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Good morning, My FIL is 89 and for the last several years we’ve suspected some form of dementia. In the last year it has become painfully apparent, coupled with a 2 hospitalizations and 2 rehab stints. He and Mom are now in Assisted Living. A memory care therapist comes in twice a week to see Dad. She has assessed that he is in the Middles Stages and gave us a booklet from the Alz. Association. Dad actually seems to fit in several of the categories, including Late Stage. Is it normal to be all over the map like that? The therapist told me that every single dementia patient is completely different from other dementia patients. Similar symptoms, but different progressions?
What is your experience?
We just don’t know what’s next and how to plan for it.

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Even though my DH (96) doesn't test positive for any dementia - he's still all over the map.

I just take it one day at a time and we do the best we can. Some days are just better than others. For a while he was sure he had 3 wives, all named Linda. If I ever find the other 2, I will slap them silly for not helping out around the house.

Sometimes we look for problems due to any diagnosis. Take it one day at a time and don't look for problems - just deal with them when they pop up.
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First of all, information about the stages of dementia is pretty much always all about Alzheimer's - it is one of my pet peeves that while the medical community and the Alzheimer's society do acknowledge there are other forms of dementia the amount of information always just a paragraph or two tacked in as an afterthought. Then there is the possibility of mixed dementia - having Alz and some other form of dementia, very often vascular since older north americans tend to have comorbidities of atherosclerosis, heart disease and stroke, diabetes, kidney or lung problems, all of which can effect blood supply to the brain.

IMO the best you can do is use the stages as a very general guideline, if dementia isn't complicated by other diseases then until profound physical disabilities show up they are not end stage and most likely have years of life left.
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Yes, on any given day my mom was all over the map. And it would seem to change each day. Once you meet someone with dementia you have met someone with dementia.
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My Mom has dementia and diabetes, TIAs, and hydrocephalus (and a host of other issues like high blood pressure). She vacillates between stages 6 and 7 (7 being the final stage). Yesterday she tried to eat her cottage cheese using the drinking straw and didn't know what her spoon was for when I pointed it out to her; or after she dropped her spoon while eating her pudding and I didn't see that happen, she used a white board marker to eat her pudding. Usually she says she has three children, but shocked us all when last week she said she had five (correct). A couple days ago when she was in pain I started to say I'd get her pain medicine and she asked, "Aleve?" Blew me away she actually knew the medicine by name!

Very likely your FIL's dementia will be all over the place. With all Mom's issues we've lived day-to-day for years. We NEVER expected to celebrate her 89th birthday, but here we are today celebrating it.
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Dad's PCP doesn't believe at this late stage that putting him through a battery of tests to find out which specific kind of dementia he has would be worthwhile or change the outcome. They would never medicate him with any of the drugs that are supposed to stop the progression of the disease. Too many side effects and too little real life experiences from those that are on it, that say it's working.
The doctor is at least able to tell us that it is some form of dementia and not just "getting old", based on his symptoms--both mental and physical.
The Memory Care specialist is a therapist that comes in once a week with a masters degree in PT/OT/ and Speech Therapy. She works with him to help improve his spatial understanding of where he lives, helps him with his fine motor skills, helps with recall of things that he is losing mentally (can't remember that he can't walk and will just get up, take two steps and fall down). Her main objective is work on his cognitive and physical decline to help him gain some control of the sadness he feels about not being able to do the things he used to. Unfortunately for him, he's at a place in his disease where he's 90% clear on the fact that he can't remember things and can't do even the simplest task without help. His body is going before his mind. :( He slips easily from being fully engaged in a conversation to being confused about who we are and what we're talking about.
In our case, the care is covered by Medicare. It is ongoing PT and OT.
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I always said I dislike the "stages"
My Husband was never a conversationalist and he stopped talking very early on in his diagnosis. (he was "diagnosed" with Alzheimer's but I think he also had Vascular dementia)
But there were things that he could do far longer than what was written in the "stages" info.
He was always a great eater and fed himself up until about 2 weeks before he died.

Take the stages as a guideline. Feel good when your FIL can do what he can, help him do what he struggles to do and do for him what he can not.
Have a sad moment when he looses an ability he had a week ago but be grateful for what he still has.
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You can't plan the stages of dementia and each patient is different. Each day with my husband is totally different from the day before and I can't preplan the outcome. You just have to cope with the decline of their mental state.
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Man, I've never heard of a Memory Care therapist. What do they do? Does insurance cover this and what credentials do they have? Just very curious.

Has your FIL been officially diagnosed with dementia or cognitive decline by a doctor? Do you know what is causing the problem, such as Vascular Dementia, Alz., Parkinson's, etc? There are many conditions that can cause the dementia. And, depending on that, it could explain why your FIL is all over the place when you look at charts or stages. Most of those stage descriptions are based on people who have Alzheimers. But, some people don't have Alzheimers. Some have Vascular dementia, Frontal Lobe, Parkinsons's, etc . or it can be a mixed variety. Plus, it could be something else too. I might have him checked for UTI or other infections, just to rule out other causes.

My LO was diagnosed with Vascular dementia, and later, it is thought that she may also have Alz., so, that means mixed. Her progression was not according to the descriptions found on the Alz. chart, but, as she has progressed now to late stage dementia, her symptoms now are on the chart for Late/final stage dementia.

I might discuss it with his doctor in order to get a better idea of just what is going on. I hope you'll get more responses from others who have information on your situation. I know it's so stressful as we want to prepare ourselves, but, don't know how.
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I agree with tperri123, you can't plan. That is so hard for me because I need a plan. I need Plan A, then A-1, then A-1-a and so on. I am finally coming around to understand that I can't plan this. Very difficult.
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Did you ever read a book on childhood developement? - some kids did the walking easier than others - at 7 months my daughter got out of her car seat on her own! & that was not in any book!

The same way for dementia stages - it is not '1 size fits all' but an averaging however it depends on the person - a person's life interest might change what they decline in because walking, talking, eating, etc all take different parts of the brain - so it could be that dancer with little interest in food might walk longer than eating well because there were more pathways there or the opposite you never know how dementia will progress then if TIAs are a factor then that throws a monkey wrench into everything

In other words it is a crap shoot how a person progresses & no 2 people are the exact same [not even twins] - use the guideline literally as a line of actions to guide you but don't make it in stone -
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