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Too smart to have Alzheimer's
Apiane
Posted: Saturday, April 13, 2019 3:34 PM
Joined: 4/11/2019
Posts: 7


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.

Ashley


citydock2000
Posted: Saturday, April 13, 2019 3:44 PM
Joined: 9/7/2017
Posts: 797


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. 

 


John1965
Posted: Saturday, April 13, 2019 3:59 PM
Joined: 8/19/2016
Posts: 345


My wife has a PhD in analytical chemistry and has 30+ patents to her credit. Since kindergarten she’s always been the smartest person in the room. And balanced: undergraduate degrees in chemistry and physics but just credits away from adding English and religion. And she had great social skills. I used to brag that she’s the smartest person I’ve ever met who’s not on the autism spectrum. She was diagnosed with EOAD the week of her 50th birthday. That was 4 years ago. Luckily she’s not in denial about having AD, but she’s become unaware about its severity and effects on our family. My only advice is to pick your battles. Agree as much as possible. Let her be/pretend to be the smartest person in the room. It’s a tough adjustment. You have to learn to bite your knuckles and swear under your breath. I’m so sorry this #>*^ing disease has entered your life.
Ed1937
Posted: Saturday, April 13, 2019 5:30 PM
Joined: 4/2/2018
Posts: 1758


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. 


Iris L.
Posted: Sunday, April 14, 2019 12:26 AM
Joined: 12/15/2011
Posts: 16181


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.

Iris L.


Mike&BrendaTX
Posted: Sunday, April 14, 2019 12:47 AM
Joined: 7/10/2017
Posts: 634


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.

Mike


harshedbuzz
Posted: Sunday, April 14, 2019 7:02 AM
Joined: 3/6/2017
Posts: 1829


Ashley-

That is an unenviable situation in which the women of your family find yourselves. 

EO in a person who was likely at the top of their game professionally and defines themselves by their intellect who likely has a lot of cognitive reserve and anosogonosia is not an easy situation. I'm guessing that she's fairly impaired if you were awarded guardianship and conservatorship- these are not always a slam-dunk especially if the person in question is still articulate and can present "normally" for short periods of time. 

You've gotten a lot of good advice about validation. Do make an appointment with neurology; I would suggest a major teaching hospital's memory center if only for the availability of social workers who can help with logistics. Finding a geriatric psych is important too. IME, many of the best do not accept commercial insurance, a few don't even take Medicare. If you can swing it, paying out of pocket a couple of times a year is worth it for the right person. Dad's geri-psychiatrist was the single most important person on his care team after my mom. 

My dad was very bright. He was fairly articulate and could present well for short periods of time. I sometimes made video clips to email to his psychiatrist who seemed to think I was less than honest about how aggressive dad could be at times. This helps you avoid throwing mom under the bus in front of others. 

HB
Jgiles9289
Posted: Sunday, April 14, 2019 9:01 AM
Joined: 2/5/2018
Posts: 44


All good advice above. The only additional thing I can add is a bit about my tricks during the beginning when my mother didn't believe she had Alz and it was extremely uncomfortable to try and discuss things with doctors, etc when she was next to me. She was still way too sharp and could follow the conversations.  Definitely get a neurologist appt-they do schedule months out.  My mother's asked me so many uncomfortable questions about her ability to perform basic daily living activities and I sat there fibbing to him and trying to make face gestures and eye rolls so he would get my true meaning. I ended up calling right after appt to explain and have since utilized a system of contacting doctors online via messaging in their work portals prior to appt.  Also when headed to a new doctor or anyone performing a service for mom, I call in advance or tell mom I need a restroom and find the receptionist and let him/her know mom has Alz and that she doesn't know she has it and to let staff know.  (Especially when you couldn't tell right away when speaking with her that she had dementia). That way it wasn't discussed in front of her, upsetting her for that moment or making me uncomfortable, and they knew to use a different approach or talk to me separately.  That has helped tremendously in keeping the peace for mom when she was still sharp,could easily follow conversations and would get very upset when made aware she had dementia.
1of4
Posted: Sunday, April 14, 2019 10:44 AM
Joined: 3/30/2019
Posts: 7


Also did what JGiles did when I took mom to her last PCP visit.  Called before hand to explain moms dementia problems, talked to nurse in advance.  Had my siblings write down mom's latest behaviors and their concerns, gave it to receptionist to give to Dr. when mom was looking elsewhere.  So the staff knew what was going on without my having to talk about mom in front of her. (She denies any problems when speaking to the Doctor)  When mom said something about all the 'stupid questions' they were asking her (cognitive evaluation) I told her they were due to new medicare regulations. This actually satisfied her.  (Darn government and their rules!)
Mimi S.
Posted: Sunday, April 14, 2019 11:04 AM
Joined: 11/29/2011
Posts: 7035


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.


Apiane
Posted: Monday, April 15, 2019 11:54 AM
Joined: 4/11/2019
Posts: 7


She'll go to her primary care doctor, who she trusts implicitly. It's just getting her to go to a neurologist or geri-psychiatrist that's hard, because she's convinced there's nothing cognitively wrong. We know it takes a long time to get into a neurologist. We're getting referrals to two places that come highly recommended and will go with whoever can get her in the soonest. Hopefully the psychiatrist is easier to get into. We've talked to her primary care to keep her informed since my mom won't tell her what's going on. Now that I have guardianship I should be able to hear what happens after the appointment (I can't make her next one and a friend is taking her). So just trying to get my ducks in a row when it comes to doctors. Then I'll work on figuring out how to get her there.
Iris L.
Posted: Monday, April 15, 2019 12:44 PM
Joined: 12/15/2011
Posts: 16181


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.

Iris L.


Rescue mom
Posted: Monday, April 15, 2019 1:03 PM
Joined: 10/12/2018
Posts: 1135


“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.


Apiane
Posted: Tuesday, April 16, 2019 1:33 PM
Joined: 4/11/2019
Posts: 7


Iris-

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.

Ashley


Iris L.
Posted: Tuesday, April 16, 2019 2:56 PM
Joined: 12/15/2011
Posts: 16181


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. 

Iris


MacyRose
Posted: Tuesday, April 16, 2019 3:41 PM
Joined: 12/15/2011
Posts: 3935


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:

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/ 

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.  


harshedbuzz
Posted: Tuesday, April 16, 2019 5:18 PM
Joined: 3/6/2017
Posts: 1829


I like this scale for determining where one's LO is on the continuum. 

https://tamcummings.com/stages-of-dementia/


Caring4two
Posted: Tuesday, April 16, 2019 5:43 PM
Joined: 7/6/2014
Posts: 650


 https://tamcummings.com/download/84/

Stages checklist