Please Help ASAP

First, thanks in advance if you take the time to read my ranting. I hope I don’t scare anyone away before I can get the help I desperately need.

My mother has been a chronic alcoholic for as far back as I can remember. She is now 62 years old and has just been hospitalized with the classic symptoms of Korsakoff’s syndrome. I had no idea about this syndrome prior to coming home from the hospital tonight and searching her symptoms - “alcohol, thyroid, delusion”. When I came across this syndrome I knew it was it.

I need to give you a bit of history so that you can understand my dilemma.

As those of you with a simalarly affected loved one can imagine, my relationship with my mother has been difficult, and her having mental health issues compounded our issues. At one point, years ago, I fully removed myself from her life for the sake of my own mental health. After 4 years of torturing myself with if she was even still alive I did re-enter her life (in a long distance way) to find that she had remarried, was medicated and was (I thought) being forbade liqueur more than once a week. We are now 10 years later.

To the point at hand…

I usually talk with my mother a few times a week and visit every couple of months. The last time I was there was in December finishing up a dress for her Christmas gift. She was ok, for her, but weak and told me that she was going to her Dr. for tests. She complained of not having much of an appetite and not being able to walk for any huge distances. But while I was there she did eat and was able to stand for her dress fitting so I foolishly assumed that she was just getting older and knowing her history of abuse I assumed that these were probably the normal results for an aging alcoholic. Both she and her husband assured me that she was seeing her Dr. regularly and that they were searching for a cause.

After that visit I had my usual calls with her but the first week of January when I called she got on the phone she said - “I know what I want for Christmas”. I thought to myself first - she’s drunk so hang up and I ended the conversation. Then I started to wonder about early Alzheimer’s. I wasn’t too worried for her safety or anything like this, again going on the assumption that she was seeing her Dr. (completely my fault). The next couple of times I called she would tell me that she wasn’t eating too good and that her Dr. had ordered an MRI to check out her neck and throat. I hoped for the best and tried to be patient hoping for a diagnosis and her getting better.

This brings us to yesterday.

Her husband called me. A first for everything rite? Well, he sounded worried and said “she won’t eat, maybe you can talk to her”. When he put her on the phone and I heard her little weak, mousy voice say hello I asked her “are you ok, you have to try to eat something” her response was “daytime or nighttime”.
My heart fell in my lap. I told her “mom you have to eat something” and she didn’t respond so I asked her to put her husband back on the phone and she just started saying “yeah, yeah?” Finally she put him on the phone and I told him to hang up and dial 911 because there is something really wrong with her. They took her to the hospital and I went down there.

My mother was a rail. She reeked of urine. Her skin was like tissue paper. Her hands were like ice and she could hardly keep her head up. She could not hold a conversation being completely confused, but was too weak to be anything but calm as a cucumber. I though she was dying.

In the usual admittance procedures I found that not only did she not have any appetite but that she actually hadn’t eaten anything of significance since Christmas. I thought to myself how is it possible that she is still even alive without any food. But later in that day I found out how. She was living off of vodka and iced tea highballs. Her husband admitted to me and the doctors in the ER that she has for years been insisting on a drink by her bedside for wakeup and at least 8 shots a day. I am OUTSIDE myself with anger, guilt, frustration, fear, you name it.

My dilemma? I have to get my mother help. From what I just learned about this syndrome, her symptoms, and the fact that the first courses of treatment for her have been I.V fluids with dextrose and a B1 shot, leads me to believe this is what we’re dealing with here. She is safe now in the hospital, but if they let her go what then? I mentioned to her husband even prior to learning about the severity of her situation that it may be best for them to get some home health care a couple/few times a week so that she can be bathed and fed and looked after for her health, but his attitude is that he don’t want anybody in “his” house (not). He has always been controlling (part of the reason I don’t visit more often) and throughout the day he insisted that he’s been caring for her and they don’t need any help. I am really terrified that if she starts coming around from the B1 (and I hope and pray for that miracle) her alcoholism is going to take her rite back home to a bottle of vodka. And he will be more than happy to fix it for her.

I have to get her help.

I learned from talking with the Dr’s last night and today that PA doesn’t have any laws prohibitting a person from drinking themselves to death, and with her husbands rights probably coming before mine as a child of hers I am so lost.

What should I do next? I do plan on talking with a social worker tomorrow I hope, but what’s the best way to deal with this? I just want to try to be prepared. I know it’s late and I’ll be leaving for the hospital tomorrow morning, so I’m hoping there’s a few late nighter’s out there with some advice for me.

Please anybody.

I went through a similar situation with my mother about 3 years ago… you
cannot feel guilt or responsibility for the things that have happened or for
what will take place from here on out… that is the most important message
I can give you. Her recovery is based on her. I had to go to court for
temporary (now permanent) guardianship of my mother and have her placed in a
nursing home for a few months (she was only 48) then she came home to live
with her boyfriend (also an alcoholic). He still drinks like before (but
he’s scared to cross me and I also have control of their living arangement
and could kick him out so he pretty much does whatever I tell him to) (not
that it’s much). She does need another person living in the house though
and I don’t really know what I would do with her if he didn’t stay there…
tough desisions. Anyway… I don’t have a lot of time to write at the
moment but I would be happy to share the rest of my story if it could help
you in any way. After 3 years she has come a long way and does not drink.
I have learned much about the disorder and how to deal with her etc…
please feel free to e-mail me if you have questions. Chella
----- Original Message -----
From: “shorty40” wks-cpt7720@lists.careplace.com
To: randr31@charter.net
Sent: Thursday, February 07, 2008 11:36 PM
Subject: [wks] Please Help ASAP

first - ty ty ty a million times.

you wrote - She does need another person living in the house though
and I don’t really know what I would do with her if he didn’t stay there…
tough decisions.

exactly. she needs him and is happy with him. i don’t want her or me to loose that. i need him there. i just dont want him to make things so difficult.

i do feel so much better now after today. well, it was an emotional and upsetting day, but the Dr’s and Social Worker are all aware of the situation and have all assured me that they wont allow her to return to an unsafe environment. No matter what, my mother will be safe.

Please if you wanna share with me, I soooo much wanna share mine too. As much as my other half is supportive, and friends too, they just don’t really understand.

Hi Shorty. My name is Kathy and I went through a very similar experience 5 years ago. My Dad died in 1998 and afterwards my mom became very depressed. She was probably always an alcoholic but functioning. After his death she became less and less functioning and pretty much drank non stop. I too lived in another state so it was hard to manage and hard to recognize but as each year passed it became apparent that she was getting worse and worse. That last year she was here for Thanksgiving but it was obvious that she was not well, she said she had hurt her back. Because of the distance she was able to hide it well. And when I confronted her about her drinking she would deny it and it was easier for me to accept that. My mother was always thin and with winter clothes on she did a good job of hiding it. That year she decided she didn’t want to “do” Christmas. She wouldn’t come here, wouldn’t let us come there, wouldn’t let us bring her here. In hindsight there is a million should haves, if onlys but I can’t go there. Anyway, I wrote her a letter telling her what her alcoholism was doing to our family and how we wanted her to please get help. I didn’t send it. I too decided to wait until after the holiday so it wouldn’t get messy. I talked to her on Christmas eve. When I tried calling the next few days the phone was busy. I thought maybe she was talking to other relatives. My uncle called and he too was concerned as the phone had been busy. So on New Years day I asked an operator to check the phone. She said it was probably off the hook. I called my best friend and asked her to check on my mother. She went right over, called me right back and said you must get here now. So on New Years Day I got to my Mom’s in 2 hours in what is usually a three hour drive and found her completely in a stuper. She was disheveled and looked like an Aushwitz victim. The house was a mess, there was no food and empty wine boxes everywhere not to mention the piles of depends. She had no idea what was going on or why I was there. I took her to the hopital where she was admitted for dehydration. She was malnourished and had pneumonia. The doctor said he had never seen such a bad case of malnourishment. After a few days she was diagnosed with Korsakoff’s. She had all of the symptoms, beefy tongue, no memory, no sense of reality, she was confabulating. She could not walk. And on and on. She suffered the physical consequences of pneumonia and also had bleeding ulcers. She almost died. She was on a ventilator for a few weeks. It was hell. But she survived. When she did it was like, now what. It was very apparent that she could no longer live by herself. She was admitted to a nursing home, on a locked Alzhiemers unit, because she could no longer walk yet she kept trying to “go” places, like catch a boat, or whatever she confabulated at the time. Eventually though, through physical therapy she was able to walk. They put her on a combination of clonidine and seroquel and that seemed to help with the confabulations and the impulsive behaviour. Eventually it became clear that she was much higher functioning than the other patients on the ward and she was no longer a risk for wandering so I was able to move her into an assited living facility near my home. She was extremely apathetic, did not take care of herself hygenically, was unaware of her surroundings, had no short term memory, and was unengaged in life in general. I brought her to a neurologist who prescribed Exelon and later added Namenda, typical treatments for Alhiemers but it seemed to treat her mood and gradually she became much more engaged. They described it as turning a light on in her brain. She was tested by a neuropsychologist who confirmed the diagnosis of Korsakoff’s because there were no changes in her functioning over time. She did not get worse, she did not get better. She stayed the same. Last year she began to play bridge. That seemed to trigger a few neurons in her brain believe it or not and she became much happier, more functioning, and much more engaged. She is left with no short term memory but her cognitive functioning is very good. She has learned to take notes and leave notes to remind her to change her clothes and do things. She still has no insight into her disease but because she no longer drinks and is on the medications, she is much much better. She is happy though she is no longer the person she used to be. She is no longer my mother or a real grandmother. I am her caretaker, but it is much easier now. I will be happy to answer any questions you have. Main thing is she has to stop drinking and if she does my mother’s story hopefully can offer you some hope. Good luck…

Oh yeah, she was only 63…

Your last line really got me because you said no one really understands…
how true. It has been a mere inconvenience for most of the people that are
involved in any way in my mothers (Connie) life. She has parents (though in
their 70’s) who are perfectly healthy, 3 sisters, a brother, and 3 children.
I have been the only one willing to take on the responsibility for her. To
understand my sitiuation… I have always lived within 10 miles of her but
really have not seen her or talked to her unless I had to or it was a
holiday or she needed a ride somewhere etc. Same with my sister who is 4
years younger than me and doesn’t even remember when my mom lived with our
father (who raised us from 8 and 4 years old). She also had another child
when I was 10 and put him through a horrible life–long story. So my
siblings are not concerned and I get that. My sister will do anything I ask
her to do but I hate to ask because I understand her contempt for Connie. I
have long ago gotten over that. Just numb toward her now and that makes my
job much easier than yours I’m sure. I have gone through soooo much with
her and you’re right - people who aren’t living it are not going to get it.
I found a couple of groups online, posted a few times, and read and reread
everyones posts and it was very comforting to me. Just to be able to know
that there are people who have gone through it is helpful. Good way to get
it out and vent to people who understand. Some doctors that I took my
mother to knew less about the disorder than I had researched online. One
didn’t even know what I was referring to and I had to explain it to him.
The judge that I had to go in front of to gain gaurdianship actually yelled
at me and pounded his fists on the desk (thinking I was trying to gain
something financially from her, funny cuz she has NOTHING, no house, car,
savings, not even decent clothes etc.) until I had a social worker and a
nuerologist call him and explain everything. Some days I just wanted to
forget she existed. Then I would suffer with thoughts of what an awful
person I was… I have finally gotten to the point that I have made
peace with our arrangement and her. I feel much better about the whole
thing although I do have days when I think “How the hell did I get saddled
with this?” but I don’t feel guilty about feeling that way - that’s life.
Don’t let this interfere with your “normal” life and don’t hold it against
those you’re close to when they don’t “get it”. Feel free to e-mail me
anytime. chella
----- Original Message -----
From: “shorty40” wks-cpt7720@lists.careplace.com
To: randr31@charter.net
Sent: Saturday, February 09, 2008 1:06 AM
Subject: Re: [wks] Please Help ASAP

My dad is also a long time WKS sufferer. I still cry every time I read Kathy’s story.
Carrie

Wow, I can’t even begin to thank you all for sharing with me. Finally I don’t feel like it’s me against the world.

I took the day off from the hospital today. After three days of maintaining my cool I really lost it last night with Frank (the husband) when he sat in his chair and let come out of his mouth that she is not an alcoholic. I don’t know how I kept my hands from grabbing him by his neck and throwing him out the window. I had to call him out of her room for her sake and that of her roommate, but I don’t think it made a difference. It was loud and ugly. I feel bad because while I didn’t say anything untrue regarding his hand in her condition, I have to remember that she’s the alcoholic and he is in complete denial. And I know how she is. I lived it long before he came along and I couldn’t take it. I left at 15 years old.

Before all this happened I was so thankful that she had him to look after her. It’s always been understood between my mom and me that we aren’t really capable of living together. So when I realized that he was keeping her on her medication and she was happy I was finally able to go to bed at night not wondering where she was or if I was gonna get a call from the cops that they found her wondering around naked on the highway throwing rocks at cars again. I felt like I knew she was safe. Now with all of this, that’s gone. I can’t rely on him to take proper care of her, or her of herself. But it’s gonna be ok. I just have to come to the realization that what’s done is done. Fault doesn’t matter. What happens next is dependant upon her condition and I’m doing everything I can to try to make sure that her best interests are met.

Ok, done venting.

I do have some good news. When I called today she sounded much better. Not as confabulated. She even told me that I wasn’t so nice yesterday, which was amazing to me. She’s still in there, telling me not to get nervous. It’s a relief to hear her verbalize a short-term memory, but I know she has a long road ahead of her. I was really worried that I had lost most of her forever.

Frank told me the Dr. gave him a good talking to today about his bringing her all this booze, and I think he’s starting to understand the severity of the situation. I hope so. He said the Dr said at least 3-4 more days. The social worker had already told me that he was going to address her case on Monday morning, but now its comforting knowing the process of arranging her care wont be a mad dash. I can breath for a minute.

Anyhow, I’m so grateful knowing you are there. I know once Monday comes and we start dealing with her aftercare I will have so many questions and you have been so wonderful I know at least I am in good hands.

Michelle aka Shorty

Hang in there Shory. Things will get better. I know what you are going
through.

Clayton has not improved in memory at all. He is having trouble holding on
to things like a cigarette or a fork. His appetite is not good.

I think you should have a neurologist see your Mom that is familiar with
WKS. That is what I did for Clayton and I understand a lot better what he is
going through and feel more confident in his treatment.

Betty Boop

**************Biggest Grammy Award surprises of all time on AOL Music.
(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp003000000025
48)

Thanks, and I am hanging in…by what thread I don’t know.

Thanks also for the tip about the neurologist. I’ll ask the nurses and Dr tomorrow morning about having one come evaluate her. I didn’t know that that would be the specialty to check it out. Still learning here.

She’s not doing too good today. I was so happy to think she was doing better yesterday, but today the nurse said that her urine output has declined and looking at it, it’s not good. Less than 100 whatever the measurement on the bag is, and really dark. This is worse that Friday, more that 200 & lemon colored. And she was so weak today, only being awake for about an hour and the nurse had to do the knuckle to chest thing to wake her up to go for an ultrasound on her kidneys.

Anyhow…
Thanks again, I’m gonna start cooking some of her favs to try to get her to eat. Buttered pastina and spinach soup.

m

Sorry I haven’t been around. I only have email at work! Your story, as you
are finding out, is one we all share; just different names and places.

Where in PA do you live? I live right over the border in WV.

Of course, the best thing is for her to stop drinking. Reality is that
probably won’t happen. Especially if she’s living with someone who is an
enabler. If she stops drinking, there’s a great chance she’ll recover much
of her memory and physical health back.

If she doesn’t, you are in for a long road. It will be horrible, emotional
and you will feel every emotion imaginable. I’ll give you an outlook as if
she doesn’t stop drinking.

You have to do a lot of soul searching. Do you want to deal with this? If
you do, start getting things in order now. Get a Power of Attorney for her
as soon as she can sign her name. Obviously, you be that, not Frank. Have
an attorney put in language acknowledging that you, not her husband are to
be POA. Look into assisted living facilities, close to you or her,
whichever is easier for you. Carrie’s dad is not close to her and she can
tell you all the pros and cons of that. Mine is close to me.

Pros are, I check on him, take him to stores, dinners, visit family, etc. I
see his condition weekly so I know exactly what I’m dealing with.

Cons are I see him weekly. I know feel tremendous guilt if I don’t see him
during the week. I have firsthand experience of him not recognizing me, not
knowing what season we’re in, what year it is. My heart breaks every week
when I take him back or leave. It’s really tough.

Most likely, she will recover from this episode. She’s in the hosp. and
they will give her the right medication, vitamins. She may be there a long
time though, as in a week or two. She may also have to go to a nursing home
or rehab place for a while after. Eventually, they will let her go home.
Frank will say he won’t let her drink, he understands the dangers. Even if
he doesn’t bring it to her, she will get it. You will have other episodes.
Each one is a little worse. You can do nothing. The police can’t help.
Attorneys, judges, no one. You can get temporary guardianship of her but it
will be only that. In WV, the most we could get was 14 days. We tried
having him committed to psychiatric wards; 14 days. Having the hearings was
awful because as others have said, it’s assumed you are trying to take
advantage of her. She will be given a free attorney. His job will be to
make her seem coherent and able to care for herself. We had 3 hearings
altogether.

Eventually, she will get to the point that she cannot care for herself.
She’ll have an episode that she does not recover from sufficiently. My
dad’s was 3 years from his first episode. Since 2006, he’s lived in the
assisted living place. He declines steadily, even though he hasn’t had a
drink the whole time he’s been there. His walk is shuffled. His legs are
swollen and red (cellulitis), he has trouble breathing now, he’s had some
small strokes since he’s been there. His hands flap uncontrollably. His
vision is limited. He doesn’t always remember me. He seems to have
night/day down now. He forgets most things.

A neurologist is a good idea. Don’t be surprised if doctors don’t recognize
WKS as being her disease. My dad has had many doctors. 3 have treated him
as if he has WKS.

Remember we’re all here, we’ve all gone through all the things you will be
and have. And you’re right. I have the most wonderful, supportive best
friend husband in the world, but he doesn’t understand all that I go
through. At one point, we had a surplus of acorns from our trees that we
gathered so the next year, when I would be frustrated, he would hold the bag
of acorns for me as I threw them across our creek because I was so angry and
so frustrated, I felt that was the only way I could restore my sanity! He’d
hold the bag, but he didn’t exactly understand my emotions. Everyone here
will.

Amanda

-----Original Message-----
From: shorty40 [mailto:wks-cpt7720@lists.careplace.com]
Sent: Saturday, February 09, 2008 1:06 AM
To: accp@1st.net
Subject: Re: [wks] Please Help ASAP

God, reading all this is painful and STILL frustrating, even though my mom passed away over a year ago. There was much debate as to whether my mom had fluid on her brain- hydrocephalus basically. The radiologist insisted no, the doctor said yes. And my folks were willing to put her through a surgery I knew would not be of any great help at her age, just quicken things. Later, that neurologist ended up being fired for EXCESSIVE SURGERIES, maybe even unnecessary surgery as well.

My frustration at the time, and before that even was that alcohol was never discussed or downplayed to the point it wasn’t even in the equation. The typical dynamic of DON’T TELL or LIE about quantities. That and four out of five kids are alcoholics as well. I just celebrated 19 years sobriety yesterday. Even the doctors turn a blind eye because they KNOW there is little they can do…And her DT’s every time she went to the hospital where just attributed to her Alhziemers diagnosis. Of course she was seeing things and climbing out of bed! Yet, I got a lot of flack from my family initially when I would mention these things to the nurse who was in charge of her. And the drugs given to control her DT’s messed with her too for a while. Separating it all was a nightmare. I have a career in Senior Adult health care, yet within my own family, I KNEW NOTHING THEY WANTED TO HEAR or have others know. We all acknowledged my dad as the alcoholic a**hole, yet at the same time, my mother somewhere made the decision that to stay with him meant drinking to cope. And that’s what she did. I never saw an alcoholic personality from her. Just my dear trapped, verbally abused mother living in the dynamics that had been her entire marriage. My dad never accepted her demntia and that was fair game for screaming at her. So was her incontinence when he had to keep washing sheets. He was not able to cope, and refused help. Refused. He had promised her that he would never put her in the hands of another as long as he was able to care for her…So she was able to stay in her home, smoke and drink and stay with her husband until almost the very end. The end was a fractured pelvis finally from another fall. In the next day or two we were told she had Stage Four lung cancer with a node in her chest and mass in her brain. There are more little infuriating side stories with the staff and my family, but I’m not going their now. She was able to transfer directly to hospice care, in total three weeks of preparation. And theres never enough time for that! What was so difficult in keeping memories of her last days was the fact that my dad started having cardiac symptoms. (My brother had come in for 2-3 days and stayed very drunk the whole time-my dad was furious with him.) So, he had quintuple bypass started in the same hour she died. We couldn’t even wait til she was picked up. And I knew she would have wanted us to go to him, and we did. I told him mom was gone and some 15 min. later, they took him in. We waited then for his outcome. I had told mom to get over there! and she did-no complications. But, he has no real desire to live now. I see him deteriorating further, smoking and drinking… He’s always been “functional”- I think rage keeps him going. My difficulties about her care while living I have come to accept–she stayed at home with her man, then that was that. What she would have wanted. I just thought there was going to come a time where she would end up in a facility and improve SOME–that THEN there would be more time to have with her, BE with her…and there wasn’t. That she went quickly and with very little pain, I am truly grateful for. and that she still knew us all was an added gift.

Yes many stories I could tell of signs–faith and hope during that time but it will have to wait for now. Can’t do it now, I just know she is in the sunshine, that is enough for me.

Elaine’s youngest daughter

To Elaine"s youngest daughter… Sorry about the loss of your Mother, but
glad she knew you til the end. WKS is such a rare thing and so Many Dr.'s
do not even test for it, and do not know how to treat it anyhow. Betty
Boop

**************Ideas to please picky eaters. Watch video on AOL Living.
(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/
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