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It seems like all the information and resources that I find are dedicated to Alzheimer's. I am the primary caregiver for my younger sister (52) who has VERY advanced Warnicke/Korsakoff Syndrome. I am only 53 years old myself.

This whole experience, which I've only been involved with for three months at this point, has already ship wrecked my life! I have no time for anything any more. Not my poor husband of 35 years. Not my adult children, or two precious granddaughters, both toddlers, one an 18 month old who stays with me in my home five days a week while her mother works! I am heartbroken, physically and emotionally exhausted, and cannot even imagine what kind of future lies ahead for any of us.

Right now, we (my sister's family and mine) have an amazing 'care team' in place, thrown together as best we could given our limited resources (physically AND financially), but realistically? How are any of us going to be able to endure this daily grind with no end in sight? And is it really fair that so many people be required to sacrifice their lives for the good of one?

Our situation is further complicated by the fact that I am my sister's only biological relative, and she mine. I love her with all my heart! My sister's husband? He is only 45 years old. A second marriage for both of them, they have been together for ten years. Though they loved each other deeply, and he has stuck by her as she has descended into her dementia, how can he be expected to stay in this now empty relationship at such a young age? He has so much of his life still ahead of him.

And then there is my sister's eight year old granddaughter, a child she has raised since birth. I cannot even imagine the trauma that has already imprinted on her. We, her family, are attempting to fill in the gaps, but she lives with my sister still. Lives with this 'crazy woman' who now 'competes' with her more as a jealous sibling than her once adoring 'Gran'. And worse? We have all had to adopt a hyper-vigilant stance when the two of them are in the room together as my sister has become increasingly aggressive, both emotionally, and recently, physically. This is also a frightening situation in my home since, as I mentioned before, I have a rambunctious toddler underfoot!

I have spent hours online reading literature on WKS, searching for answers, trying to find resources, help, anything! I have learned much, but help? Nothing. My sister is in no way ready for residential care, and since we could not afford a 'nice' private home, I would not consider placing her anyway. Day care in my city? Exclusively for the elderly and handicapped, NOT for a young woman who has a cruel awareness of her illness, but no understanding of what has happened to her. I will NOT just 'dump' her somewhere, not even for a few hours, as so many of my well meaning friends and family (my husband's) advise. She would be terrified! Support groups? Again, devoted to Alzheimer caregivers taking care of aging parents. Already, in just three months time, this has proven to be the most isolating experience of my life.

I stumbled across this wesite, and though it is called agingcare.com, I have taken advantage of the 'Ask A New Question' box in hops that someone will read this and, just maybe, have an answer for me. I am desperate.

Thank you.
Goble

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Get your sister on Medicare SSDI right away, this will take some burden off. As for the granddaughter, she will suffer permanent emotional damage unless one of two things happen: She goes to live with other relatives OR you sister is admitted to a memory care facility. This is a difficult choice and you should discuss it with family and doctors. I am so sorry you are going through this. Please don't consider Memory Care as dumping, it doesn't have to be. Professional caregiving has strength in numbers, you are already exhausted, the little girl is at tremendous risk, and the husband needs room to breathe. I know you love your sister, but right now 3 people are at the edge of disaster and maybe if you bend, you won't break.
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What a horrible situation you are going through. I am so sorry. Would it help if you looked at each symptom of her disease and came up with a plan to deal with that symptom rather than looking at the fact that she is only 52? If it is not safe for your sister's granddaughter to live with her, your family will need to find a safe place to live, hopefully with other family members. If you cannot have your sister live with you and she is not safe at home, your family will need to find a safe place for her to live. Yes it may be in a Memory Care unit, but if that will keep her safe, it would be worth it, especially if you can find one close enough that her husband and you could visit daily. Has your sister's doctor been any help? Could you get in touch with a knowledgeable professional to help? Please feel free to ask any questions you have on this site...even if we don't have the answers, we have plenty of support here. Peace and good wishes.
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Wernicke and Korsakoff syndrome are two separate disorders. Wernicke is usually the acute phase of the two with a triad of symptoms of encephalopathy, ataxia (difficulty with muscle movement) and ocular (strange eye movements). Korsakoff is long lasting with memory loss. Most cases are due to alcoholism. First, get your sister a doctor who specializes in alcoholism and related illnesses, second, file for disability insurance, and thirdly, this condition starts usually with a Vitamin B1 deficiency (which most alcoholics don't process or the alcohol depletes it). You can check WebMD.com and spell the Wernicke correctly to get to the explanation and then at the bottom lists an array of agencies you can contact. You and your family will have to make some tough decisions, but I warn you to make sure the children are safe first. Your sister's husband took marriage vows, and he can either stick by her or get a divorce. You can do what is best for you and your family by getting her professional care since you have other pressing responsibilities. Do not subject your grandchild with your sister's behaviors which an 18 mos. old cannot understand. This situation has a solution and no one will blame you for making hard choices and keeping your family safe. Your sister's condition is a result of her behaviors (perhaps). My best wishes and let us know what you decide.
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