WKS (Wernicke-Korsakoff Syndrome) Journey

tiredandlonely

I apologize in advance for the long, rambling post.  My primary purpose is to vent but I know I will get support and I'm also hoping this aids others who are experiencing a similar life.

My wife (we've been together 30 years, married 20) gradually increased her drinking (primarily beer) from being an occasional social drinker to a heavy drinker about ten years ago.  Analyzing myself, I realize I am an enabler, allowing her to live her life as she wanted and being the sole breadwinner.  About five or six years ago, after her drinking increased to 12-18 beers daily and with her showing any interest in me or my life, I struggled with the thought of divorce and acquired anxiety issues, treated with professional and medicinal help.  Early in 2017, I noticed that her beer consumption had dropped drastically, to about 4 beers a day.  About a week later I was concerned that she was acting a bit strange, sleeping all the time.  About a day after that, my wife left me a note saying she quit drinking but needed something for nausea and diarrhea.   believed this to be classic alcohol withdrawal.  About a week later, she had a full psychotic episode and I took her to the hospital, where she was diagnosed with alcohol withdrawal and malnutrition.  Although there was no formal diagnosis of Wernicke, my Google Research seemed that this was most likely the case.  She was discharged two weeks later and I "prescribed" a vitamin regimen with high thiamine.  Visits to her primary care physician and a neurologist provided me with no insight other than a cognitive disorder.  

Over the past four years, my wife has shown marked improvement cognitively, however, I believe she is a classic case of Korsakoff Syndrome.  She is totally withdrawn, spending her days and nights on the computer (games and Facebook) and showing no interest in me whatsoever.  She does take care of herself and continues with regular household tasks (cooking, cleaning, etc). To anyone who doesn't know her, she appears to interact normally but again, classic Korsakoff appears with false memories, confabulation and the inability to discern a dream from reality.  She also hums incessantly, even while eating.  Same "tune" and has been occurring the full four years of this.

Now to my psych issues.  Frankly, I feel trapped.  I have buried myself in work seven days a week (I own a retail business) and watch TV when I get home.  I really have no interest in having a conversation with someone who has shown no interest in me many years.  The Covid pandemic hasn't helped, just trapping me more.  I have turned into a loner and believe I am happy with my life but keep thinking there should be more for me to enjoy, but I can't think of anything I want to do.  I have weighed the options of divorce but there is no way my wife could live on her own.  Also, as an enabler, there is no way I'd put her in that situation.  I was going to a psychologist, mostly to just talk about everything, but Covid interrupted that as well.  

To sum up, there was really no point to this post other than give me a chance to vent.  Thank you for listening!

M1

Welcome to the forum.  I'm so sorry, no wonder you're frustrated.  I don't have any great ideas or suggestions, but there are plenty of folks here to listen and sympathize, and there are others who have dealt with Warnicke Korsakov.  Will she go to a physician?  I don't know what the options would be, but wonder if she's depressed too, in which case medication might help somewhat.  I'm sure others here will chime in.  You've come to a very supportive place.  It's helped me enormously, especially during the (ongoing) pandemic which is only worsening in our area again.  We're back to the same degree of isolation we had last summer (my partner is 80 and has lymphoma so we're vulnerable despite vaccination).

tiredandlonely

M1,

Thanks for the comments and support.  She actually seems happy and content, just detached, so I don’t think depression plays into it.  The doctors haven’t really dug into the issue deep enough to recognize the problem.  Seems that I’d need to find a neurologist who is well versed in WKS.  So far, the doctors she has seen haven’t recognized this as likely Korsakoff, if they even know what it is.  From all my research, my belief is that it is what it is.  No real treatment, just care and understanding, which is something I have to continually remind myself to provide. I’m sure many caregivers feel like this, but I just want to run away (like just go off the grid).

Stuck in the middle

Since she is able to take care of herself, why don't you arrange your work life so you can take a couple of days off?  Get some camping gear and go off the grid for a break.  If you're not outdoors savvy, hook up with a hiking club or canoe club.

You are in a cage with an unlocked door.  Walk through it.

rockfarmerswife

I know much of how you feel. my husband has the same diagnosis. The hardest thing is that he frequently has rages, and has actually slapped me a few times, but then within the hour he has forgotten that he was even angry.  I am "everything" to him, including his source of alcohol (twisted tea 5% instead of the vodka he used to drink all the time) and "chief cook and bottle washer".  I don't have any answers, but I will pray that your situation is improved.

tiredandlonely

Great suggestions, Stuck.  I wish I could reply with something that didn't sound like excuses.  I've turned into a bit of a hermit.  Not that I was outwardly social before, but I enjoy being left alone to do my own thing.  It's more that I feel like I should want something more out of life than what I'm doing now. I've thought about what would I do if I could go anywhere or do anything I wanted (and I can) and come up empty.  I keep telling myself that there is nothing wrong with that but there is that inner voice that say life should be more.  The obvious answer is that "more" would be a partner to share my life with.  It's a bit cruel but I don't want to try to start over with my wife.  She's been out of my life for many years.  I really don't want to run away from my problems and will be there for her when she needs but it's difficult for every caregiver and even more difficult for one who questions their love.  I'm sure most folks reading this think I need professional help (for myself) and I've been there.  Honestly, talking things out here is just as valuable to me.

harshedbuzz

tiredandlonely wrote:

I apologize in advance for the long, rambling post.  My primary purpose is to vent but I know I will get support and I'm also hoping this aids others who are experiencing a similar life.

Vent away. Alcohol-related dementia is an especially frustrating condition given the sense that, to some degree, it is a self-inflicted wound. I have had 2 family members diagnosed with WKS and a third who very likely had it. I try to remain mindful that substance abuse is also an illness because I can not wrap my mind around anyone choosing this. 

My wife (we've been together 30 years, married 20) gradually increased her drinking (primarily beer) from being an occasional social drinker to a heavy drinker about ten years ago.  Analyzing myself, I realize I am an enabler, allowing her to live her life as she wanted and being the sole breadwinner.  About five or six years ago, after her drinking increased to 12-18 beers daily and with her showing any interest in me or my life, I struggled with the thought of divorce and acquired anxiety issues, treated with professional and medicinal help. 

My mother  could have written this almost verbatim. My dad was strictly a social drinker who maybe drank too much a few times a year as a younger man. But after he lost his job teaching and became an entrepreneur with more money and free time, he started to drink regularly. A few years later, my sister (his favorite) was diagnosed with HIV/AIDS and he climbed into the bottle. Initially he drank whiskey, but his doctor made him give that up so he drank a similar amount of beer and Chardonnay instead. Many times my mother considered leaving the marriage but she never did. 

Early in 2017, I noticed that her beer consumption had dropped drastically, to about 4 beers a day.  About a week later I was concerned that she was acting a bit strange, sleeping all the time.  About a day after that, my wife left me a note saying she quit drinking but needed something for nausea and diarrhea.   believed this to be classic alcohol withdrawal.  About a week later, she had a full psychotic episode and I took her to the hospital, where she was diagnosed with alcohol withdrawal and malnutrition. 

My dad was actually diagnosed during a hospital admission that began because of a psychotic episode. He'd actually been struggling the week prior, but the small town resort hospital missed the diagnosis entirely sending him home with a referral to a neurologist who could see him in 6 months. In the middle of this first appointment my mother's sister died and she left him on his own for a week to attend the funeral. She returned to a house that looked like a blood covered crime scene. There was broken glass everywhere, art was taken off the walls and dad was convinced he'd killed someone.

I'd been trying to get dad evaluated for years based on mood and memory issues but my mother blew me off until she almost died in his care. I had done the research to find the best place near me for a diagnosis and insisted she meet me at that hospital's ER despite it being a 3 hour drive. The neurology resident at the teaching hospital figured out the Wernicke's was likely a part of dad's issues. He drew blood and started IV Thiamine before he was transferred to his room. During his stay, the attending thought it was garden variety Alzheimer's and discharged him to a SNF/physical rehab for 7 weeks during which a lot of dad's confusion cleared. He still had the significant short term memory issues that are a hallmark and some of the physical symptoms but he was improved enough to move into an apartment near me with my mom. 

Although there was no formal diagnosis of Wernicke, my Google Research seemed that this was most likely the case.  She was discharged two weeks later and I "prescribed" a vitamin regimen with high thiamine.  Visits to her primary care physician and a neurologist provided me with no insight other than a cognitive disorder.  

I would assume with a diagnosis of alcohol withdrawal that her blood was tested for Thiamine. Dad ate very well for someone who abuses alcohol and his Thiamine levels were not as bad as some; his neurologist at the memory center said that oral Thiamine is useful but that in a crisis IV is needed. Dad also had a contrast PET scan to look at glucose uptake in making the diagnosis.

Over the past four years, my wife has shown marked improvement cognitively, however, I believe she is a classic case of Korsakoff Syndrome.  She is totally withdrawn, spending her days and nights on the computer (games and Facebook) and showing no interest in me whatsoever.  She does take care of herself and continues with regular household tasks (cooking, cleaning, etc). To anyone who doesn't know her, she appears to interact normally but again, classic Korsakoff appears with false memories, confabulation and the inability to discern a dream from reality.  She also hums incessantly, even while eating.  Same "tune" and has been occurring the full four years of this.

Dad had a lot of apathy as well as a complete lack of empathy for others. He was very suspicious and moody. It can be kind of hard to tease out what was WKS in my dad because he also had Alzheimer's which overlaps in some areas and also bring it's own disease features. He also confabulated a lot; initially these made sense to those who might not know the truth, but to me it often felt like he was rewriting family history to put my sister in a better light. Dad continued to drink. Over time his confabulations became more ridiculous typically with him as the protagonist/hero of all tales. He once claimed to have had a knee replacement and showed me a scar on his elbow. So close.

He also had some physical manifestations you haven't mentioned- he couldn't regulate his temperature and was always cold (setting the heat for 85F in July in MD), his eye control was iffy at times, his spatial reasoning was really ghastly (he once had an argument with me because I refused to park their 3 cars in a one car garage swearing he could make them fit if I would let him drive) and his gait was almost like he was walking on a small ship in a storm.

FTR, my late sister is the 3rd person I mentioned who probably had WKS the last year of her life- she conflated, was suspicious and accusatory, was apathetic and had the same issues with always being cold. My dad's nephew was the other. He stopped drinking and did pretty well for years. He was unable to live alone and manage his IADLs so his son set him up in a small apartment next door but he died a couple years ago in his late 50s and I'm not sure what the cause of death was.

Now to my psych issues.  Frankly, I feel trapped.  I have buried myself in work seven days a week (I own a retail business) and watch TV when I get home.  I really have no interest in having a conversation with someone who has shown no interest in me many years.  The Covid pandemic hasn't helped, just trapping me more.  I have turned into a loner and believe I am happy with my life but keep thinking there should be more for me to enjoy, but I can't think of anything I want to do.  I have weighed the options of divorce but there is no way my wife could live on her own.  Also, as an enabler, there is no way I'd put her in that situation.  I was going to a psychologist, mostly to just talk about everything, but Covid interrupted that as well.  

To sum up, there was really no point to this post other than give me a chance to vent.  Thank you for listening!

I think the perfect storm of a spouse who has dementia/WKS and being isolated by a pandemic is no small thing. I would encourage you to attend to your own mental health. I lined my own mom up with a psychiatrist and talk therapist when dad was diagnosed. We also found a sympathetic ALZ support group; these people are still my mom's friends.

We also sat down with a CELA to get the legal paperwork in order for POAs and such and to discuss divorce. She didn't want to divorce at the time. I know she didn't trust me as dad's next of kin and she resented the idea that he might come away with more than half their assets because of his care needs after having pissed away $350K day-trading early in the disease. She decided to wait it out. That strategy worked for her. Her attitude softened in time and the mixed dementia progressed more quickly than usual with him passing less than 2 years post-diagnosis from complications of Alzheimer's. 

I am so sorry you are impacted by this disease.

HB

tiredandlonely

Thank you, rockfarmers wife. It’s nice to find folks who can relate (why I’m here, of course).  Luckily for me, my wife has not had a drop of alcohol in over 4 years (to the best of my knowledge. She has no car, no money or credit cards and no real friends except for an occasional neighbor who might drop by.). All we can hope for is peace and stability.

tiredandlonely

HB, thank you for sharing what you and your family have been through.  I knew I was not alone and came here for interaction with likeminded individuals.  There are a myriad of details I left out (obviously) because our journeys would take a book to fit.  On the brighter side, at least for my wife, things could have been a lot worse.  I think the current situation is likely better than I could have hoped for, given some of the experiences I have read in this forum.

Regarding my mental health, I fully agree with all you said.  More than anything, it seems that the best medicine for me is to be able to vent and relate.  I’ve thought that maybe a surrogate wife or girlfriend might work too, but I’m afraid I’m too old to try to find a real connection.  Early on, I did attend an Al-Anon group for several months but I found it really did little for me.  It might have been specific to my group but it was all about the addiction and not a sole was familiar with WKS.   I found with my last therapist that I was getting as receptive to hearing her problems as much as her listening to mine.  It worked, but I truly believe interacting here will do me as much, if not more, good.  Again, thanks for everything! 

Gardeningartist

I suspect that you would benefit from an antidepressant.  I talked with my Dr a few months ago when my HWD&Parkinsons was at his worse.  She started me on Prozac & with one increase  since then I feel so much better.  You might feel like making plans & trying to move forward with some treatment.  Best wishes!

Iris L.

tiredandlonely wrote:

.  She is totally withdrawn, spending her days and nights on the computer (games and Facebook) and showing no interest in me whatsoever.  

This is apathy and is a characteristic of the dementias.  You probably already know  this, but don't expect apathy to change.  

Iris L.

rockfarmerswife

Tiredandlonely, I think some of the hardest part of this disease is admitting that I am just as culpable because of my enabling.  In the past, the alcohol helped keep DH at least "social", so he would attend family events if he had that crutch to help with his lifelong anxiety disorder.  My mother even once said "he's so much more social if he's had a drink".  Fortunately, now she really understands what living with an alcoholic is like (though I haven't really shared much of my struggles with the verbal abuse I get multiple times a day - anything from calling me a "B**ch" to yelling if I make too much noise emptying the dishwasher.  I feel guilty every day, even though I know it is not the "real" DH when he says these things, but my heart is full of holes.  I wish I could have told the younger me that insisting he get help for his alcohol abuse in the past would have saved me much pain now.

tiredandlonely

Gardeningartist:  You are correct. I have and I do. Can't imagine what I'd feel like without them.

Iris L:  I don't have ay expectations for real improvement.  My fear is my own apathy towards my DW grows.

Rockfarmerswife:  Although we both are enablers, we are not responsible for the bad decisions made by ow loved ones to arrive at this point (I sound like AA/Al-Anon!).  Additionally, whenever I have regrets, I think of the "butterfly effect".  Anything I might have done differently would have altered the future.  The best example of this in my case is that my stepdaughter, who I had a distant and cordial relationship with, would might not now be my daughter, who I love with all my heart and would do anything for her and her (my) family.  This bonding occurred with the events leading to my DW hospitalization.  Deep philosophical thinking makes me consider all the changes in the lives touched by that single moment.  The cascade effect is incredible (and can drive you crazy if you try to really think of everything!).  So I tell myself that there is something good or positive to come out of even the most negative situations.

Stuck in the middle

No point in "digging up bones."  When I start doing that, I find myself back in 1960 revisiting the errors I made in high school.  

You people didn't make your spouses drink, you couldn't have stopped them.  All you could have done was moved out and made a new life alone or with someone sober.  You still can, if you want to badly enough.

rockfarmerswife

tiredandlonely wrote:

Rockfarmerswife:  Although we both are enablers, we are not responsible for the bad decisions made by ow loved ones to arrive at this point (I sound like AA/Al-Anon!)Thank you for that reminder!.  Additionally, whenever I have regrets, I think of the "butterfly effect".  Anything I might have done differently would have altered the future.  The best example of this in my case is that my stepdaughter, who I had a distant and cordial relationship with, would might not now be my daughter, who I love with all my heart and would do anything for her and her (my) family.  This bonding occurred with the events leading to my DW hospitalization.  Deep philosophical thinking makes me consider all the changes in the lives touched by that single moment.  The cascade effect is incredible (and can drive you crazy if you try to really think of everything!).  So I tell myself that there is something good or positive to come out of even the most negative situations. and for that one!

I believe that God has promised to use ALL things for His Glory, and that by being faithful to Him, my blessings WILL come.  This is the only thing keeping me together some days, because I know that God cannot lie or go back on His promises.