wears on him in an emotional way that it doesn't me. My emotions are for him, to make sure he stays grounded and in a healthy place.

    My husband and I are going to visit some places this summer and when we narrow it down, we are going to take her for lunch and see how she does. The memory clinic only diagnosed her, based on her MRI, as early Alzheimers. They didn't take into consideration any of her behaviors combined. I think that will be her next appointment.

     
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