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Too smart to have Alzheimer's
Hey everyone. This is my first post. My mom was just diagnosed with early-onset Alzheimer's about 5 weeks ago while in a Geri-Psych hospital (She's had a very bad 7 weeks). My mom is completely in denial about her condition, mostly because she has a PhD in Cognitive Psychology and believes she's smarter than the doctors. We just got Guardianship and Conservatorship over her so we're beginning to be able to help, but we're truly at the beginning. And with her not taking any psychiatric meds (she refuses because she doesn't need them) and not talking to us unless we push because of all the lies I told during the hearing (It was specifically 21 lies... I don't even think I was asked 21 questions), we really don't know how to get started. We went to a caregivers support group last Thursday which gave us some ideas, and we called the local chapter of the Alzheimer's Association and we're going to call back next week and talk more. We know we need to get a neurologist as soon as possible, but also know they tend to schedule pretty far out. We got a name for a Geri-psychiatrist that we're going to see if he takes her insurance. But anyway, does anyone have any advice for working with a LO who believes they're the smartest person in the room, and believes everything she's done or has happened are lies, and she's "perfectly healthy"? Any ideas, or pointers for a newbie would be helpful. I'm 33 and she's 61, and my 93 year-old Gma and I are the guardians (she's sharp as a tack at 93). We're just all pretty lost. Thanks for reading this super long post.
Probably time for some hard core fibbing.
Can you tell her the medications are for something else.. heart condition, high blood pressure? when my FIL could still read, we created fake labels for the bottles.
Can you tell her her insurance requires an annual doctors visit or they will drop her? New rules, mom. I know, it's a total pain, I have to go next week.
How are your validation skills? Look up validation technique and teepa snow on you tube, as a good place to start. Not arguing, removing resistance, can keep the emotional temperature a little lower, which can increase her compliance (combined with fibs) too.
Good luck, this sounds rough.
I'll second the Teepa Snow videos. They are great, and you can learn a great deal from her. She has videos on many problems with dementia patients, and how to deal with them. Find videos on youtube or on her site, teepasnow.com .
There is a condition, anosognosia, which affects many people with dementia. This is the inability to realize there is anything wrong with them. You can show them all the proof in the world, and they will not believe it. It is not the same as denial. It is a very real inability of theirs. You have to learn to live in their world because they cannot live in ours any longer.
Apiane, your mom has anosognosia. She is unaware of having dementia. She truly believes she is fine. This is a characteristic of the dementias. Learn the work-arounds from the other members.
Unfortunately, no one is too smart to have Alzheimer's. It's an equal opportunity disaster. My wife is the smartest person I know, and kept her mind busy constantly, but to no avail. She had five close family members who had AD, so I guess she didn't have much chance to avoid the genetic burden. There are many here who likewise have brilliant LOs who have been brought down by this.
Welcome to our world Ashely. I'm so glad you found our site.
What was the process of your mom's diagnosis? Check against what Doraiswamy and Gyther write (get book from your library). It's the only diagnosis I would believe: complete physical, ;ots of blood test and at least one brain scan (mostly to rule out other common causes of demetia symptoms) and a several hour long neuro-psych test.
You have received excellent advice to which I would add Best practices. Research has shown that adapting that life style may prolong one's stay in the earlier stages.
1. Take meds as directed.
2. As vigorous as possible daily physical exercise. Recent research has shown such actually build new brain tissue.
3. Cognitive activities, varied is best. The goal is to stimulate, not frustrate.
4.mediterranean Diet. No smoking, limited alcohol.
5. Maintain or increase socialization. We PWD, people with dementia, need daily face to face interaction with others. Typically we do not like large and/or noisy groups.
Do stay in touch.
I am wondering about the criteria for diagnosis of early onset AD during the seven week geri- psyche inpatient stay. If the evaluation was thorough, what are your expectations of a neurologist? Perhaps the evaluation was not comprehensive, and more evaluation needs to be done. Do not expect the neurologist to convince her that she has dementia, because that won't happen if she does have dementia.
“New rules” for inaurance, medical procedures, etc., is a fiblets that often works. Everybody knows government and insurance are always coming up with new rules and regs.
Ditto also to what was said about pick your battles. Agreeing, then diverting,,changing the subject, can work wonders. “Yeah mom, that really stinks. Now, how about we...”go do or see whatever.
Save your energy whenever you can. This is hard. I’m sorry we all have to go through this. It’s not fair and it stinks. But sometimes we just gotta do.
We don't doubt the diagnosis, but hope the neurologist can maybe do additional testing to let us know more specifically where she is on the stage spectrum. Also, her neuropsych testing in the Geri-Psych unit was a hour- 1 1/2 hours from what we know. From my husband's experience after a car accident, that testing normally take 3-4 hours. So we hope we can get more information.
Doctors don't usually tell you the stage; you have to figure out that yourself by reviewing the stages of Alzheimer's. I would be concerned that all medical causes of dementia mimics have been searched for and ruled out.
You don't need a geri-psych or neurologist to tell what stage of the disease your mother is in. This document clearly states the symptoms of each stage and you should be able to tell yourself. The stages overlap, but your mom would be in the latest stage she has any symptoms for:
I used this to track my mother's disease and it was right on. As I had read it in detail, I could plan ahead for the various stages. So, on the day mom became urinary incontinent, I already had some Depends in the house for her and we transitioned her to them smoothly and without much comment nor a special trip to the store.
My mother also refused to take her medication - she was a nurse and yes, she had agnosognocia. So, we got it in patch form and put it on her back where she couldn't reach and told her it was vitamins because she was low on Vitamin D. However, we saw no improvement with the medication and gave it up after a few months.