Too involved? Waiting on crisis?

3rdfamily

My grandmother, father, aunt and oldest sister had dementia and have passed.

My living sister is having memory problems (67 yrs old). She asked me to go to doctor with her, I did. Doctor ordered blood work, an MRI and an appointment with a neurologist.

MRI came back normal. Blood work came back with elevated liver enzymes and red bood count. The notes on the blood work by doc are "no alcohol".

There has been no discussion with the doctor. Just notes. I've called the doc two times for a consultation. Not a word. ( I am on the Hippa release. )

My sister canceled her neurologist appt. She told me she doesn't need it now because she has quit drinking and is on a healthy liver diet. And made it clear that I need to support the "liver diet" and drop the Alzheimer's discussions. So far nothing physically dangerous has happened.

I can't get anywhere. All I know to do is wait it out and live my life. So I'm looking for a psychologist to help me. And reaching out here.

Is it me? Am I paranoid? Is she an alcoholic? Anyone else had to wait until a crisis happens to get help?

Quilting brings calm

I typed liver memory loss into the internet search engine and several articles came up. Elevated liver enzymes are a sign of liver issues. Elevated liver enzymes isn’t always caused by alcohol- can be caused by overtaking NSAIDs such as Tylenol, ibuprofen and Naoroxen.

It’s telling that she told you she quit drinking - which is odd since the doctor write no alcohol( unless what he meant was that she should quit drinking).

Doctors don’t want to do consults with relatives of patients unless it’s at a patients appointment. Those of us with computer illiterate parents maintain their patient portals for them and can communicate directly with the doctor via that: ‘ doctor this is ‘Mary’s daughter and I’m noticing x’. You probably can’t do that because she monitors her own patient portal.

If I were you, I would do research into the liver and memory loss relationship, while waiting to see what happens next. Gently nudge her into getting a medical and durable power of attorney set up for the future , that kind of thing.

Otherwise, yes, you will probably have to wait for the crisis. You didn’t detail how severe her memory issues are, so it’s hard to speculate on how soon that crisis might happen.

3rdfamily

https://alzconnected.org/discussion/comment/214182#Comment_214182

She couldn't remember how to draw a clock Jan 2023. She couldn't do her taxes (she was a financial analyst and has done her taxes for the last 20 yrs). She repeats her stories often. Has missed several appointments. A couple of her friends have called me with concerns. My God don't even let her manage the GPS for directions. She has cussed me and her best friend out for being condescending and conceited. She went on a kick that every thing tastes bad or is spicy and has lost about 25 lbs.

Today I was sitting on my porch and she was watering her flowers (she lives next door). She came over and joined me on the porch.10 minutes in she remembered she had fish in the oven. Which is odd because i brought her a sandwhich an hour earlier. She is extremely negative and talks bad about friends and family members. Honestly the negativity is what drives me nuts. Conversations are one sided. I don't like to put folks down. Most people do there best.

She has fallen 4 times that I know of in the last year. I know for sure she wasn't drinking on 3 falls.

She has been drinking for years. And I've seen her sprint to a bottle of wine cause it was little past 5. Maybe she has Wernicke-Korsakoff Syndrome and doesnt want to tell me. That would be great, it's reversible if caught early.

She stopped drinking last week when the test showed high enzymes.

And to continue with brutal honesty I think she hides things from me. Such as how much she has really been drinking. Or missing appointments.

Dang that's a lot but it's amazing how much better it is to write it down. Thanks for prompting me. Good idea about portal. She only likes to show me screen shots. I'll try to sneak in.

M1

Welcome to the forum. Alcohol causes dementia, and women are particularly susceptible, she could easily have a mixed dementia with some inherited component and some alcohol related component. Yes, you should consider her an alcoholic.

You are going to have some big decisions to make. Are you prepared to be her primary caregiver? are you prepared to be responsible for her healthcare and finances? If so, you will definitely need power of attorney and should get that squared away asap with a certified elder law attorney.

educate yourself about anosognosia, it's a feature of dementia that prevents her from being able to perceive her deficits. Its common, and it means you cannot expect her to cooperate with the measures that are going to be necessary to keep her safe. She should not be driving, and i would not trust her to maintain abstinence from alcohol, someone will probably need to ride herd on that.

Sn sorry you arrcfacing this, it is a rough road. She is lucky to have you watching out for her. You have come to a good place for advice and support.

JDancer

You received some excellent information from M1, so I'll just add a side note. I question her comment about how she "quit drinking." If she was a heavy drinker, quitting suddenly on her own is highly unlikely. Perhaps she was a light drinker, or isn't telling you the truth.

Also, is she driving?

H1235

Welcome. A DPOA is going to be very important! I would make this your number one priority. She will probably be resistant. Im sure you can get some good ideas on how to convince her here. I would also be concerned with bill paying. The ability to handle finances is often one of the first things a person with dementia has trouble with. Are there past due bills laying around or a shutoff notice? As M1 mentioned driving is another big concern. Are there unexplained scratches, have you ridden with her lately? Is she eating properly and taking medication as prescribed? Looking at all of these things will give you an overall better understanding of how things stand and how urgently you need to act. But it’s going to be hard to do much without a DPOA and a medical POA.

harshedbuzz

@3rdfamily said: She has been drinking for years. And I've seen her sprint to a bottle of wine cause it was little past 5. Maybe she has Wernicke-Korsakoff Syndrome and doesnt want to tell me. That would be great, it's reversible if caught early.

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I would suspect Wernicke-Korsakoff's given the history of drinking and the "no alcohol" notation on the bloodwork. Perhaps she's been diagnosed and doesn't want to share what is a stigmatizing diagnosis. I wouldn't expect traction with her PCP unless she becomes unable to communicate herself even if you are on the HIPAA forms.

My dad had WKS as well as garden variety Alzheimer's. M1 is spot on that you could be looking at mixed dementia. Early on, pre-diagnosis, dad's Alz symptoms were more prominent— the darker moods, the lack of empathy, no social filter and the apathy. But in the middle stages, as his WKS really kicked in, we saw more of the symptoms associated with that— conflated memories that came out as accusatory stories (I was often credited with terrible things my sister did), an unsteady reeling gait (falls), spatial processing issues (banged up and dented cars) and an intolerance to cold (setting the heat for 85F in July in coastal MD).

Often with WKS, there is a Wernicke episode which looks like a psychotic break. It's called a syndrome, but it's actually 2 distinct conditions. I was told if the Wernicke's psychosis was recognized, promptly treated and an abstinent lifestyle was maintained, that there was a good likelihood of a return to baseline. Unfortunately, if this is not addressed early on, the degree of improvement becomes more limited. Some people do maintain whatever level of function they land on, but some folks do progress. Dad was treated with IV Thiamine in the hospital and his clarity did seem to level off considerably until he started drinking. That said, this improved cognition left him in a stage where he needed mom and I to make major decisions as we planned for the progression of Alzheimer's which led to considerable agitation and even aggression.

That said, my mom— oh the irony— had a bout of autoimmune liver failure about 8 years ago. She did have considerable issues with confusion, memory and concentration for a time until she recovered. Dad's liver bloodwork was always within normal ranges by the time I moved him here around the psychotic episode that led to his diagnosis.

It's interesting you mention a significant number of family members with dementia. While alcohol is a neurotoxin, not everyone who drinks to excess seems to develop WKS. There seems to be a heritable component. My dad's family has a collective history of alcohol and substance use. The men who came before him behaved like poster boys for prohibition. Not only was dad diagnosed with WKS, it turns out his nephew was as well. Nephew was in his early 50s and seemed stable for a long time being looked after in an in-law apartment owned by his son. He may have relapsed, but he didn't live to see 60. My sister also likely had WKS in the end stages of her battle with HIV/AIDS in the days before effective treatments. It's possible one or more of your late family members could have had WKS.

https://academic.oup.com/alcalc/article/44/2/148/185585

HB

3rdfamily

All of this is coming together. Grandfather and deceased sister were alcoholics. My exhubs is too so I've been down this road. Here we go…again. I have been in denial.

MN Chickadee

Based on what you have shared, dementia is already here, whatever type it is. I would get POA paperwork done with a lawyer asap so you don't have a total mess if/when she can't make decisions for herself. Without it you would have to pursue guardianship which is way more difficult and expensive. If she is resistant, maybe say you are doing your own legal paperwork and the attorney will do hers for free. "So I can see after you if you are hospitalized" kind of thing. Therapeutic fibs. Elder law attorneys are often good at finessing these situations. Once that is done you may have to wait for her to progress before intervening. If she is taking care of herself and most issues are related to personality changes and making odd choices, then you maybe just have to watch it unfold more. Watch out for kitchen safety. Burnt pans etc. That is probably the most likely to be a safety issue first. Can you get into her house and see if there are signs of alcohol? It would be unusual for a person with dementia to just quit easily and quickly. Is it possible she thinks she quit, or is telling you she did, but still using alcohol? Many PWD forget they need to abstain, or forget how many they have had and pile them on.