Lewy is what Robin Williams had.......it's just dreadful.....we are here for you Glamrock

I was soooooo pissed at Robin for pulling his plug! He’d been part of my life since Happy Days. I was maybe 9? I was so angry with him. But now I get it. I wouldn’t wish this on my worst enemy. And he’s forgiven. Not that he needed my forgiveness of course! But now that I’ve witnessed this…this…plague up close and personal? I regret my initial judgement of him. If it’s hereditary? I won’t put my wife and family and friends through this. I’ll be as brave as Robin and follow his path.

And thanks, skittles. Means a lot. Sincerely.

my dad shot himself in the head and lived for six days - people actually said, how could he do that to you - I told them, he didn't do that to me, he did it to himself.....sometimes life is just too painful. I DETEST that saying, "God never gives you more than you can handle." WHAT UTTER BULLSHIT.

And so sorry to hear that!

When my late ex-husband shot himself, I knew it was because life had become too painful for him. Even though I knew it was going to hurt our 20- year old son big time (I didn’t know how badly at the time), I also knew Mike was not ever a selfish man.

but time certainly does make them easier to bear........I hope your son is able to remember his dad for how he really was

was going through. I thought he'd just given up when he had so much. Now I understand.

same w joan rivers hubs. ppl gave HER crap cuz her hubs took the shortcut when he had terminal cancer.

not the same, ppl.

Both of my parents are dead, and for each I blame myself and beat myself up over it. Maybe that is the way it is or maybe it is just me. Either way it doesn't matter at all. I feel what I feel no matter what logic tells me. My Dad died because he couldn't get insulin, my mom from cancer and I couldn't be there when she passed. Lots of blame on my part in both instances. I couldn't help him and I couldn't be there for her, but still.
Sometimes this helps. Sometimes.

Thanks, Eko. I am saving that.

I will replay it to help me with what I am going through. We look for meaning. We want to connnect. Especially when we are going through stuff. life is hard, but life is miraculous. We can't forget the miracle, or the hard stuff will overwhelm us.

- Carl Sagan

You, your mom, and your family are in my thoughts. Take care.

Your story touched me. I have so many regrets about how my mom died. She was alone, and there was literally nothing I could have done about it, but I kick myself for it. At least you are there. I know it hurts bad, but you are there. Take care of yourself through this. Please.

They can help so much with the loss and the grief. Even when you know that death is a mercy and you expect it, it hurts. Because we love, we grieve.

was a hospice volunteer for 5 yrs. just brought my big old bullydog to visit folks in the in patient ward.
by then most of the patients were unresponsive, so i mostly was there for families and staff.
just passin out hugs and dog love. but it meant so much.

it’s just rly helpful to b around ppl who understand the process.

You have done so much for so long.

Just hugs and understanding.



"We are stardust..."

Absolutely tortuous disease. The mental anguish, terror, and psychic pain experienced by the sufferer is beyond comprehension. Loved ones are helpless to alleviate the cruel psychotic delusions that torment the sufferer. On a visit to my house, my dad had a psychotic episode, injured my mother, and brandished a fire poker at family members; I repaired the wall that he struck. He finally went into a care home when my mom could no longer care for him. As he declined in that care home, I had trouble driving to work because, alone in the car, I would sob. What you wished for was your Mom's release from a living hell, even knowing that her departure would leave you grieving. She is no longer suffering. She is no longer in pain or afraid. And Glamrock, no one, not your late mom, not me, not your DU community, wants you to continue suffering. You could not alleviate her pain, but please take steps to alleviate the pain you now carry. I drowned out crushing thoughts by listening to library audio books, not 'War and Peace', but stupid stuff with no emotional content that could disturb my mind. Now, a decade later, I can call up the fond memories of my dad, from before those terrible times. I hope you too find some avenue of relief. Please take care.

It has been almost 2 years since my mother died and I was having a rough night tonight and then read your post which brought me back to those last days. I took care of her full time in my home on my own while raising my son for 6 years post her stroke. Her last night before her last hospitalization, I turned away while retrieving her hoyer lift and she fell from the side of her home hospital bed. That wasn’t the beginning of the end as her dysphasia had dramatically increased over the past month but that last fall landed her in the hospital for the very last time. I stayed with her for 7 days, racing home every few days to shower and go back. I stayed by her side, talked and sang to her and layed by her side until she died a week later. I am no longer catholic at all yet recited the Hail Mary/Our father and other prayers to her in the hope of easing her death. It has wrecked me and fucked my life for the past two years and I am still recovering but being by her side was the best decision and only decision I could have made.
Brutal is the most accurate word to describe all this and I am so sorry you are going through it. Your last paragraph resonates to my core: “this is the hardest thing I have ever been through and it sucks. But I’ll be goddamned if she’ll go alone. But fuck me, this is brutal.” You have tried the best you know to help her as her disease progressed - but she will not be alone and this, I think, is the very most that any of us can wish for… to not be alone as we are dying. You are stepping up and holding her at the most vulnerable time in her life.
Thinking of you and your mom and sending much strength and hugs.

I will be thinking of you.

✨✨✨

I SO know what you must be going through.

You have my sympathies, and they don’t help for shit, so I just hope you are spared the guilt when the ordeal is over.

that I just moved to take another job when my mom passed. Please take care of yourself.

I am so sorry

much longer. I am torn because I feel I should be sadder but I am relieved. He is suffering. She has been ready to die for a while.
Sometimes the hardest thing is to not feel grief when a loved one passes. I want them to be out of their misery. I really lost them a while ago, as they gradually lost their faculties, were less and less able to converse or have any quality of life.
There was never a moment to feel grief. To process what was happening. We lost them so gradually until their meer presence was a discomfort for us and for them.
I spent every visit in my dad's last days talking about his life. I learned so much I had never known. He wanted to go over everything. He wrote it all out until he couldn't write anymore. But more and more he couldn't hear, he couldn't understand, he wasn't the man I had known.
I printed all the old photos I could find of their amazing lives and hung them around their assisted living apartment. Young vibrant people in love. A beautiful wedding. Dad in his office with colleages in the prime of his career.

But in their time of passsing I'm at a loss. I can't be there as much as I should. My own life will collapse if I drop everything and go where they are. If I do, I will not be able to relieve their suffering. Is it enough to call or zoom my mother every day? Meanwhile I wonder if none of this matters, my life or theirs--whether I should let it all go to hell and be in Pennsylvania for a week knocking on doors.

Glamrock, you have done so much. I am impressed. you have gone above and beyond. Know this. You have been there for your parents. You have no reason to feel guilt, even if the Universe has made it very hard. Let yourself feel grief--that is necessary--a blessing even--but don't let that make you wrong.

The hardest thing for me has been wishing for my parents' deaths. Not being able to mourn their passing. i have mourned the loss of their faculties but it's not the same. That is so gradual. It is an ongoing challenge of meeting their needs. There isn't one moment to grieve. i miss who they were, I want to spare them pain.

i am not an atheist, formerly an agnostic, and now tentatively believing in God or some form of afterlife. It's hard to rely on this when you (I) haven't been raised to believe. I'm no evangelical, don't want to press my budding beliefs on you, but I do take comfort in believing our loved ones are not destined for oblivion but for another dimension in which their failing bodies will not matter and they will experience peace and joy. There are so many stories of near-death experiences giving evidence of this. It is a comfort to me that i believe my Dad isn't disappearing but about to join pure positive energy and be his true self again, ready for the next cosmic choice. i hope you will find whatever belief gives you comfort, but regardless give yourself a pat on the back for all you have done.

much longer. I am torn because I feel I should be sadder but I am relieved. He is suffering. She has been ready to die for a while.
Sometimes the hardest thing is to not feel grief when a loved one passesI want them to be out of their misery. I really lost them a while ago, as they gradually lost their faculties, were less and less able to converse or have any quality of life.
There was never a moment to feel grief. To process what was happening. We lost them so gradually until their meer presence was a discomfort for us and for them.
I spent every visit in my dad's last days talking about his life. I learned so much I had never known. He wanted to go over everything. He wrote it all out until he couldn't write anymore. But more and more he couldn't hear, he couldn't understand, he wasn't the man I had known.
I printed all the old photos I could find of their amazing lives and hung them around their assisted living apartment. Young vibrant people in love. A beautiful wedding. Dad in his office with colleages in the prime of his career.

But in their time of passsing I'm at a loss. I can't be there as much as I should. My own life will collapse if I drop everything and go where they are. If I do, I will not be able to relieve their suffering. Is it enough to call or zoom my mother every day? Meanwhile I wonder if none of this matters, my life or theirs--whether I should let it all go to hell and be in Pennsylvania for a week knocking on doors.

Glamrock, you have done so much. I am impressed. you have gone above and beyond. Know this. You have been there for your parents. You have no reason to feel guilt, even if the Universe has made it very hard. Let yourself feel grief--that is necessary--a blessing even--but don't let that make you wrong.

The hardest thing for me has been wishing for my parents' deaths. Not being able to mourn their passing. i have mourned the loss of their faculties but it's not the same. That is so gradual. It is an ongoing challenge of meeting their needs. There isn't one moment to grieve. i miss who they were, I want to spare them pain.

i am not an atheist, formerly an agnostic, and now tentatively believing in God or some form of afterlife. It's hard to rely on this when you (I) haven't been raised to believe. I'm no evangelical, don't want to press my budding beliefs on you, but I do take comfort in believing our loved ones are not destined for oblivion but for another dimension in which their failing bodies will not matter and they will experience peace and joy. There are so many stories of near-death experiences giving evidence of this. It is a comfort to me that i believe my Dad isn't disappearing but about to join pure positive energy and be his true self again, ready for the next cosmic choice. i hope you will find whatever belief gives you comfort, but regardless give yourself a pat on the back for all you have done.

and could use help on how to delete repeat post

Sending you hugs of support. We are with you on this journey.

at age 91. He was in a skilled nursing facility, confined to a wheelchair,and had lost ability to read, change channels on TV, push the button to play the radio or a CD, and needed help feeding himself. He had developed a postoperative dementia after a hernia repair two years earlier, shortly before my mother died. I moved him across the country from California --where there was no more family --to North Carolina where I live. So, no friends to visit him here.
He had signed an advance directive, which included his right to refuse a feeding tube, and when the nursing facility called me to ask to put one in, I told them 'no'. It was the one thing he could control. I happened to be out of town with my husband for him to attend a medical conference. I flew home immediately. He became comatose before I got home.
I sat by his bed and read to him, talked to him, shared memories of growing up with him for two days. Went home to fix dinner for my sons and to rest a bit before heading to the airport to pick up my husband to take him with me to see my dad again. I got a call from the facility to come quickly. He had regained consciousness. In the 20 minutes it took for me to get there, he passed. He was not alone and even though he couldn't respond in the days I'd sat with him, I believe he knew I was there.
Lewy body dementia is horrible. My husband --an MD--was followed by a neurologist well known in the field for it as a possible diagnosis for two years. It can really only be diagnosed on autopsy, but a probable diagnosis can be made based on observations. It is hard to diagnose in early stages. Robin Williams had it. When my husband was given the probable diagnosis, he refused to accept it. I had tried to get him to agree to buying a place on Bonaire, which is Dutch, and has legal medically assisted suicide. He refused, because he would not accept the diagnosis. He had all the symptoms, and there were mornings when he'd sleep so late that I hoped I would find that he'd passed during the night. I could no longer share a bed because of his violent acting out of dreams. He would strike out--he did hit me a couple of times --broke the bedside lamp, threw himself out of bed, would sleep walk, and have no memory of any of it. He eventually did kill himself six years ago in the retirement home where he was living. We were separated and one of my sons was looking after him.

It's really hard not to feel guilty. To think you could or should do more. But you can't. It's a horrible disease and it's not wrong to wish for your mom to be freed from it. She will become comatose soon--without food or water-- and probably not last much longer.
Take care of yourself. I wish you peace as you spend these last few days with your mom.

My mom died at the end of July. She lived with us for a year and a half before we had to place her in a facility. I wished for her release more times than I can count. She is done with the fear and anxiety now, and I’m glad for that.

Mom finally passed at age 96. She had lost her ability to walk and was blind. Unfortunately, her mind was still sharp. She was in assisted living, then fell and broke her hip. I drove to Florida to see her, but she didn't know me. I stayed 9 days and had to go back to work. My sister called that she had died when I was about 30 miles from home. I never shed a tear as I believe my prayers were answered. But the guilt remains.

Hugs to you.

If I were your mom, I would be so proud and grateful for you.

I'm just an old lady, who is preparing mentally for my own demise somewhere down the road. I think your mom's essence may have already left this place. Even though you aren't religious, I took the liberty to pray for you both.

Praying her passing is peaceful and peace for you, too.

I'm so sorry you and your Mom are going through this right now. Years ago, I had to sign paperwork for my elderly mom to withhold life prolonging care (which she wanted and signed in her living will). But I felt horrible doing that. You're not alone. Know you are loved and your Mom is loved.

You are exhausted and have been working to do your best for her. While caring for my sister I thought the effort would kill me first. Do not doubt your strong efforts to give your mother your best. Remember that you tried your hardest to keep her safe. It is normal to doubt everything you did but remind yourself that you did your best to keep her safe. Always remember that. My heart goes out to both of you. Love to all. 💗💗🙏🏼

I could relate a similar story of my sister & me with our mom. I totally TOTALLY get where you’re at right now. Don’t beat yourself up because you want her to be at peace!

Life just really sucks sometimes. And yes it does make you question what kind of god would put anyone through such misery. You must be going through the roof right now!

We are all thinking about you and hope she is at peace very soon. Try to be kind to yourself. You’ll get through this.

Here’s a hug anyways for what little comfort it probably is.

It is hard.

My family went through that for over ten years with my mom and it was Covid that took her on the very last day of 2020. There is a bit of a tale similar to yours in each of my and my siblings' experience with it.

As it was, one of my younger two siblings was assigned executor of her estate and the other was a major player in mom's daily life. Mom lived with her partner until the last year, the separation hastened her decline along with Covid restrictions and her not understanding why she was alone in a facility and couldn't go anywhere, nobody could visit. My siblings did everything they could for her, I was their counsel. The executor was always driven by a premonition of mom passing alone in a facility that was a haunting issue in the last couple years and it was very psychologically and emotionally taxing for both siblings. Yet through the last days we knew she would die from Covid and we were terrified about it too, but we all had wished she would pass easily in her sleep to end her suffering. It is not a crime or a sin to wish someone stop suffering. We shared many discussions about it.

Death is part of life, none of us escape it. It is in the way we live our lives with passion and conviction that matters in the end. What we left with those who survive us... the real substance of life, it's only the physical that actually leaves us. You can let her body go, she's done with it and, yes, it is a merciful desire to wish her peace after all.

This is the hard part but you'll get through it. Be comforted in knowing you did what you could for her and that, respecting her life, is all you can do for her. We had this discussion a few years ago, you are doing the right things, you can take comfort in knowing that you did give a shit and took the issue by the horns and lead it to its natural conclusion. It's more of a physical thing if she's not lucid anymore.

You have done well, Grasshopper, take the positive energy from knowing this and apply it to the next thing that needs your attention as you move forward. The goal should be to take better care of yourself for now, you deserve it.

My mom was so frustrated for her. My family has strict dnr orders from me. It may or may not help. There is nothing wrong with wanting a loved one out of pain and at peace. it has always clear to those of us the that your wife and your mom mean everything to you. I hope your mom has some peace in her future. Hugs to you and your family.

my heart goes out to you.. and, please, don't load yourself up with guilt. I know it's easy to say but not easy to do but you must.

Much love to you Glamrock!

Please be kind and gentle with yourself. It is difficult, under the best of circumstances, when our elderly parents begin to decline.

And please remember someone is always on DU if you need to chat with someone.

You have done all that you can do. May she pass peacefully.

In fact, your story brings horrific memories rushing back. It was not Lewy Body, but vascular dementia in my Mom's case, but she was with me 5 years after Dad died. I quit my good job with the VA to care for her. But it got so bad, I finally had to find a memory care because she was a danger to herself in my home, and I was not equipped or trained to deal with the horrors. It was the grief of daily loss, but also my inability to make things better. No matter how hard I tried, I had to face the reality that it would never get better. As you said, it was the hardest thing I ever had to do.

She broke her hip fighting with caregivers just 3 weeks after she got to the memory care facility. After hip surgery she did not wake up. It was terrible, and a merciful blessing all at once.

My heart goes out to you and Mrs. Glam. ❤️

Wishing your mom a peaceful passing.

I hope you have access to music, it always changes the mood. You are doing everything humanly possible to care for your mother. Wherever her true essence resides she has nothing but Love for you.

It will be hard staying to the end but will be a great tribute as a son.

My father passed from liver cancer in 2012.
Was at the VA for over a week in a coma.

He smoked air cigarettes and drank air beer for 3 days straight. On the last morning he actually squeezed my hand and then minutes later I watched as he breathed his last breaths. Ever.

It’s fucking hard
Feel ya

Wishing you peace and every good.

Who would want to watch someone they love in pain, or in decline or dementia? Maybe some religious fanatic who believes the doctrine that there is dignity in suffering. But I’d bet even those zealots whisper a quick prayer of thanks when Grandma’s Battle With Cancer is over at last.

The diabetes was taking him apart. He was a diligent diabetic but it got out of control anyway.
Surgery after surgery, and the next step was taking parts off one at a time.
He was too young to die, but I did think it might be better for him if he just died while in one piece.
Then, he died.
I actually never regretted thinking what I thought. I think it would have been worse if he hung on and list a foot, then another leg, the something else. That would have killed his psyche.
So, I empathize and have zero judgment about the thoughts you had.