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.