My 74 year old mom got referred to a neurologist by her primary care. She thinks she is fine but when I called her doc they told me she has moderate memory loss and got aggressive during the cognitive test. Her whole family has noticed memory issues and I'm pretty sure she has dementia. I scheduled a neuro visit for when I visit her next but she already says she doesn't want to go. She has been a difficult person as far as I remember and is only getting worse. My dad accepts that she is declining and wants to take care of her, but he's old, too.
From what I've read, medications for dementia are kind of a crapshoot and require close tracking to see if they're helping or making things worse. I do not believe either of my parents are capable of doing this, even if my mom were willing to visit a neuro or take a prescription (no to both so far). Should I continue to push for her to see one? I'm also working on getting them to accept any kind of outside assistance and setting up their advance directives and only have so much energy to spend.
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"Mom, you're way too young to have to give in to this, I want you to see someone to find out what is going on and who can help treat it so you can keep your independence".
It is difficult because she both asks me for help and then doesn't accept advice that contradicts her world view. Obviously she is scared and I feel bad for her.
Wishing you peace during this difficult challenge.
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If you cannot get her cooperation then indeed you are up the creek until this comes to a head. And it will. You can do wellness checks. But soon enough it WILL come to EMS taking her in an ambulance for evaluation. It will be VERY difficult at this time to get anything but guardianship, certainly more difficult than getting POA. You may have a very small window of time in which to act now. That is the sad facts of the case. I sure wish you good luck. This is fairly early onset, and that's often one that progresses more quickly. OR it may be anxiety and depression. You can't know without a full evaluation.
I was reading about anosognosia which seems to fit perfectly and also explains why she doesn't think she needs POA. My dad seems more willing to talk about end of life stuff. I am hopeful that if she seems him agreeing to POA for himself she will be more likely to follow suit.
I'm narrowing my eyes at this "she got aggressive during the cognitive test" part. WHAT was said, or what attitude was demonstrated towards her, that so rubbed her up the wrong way and wasn't corrected promptly? Anyone carrying out the testing should be sensitive to a patient's signals, and if a patient is becoming stressed or upset you don't just plough ahead to the point where she is driven to aggression. Did anyone accompany her?
I should let the dust settle, then look for opportunities to discuss with your mother (both of your parents) how she would like to manage the aspects of life that she is, demonstrably, struggling with. Be specific: e.g. there are three complete daytime outfits laid out in the bed, but I can see that this morning you could only find your stained clothes from yesterday to put on. How would it be if we* put the next day's clothes ready at bedtime and stand the laundry basket in the corner for you to drop today's worn outfit in.
we* includes her but could be her + anyone - you, your Dad, a caregiver. It's important she stays in control of choosing what to wear.
What is your father's view of all this, by the way?
P.S. The example of the three outfits laid out and the dirty clothes being worn is from real life. The client thought she was fine. She could put her clothes ready. She DID put them ready. Time and again. It was just going all wrong at the point where she actually got dressed..!
In any case, today the postcard reminder from the neuro came and she called me and told me to cancel it. When I refused she said she would call herself, so that's that. I have to fly in to see them so it's very unlikely I can convince her to change her mind, reschedule it, and accompany her during the week I am there.
I told her “we” need to get a complete checkup regularly now that she’s reached a certain age, because it’s the right thing to do for her own health.
In order for me to be of help I needed a sort of baseline reading on her overall health.
I first took her to a regular neurologist, they did an MRI and diagnosed Alzheimer’s.
Then I found out there is such a thing as a geriatric neurologist, who was able to further help with diagnosis and treatment.
mom refused to take the Alzheimer’s meds, so I didn’t push with that. If it is Alzheimer’s, then it just delays the inevitable anyway, and made her have nightmares.
hopefully your parents will want to help you by cooperating and go to the Dr, as well as making their long term care plans.
1) POA/DPOA for both would be a good idea ingeneral, if it can be accomplished before she progresses too far down the road. The need can be explained as necessary in case of emergency, and if you have one yourself, even better! Show it to her.
2) NO POA is needed to be SS Rep Payee. Federal entities don't even honor them. I was able to sign up via my local SS office easily - called, made appt, answered the Qs and waited for approval. Didn't need anything I brought along OR my mother.
The only time I needed something from a doc was for her pension, which was my dad's and it too was federal. Without ANY testing, I was able to get the doc we had at the time (fairly recent addition, due to the impending move to MC) to write what little was required, although it took 2 attempts to get just the right words! Were it not for the pension, I could say I needed advanced testing and medical/doctor documentation for NOTHING.
"You are going to require proof of dementia from several MDs (or guardianship or conservatorship)."
While there are situations where this might be true, it isn't always. IF the POA document specifies this is needed, then yes. IF one has to go the route of guardianship, that will be part of the process anyway. Otherwise, there's no need to rush out and upset her to get this done. Make sure you really NEED the verification first.
My mother never saw anyone other than a PCP (and the only test I am aware of was attempted by the latest doc office about 2+ years into already living in MC!!) I never had to show proof of dementia to anyone, not the banks/CUs, not the CC company, nor even the MC facility. In her case, it was most likely vascular dementia. I base this on her weight and being on BP meds for a long long time, as well as the progression.
There are cases where the "type" would be important, as there might be medications to alleviate some symptoms (or some to be avoided as well.) But there are ways to rule out other forms of dementia, often by symptoms observed and progression. For the most part, there are no medications that really are going to help. As noted above, there are some medications that should be avoided for certain types of dementia and some medications that can alleviate symptoms, if all other methods aren't working.
Unless you really really need specific documentation for something, why put herself and yourselves through this? The doctor has identified her as having moderate memory loss AND she became aggressive during the testing. A neurologist test is going to be more intensive and last longer. Given her reaction/behavior for this initial testing, I wouldn't want to be there!
As for discussing it with her, I NEVER used the "D" word around my mother. First of all, she mistakenly thought it meant you were "off your rocker", aka crazy. It doesn't mean that of course, but there was no changing her mind, even before dementia kicked in! Each person has a different experience, but often there are comparisons in symptoms and behaviors. In my mother's case, her world view was regressing in time. There was clearly short term memory loss (forgetting she said/did something, repeating statements and questions multiple times in short order AND denying there was anything wrong with her.) She was beginning to forget more recent activities or people (she was confusing my daughter with one of her cousins, someone I'd heard about a lot but never met!) She would insist that she was find, independent and could cook (nope X 3.) She would also state that yes, she might forget things, but she was old and entitled to forget things once in a while - problem is it wasn't once in a while, but there was no point trying to convince her otherwise! It's easier to go with the flow and work around whatever they believe.
Best wishes and keep trying but, in baby steps.
"This routine continues until they turn about 75 years of age or if, for whatever reason, they have limited life expectancy."
Several online sites suggest mammograms after age 75 offer little, if any, benefit. In addition, if she has "moderate dementia" it may not make sense to continue these screenings. Given your description of attempting the cognitive screening test, which is usually just questions, not a sometimes painful, awkward and personally invasive "test", I should think she will balk at the mammogram. Personally I hate them. With maybe ONE exception, they always make me come back for a second round. To date, nothing. The last recall was a diagnostic, so it cost me about $150, surprise surprise! That won't happen again! The bone scan isn't nearly as bad, but again, to what purpose?
With dementia, depending on the type, her life expectancy could be as low as 5-8 years, but some live longer. A lot depends on the type and when it is Dxed. If she's already in the moderate stage, that could reduce the number of years remaining. It's really hard to guess how many years one has left, as the posted numbers are estimates based on averages.
Also according to online sites, breast cancer, untreated, could take about 8 years to cause death, if untreated. The bone scan will only show if she has osteoporosis, which can lead to broken bones, but with dementia, falls are common and breaks will happen with or without osteoporosis. NOTE: my mother clearly had osteoporosis (had the classic Dowager's Hump) yet despite age (97) and several falls (more like tumbles), she never broke anything.
Basically her life *could* be in a race as to what might take her from you, dementia, BC or something else. Even if the mammo showed BC, could she tolerate surgery and radiation and chemo? Anesthesia alone can accelerate the memory decline. That along with the radiation and chemo could leave her miserable and unable to cope with the treatments. She most likely would refuse any of the treatments, based on how she's been already!
Rather than fighting her to get all these "exams" done, spend the time learning more about dementia, what to expect and how to cope with all that comes with dementia. That's what worked best for me (I knew nothing about it before her symptoms raised flags.) There's a lot of information out there, just be sure to stick with trusted sites. They all present similar information, including attempts at "staging", which is based on averages, but there's always a chance one site or another may provide more information or a different take on symptoms.
My mother was quite a bit older, but other than conditions that might leave her in discomfort or pain, such as a UTI or broken bone, I had already decided not to pursue any serious medical intervention (as was in her plans before D), with one exception: I did continue the Mac Deg treatments, 4x a year. She had limited hearing so it was important to try to preserve what eyesight she still had. I only cancelled the Oct 2020 one and all going forward because she was already in a wheelchair, difficult to take places AND had a stroke about a month before that appt, which further affected her ability to help with moving her. She would not have done well with the trip and the extensive testing required before treatment.
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