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Our mom is in an MC facility about 30 miles outside of our metro area. We are, for most part, happy with care, but notice there is a distinct lack of communication between clinical and admin. We are very happy with clinical care.


I think my mom has progressed to a different stage of Alzheimer's. Is it common or not to want to be informed of that? I did not recognize her yesterday at first. The good...she was out in common area instead of her room. The bad or maybe not bad per se, but giving me consternation, was her appearance. And abilities. She can't stand unaided. Can't walk. On diapers now. As opposed to a month ago.


What bothers me the most is I did not recognize her. She was so out of it. Her hair is much longer but she wants it so. I would give anything to have long hair, says she. She wants a braid I think.


She wanted us to see a garden that exists nowhere there. So going back in time prob.


How do you handle these transitions when they are so dramatic? This is hard. Thank you in advance.

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I found that Alzheimer’s has three distinct phases
they don’t slide into each other they take a giant step down. Things will be at a certain stage for about 3-5 years then there will be a sudden drop down to the next level
Generally, Level one mostly goes unnoticed or misdiagnosed until the drop down to Level two when the disease cannot be ignored. This is where third parties become involved and assessments and future plans are put in place
Level three is when permanent full time care is required. Quite literally a person can go from continually walking to sitting in a day chair all day, overnight
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My mom did the same thing. I went a couple of times a week for the first year then she started forgetting more and more and I was wearing out while also caring for my husband who we now know was in the early stages of dementia. I started going every week on different days to see how well her care was with unexpected visits. I also carried special foods/treats she loved. But she fell last summer and hit her head. She also had a uti and it was all downhill from there. One week she knew me, another she didn't. She swore she was 112 but was 89. She talked of being at my home picking up the pecans and how many she had shelled that day. She talked about the garden she was planting and about all the property she owned including the NH she was in. Then she quit talking and we communicated with her blinking her eyes for yes. A few hours before she died, she spoke one word. Either GOOOOO or HOMMMEEEE. It was not clear but that was all that she had said for some time. I'm glad she isn't hurting anymore but, I miss her so much.
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I sometimes wonder if that is why my mom's grandchildren and my brother don't visit. They might be afraid they won't recognize her. I always do immediately because I see her every day, but like you maybe some day I won't. How distressing for you. But I do want to say this: What if you mention to the MC people that you have noticed certain things going on with your mom, not just her appearance, but also her declining abilities? They should, I think, be aware of these changes and provide more help for her. When I notice things not done for my mom, such as her wearing the same clothes for three days in a row, not remembering to put lotion on her feet, or her hair not being clean, I tell them at her assisted living and then I notice they do actually start to pay better attention to what my mom can't remember to do for herself. Maybe a rapid decline is common. I'm not sure, but it seems rather drastic.
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PandabearAUS Apr 2019
Yes. I agree. I would visit my mother once or twice a week and I would walk down towards her room as if I was an old style nursing Matron doing the rounds. If her hair was dirty I would politely buy firmly point it out. If there was a lingering smell of urine about her or her bedding I would insist she be changed immediately. I only had to do this once or twice until it never happened again.
Vigilance is the key to constant good care

In the beginning I noticed to my horror she was wearing clothes that were practically rags and had to be 20-25years old. I asked “why is my mother dressed like this?” They told me this is what your father brought from home I was livid. I immediately went through her entire wardrobe and found one decent dress and asked for her to be put in it
Then I gathered everything up and told them to bin it and that I never wanted to see these outfits again. They were very caring but told me my father would not like it so I replied, “ you tell him this is my doing and if he has I problem with it, see me”. They happily dumped her clothes then I went out and bought new things for her. Of course the old bugg*r never mentioned it to me. Pretty sure he knew better not to
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As much as we are the same, we are different. The vision of all the little old wizened bodies with the downy heads nodding in a commons area are similar somehow to all the tiny babies swaddled in the nursery. And as much as they look the same as a group on closer exam the individual appears.

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!
Hunter S. Thompson, The Proud Highway: Saga of a Desperate Southern Gentleman, 1955-1967
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Although my late mother did not have Alzheimer's, she demanded to live alone in her own home 500 miles from me & 3000 miles from my brother. She was keeping house -not so much!! She went from being on a cane to needing a walker in < 2 months. This was shocking, but the clincher that made me move there was a blood pressure reading of 60 over 40. So I do believe that the changes you saw in your mother are real. My mother's mentality was "I can SO keep house." Umm - NOT SO MUCH. My mother always kept herself clean. Now I saw a woman who, sadly, had an odor. Where had my mother gone, I wondered? And yes, I moved in with her out of need.
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We are entering year six of this terrible journey. My wife has always been viewed as drop dead beautiful by many men and women who have known her over the years. I had two emotional setbacks this week; two women (nice people) asked me if she was my mother. They meant well but it further broke my heart. I am 82 and she is a beautiful 80.
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Segoline Apr 2019
Darby, that had to be do difficult for you.,I am so sorry. You sound like such a kind person. Hugs sir. Big ones.
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My mom was a functioning person at 90, when a fall sent her to the hospital. She came out hardly able to walk and with a UTI that the 1st hospital and rehab facility ignored until I stepped in the second day she was there. She was hospitalized to a different hospital, ( and later a better rehab facility, though the first one was 5 star rated), with delirium and she was never the same experiencing delirium out of the blue 6 times. She progressed to a bedridden person I could hardly have a conversation with when just the week before we would sit and chat over coffee. She would yell in the middle of the night and have visions. The sudden decline was shocking and continued until she passed away on hospice in my home nearly 2 yrs. later. I have never gotten over this, still have some PTS 3 yrs. later, nor did I get any answers as to what the heck happened to my previously competent businesswoman mom.
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anonymous272157 Apr 2019
My aunt's last  (very last) hospital visit was similar, though she had declined more than Kaie22's mom.  She  failed the 'walk test' and acted like she'd had a stroke (one foot dragged as she struggled with the walker).  CAT scan did not show a stroke, but she'd had TIAs before, so doc in ER had her stay for observation - which turned into a 4-day stay, then rehab., then NH for memory care.  Less than 2 months later she died.  I was with her that whole last day, and many before.  Horrible to see, and glad I did it.

I am so sorry this happened to you Katie, and I understand.
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Thanks for a truly honest answer, MidKid. I love your genuine replies.
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This kind of hits home with me today.

Due to family infighting and such (basically, the norm) I do not see mother very often. She lives in an apt with YB family.

I usually try to see her every other week. There is nowhere to sit, to visit, I have a bad back that doesn't allow me to stand for hours on end...and somehow, going to visit someone and having to stand up the whole time makes it feel quite uncomfortable--she never offers to clean off a chair or do anything to make you feel welcome...you just stand until you can't take it. (Hoarder--need I say more?)

Anyway--I DO go see her, unlike the 3 other sibs who are totally MIA. They don't call or see her at all. She has her own little life and seems content with it.

I had not seen her for about 6 weeks. We had a daughter come to town with her little family and mother didn't care to see them. So they didn't go. Then I got really sick and was laid up for couple weeks.

Seeing her yesterday--wow. She's really failing. She was making her "lunch" this salad thing she eats every single day. I didn't offer to help b/c she doesn't like me touching her things. It took her 1/2 hour to make a tiny 6 ingredient salad. Something that I could have done for her in 5 minutes.

Just watching her huff and puff and groan (OMG the GROANING) through this ordeal...was heartbreaking and also a real 'show' for me.

Her place stinks to high heaven, I have quit offering to clean, it's pointless, she doesn't trust me.

The worst part for me, I can handle to physical changes, but she was walking away from me and I saw that she had had a bowel accident and her pants were all stained. Just a small area, but VERY noticeable. That's how bad her place smells, you can't smell a messed in depends.

I can't do ANYTHING about it. Brother is like a drawbridge guard and will not let me do much of anything for her. He kiboshed 3xs a day care--obviously, she is needing help with toileting now, but I have been down this road with YB before and it's not worth his wrath to make a suggestion as to helping her in any way.

This is the awful part of watching your LO's disappear in front of you. Esp when you are not allowed to do ANYTHING to help.

And the OP was right--I don't even recognize this old, angry, tired woman. EVERY SINGLE TIME I see her she says "I could stop taking my insulin and I'd be dead in a week". I just respond, "yes, mom, you could, if that's what you want."

I just SO DO NOT want to do this to my kids!!
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Isthisrealyreal Apr 2019
I would think that this situation could be considered elder abuse.

You need to get APS involved, regardless of the history, leaving her to sit in her own feces is abusive.

You now know and to do nothing is unacceptable and makes you as guilty as your brother.
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I have my Moms last licence and her ID. Now NJ allowed us to use our previous picture if there was not too much difference. So Moms licence picture could be 8 yrs older than her ID but even in 8 years her decline is drastic. If four even more so. I watched my Mom age and get frail. I have a hard time getting that picture out of my head. Trying to concentrate on the years before but hard.
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When I saw the footage of Notre Dame burning I wept. I went there with my mom, years ago. I am certain I am making a transference of emotion due to Saturday visit. I am certain of it.

This day in history sucks. Lincoln succumbed to injuries. Titanic sank. Tax day. Boston bombing. Now this.
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NeedHelpWithMom Apr 2019
Me too. So horrible this happened. Heard someone say on the news they felt like Christ was crying over the cathedral burning. So very sad.

I am Catholic so this really hits home.
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Both my Mom & Maternal grandmother had Alzheimer's Disease. As loved ones progress through the stages of the disease there will be changes. As far as appearance, one thing I noticed with my Mom is that she didn't want her head touched. The beautician at her memory care facility had a very difficult time with her doing haircuts & such. I don't know why, but she wasn't that way before Alzheimer's. So, I limited the number of haircuts she would get. I think with the disease they "benchmark down" to a lower level, such as wearing diapers, not walking etc. Sadly that's the way Alzheimer's progresses, but inside they are
still your loved one. Often a food that they liked will trigger happiness and a smile. It seems like foods they always enjoyed they will still enjoy with Alzheimer's. Find a way to connect through all the physical and mental changes.
Many blessing to you.
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It is tough to see drastic decline. I see my LO regularly, but sometimes, it still takes me off guard. I used to take photos of her on a regular basis, but, recently, I stopped, because, they would be upsetting to see.
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Yeah, I sometimes didn't recognize my mom in amongst all the other residents in the lounge, and I went to see her every day.
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Hey grannie, I think your comment of " grieving piecemeal" is important and a common thread. Thank you for saying so. As more and more if them disappear, that's where one finds themselves.

Thank you.
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Yes, I had an ER visit for severe asthma, found bronchitis, and I stayed away about 10 days.  Her haircut was shorter than I was used to, and I did not at first recognize her.  Sometimes near the end changes happen rapidly, and they did with my aunt.  I've grieved piecemeal as she lost ability, memory, and it was difficult.  But I also pre-grieved with my first husband as chemo and cancer slowly took him. I wish I could stop by and give you a big (((HUG))) along with flowers and chocolate.
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Maybe I should add some context here. I was very sick and missed two weeks of visitation. So it was alarming to me. I am sure this happens with many, I was just unprepared. And the the incontinence is very new. I love my mom. But I wish she would pass. This is not the life she hoped at end.
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NeedHelpWithMom Apr 2019
Segoline,

I’m so sorry. Hugs!
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