AMC4x4 t1_iyibp08 wrote
Reply to comment by kingtiger88 in Well-known town official kills domestic partner, then himself at home in New London by M0RALVigilance
My mom died from Lewy Body Dementia in June (well, complications from it). The last couple years were rough for my dad, who was her full time caregiver. He mentioned just last night when we were talking that he would have taken care of her forever, but I have called them every night for the past four years and there were nights I didn't know how much longer he could go on caring for her. At times he said he was desperate and needed help, so my wife and I would try to arrange help for them, and then a day or two later, they'd say they didn't need it. Dad is stubborn, but mom was more so, and she laid down the law that she didn't want people in the house. So they'd get through whatever crisis there was, then be OK for a couple days, and then it would be right back into the terribleness of the disease and they'd barely be holding on. I was grateful when summer came around again because wintertime in NH, closed up in your house caring for a loved one with dementia 24/7 just has to be terrible, no matter how much you love the person. I miss my mom terribly, but I'm so glad for my dad that he didn't have to go through another winter caring for her full time, even though he says now he would have been happy to have done it.
I don't know the psychology of it, but it's obvious that the brain tends to forget the most traumatic events and seeks to minimize how difficult things were when you're going through them.
BenThere20 t1_iyj9ose wrote
My aunt died of complications from Lewy Body as well. And right this moment I am sitting next to my mother as she has her last hours from Alzheimer’s. Dementia of any type is horrible, but I feel glad my mom did not go through Lewy Body.
AMC4x4 t1_iyjcbnv wrote
I'm so sorry... I wish you strength in the hours and days ahead...
BenThere20 t1_iyjcpjg wrote
Thank you very much.
I_knowwhat_I_am t1_iyjr0l9 wrote
Stay strong, she knows you are near her, even if she cant show you. I've been in your situation recently, and it is so hard. Your presence means the world to her. She can't tank you, but I will on her behalf! Thank you!
SainTheGoo t1_iyixktx wrote
I'm sorry for your loss. My grandfather has lewy body dementia and it's a constant worry on my mind. It's still in fairly early stages but they live 3 hours away so it's stressful. I wish they'd move, but they're worried a new location will be confusing and stressful to him.
AMC4x4 t1_iyjr54c wrote
Ugh. I'm so sorry... It's a horrible affliction.
I get the distance thing. My folks were 300 miles away (and dad is by himself there now). I have some property in NH but it's way up north, so not really useful for these circumstances. When mom was sick he put an office in the upstairs of the garage, so I will probably go up for a week here and there and work from his place. Really difficult when there's some distance involved. Only thing I can offer is take care of yourself if you can. Sometimes that's all you can really control.
Trailwatch427 t1_iykm4vm wrote
That's what Robin Williams was suffering from, Lewy Body Dementia. That's why he committed suicide, he couldn't face life anymore. Then everyone said he had severe depression, and criticized his family and friends for not being supportive enough. Your story helps people understand the extraordinary challenges and tragedy of this disease. Thanks for your post.
AMC4x4 t1_iyl6v7v wrote
When we first suspected Lewy Body, someone told me that it was what Robin Williams suffered from as well. I had never heard of it before. But the more I learned about it, the more I understood why he did what he did. If he had clarity at any point about what was happening to him, it's totally understandable wanting to go out on his own terms and not being able to face what he knew was involved with the likely progression of the disease.
A relative had Alzheimer's for ten years. She didn't have the digestive tract issues, swallowing issues, the nausea, hallucinations (actually, this one was for YEARS before other symptoms appeared - she would see people in the dark), sleeping difficulties, the entire autonomic nervous system issues... I'm not at ALL discounting the challenges of those suffering from Alzheimer's, I will just say again, I can understand Robin Williams' actions.
I had been thinking of deleting my comment as it seemed too personal, so thank you. I'll leave it. This is, indeed, a terribly challenging and horrible disease.
Trailwatch427 t1_iyoy2ic wrote
Please keep it there. I heard so many folks criticize Williams' family and friends. There was a young man in my community, only 38, who committed suicide because he'd been suffering from schizophrenia for 20 years. He went from being a cheerful, slender young man, full of music and mischief. At thirty-eight, he was obese and glassy eyed from all the drugs he had to take. He just couldn't face his life continuing to go downhill. His parents were 70, for them it was the end of his life, but also the end of all the emergency calls to hospitals and the police. Loss of sleep, loss of time.
His dad had bought an old mansion, and converted it into a rooming house for his son and others in need of supportive housing. Then his son was in his own home, but also surrounded by a caring group of friends. Still, the man took his own life, despite the love and support. We really need to stop judging family and friends in these cases.
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