Alcohol Related Dementia Wernicke–Korsakoff syndrome thread

Spina21

I wanted to start a separate thread of support and venting for caregivers/family members of people with alcohol related dementias and/or who have been diagnosed with Wernicke–Korsakoff syndrome (or not diagnosed but you suspect this is their illness). This is such a complicated issue because, in addition to the dementia issues, children/family members of people with alcoholism most likely also carry a lot of anger and frustration mixed with compassion with their LO related to the alcohol abuse. I know I do. And yet, here I am doing everything humanly possible to give my mom the best possible scenario.

After a ALZ diagnosis and lifetime of grey area then late-onset heavy drinking, which increased exponentially during the pandemic, yesterday I finally transferred my 77 yr old mom from the hospital to MC. After consultation with a neurologist, a neuro-psychologist, a lawyer about potential guardianship, and several addiction specialists, I was convinced the only thing that may trigger help for her was a trip to the ER (in NYS you cannot be released from the ER if your health care proxy deems your home an unsafe environment). 

She had a drunken slip and fall at home and ended up in the ER 3 weeks ago, and was just released today to a very nice MC near my home. I just went to visit after setting up her apartment with all of her things, photos and personal items and she was extremely agitated, demanding to go home (although at this point she could not even tell you where home is). I feel terrible, guilty and angry all the same. Guilty for leaving her somewhere she does not want to be, and angry that she refused treatment for her alcoholism and refused her diagnosis of ALZ, refused to stop drinking, and spent the past 6 months drinking over 2 bottles per day of red wine, not eating and stumbling home drunk. I also know that a lot of the obsessive drinking was due to the ALZ (not remembering how much she had had), but that is after a lifetime of addiction to alcohol.

I am the only child and my father is currently in hospice care, so I am also dealing with that and trying to spend the time I have left with him. Him leaving home and going to the hospital was the last straw for my mom living alone, and she had spiraled downward not only with her ALZ but also with a wine drinking habit that had become extremely dangerous. I think my father hid many things from me over their last years together, and the fallout from the drinking was one. The night she went to the ER she had left the building at 2 AM in her nightgown aiming to go to the wine shop. It was totally unsafe and unsustainable, which I am trying to remember now that I have her somewhere secure that she hates. She had rejected her diagnosis or any treatment for Alcoholism, so here we are. 

Placing her in MC 15 minutes from my home seems like the safest option for her and the sanest option for me. She barely remembers me or my dad, and I cannot imagine her being home. When I left today she was very angry and I have decided to detach and let the professionals help her adjust along with a hired caregiver that I will have go there every day from 3-8 (sundown time, when she gets even more agitated). I will try to facetime daily and resume visits when she settles in.

I do not have the mental, time or family resources to drop everything and become her FT caregiver, and the truth is I also do not want to. I have my own family, small children and a demanding and fulfilling career. My mother would have never wanted me to give over everything for her, but with her current mental state she only feels negativity, anger and fear. I am working with her Dr. to find the right prescription for her to manage anxiety, I think that will help a lot.

Does anyone else have an experience with alcohol related dementia? I don’t know if there are solutions, but I hope we can share in our unique grief and lean on each other. Seeking support, thank you.

abc123

Hi. Welcome! I’m so glad you found us! We do have a member with experience in this area. She is very knowledgeable and a huge blessing to many of us here. 

I am truly sorry about your mother’s alcoholism.  My husband, who did not have any type of dementia was a raging alcoholic. He died from bladder cancer 8.5 years ago. He drank up until his body would no longer accept the alcohol and he would get violently ill.  Al Anon saved my life. I was drowning in guilt and running myself ragged trying to prevent the next episode. And there was always “a next episode”. By learning to detach AND realizing I was not responsible for his alcoholism was what saved me. Please reach out to Al Anon if you haven’t already. Your mother’s alcoholism is HERS, not yours. If I were you, I’d spend my time & energy with my dad. Your husband and kids first, dad second, mom third. I’m sorry you have so much going on and alcoholism too. I wish you the best. You will be in my prayers.

Spina21

@abc123 thank you for the warm welcome and sharing your story. I’m so glad to have found this community and will recommit to al anon (I only went once).

Lemonwood

Welcome Spina. You have a lot to balance and juggle with your mom, dad, work and children!  And of course taking care of yourself !!

 I know making the decision to place your mom in memory care and not visit for a bit probably does trigger many different emotions. It does for me.  We moved my sister [64] with Korsakoff Syndrome half way across the US from rehab to AL 6 weeks ago.  She was working and living independently until May of this year. Now she has to be cued on where she is, what day it is and that she cannot shower on her own.  She only has my brother and me for support.

I am trying to learn everything I can about Korsakoff’s and have found some good YouTube videos and I think some of the scientific articles on the web are most useful.  Comparatively, there is not a lot out there on WKS.  I also reached out to the 24 hour Alzheimer.org call line and found the social worker I talked to to be helpful in getting feedback and tips on how best to communicate with my sister.  It also helped me cut back my visits and feel a bit better about not taking all of her calls.

I hope that your mom will settle in sooner rather than later and that the docs can help with her agitation.  I found that I am a trigger sometimes for her agitation that her life has changed so dramatically, even on the phone. It’s not easy but it may be more compassionate to limit the calls with your mom as well.

Thank you for your post!  I suspect there are more people who’s LO have alcohol related dementia that are not aware of the extent that alcohol has triggered some of their loved ones dementia.

ninalu

Hi Spina,
Thank you for sharing your story. I'm very sorry for the losses you are facing with your parents. I think it's great that you're so clear on your need to stay focused on your family and career and your own wellbeing. I agree that there are specific issues that result from alcohol-related dementias which require support and self-care. 

I'm also the only child/daughter of a mother whose dementia is alcohol-related (if not alcohol-caused.) For years prior to my mom's Alz diagnosis, we had multiple medical crises caused by her drinking where I'd show up to the hospital, help the doctors treat her, get her well enough to go back to her life and repeat the situation. As much as my mom wanted to stop drinking, she was not able to. I currently believe that this is because the dementia was already affecting her thought process and decision making. She was remarkably able to hold things together professionally until she wasn't - and it all came crashing down. One day, a car accident and hospitalization resulted in me placing her into detox with the support of multiple medical professionals. I was VERY lucky to have a stealthy neurologist on the team who strongly suspected dementia issues. It was because of his incredible empathy and vision that we didn't have to put a guardianship in place. Mom was no longer able to care for herself or make good decisions and we were so fortunate that she didn't hurt anyone. Still, she hurt herself badly and our relationship was very strained, as you'd imagine. I was filled with fear, sadness, anger, disbelief that things had gotten so crazy. The mom that I had while growing up was a strong, empathic, capable, confident, present, and successful woman. I missed her, badly.

Now, several years later (all this happened in 2012-2014), my mom is in MC. Our relationship has had the opportunity to heal after her complete withdrawal from alcohol. I needed and got support to talk through and grieve the losses I experienced in my adulthood. That part took some time. What I've come to realize is that my mom's behavior - as terrible as it was at times - wasn't fully her choice. She wasn't making decisions with a sound mind - even 15/20 years ago, I believe that dementia was affecting her thought process. Looking back on all of it, the hardest part has been grieving the absence of my mom during those years where - due to drinking - she didn't know me or my life (never met my partner, knew about my career, etc.) We missed 15 years of living and loving and sharing our lives. It has been the Alzheimer's diagnosis that brought us back together as mother and daughter and allowed me to continue to heal the past and be with her in the present, see who she is now. Who she is now is radically different than who she was when drinking. The process of transformation is quite disorienting -- alcohol changed her, and dementia is changing her. The person I know now is a wonderful person and in my own way, I have the chance to love her and say goodbye to her. Heart-breaking for sure, but also an opportunity to heal some things in my heart. 

Coming back to your story, I think it's REALLY good to know that you do not have the resources or desire to be your mother's FT caretaker. My journey has taught me that it's super important to listen to that -- to the times when you feel too close to an edge and don't feel able. I've had to navigate that as well - including guilt and regret and self-forgiveness. Please give yourself respect and kindness around that truth. From where I sit, it sounds so wise and healthy and will keep you on a good path, one step at a time. 

harshedbuzz

Spina21 wrote:

I wanted to start a separate thread of support and venting for caregivers/family members of people with alcohol related dementias and/or who have been diagnosed with Wernicke–Korsakoff syndrome (or not diagnosed but you suspect this is their illness). This is such a complicated issue because, in addition to the dementia issues, children/family members of people with alcoholism most likely also carry a lot of anger and frustration mixed with compassion with their LO related to the alcohol abuse. I know I do.

My dad had mixed dementia- Alzheimer's and Wernicke-Korsakoff's. I had a paternal cousin die recently from complications of WKS (aged 60 long term alcohol abuse) and my late sister developed what was likely WKS, in retrospect, in the last year before she died from complications of HIV/AIDS (heroine being her drug of choice). 

It's is frustrating and difficult. While most dementias have certain challenging behaviors and symptoms in common, WKS seems to have them early on and in abundance. Being tough customers, attentive caregiving is difficult at times in the context that they might not have earned the attention they require. The notion of the syndrome as "self-inflicted"- of having done this to oneself (and those charged with cleaning up after it) also takes some working though.

And then there's the stigma. It's like dad's DUI splashed over the local papers all over again. I do hope your experience was different, but I found the medical practitioners mostly clueless around the concept of addiction, unsympathetic and frankly judgmental with the exception of his geripsych.

One thing to remember, addiction is a disease just as Alzheimer's is. 

And yet, here I am doing everything humanly possible to give my mom the best possible scenario. 

Good for you.

My mantra was that the excellent care I offered my dad was a refection, not of who he was, but who I was as a human being. 

After a ALZ diagnosis and lifetime of grey area then late-onset heavy drinking, which increased exponentially during the pandemic, yesterday I finally transferred my 77 yr old mom from the hospital to MC. After consultation with a neurologist, a neuro-psychologist, a lawyer about potential guardianship, and several addiction specialists, I was convinced the only thing that may trigger help for her was a trip to the ER (in NYS you cannot be released from the ER if your health care proxy deems your home an unsafe environment). 

We had a similar scenario. My dad was late to alcoholism; he didn't climb into the bottle until after my sister- his favorite- died. So while my childhood wasn't impacted by alcohol abuse, my dad was not a good spouse or parent. I often bore the brunt when he was in one of his moods. It was quite telling that while his former students were bawling their eyes out at his funeral, mine were dry.

My parents lived at a distance in retirement so I didn't see them that often. I saw them less in the early stages of dad's dementia because he was just so unpleasant to be around.  It got to the point that his brother, grandchildren and friends in 3 states dropped him because of his unfiltered behavior. I did drive-bys to make sure mom was OK until she wasn't. 

Mom covered for a lot of dad's antics and ignored my pleas to have him screened for dementia. Oddly, I was much more aware of the subtle Alzheimer's symptoms, while she focused more on the WKS. And it worked for them until it didn't. Mom ended up in FL in acute liver failure (oh the irony- hers was autoimmune)- the woman was the color of a school bus and he never noticed. A neighbor saw her wandering aimlessly around Publix and rushed her to the ER. The day after she was admitted I got a call as an emergency contact and flew down. This led to mom agreeing to an evaluation, but dad's prostate cancer came back and then it was time to move to the beach house where medical care is almost non-existent so it never happened. Long story short, mother attended an out-of-town funeral and dad crashed and burned. We, too, ended up at the ER where a preliminary diagnosis was made after a short stay. He was turfed to rehab for PT and OT and we took the 6 weeks to set up an apartment local to me and the pair of them basically took over my life. 

She had a drunken slip and fall at home and ended up in the ER 3 weeks ago, and was just released today to a very nice MC near my home. I just went to visit after setting up her apartment with all of her things, photos and personal items and she was extremely agitated, demanding to go home (although at this point she could not even tell you where home is). I feel terrible, guilty and angry all the same. Guilty for leaving her somewhere she does not want to be, and angry that she refused treatment for her alcoholism and refused her diagnosis of ALZ, refused to stop drinking, and spent the past 6 months drinking over 2 bottles per day of red wine, not eating and stumbling home drunk. I also know that a lot of the obsessive drinking was due to the ALZ (not remembering how much she had had), but that is after a lifetime of addiction to alcohol. 

It might help you to attend Al Anon if you can find a good group. (FWIW, just as some medical professionals don't get alcohol use disorder, some 12 Step allies don't get WKS as a condition that has robbed the individual of the potential tools needed for sobriety- you need a place where others understand that door has closed for your mom and it's not because you are enabling her) It would give you another safe place to vent. 

I am the only child and my father is currently in hospice care, so I am also dealing with that and trying to spend the time I have left with him.

I'm sorry. How is your relationship with your dad?

It took me a long time to realize how must resentment I harbored towards my mom for failing to take any steps to control her situation and just wanting others to think of her as a victim or stellar caregiver depending on the mood. My situation is a little different in that my dad died and I still have my mom. I had to work on this, too, as well as the resentment I felt when my parents bailed on me and my son after been doting grandparents to my sister's 2 girls. 

 Him leaving home and going to the hospital was the last straw for my mom living alone, and she had spiraled downward not only with her ALZ but also with a wine drinking habit that had become extremely dangerous. I think my father hid many things from me over their last years together, and the fallout from the drinking was one. The night she went to the ER she had left the building at 2 AM in her nightgown aiming to go to the wine shop. It was totally unsafe and unsustainable, which I am trying to remember now that I have her somewhere secure that she hates. She had rejected her diagnosis or any treatment for Alcoholism, so here we are. 

Placing her in MC 15 minutes from my home seems like the safest option for her and the sanest option for me. She barely remembers me or my dad, and I cannot imagine her being home. When I left today she was very angry and I have decided to detach and let the professionals help her adjust along with a hired caregiver that I will have go there every day from 3-8 (sundown time, when she gets even more agitated). I will try to facetime daily and resume visits when she settles in. 

This was a smart move. It can take some time for a PWD to settle into a new MCF routine, so I wouldn't expect anything but anger early on. I would expect Facetime to be at least as triggering as an in-person visit, so I would call the facility for a daily update and leave it at that for a while. When you resume in-person visits, I found it useful when dad was at his nastiest to-

1. Bring a treat. IME, alcoholics who aren't drinking will have a hyperactive sweet tooth- so candy, donuts, a milk shake, fancy latte. Little gifts are good- a magazine, hand cream, etc.

2. Come at meal time and join her with take out she might enjoy and have lunch together- or come during an activity she might enjoy like chair yoga, bingo or music.

3. Visit in the communal areas. Dad still had enough on the ball to behave if he was "in public" and save his excoriating for the privacy of his suite. 

I do not have the mental, time or family resources to drop everything and become her FT caregiver, and the truth is I also do not want to. I have my own family, small children and a demanding and fulfilling career. My mother would have never wanted me to give over everything for her, but with her current mental state she only feels negativity, anger and fear. I am working with her Dr. to find the right prescription for her to manage anxiety, I think that will help a lot. 

Even if your mom had been the model of maternal perfection, your role here is to do right by yourself and your family now that her needs are being met.

Meds helped a lot here. Dad's geripsych were awesome. For the agitation, hallucinations, delusions and aggression we used Seroquel- 25mg at night and later 25mg in the am as well. One thing we tried to address in the middle stages after we got a handle on the anxiety and agitation was dad's apathy. His geripsych prescribed Wellbutrin in an attempt to activate him a bit. It did not work to that end, but it did dial back his craving for alcohol (he was still at home and demanding his Chardonnay because he either couldn't recall he'd been cut off, didn't care or because it had become a control issue). It kind of makes sense, the active ingredient is used in meds for smoking cessation and weight control. 

Does anyone else have an experience with alcohol related dementia? I don’t know if there are solutions, but I hope we can share in our unique grief and lean on each other. Seeking support, thank you.

It is unique. While dad had dementia, I also had 2 aunts (VD/ALZ and VD) on my mom's side of the family as well as the mom (ALZ) of a dear friend who also had dementia. it was interesting how similar and yet different the experiences were. One thing that struck me was how far into the disease process personality remained intact. My good natured aunt remained a delightful individual, her sister was nasty to the end, my friend's mom's presentation meant that her lack of filter allowed those who weren't part of her inner circle to see how cuttingly amusing she could be; her public face had always been discrete and ladylike. Dad stayed difficult until about a month before he died when he morphed back into something akin to the sweet little boy his ancient aunties described that I could not imagine.  

HB

KMH2021

Spina21 and others --- I AM SO GLAD I FOUND YOU OH MY GOD.

I was starting to feel like the only person on the planet who was trying to sort a triple diagnosis of alcohol use disorder, dementia and depression. I feel I am coming up short on providers that can help my mom - are you having that experience?

Quick background on my story --

My mom and I were best friends for 30 years (and codependent I am now seeing). She married and divorced two alcoholics and I don't think she ever got over the pain of it all.

About 15 years ago, she started drinking too much. When she retired 5 years ago, it got worse. Then the pandemic hit and it seems like it all went on steroids. We started having a lot of hard discussions about her drinking about 5 years, but I couldn't see alcoholism was the issue until this past May. She was in a frail physical state and I picked up the al anon book for the first time and had a panic attack realizing what the real issue was.

I got her into detox/rehab, but the detox was rough. 3 ER visits, delirium, and finally just discharged to the hospital for a week. We finally made it down to FL for rehab. After 30 days, they wanted to keep her to do a neuro psych eval, but I didn't feel like we should spend the money to keep her at the facility for another two weeks to do that. The rehab facility told me to take her to memory care, I couldn't wrap my head around that so I organized for friends and family to be with her round the clock for 6 weeks. I thought her mind would clear up once off the alcohol. On my last visit, I took her to visit every AL facility we could find, and I hired home health aids and a recovery coach to help her. She started going to aa everyday, but she relapsed the day I left and went back to a bottle a day. We were working with a family therapist to try to get her to be willing to go to rehab, but I knew in my heart she wasn't capable of making those decisions. She fell twice and hit her head. After the first fall, the therapist told me to give it more time that we were close to willingness. After the second fall, her neighbors called us and said if we didn't do something right away she was going to die. 

We came down and basically forced the hospital to take her to detox (so many places refused to care for her). She was finally admitted and stay about 10 days. I found a 'family care home' that doesn't serve alcohol for her to live in, and my hope was she could do some PHP. She got kicked out the first day of that. She also called me about 30 times per day begging me to take her home and threatening me with legal action etc. I was told to block her calls so I did. 

I feel awful about the situation and just want my mom to have some peace. I feel I need to move her to a more long term facility, but I am not sure what's best for her. I just want her to be happy. (And I am slowly accepting I don't have any power over that) I also just want a clear plan of care for her - what meds, what activities, what environment? From there, I want to wrap my head around my role in all of this. Part of me wants to save her just like I always have and make her life my responsibility, but part of me knows this comes at the cost of my life, and I deserve a life too. But it's hard. A part of me wants to give up my life to save her, and a part of me knows that's almost the easier path in a way. I just feel so freaking guilty. She was truly the best mom of all time, she kept me so safe when my dad abandoned me and her second husband abused her. She always got us out of trouble and into safety and happiness. I just wish I could do the same for her. I'd do anything to see her at peace, to mend our relationship, and to go on living my life knowing I did the best I could for her. 

Would love to connect further if anyone is interested. I am interested in all the books, articles, clinics, meds, treatments etc that you've found helpful.

harshedbuzz

KMH2021 wrote:

Spina21 and others --- I AM SO GLAD I FOUND YOU OH MY GOD.

I am so glad you found us. In late 2016, I put out feelers in a post on WKS and got crickets. 

I was starting to feel like the only person on the planet who was trying to sort a triple diagnosis of alcohol use disorder, dementia and depression. I feel I am coming up short on providers that can help my mom - are you having that experience?

Does your mom actually have a WKS or other dementia diagnosis? Do you have the legal paperwork in place to act on her behalf in the form of a POA or guardianship? How old is your mom and does she have the assets to fund MC for a few years.

On providers. I live in a medically well-served community and finding care appropriate to dad's needs was a challenge. The first ER mom took him to, missed the WKS (didn't take blood or start Thiamine IV) and turfed him to the one general neurologist in the area who was scheduling 6 months out. Even in the Memory Center, there wasn't a lot of understanding of the intersection of dementia and addiction. Dad's primary neurologist was from another culture where alcohol use isn't even a thing and could not wrap his mind around addiction. He went all Nancy Regan on us with his "just say no!" which was not especially helpful.

You might be up against a couple things.

Firstly, as an active alcoholic, there is no help for someone who does not want it. If your mom is using alcohol to dull the reality that she's having a cognitive shift, she may not want to quit. 

Or she may have anosognosia and not realize she's had a change in her memory, cognitive and executive function skills and realize she needs to make the change. Anosognosia is very common in most forms of dementia and requires work-arounds to keep the PWD safe so as not to antagonize them. 

Another piece to this is the concept of a bridge-too-far. At some point, PWD lose the very skills they need to learn to become and remain sober. Especially with WKS, which is more of an amnesia than true dementia, she would be unable to learn new concepts for sobriety and recognize when she should deploy them. We looked into rehab for dad- there was exactly 1 rehab center in the greater metro area dedicated to the elderly and they were very up-front that while they'd enroll dad in their program, they didn't expect him to get anything out of it at this point in his disease process. My cousin was diagnosed at a younger age and with less impairment; he was mostly able to be independent in his ADLs but unable to safely tackle his IADLs. He was somewhat successful in rehab and his son moved him into an inlaw suite where he was able to police him. That worked for a time. 

When we placed dad, we did have a few issues with facilities that "cherry pick" their residents. Some places only extend invitations to join their community to those who are well groomed and pleasantly befuddled. We didn't even try there, but mom's first choice turned dad down on the basis of this diagnosis having an anecdotal reputation for behaviors. Likewise, there are some places who discriminate against younger PWD who might be physically strong enough to hurt someone or who may be young enough to act on sexual urges. My first choice was our state's veterans home; staff there were nonplussed by the WKS diagnosis and took the associated behaviors in stride. Perhaps something like that might be an option if she or one of her spouses were vets. 

Quick background on my story --

My mom and I were best friends for 30 years (and codependent I am now seeing). She married and divorced two alcoholics and I don't think she ever got over the pain of it all.

This must be extra painful for you. An Al Anon meeting might help you there so long as it is one where they understand the dementia piece. 

About 15 years ago, she started drinking too much. When she retired 5 years ago, it got worse. Then the pandemic hit and it seems like it all went on steroids. We started having a lot of hard discussions about her drinking about 5 years, but I couldn't see alcoholism was the issue until this past May. She was in a frail physical state and I picked up the al anon book for the first time and had a panic attack realizing what the real issue was.

I got her into detox/rehab, but the detox was rough. 3 ER visits, delirium, and finally just discharged to the hospital for a week. We finally made it down to FL for rehab. After 30 days, they wanted to keep her to do a neuro psych eval, but I didn't feel like we should spend the money to keep her at the facility for another two weeks to do that.

Ugh. Did she ever have the neuropsych? Or a workup with a neurologist to make a diagnosis?

The rehab facility told me to take her to memory care, I couldn't wrap my head around that so I organized for friends and family to be with her round the clock for 6 weeks. I thought her mind would clear up once off the alcohol.

The recommendation for MC was probably your best option than and now. In your shoes I would make this happen. 

On my last visit, I took her to visit every AL facility we could find, and I hired home health aids and a recovery coach to help her.

Alas, she might not have the skills to make use of the plan you put in place.

There's an old saw here that is thrown about a lot- that is, by the time a family is willing to consider AL for their LO, that ship has sailed and it's time to book the MC cruise. Another of my cousins placed her mom in AL when MC would have been more appropriate. I don't think family realized the degree of scaffolding my cousin provided for her mom and assumed she was more capable than she was. AL was a big, fat fail. Auntie wasn't able enough to show up for mealtimes, she was too impaired to participate in activities geared to people who didn't have dementia and the other residents kind of "meangirled" her by refusing to let her sit with them for meals or on outings. She didn't last there long because she fell and broke a hip; residents are only checked twice daily during medication distribution so she was on the floor for about 10 hours. 

It's also generally not recommended to shop for a care facility with the PWD. You can't ask the hard questions with them there. 

She started going to aa everyday, but she relapsed the day I left and went back to a bottle a day. We were working with a family therapist to try to get her to be willing to go to rehab, but I knew in my heart she wasn't capable of making those decisions. She fell twice and hit her head. After the first fall, the therapist told me to give it more time that we were close to willingness. After the second fall, her neighbors called us and said if we didn't do something right away she was going to die. 

I'm sorry this didn't work as you'd hoped and that the therapist led you down this path. I wonder if your mom was "showtiming". This is when a person in the early/middle stages of dementia gets it together for a time to perform as though they're fine. This can be frustrating for caregivers because 1) it plays with their heads and hearts given the temporary nature of the performance and 2) it can interfere with professionals getting a sense of what you are up against IRL. Dad was prone to Oscar-worthy acting at his geripsych's office, so I used to send short video clips of behaviors we saw at home.

We came down and basically forced the hospital to take her to detox (so many places refused to care for her). She was finally admitted and stay about 10 days. I found a 'family care home' that doesn't serve alcohol for her to live in, and my hope was she could do some PHP. She got kicked out the first day of that. She also called me about 30 times per day begging me to take her home and threatening me with legal action etc. I was told to block her calls so I did. 

I'm sorry this didn't work out. It could be your mom has progressed beyond the ability to participate in a meaningful way with a PHP. It sounds like you need a MCF with staff who are familiar with WKS. 

I feel awful about the situation and just want my mom to have some peace. I feel I need to move her to a more long term facility, but I am not sure what's best for her.

Best for her at this point is safe. It is likely a MCF where she can not access alcohol. If she's already cognitively impaired by alcohol use every drink she takes will be doing irreparable damage (according to dad's neurologist).

I just want her to be happy. (And I am slowly accepting I don't have any power over that)

Happy may not be possible. Safe and protected might be as good as it can be. If she's driven to drink and has access, IME, she will decline at a much quicker rate than one would see with other kinds of dementia. When my dad was first out of the hospital and living with my mom, he continued to drink. He'd lost over $350K day-trading early in the disease and my mother didn't want to place him "too early" as odds are very good she will also need LTC down the line. This was not a situation where she could be the alcohol-police and endure his abuse, so he did drink for a time and he went downhill quickly. Dad got a preliminarly diagnosis on 8/31/2016 (their 60th wedding anniversary), confirmation of the WKS/Alzheimer's and passed in April of 2018. He also had Alzheimer's and while his neurologist thought he was in very early stages at the time of his diagnosis, I saw significant personality changes as early as 2005 and memory lapses/lack of social filter by 2008. His death certificate lists Alzheimer's as primary cause of death (aspiration pneumonia) with WKS as a contributing factor. In his case, the Alzheimer's was always going win; your situation is different. My cousin lived with WKS longer- about 8 years or so. 

I also just want a clear plan of care for her - what meds, what activities, what environment?

A good quality MCF sounds like a good fit. They would have activities that are geared to people with memory and executive function issues and will not generally serve alcohol. Dad did not take any of the Alzheimer's medications because his neurologist wasn't 100% certain he didn't have some FTD issues as well. For meds, we relied on a geriatric psychiatrist for meds to address his anxiety, aggression, depression and behaviors. He took an SSRI, an atypical antipsychotic at a low dose and Wellbutrin which seemed to dull his appetite for alcohol a bit. 

From there, I want to wrap my head around my role in all of this. Part of me wants to save her just like I always have and make her life my responsibility, but part of me knows this comes at the cost of my life, and I deserve a life too. But it's hard.

Delegating the hands-on care of your mom to trained professionals doesn't mean you won't be her ally and advocate in living with this diagnosis; it's a form of caregiving, too. But it would allow you to go back to the role of daughter/BFF and enjoy your time together rather than policing alcohol, fighting over showers and dealing with incontinence. It would give you room to make a life for yourself as well and plan for your own future. 

A part of me wants to give up my life to save her, and a part of me knows that's almost the easier path in a way.

But it isn't possible. Only she can save herself and it feels like she doesn't have the desire or mental bandwidth to make it happen. Your job is to keep her safe.

I just feel so freaking guilty. She was truly the best mom of all time, she kept me so safe when my dad abandoned me and her second husband abused her. She always got us out of trouble and into safety and happiness. I just wish I could do the same for her. I'd do anything to see her at peace, to mend our relationship, and to go on living my life knowing I did the best I could for her. 

She sounds like a terrific lady who raised a wonderfully caring daughter. 

If you have the legal right to make it happen, you do have the ability to protect her and potentially give her more time with you. The quality of her life might not be all you imagined for her, and she will have a period of adjustment that will be hard on both of you, but you could get a chance to be her daughter and have a warm relationship. If she settles in and remains stable, you could join her for activities and even do outings with her at some point. 

If you do not have the legal ability to act on her behalf, you should see a CELA and make it happen asap.

National Elder Law Foundation (nelf.org)

Would love to connect further if anyone is interested. I am interested in all the books, articles, clinics, meds, treatments etc that you've found helpful.

There's not much out there on WKS. I did find this more general piece very useful for understanding dementia as it impacts the person living it but, of course, I was also up against ALZ so YMMV.

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

HB

Serendipity1der

Hi! I felt this post in my soul. My mother who has 6e/7a Alzheimer’s and my father who has dementia due to alcoholism moved in with me 2 weeks ago. I’m single with a 16 year old son still at home. My father drinks beer sun up to sundown , and when he drinks too much he’s either mean and aggressive or weepy and emotional. I honestly feel like he is more work than she is. I don’t know what I’m doing , or why I made this choice most days. I’ve tried telling him he can’t drink so much or to limit it to afternoon hours etc, because he doesn’t eat at all unless I stress him about it. Ugh , any advice ?

Spina21

Thank you all for your posts and comments. Glad we all found each other. 

As for those seeking what to do, with my LO mom her dementia was such that she COULD NOT live alone. She was unable to function, and had developed incontinence and other issues that left traces / clues all around the house for me and was plugging things into the outlets that did not belong. I would estimate she is in stage 6(late). 

In consultation with a lawyer about guardianship (the best few hundred dollars I ever spent) I learned about the laws in my state with regards to elder issues. In NYS if you tell the ER that the person does not have a safe home to return to, and you fear for their life and the lives of others (driving, starting a fire) they must keep them in the hospital until a solution is presented that you (family) bless. The hospital WILL TRY to discharge them, but by law they cannot. If you ask for a blood alcohol they will perform it and if needed do a medically supervised detox.

Then you are buying time to figure out post discharge plans, but in my case it got me 3 weeks. In that time I was able to locate a secure MC facility (they do not serve alcohol) and mom has been there since Thursday of last week. It is a work in progress - they have told me it will take about a month for her to settle in. 

She is telling everyone there her favorite food is wine, but aside from that she has no access to alcohol. Sadly, seeing me agitates her and me as she asks me to take her "to a restaurant" so I have stopped visiting and am sending hired caregivers to be with her in the evenings for the difficult sundown time. 

I do not know what the future holds, but at least for now I feel there is some peace of mind, for me at least, since she is safe.

I guess my input would be to learn about the elder care laws in your state, and attempt to get a health care proxy form signed by your LO giving you those rights.

Praying for you all, and myself!

KMH2021

Hi all -- thank you so much for your responses, it's so incredibly helpful to have connected. I am amazed by all your strength and fortitude. It's truly remarkable. And I am so sorry for everyone, this is hard. 

I do have a few follow up questions, and responses. My first is, did you have trouble finding the will to focus and carry on with your own lives? I am. I am 38 and was thinking about getting ready to start my own family in the next year or so. I have a wonderful partner. I can't imagine giving focus to that right now. I guess in 6 mos the situation may be different. Hopefully I can keep her safe enough to stabilize the situation somewhat.

Re legal - I have durable and healthcare power of attorney. I am thinking of pulling the trigger on guardianship, I was going to ask if should we resign as trustee and make me successor of her trust as the immediate next step (lawyer idea)

Re diagnosis - Major Neurocognitive disorder from a neuro psych when she was at her best with 60 days sobriety. She's since relapsed, had two falls to the head and gone to the hospital again so I am not sure what it will be now. Sadly, I also took her to see a neurologist when she was at the height of her soberity and he told me there was no issue with her. That was very confusing and we lost time, not to mention she relapsed and fell. I really feel I might report him.

Re placement - she has an LTC policy. She's 71. She's at a family care home now but so miserable I am wondering if MC would be better for her. More activities and support? I dont know. I am thinking we will see how the next two weeks go and try to assess. At some point I feel we need to move her closer to family. Her brothers are in VA, I am in CA and she's in NC right now. I am scared to have her move near me, and I am scared I will regret not having her move near me. I am scared of ongoing grief and trauma if I am seeing her daily/weekly as she's pretty tough on me right now. (abusive has been the term used) But I also feel guilty not having her move near me and making my life about going over there to see her most days of the week. But also - where does my relationship and chance to focus on my own family building fit in there? I just dont know what to do.

Re al anon - I value it greatly, and I struggle with the not getting dementia thing. Are there al anon meetings for families also dealing with dementia? Sometimes I feel like I cant trust what I hear in al anon because I do in fact feel so responsible for her. But then again that is such a trait of ACOAs! So who knows. 

Spina21 I am so inspired by your strong boundaries and valuing of self.

harshedbuzz You are a wealth of information and knowledge and caring and love! Thank you.

Spina21

KMH2021, I know we are complete strangers yet in some ways intimately connected by our family issues. 

I wanted to respond to your musing on starting a family. While having children comes with its own set of challenges, I have found that parenting my children is what helps me to heal. I am not implying they are my little therapists, but the choices I make and the actions I take as their mother allow me to grow and forgive others and myself. 

For example, I have always enjoyed alcohol myself and in the back of my mind I always thought I was "different" from my mom and had a healthy relationship with alcohol (whatever that is!). Yet over the past few years, my drinking increased to the point where I was having 2-3 drinks per evening, at lunch on weekends etc. I started to have a little voice in the back of my head asking me if I too might have a problem.

When everything went down with my mom it dawned on me I was on the same path as her, just 30 years behind. I am now 50 days sober and a million times happier with this choice. So while I cannot curb my mom's drinking, I have made a choice to show up for myself and my family with a clear mind and heart. This is just my story, and I am sure others have stories that do not involve alcohol. But alcohol is the uniting issue here and I believe that looking at our own relationship with it must be part of the healing.

I hope you can live your life and start your family if you wish. 

Also, I listen to a wonderful podcast (whether or not you are trying to be sober she covers a ton of emotional family issues). Episode 179 of The Sober Therapist covers healthy detachment in emotionally fraught relationships. I hope it helps. 

harshedbuzz

KMH2021 wrote:

Hi KMH.

I do have a few follow up questions, and responses. My first is, did you have trouble finding the will to focus and carry on with your own lives? I am. I am 38 and was thinking about getting ready to start my own family in the next year or so. I have a wonderful partner. I can't imagine giving focus to that right now. I guess in 6 mos the situation may be different. Hopefully I can keep her safe enough to stabilize the situation somewhat.

Ugh. In my situation, dad was kind of late to the ARD-party, so I was lucky to have already been blessed with a husband who is a remarkably supportive partner and already had an adult son. My kid has a high functioning form of autism that leaves him with a developmental delay in emotional maturity of about 1/3 of his age, so dad's needs were competing with DS's at times and I do feel like there were times when I needed to be more present in helping him transition to independent adulting and was distracted by my parents' needs. Back-burnering dad would have been OK (I am great at compartmentalizing), but my mother needed me so I was torn.

As @Spina21 suggested, my family did keep me sane at times. And my husband, son and adult niece were able to give me real hands-on help in managing the many moves and driving.

Re legal - I have durable and healthcare power of attorney. I am thinking of pulling the trigger on guardianship, I was going to ask if should we resign as trustee and make me successor of her trust as the immediate next step (lawyer idea)

It might be hard to use the POA if your mom has not been deemed incapacitated and if she's not willing to be re-evaluated, going for guardianship may be your best option. I know 2 people who were forced into this route. My aunt was able to get guardianship of her sister in both MA and ME and a friend and his brother of their dad in PA. My aunt's was pretty straightforward- although there was considerable vetting of the guardian sister because of the value of her assets. The friend's situation was stickier. Like my aunt, the court insisted on the PWD being evaluated for cognition/competency. DF's dad was feisty and still aware enough to engage his own representation and fight the sons, but the evaluation was enough for the judge to side with the brothers. FWIW, dad lived in an apartment attached to DF's home and he still came for dinner and the kids' activities the whole time. 

I'm not sure about the Trust. If you are seeing a CELA, it's probably good advice but you might want to get a second opinion in the state where you move her. 

Re diagnosis - Major Neurocognitive disorder from a neuro psych when she was at her best with 60 days sobriety. She's since relapsed, had two falls to the head and gone to the hospital again so I am not sure what it will be now. Sadly, I also took her to see a neurologist when she was at the height of her soberity and he told me there was no issue with her. That was very confusing and we lost time, not to mention she relapsed and fell. I really feel I might report him.

If you are looking at WKS, any alcohol consumption will be causing brain damage on top of what exists already from trauma associated with falls. Not all alcoholics will develop WKS- it seems there needs to be a genetic predisposition. As I mentioned before- my dad and his nephew both had it related to alcohol abuse, but my sister very likely had it related to end-stage AIDS. She wasn't all that much of a drinker. 

Re placement - she has an LTC policy. She's 71. She's at a family care home now but so miserable I am wondering if MC would be better for her. More activities and support? I dont know. I am thinking we will see how the next two weeks go and try to assess.

These kind of don't really exist where I live, so I can't speak to how they compare to a MCF. Dad's MCF had activity programming 7 days a week from about 8am until 9pm with a siesta after lunch. There were religious activities, fitness, games, movie nights, sports nights, weekly lunches out, crafts and musical performances- something for everybody. Plus, residents were engaged to help with chores if they had an interest doing laundry, setting tables, running a mechanical sweeper. 

If this is a new placement, it might take time to settle. My dad settled in about a month; but some report 3-6 months as more typical. 

At some point I feel we need to move her closer to family. Her brothers are in VA, I am in CA and she's in NC right now. I am scared to have her move near me, and I am scared I will regret not having her move near me.

This is a tough call. 

IME, it is possible for the window of opportunity to slam shut in a heartbeat should she have a stroke or major fracture which could preclude moving her without an air ambulance. There is also the notion that with progression, she may no longer be a candidate for a MCF if she doesn't meet their criteria to move in. Most of the MCFs near me expect a resident to be ambulatory and able to self-feed on admission to the community. Otherwise, you might not get your first choice or end up in a SNF.

I'm team CA unless your uncles are the sort who have been managing her needs and wish to continue. Chances are they have their own history with her choices and may not be up for the sort of involvement a local family member is called upon for as the disease progresses- the late night ER runs and final "unresponsive" calls might not be something they feel is their responsibility. 

In your shoes, I would fly her out as soon as you have legal clearance calling it a visit while she stays in this lovely senior hotel. I'd visit a local CA CELA to find out about Medicaid in your state, tour MCFs and line up medical care while you wait for this to play out. If you get her on a plane to visit, you can probably skip guardianship in NC. 


 I am scared of ongoing grief and trauma if I am seeing her daily/weekly as she's pretty tough on me right now. (abusive has been the term used)

My dad was a complete rat b@stard in the middle stages. We never had a great relationship, but when I started calling the shots with mom listening to me instead of him, the behaviors went on steroids. I am older and had already made peace with how he was and accepted that it was the disease- mental illness, addiction, and dementia- doing the talking now even though the scripts were the ones I grew up on. At the end of the day I mostly felt pity; he'd have been horrified at who he became at the end. 

That said, I got dad in with an excellent geriatric psychiatrist who crafted a cocktail of medications which dialed his anxiety and anger back a bit and made him more receptive to strategies like validation and fiblets. But OMG, there were times when I video taped his worst to share with the geripsych so he could see what we were up against as a family. 

 But I also feel guilty not having her move near me and making my life about going over there to see her most days of the week. But also - where does my relationship and chance to focus on my own family building fit in there? I just dont know what to do.

I'd suggest compartmentalization. You don't need to visit your mom daily. I used to drop by dad's for an hour or so a couple times a week. I would have gone less but my mom initially needed me to redirect his anger and she hated visiting him so I went more than I ordinarily would have. I made sure to never come without a treat of some sort- a fast food lunch, ice cream, soft pretzels- and he was generally happy to see me and we had good visits once he settled a bit.

Re al anon - I value it greatly, and I struggle with the not getting dementia thing. Are there al anon meetings for families also dealing with dementia?

I have not heard of these. I initially did meetings when dealing with my sister's drug use before dad took up alcohol as a life style.

Sometimes I feel like I cant trust what I hear in al anon because I do in fact feel so responsible for her. But then again that is such a trait of ACOAs! So who knows.

I know. It's so hard. Once dementia enters the picture the rules on Al Anon don't apply seamlessly and it would p-ss me off to have my idiot BIL (26 years clean and sober- working in addiction as a counselor) ignore the dementia piece. The reality is that dad no longer had the cognition (executive function or working memory) to learn or apply the principals needed to live a sober life. He wasn't in a position to make a choice so it got to a point where one had to be made for him. But yeah, it's a fine line. 

Spina21 I am so inspired by your strong boundaries and valuing of self. 
Me, too. 

harshedbuzz You are a wealth of information and knowledge and caring and love! Thank you.

Gee, thanks. 

Lemonwood

Thank you to everyone for keeping this conversation alive.  I too have felt like there is so little information out there on this.  I suspected my sister drank a bit too much for years and have always thought it was her way of self medicating and that she was controlling it.  Then comes Wernicke-Korsakoff  crisis  5 months ago.  At this point I don’t know if she was experiencing any dementia before her crisis, which would make it a mixed dementia diagnosis or a ‘simple’ WKS diagnosis.  She has been in AL for 6 weeks and just now getting a little bit more adjusted. Her facility in FL took her in AL rather than MC because she is not exit seeking, pleasant and socially appropriate.  I have noticed there are several on her floor that have significant memory issues.  Seems like different facilities have different philosophies.

I am so new to this that I am learning as much as I can.  If you haven’t checked out Dr. Natalie’s YouTube channel on Dementia Careblazers, DO!  She is reputable and has shorter video’s on how to deal with lots of different situations plus how to take care of ourselves.  I also found https://www.youtube.com/watch?v=xpE5iUkCETo&t=2s. which is three part series on just what WKS is.

Serendipity, your post keeps haunting me.  I’m no expert and there’s lots of good advice throughout this string.  Teenagers are a challenge all on there own but your situation must be incredibly challenging.  Are there any day programs you can use for your parents?  Is moving them to AL or MC an option?  I applaud your willingness to keep them with you, but your mental health and relationship with your son is also important.  The Alzheimer’s helpline is a really good resource to help sort out what to do and how to respond.  They spent nearly an hour with me and forwarded some specific resources for my situation.

Finding gratitude each day takes real effort, but on my gratitude list today is this forum and the willingness of each member to care and share. 

KMH2021

Hi All, checking back in. How's everyone doing? I started taking anti-depressants to get through this. It's helped me. 

Thanks for all the input so far. Wondering one last bit as we make final rounds on where to move my mom -- anyone have any experience with memory care vs assisted for someone just in early stages? (mild cog impairment is her latest, but she gets lost easily, irritated etc) 

Lots of folks are pushing me to place her in MC just to keep her away from alcohol, but is there anyway I can do this in AL? I understand you can have Dr's notes that say no alcohol, but there is still a chance she could drink in someone else's room. 

Will it be a nightmare if I put her anywhere but MC?

Thanks for any thoughts you might have. 

Lemonwood

Hi again everyone. 

KMK, I’m glad you’re doing better!  We moved my sister half way across the US into Assisted Living vs MC. She has been there 2 months now. It was a difficult choice because I believed she’d give up if placed in memory care.  She is 65. We found an AL facility that took her with her severe short term memory issues because she is lucid, not exit seeking and a pleasant personality.  I’ve worried about the access to alcohol but so far it’s not been a problem.  There are Dr orders in place  for no alcohol but they do have social hours and they do their best to serve her non alcoholic beverages.  That said, she doesn’t go that often because she is anxious around groups.  All AL facilities I visited made sure to tell me they could not guarantee that they could keep her alcohol free.  The AL facility we chose makes it harder for her to have access than some of the others. 

I think it comes down to your mom’s diagnosis, functioning, personality and her ability to seek out alcohol.  My sister was sneaky about her drinking before the WKS but her loss of executive function has changed that.  If she is told no she can’t have a drink, she does not…….. so far.  She is making great physical progress and is learning a few ‘work arounds’ for her memory loss.  (All that may be a topic for another conversation).  I’m glad we started in AL.  They have MC in the same facility so if we have to move her later we can. 

I know this is such a hard decision!  I look back and play the ‘would have -should have game’ but in the end, we all make the best choices we can for our loved ones.  Gather as much info as you can and then trust yourself.  

harshedbuzz

KMH-

Our decision was easier. Dad was in his 80s and had Alzheimer's as well, so a MCF was a slam dunk. There was a much younger woman there- like early 40s- and I always wondered if she had a TBI, WKS or something else. She didn't seem to notice she was surrounded by people twice her age and often sat cozied up and holding hands with various residents almost like a child. 

In your shoes, I might try the AL if they also have a MCF into which she can move if the AL turns out to be a poor fit. Where I live, most of the AL facilities have regular minibus service to shopping several times a week which could allow buying alcohol. Many also offer a happy hour with tiny portions offered with cheese or other snacks several times a week. 

That said, AL can be a nightmare for other reasons but this would be specific to the AL, the other residents and your sister. One issue is that activities will be geared towards those who have no cognitive shift- she may not be able to keep up with their activities and get herself to meals and such without the sort of prompts given in a MCF. My one aunt was placed in AL long after she could make a success of it; she missed meals and was bullied by the meangirls who lived there because they thought she cheated at games and they sensed she had dementia and resented her being allowed to live there..

HB

Lemonwood

Just checking back in with everyone.  Comparatively there is so little out there on Korsakoff’s that I feel the need to keep in touch for some  real life experience with this.  

KMH - I hope you have been able to find a care solution for your mom.

Spina21 - I hope your mom is adjusting to her MC more

Serendipity1der - how’s it going with your parents?

An update on our experience with my sister.  She was diagnosed with WKS in July.  She has gone from bedridden at hospitalization - to stand and pivot in rehab - to walking (using a walker for long distance for support).  Her executive functioning is better as she realizes she needs the extra help of assisted living but can’t handle even the thought of paying bills etc.  her short term (working) memory is still very poor and she knows it.  She is able to develop new memories with lots of repetition.  She can find her way to the dining room and back.  We bought her an Amazon Show that she loves.  She is starting to learn how to input items in to the calendar skill and she plays music often.  

At this point I am pretty honest with her and don’t need as many fiblets.  She is more oriented in that she knows who is alive and not.  She can say that poor nutrition and alcohol created her issues.  She still asks about wine when triggered by a restaurant outing. She cannot remember that they have given her meds and still needs to be cued on the safety steps for showering.  From everything I’ve read, patients can show improvements up to 2 years with the WKS but usually require ongoing care.  Her hardest question for me now is when she can move out on her own. I don’t know that she ever will be but constantly tell her that she doing great and for now she is living in her own apartment and able to get any assistance that she needs.  Then I divert the conversation.

I am so proud of her.  She has courage and is facing her fears and confusion without alcohol and is beginning to poke fun at herself when she know she is not remembered something.  We laugh a lot together and I am thankful of this different but new relationship we are forging.

I don’t want this post to appear as an all about me post.  I share all this because I have found so little on what people are actually experiencing with WKS.  Please share any experiences you are having.

harshedbuzz

ttt

caringformom0507

I'm a few years late to this thread, but I wanted to say thank you for sharing your stories.

If anyone has found any support groups or resources that have been helpful for caregivers caring for loved ones with substance abuse issues on top of memory issues, please let me know.

storycrafter

The Alzheimer local and online support groups are a good resource. Al-anon has been and continues to be good support for me in dealing with my spouse's dementia (FTD), both in-person and online groups. It's another place to receive unconditional love, respect, and acceptance. It's also helpful to read their literature on detachment and, in general, coping with addictive patterns in healthier ways.