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KrisVoigt
Posted: Friday, November 1, 2019 1:06 PM
Joined: 10/17/2019
Posts: 7


Hello Everybody,  My first post.   

Three weeks my mom (age 63) was diagnosed with early onset Alzheimer's.  She had been having some memory issues for the past year or so and got to the point where she needed to seek medical attention.   She did a clinical interview and cognitive assessment - I have the test results, but not sure how to interpret them.  She tells me she failed.  

My mom lives in New Orleans with her partner of 25+ years.  Both attorneys, however, mom has been told by her doctors to start a "phase out" plan with her job.  I live in Atlanta and my only brother in Seattle.  

Needless to say, this came as a great shock to everyone.  I'm still trying to process this and feel like I'm grieving her loss even though she's still here.  

I went to visit her over the weekend.  She's not eating well and at times becomes withdrawn from the conversation in the room.  Almost as if she lacks the confidence to speak or ask questions in fear of being embarrassed by something that was already told to her.  

The doctors prescribed Diclofenac to help with symptoms.  Not sure how that works.  She also drinks quite a bit - I think she's using alcohol to self medicate.  She basically sits out on her front porch all day long and after 20 years being a non-smoker, she started using some sort of e-cigarette.  Also appears the evenings are worse.  But not sure how much that is attributable to the irish whiskey intake.   

My mother's mother also had Alzheimer's - and now I'm very worried about my own health - to the point of looking into a long term care insurance policy on myself.  

Anyway, I wanted to introduce myself and my story to the group and see if anyone had similar experiences or any advice for a "newbie" just now entering this journey ahead.

Thanks

 

 

 


harshedbuzz
Posted: Friday, November 1, 2019 2:58 PM
Joined: 3/6/2017
Posts: 1830


I am so sorry you have a need to be here, but glad you found us. 

Has your mom been a heavy drinker for some time? Did her doctors rule out an alcohol related dementia like Wernicke-Korsakoff's Syndrome which is the result of a Thiamine deficiency often caused by alcohol abuse. While there is a genetic predisposition to developing WKS, women are more likely to be impacted at lower levels of consumption than men. The condition is treatable and sometimes reversible if caught early enough and life style changes are made. 

Diclofenac is a medication used for arthritis- most often as the topical gel Voltaren. 

HB
KrisVoigt
Posted: Friday, November 1, 2019 6:04 PM
Joined: 10/17/2019
Posts: 7


HB- Thanks for your message.  
Yes, she's been drinking for a while.  I also think she was taking a handful of pills (valium, hydrocodone).  I don't know if the doctors ruled out WKS.  That's the first time I've heard of that.  I do have the doctors contact info and permission to speak about her health.  I'll call him on Monday to ask.  Any other question you guys think would be appropriate to ask her doctor?

 Thanks!


RCJ
Posted: Friday, November 1, 2019 6:54 PM
Joined: 10/18/2019
Posts: 6


Is your mom's partner supportive? Do they have a good relationship? What is their response to this diagnosis? Will they be involved with doctor appointments and caretaking? Or will that end up being coordinated by you? Does your mom have the self awareness to talk about issues with you, or do you not have that type of relationship? You might be able to set up some kind of a long term plan with her input. Then you would feel better later on as you could feel like you were following her wishes. Tough situation. I wish you all the best. I have found that watching educational programs on you tube has been really helpful. So has calling the alzheimers hot line. I've call twice when I was struggling, and both times they helped me out.
KrisVoigt
Posted: Friday, November 1, 2019 7:19 PM
Joined: 10/17/2019
Posts: 7


Hi RCJ - Thanks for your message.  My mom's partner is very supportive - but I also feel like she may enable some of the excessive drinking because she has also been drinking quite a bit.  Her partner is definitely deeply emotional and saddened by all that's happening.  And it seems like she is also self medicating these emotions with whiskey.  

At this point,  her partner will be handling the doctors appointments and care taking.  I've been communicating with her partner directly on getting updates and just checking in on how the days go.   

I think my mom and I are open enough to have those "long term plan" conversations.  It's hard though.  It's a hard topic to bring up.  

Sometimes I feel like this is all a dream and I'll wake up from it and everything will be back to normal.

Thanks for the tips on youtube videos and the hotline!

 

 

 


harshedbuzz
Posted: Saturday, November 2, 2019 4:02 AM
Joined: 3/6/2017
Posts: 1830


Kris-

This is a quick read on WKS-

https://www.webmd.com/brain/wernicke-korsakoff-syndrome-facts#1

https://patient.info/doctor/Wernicke-Korsakoff-Syndrome
If you have time to dig deeply, there's a lot of information out there especially coming out of the UK and Australia. Perhaps that's the genetic predisposition thing. (In my own family, dad had WKS along with Alzheimer's. I have a cousin in his early 60s who was diagnosed and treated; he's been stable for about 5 years living in a granny apartment near his son. He did recover from some of the confusion and can manage his ADLs, but not work or handle his IADLs. My late sister likely had WKS the last year of her life as she died from complications of AIDS before there was effective treatment.)

Doctors sometime miss this one, especially when the patient doesn't fit their profile of what an alcoholic is supposed to look like. Dad's small town hospital missed it entirely when mom took him to the ER thinking he'd had a stroke. A week later, we drove him 3 hours to an Ivy League medical center affiliated with a memory center and the resident honed right in on it. 

Some of the features that differentiate WKS from other dementias include constant confabulations (when the memory of an event is missing details and the individual backfills the holes with details from other events or people- this felt like re-writing history at first), poor temperature regulation (dad was always cold- like setting the heat for 85F in July in coastal MD), eye movements, reeling gait, very poor short term memory (inability to take in new information/learn), confusion, apathy. 

Early on dad did have some sense of his own impairment that came and went. Drinking became self-medication and a source of a power struggle between him and family. 

Dad had MRIs, bloodwork and later a glucose PET scan as part of his workup. His cognitive testing showed a lot is deficits in executive function skills even after IV treatment. But early on, his MOCA and MMSE were considered "normal" for a man his age (80s) and education. 

I'm not a doctor, and I am not saying this is what your mom has- but it is worth asking about because it is somewhat treatable. Good luck to you.

HB

KrisVoigt
Posted: Tuesday, November 5, 2019 12:30 PM
Joined: 10/17/2019
Posts: 7


Thanks HB -

I spoke with my mom's doctor yesterday.  He was extremely nice and spent about 30 minutes on the phone with me.  

I asked him about WKS.  He said it was ruled out based on her blood tests - there were no vitamin deficiencies and he seemed very confident in the diagnosis of EO Alzheimer's.  

In any case, it was good to establish a relationship with the doctor.  He's offered to be a resource if I have any further questions or just want to talk about what's happening with my mom.

Thanks again, Kris



 
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