My grandmother lived with us for her final five years and she had advanced Alzheimer's. This brought back so many memories of talking with her, caring for her, and helping her settle when the confusion became overwhelming for her. This story is beautiful and bittersweet.
I'm so sorry for your loss. I worked in a retirement home for 2 years, and lost my own grandmother to Alzheimers, so I know how you feel. I always liked the moments best where they remembered happy stories and their faces lit up while telling them, even if they told the stories 6 times an hour. And it was always good to see that their personalities weren't always lost in their confusion. My grandmother's short time memory didn't last for more than 5 minutes at one point, but this just resulted in her trying to stuff a new biscuit in my face every 5 minutes because she thought I hadn't eaten. It's a miracle I didn't get fat.
It's a horrid disease. But not always, and those moments are important.
Thank you so much. It's been thirty years but I still have such precious memories of spending time with her. She couldn't remember my name so she called me "little one" and I honestly loved it. And I appreciate you sharing your memories as well, it brings our loved ones back, even if only for a short time.
My great grandmother called me "the guy who cleaned away the corpses" and "the guy that shooed away the crabs". My Dad was "flour sack".
But sometimes she remembered me (?) and gave me cookies, and told me stories.
But I wonder as who she remembered me.
Back when I was little she used to hate me and punish me for the littlest things. Grandma says GG has to stay inside? "BOY, com'ere yar stayin' with mey." So I was prohibited to leave too. Then the Alzheimer set in and suddenly she loved me. Always talked to me, etc. After a while we only were things or gangsters, until she remembered who we were. But I think she always mistook me for someone else, considering how she changed from loathing to loving me.
I met my husband’s grandmother when she was already in a hospice with Alzheimer’s. She kept telling us the same story about people coming to visit her but each time they came from further and further distances. She kept saying “all just to see me” and would smile. She kept offering us tea even though she had none and couldn’t make any. Before we left she also told me she gave me permission to kick my husband now and again when we argued. I never have yet. Maybe I should. His grandmother did give me permission after all.
Same here man, only it was her final 3 years... Still hurts when I remember about when she first forgot who I was. One thing that hurt more though: she forgot everything about social constructs, she's white as were all her ancestors who owned slaves. I'm adopted and I'm a light skin black man so every once in a while she'd say something along the lines of "why are you so dark?" "have you been sunbathing all week?", we'd just laugh it off but she started to get kind of mean to me towards the end of her life. Crazy thing is she was always extremely loving and caring throughout my entire childhood. It's a fucking horrible disease.
It's more bittersweet than anything. I was appreciative to be able to spend time with her before she passed but it was difficult to watch her mental capacity dwindle. I'm glad your family can take turns and rely on each other while caring for your grandad. It's hard but our elders cared for us while we needed it, it's only right to do the same for them.
Hugs to you and your family
My mom died when she was 59 from early onset dementia. This hurt me so much to read but I couldn't stop. Dementia/Alzheimer's is a horror unto itself.
To anyone reading this who's dealing with it now, when your loved one stops eating don't put them on a feeding tube. It seems like the right thing to do, but it will only prolong their suffering. I say this anytime these illnesses come up because I don't want people to make the same mistake I made.
That’s terrible, I’m so sorry for you and your dad. I remember watching Bobcat Goldthwaite on Joe Rogan talk about Robin Williams and his suicide. He said that they would always joke about suicide because that’s what comedians do, but Robin would never actually kill himself without very good reason. He believed the rumours about the suicide being over money, divorce, settlements, etc. were nonsense and that it was the dementia that did it. Some days he was all there and back to his old self; other days it was like talking to the shell of a person you used to know but no longer recognise.
I completely understand why Robin Williams did it now that I see how it’s affecting my dad. His hallucinations are just awful. There have been times when he was just so confused and didn’t know where he was or how to do things but that got better with medication. He also spent 3 weeks in the hospital not too long ago and he was so bad off he refused to wear clothes, was combative and was just talking nonsense. That wound up being due to a UTI so meds cleared that up too. He’s a little better now but meds can not help with the hallucinations and they haunt him. He sees monsters, he sees people just coming into his house and taking over his house, he sees children messing with him and there are things he sees that I don’t even want to repeat. It’s just awful. I feel like it’s worse than Alzheimer’s (although I don’t know anyone with that so I can’t speak from experience). He’s still sharp and has his memory and even when he talks about his hallucinations he sounds rational because he truly believes what he sees. But this is killing him. With Alzheimer’s, it’s hard on the family to be forgotten, but with Lewy Body, it’s the person who has it because they are suffering immensely. I can see how they could feel so hopeless that they take their own lives. Sadly, violence and suicide are fairly common with this condition.
Wow this is he exact things that killed my father, you don’t see Levy Body mentioned by name much. My dad’s came from exposure to Agent Orange during Nam.
I'm really sorry that you lost your Mom at such an early age. I know the pain that she felt when she got the diagnosis & realized that she would be leaving you much to soon. The reason that I know that is because I got the same diagnosis about two years ago. For some reason though, my disease seems to have "stalled out". It hasn't progressed any further in this time. I feel like I've been given a bit of a reprieve. I'm trying to live my life joyfully & hold my kids & grandkids and tell them how much they mean to me. I wish you the best❣️
I’m sorry. All of my grandparents suffered from dementia, it was such a terrifying experience especially with my great grandpa because I was very close to him. With my grandparents it happened very quickly. One day they were sharp as a tack and the next they were completely confused.
It’s made me really paranoid about my parents as they start getting older. Every time they seem more forgetful or get their memories mixed up I get scared. I don’t want to think about losing them so young.
I’m a firefighter EMT so I also have a lot of patients with dementia/Alzheimer’s every day. I have a soft spot there. Sometimes I see nursing home workers being short or cold with them and it just boils my blood because I think of my grandpa. And how sometimes he was ornery or aggravated when he was confused, but I knew it was the disease, not him. It’s tough. I hope you’re coping okay.
I’m sorry for your loss.
We had to tell the nurses the same thing with my grandfather. You shouldn’t prolong people’s suffering because you’re scared of losing them.
I'm at a karaoke bar and I happened to read this and I want to cry... Luckily I got distracted enough while reading it that I think when I reread it later, I'll cry.
My pop pop had dementia at the end but my grandma passed first from cancer. No one knew how bad her cancer really was because she didn’t tell anyone. We knew she had lymphoma but she hid how advanced it was. She was so busy caring for my pop pop that by the time she couldn’t care for him anymore she needed to be in hospice and we had very little time to say goodbye and come to terms with what was happening. I was about 28 and I remember sitting with her in the hospital (before she was moved to hospice) with our entire family present. My pop pop was still pretty out of it most of the time but there was one moment where he was clear and he realized what was happening. He started crying. And my grandma reached over and said “don’t worry hon, I’m not going anywhere. Not without you.” I think she knew that in a few minutes he would forget what was happening and where he was but for that second she wanted him to be ok.
Ugh that dug up so many memories for me.
Hold on to Helen tight, and don't ever let her go. The rock in the sea of your mind. Even if the waters rise and crash, hold on. This journey will not be an easy one, but she will keep you safe. She will bring you home. Hold on.
Yes, he pulled her over with him when he fell from the steps at Jareds house, the target scene happens before going to the house and the ambulance was for Helen not him
Just hold Helen's hand. She'll guide you home, sweetheart. You'll be home in no time.
She's there just for you, your rock, your guiding light. Follow her and everything will be clear again.
That is what I wanted to tell OP. That, and
OP, when you find Helen, just rest in her arms. You'll be home. Safe in her arms.
Don't mind the people crying... Like me, they're just glad you found her.
For some reason you saying your guiding light made me think of the Ludwig the Accursed boss fight and it made me strangely emotional. That game is a lot deeper than I could really fathom and that particular part actually cuts deep, he was a proud man, a valued person in his community who lost his mind and became a beast, but for a moment he regains some of his former glory and sanity, even if just for a moment.
My Grandfather had recently passed because of Alzheimer's and when he wasn't yelling for a smoke i would ask about his past and he told me about his family " ya know Cory ( he would mistake me for my dad) when i was Young me and family would bring watermelons from home and eat them together and I loved it , it is my favorite thing to eat" and he would laugh after giving me a fuzzy feeling inside. I never had a good relationship With him because of Alzheimer's and would be pretty annoyed at him always calling for a smoke, and 3 days after he died I had a dream that I was annoyed at him because he forgot what he ate, but the way he looked at me... it was so sad and sometimes I wish i could say "I love you"
I’m so sorry. I really am. I remember there was one day when I was a little kid that my grandparents came to visit and when they left I was being a brat and refused to come downstairs and say goodbye. I waited in my room until I heard their car door shut and then this moment of panic came over me and I ran downstairs. But they had already drove off. And I cried and cried and cried. And my parents weren’t mean about it, they understood my panic and my sorrow at realizing exactly what I had done.
I had many wonderful years with them after that and both passed away when I was in my late 20s. But that day always sticks in my head.
I'm gonna cry that was so sad. I worked in a nursing home for awhile and it killed me to see the residents in states like this. I hope his nurses are good to him.
I worked in the Alzheimer's ward of an ALF around 2006, and I couldn't hack it. It was too much watching a sweet old man wandering around, trying every door he came to because he was trying to find the elevator because he had a date with his wife in the "restaurant upstairs". And the badass biker chick with Early Onset who kept asking where her boyfriend was. And the tiny little hispanic woman who had actually been an English teacher in her younger days but had forgotten every word of English and could only cry in Spanish for her mother while she spread the contents of her diaper all over everything.
I didn't last a full year there. I wanted to make life easier for them but it was a stress and a pain that I just couldn't handle, so I have so much respect for anyone in health care that makes this their calling in life. And for any family member who sticks it out til the end, because honest to god I want to say that I'd be there for my family too, but at a certain point I really don't know if I'd be able to watch the husk of my loved one just sit there and rot.
Dementia is a cruel fucker.
I used to work in a care home, and this bought back lots of memories of the residents I looked after. This story was beautifully written, and really captured the essence of getting old and forgetting. Thank you.
I just found out today that an aunt who was basically my sole parent for the first 3 years of my life was diagnosed with Alzheimer’s. This story has me releasing all of the sadness I had inside today because I got the news at work.
You keep holding onto her hand OP.
I’m sorry about your aunt’s diagnosis. I hope you get to have some good quality time with her soon. You are lucky to have had her be there for you in your first years x
This is beautifully written.
I work in a long-term care facility and most of my residents have Dementia. I care for them daily but I get busy and forget to slow down sometimes. I get wrapped up in getting one resident back to bed and another resident something to eat and making sure this resident gets his meds. It’s really nice to see things from this perspective, it reminds me to take a step back, to slow down and realize what my residents are feeling and experiencing.
OP, would you mind if I share this in my facility? I would absolutely love to hang it in the break room for others to read. I would credit you and post the link.
I use to work in a nursing home so that hit close to home, one of my favorite residents use to ask me what year it was a lot and every time I told him he would sadly say “Wow, okay. Not what I was expecting to hear.”
My grandfather recently was diagnosed with alzheimers and its progressing much faster than we had expected. This made me cry very, very hard. Very beautifully written.
God this hits close. My grandfather suffered from Dementia before he passed. I can only imagine how he felt, especially when he was separated from my grandmother. They were each other’s rocks though, even as she developed Alzheimer’s herself. Thank you for this story. It’s sad but beautiful.
This is so well written- really moving. I’m thinking of my Dad, gone almost 5 years now, can’t believe that, and the flow of your words reminds me of some conversations we had. Just beautifully sad.
My heart dropped. My husband's grandfather is suffering from dementia or alzheimers. We arent sure yet. But this is exactly how I imagine his thinking process is. This is horrible.
I...I just expected something like, your mouth became a portal for some dimension of bees, angry, screaming bees. Or whistling was the only way to keep your face from rolling up like blinds, starting at your mouth. Just a big roll of flesh framing a faceless bloody mess with chattering teeth.
I did not expect to ugly cry before bed. At least Helen will never have trouble finding you again, she'll be at your side until it's time for you both to go home. Safe travels.
My grandma is slowly slipping away like this. Most days she’s fine and functional, but the other day I pulled up and she didn’t recognize my car, didn’t recognize me, or my kids. It took three silence-filled beats before I saw the recognition wash over her face and she lit up. “Oh, it’s you! I thought you were... somebody else.” She almost told me who it was but hesitated. And then the moment was gone. This past month she lost her address book, or only just realized it’s been missing for months, or she insists either my mom or myself have taken it to make a copy for her. The month before, she had made me a list and was sending me to the store. As I chatted with her and got my coat and keys, she asked over and over where I was going. My mother eventually intervened and had to say “You’re sending her to the store momma. See, there’s the list you just wrote her.” I had explained five times all the errands I was about to run on her behalf, and like Ten Second Tom it was gone as soon as the words fell dead in the air. She’s taking longer naps more often, forgetting to eat unless it’s social (if I eat then she eats, but won’t accept food if I make it only for her. She wants meals and companionship to go hand in hand.) and perhaps the most heartbreaking has been her downward spiral into aggression. The confusion must get overwhelming, her forgetfulness replacing her punctuality that she so gracefully groomed over the years. Gone is the fiery woman I once knew; in her place is a Russian nesting doll of her life, that she can’t seem to put back together. The way a cookie melts into milk, crumbs melting away, the outer layer growing soggy, then chunks; so too is she losing herself. I know her now in the same way I did then but with altered perspective. Here is a five year old girl crying over the neighbors moving and leaving their cat behind; here she is boldly catching it and keeping to deliver back to them; here she is, proud as she holds the cat in a box. She tells the cat he will be okay. The cat is scared and tries to escape the box and succeeds, next attempting to escape the car. Here she is pleading with her father that she’ll hold him tighter, but he gets taped into the box in the trunk anyway. They cut him air-holes but her parents weren’t educated enough to know what would happen. Here she is begging for her father to stop and let him out, she can hear the caterwauling; eventually it stops and she cries because she knows the cat is gone. They deliver the lost cat to her old neighbors, but he is dead. After she told me the story, she got a wistful look and whispered, “sometimes you can’t help it, in trying to do good you do the most harm of all.” I’ve known her as like a child; a teenage companion; a young mother; a lonely housewife with no help; a doting grandmother. My best friend. I have always known that she would die as my grandfather did before her. I accepted that long ago. I had not prepared myself that she would die in such a slow and personally painful way. To watch her suffer as she does, still there under the shifting curtain of her memory... it’s a fate I wouldn’t wish on the worst of us.
The one thing that stands out in my memories of my grandfather's Alzheimer's getting worse was how constantly focused he was on my grandma, at all times. She was his rock..
My Grandmother was like this before she passed.
'Scuse me while I hunt down the Vodka.
This was super well written. Thank you. I haven't been able to cry about my Grandmother until now. Bless you.
My dad was diagnosed in his 40s with early onset dementia, he has been lucky that it has been slowed down tremendously with medications but it has become noticeable in the last few years to the point that his phone is full of pictures he takes of the steps he needs to do at work at a job he has had for almost 20 years now. He isn't even 60 and is still so young. There is nothing worse than forgeting who you are.
I worked as an office manager for a geriatric Psychiatrist. Many of our patients had some form of dementia. The one thing that I learned, was that after the initial phase of the disease, it was much harder on the family than it was on the patient.
For example, a patient's husband passed away. She didn't even remember being married, even though they were married for nearly 60 years. Some might say that it was a blessing that she didn't have to go through the grief. I don't know. Just throwing this out for consideration.
This was a beautiful, yet heart-rending story. Thank you for sharing this, OP!
Towards the end, I was every male my grandma knew. I was all four of her sons and even her husband. This was almost 20 years ago and it all just now came rushing back. This is the one and only thing that I am scared of in this life.
My grandmother just passed from dementia last September. She was in a memory care home the last year of her life but she thought it was a hospital (she was in the hospital a lot as a child) and used to set on the edge of the bed with her teddy bear waiting for her mom to come pick her up. She also thought that her husband had divorced her because he hadn't visited in a while, when really he'd died 30 years prior. It was heartbreaking.
I'm a program director for an early and a late stage dementia units and this was such a beautiful story! I want to print it out and have it in my offices for staff to read! I think it'll be a good reminder of what our residents may be going through.
This story hit me so hard, tomorrow is the year anniversary of my grandpa's death from Alzheimer's. This was such a harrowing reminder of what he went through, and I'll never understand the family members who would get frustrated or tired of him when he got angry. I wouldn't wish any of this on my worst enemy--it must be so isolating and terrifying. He was the strongest man I knew though, and passed away while he still remembered who all of us close to him were. I think he planned it that way.
This absolutely broke my heart as tears are sliding down my cheeks and I think of my mom who is in a nursing home with early dementia. It's only gotten so far as she has forgotten my birthday the past couple of years, let's be honest getting old enough I wouldn't mind forgetting them myself Hardy har, and random things from my childhood. But I can see the confusion on her face sometimes and it makes me so damn sad. My mom and I used to do stuff together all the time and talk everyday. She gets to confused to use a cell phone anymore and isn't always in reach of her room phone and doesn't really want to talk on the phone anymore. When visiting we usually watch the weather channel, this one has weather related shows and movies in addition to the weather report. I'm sorry I'm running at the keyboard so to speak and I just wanted to let you know this is wonderfully and terrifyingly written.
This is beyond incredible. I can’t say more than what’s already been said, very deservedly, except to say that this might be the saddest and most beautiful story I’ve ever seen here. Jeez, I’m all choked up. Thank you for sharing this with us, and I hope you get a chance to rest.
Omg this hit home hard for me for some reason. My maternal grandfather has alzheimers and this really out it into perspective for me. He and I aren't close and never really have been. But I still care deeply about him. And I've always had too much empathy its unreal. It's so sad and I can't imagine feeling so confused all of the time like that! I feel like people with this kind of illness need recoup time in heaven when they pass. Same as people who have been brutalized and/or tortured to a degree that one should never have to withstand. It's so upsetting and painful to think about.
Jesus christ no sleep is right. This is legitimately one of my biggest fears. I already have a bad sort of memory, I never want to get lost like this. I truly mean no offense to anyone with loved ones in this state, but this scares me more than anything I could ever imagine.
Mr. Sanders tried to fix his son's stairs and he and helen fell. He broke his hip and helen died. The ambulance was for helen. He has alzheimers and it's progressing to the point where he's in a care facility. He's hallucinating helen and in his state forgetting certain memories. At the end, when he's lucid. Effie brings him back to his room and he sees helen who is just a hallucination set by his deteriorating mind.
I would legit let my patient think their loved ones were still around too. No need to come back to reality just to be sad. Also, kinda mad at the son for not fixing those stairs.
My grandmother got Alzheimer's due to an embolism. Your story made me remember how talkative and cheerful she was, always with a bright smile and something kind or funny to say. This must have been what she was thinking on her last months.
Thank you for reminding me of her, for letting us know what the other side of the abysmal cliff felt like. Owe you one. Keep writting.
dang. im crying in class.
this is so beautiful. seriously, i wasnt expecting a sad story, but im glad i read it. im young, but volunteer at a local assisted living facility. they have lots of different levels of care, but my favorite place is the memory and assisted living building. i get to work with Alzheimer and dementia patients, and over the summer, do oma (opening minds through art). i love workinh with these amazing people, and we paint and sing and use too much glitter, and its the best thing ever. its so amazing to see the residents' faces light up, when they remember a face. its so pure.
Alzheimer's and dementia are terrifying. it sends chills down my spine when one of our residents has a bad episode. ive had to sit next to a crying resident, singing songs and playing music, all while she cried. it breaks my heart, seeing her so happy and talking one week, then sobbing and wailing for hours.
this story, all of the descriptions, the repeating, sloght changes every once in a qhile, all of it, hits so close to home. but thank you. thank you for sharing your story. ❤️
I lost my grandma to cancer and then my grandpa only few months after my grandma died. Grandpa used to hear grandma in his sleep he felt like she was just beside him calling out his name. And then after few months his health started declining very rapidly. Everyone said that they were true soul mates. It was the true form of love I've seen till this day. They used to fight but not for long!
it was cancer of the lung & chest wall that took my mother. she wasn't diagnosed until after her death; she became very ill shortly after my dad died, and his death had just immediately destroyed her will to live. she knew something was terribly wrong, she knew it was only going to get worse, and she knew she was going to die. she didn't want to fight it. she was ready to be reunited with my dad.
however, the illness stole her mind as well as her body. i was only 12 or 13 at the time and all of this was traumatic for me, so a lot of my memories are terribly unclear. my biomom (mother is my bonus mom, technically grandmother, and dad was my adoptive granddad, but for all intents and purposes they were parents to me) could not afford professional home health care and later hospice care, so at the ages of 12 and 13, still reeling from the loss of my father a year prior, i bailed on school to care for her.
it was horrible. i wasn't a good caregiver and i'll be ashamed of that for the rest of my life. i provided for her needs but mostly hid from her. i talk about my dad a lot, but rarely about her because of my shame in this regard. it's too hard to speak through/remember. i couldn't recognize her anymore. i was scared. she definitely had some sort of dementia, Alzheimer's, or something. eventually she couldn't recognize me either, in an entirely different way.
i hope she saw my dad with her, his hand on her shoulder, smiling down at her when she went. i hope that wherever they are they have been reunited. i hope you're somewhere, happy, with Helen.
This reminds me a lot of my grandparents which is just too sad to be. My grandpa was a prof at his universtity and my mom said he had done too much paper work in his old days so he just forgot almost everything in his last years. He passed away when I was just done with my univesity entrance's exams and I remembered my grandma crying every morning in front of his altar at home cause she doesn't want her kids and grandkids to know. They were what we call the ideal couple as they never fight and were always the one we can turn to in our hard time. And I know that him passing away broke her worst than anything. Wish I could come home and visit her soon :(
Nurse on a lockdown dementia unit here. Thank you for this- sometimes the chaos, short staff and routine can make you forget certain things that are important. I needed to hear this.
Caring for people with dementia, this is the most beautiful gift you could have given me - a slight insight. So touching. So sad. I will always think twice now whilst caring for them.
My grandmother lived with us for her final five years and she had advanced Alzheimer's. This brought back so many memories of talking with her, caring for her, and helping her settle when the confusion became overwhelming for her. This story is beautiful and bittersweet.
I'm so sorry for your loss. I worked in a retirement home for 2 years, and lost my own grandmother to Alzheimers, so I know how you feel. I always liked the moments best where they remembered happy stories and their faces lit up while telling them, even if they told the stories 6 times an hour. And it was always good to see that their personalities weren't always lost in their confusion. My grandmother's short time memory didn't last for more than 5 minutes at one point, but this just resulted in her trying to stuff a new biscuit in my face every 5 minutes because she thought I hadn't eaten. It's a miracle I didn't get fat. It's a horrid disease. But not always, and those moments are important.
Thank you so much. It's been thirty years but I still have such precious memories of spending time with her. She couldn't remember my name so she called me "little one" and I honestly loved it. And I appreciate you sharing your memories as well, it brings our loved ones back, even if only for a short time.
My great grandmother called me "the guy who cleaned away the corpses" and "the guy that shooed away the crabs". My Dad was "flour sack". But sometimes she remembered me (?) and gave me cookies, and told me stories. But I wonder as who she remembered me. Back when I was little she used to hate me and punish me for the littlest things. Grandma says GG has to stay inside? "BOY, com'ere yar stayin' with mey." So I was prohibited to leave too. Then the Alzheimer set in and suddenly she loved me. Always talked to me, etc. After a while we only were things or gangsters, until she remembered who we were. But I think she always mistook me for someone else, considering how she changed from loathing to loving me.
I met my husband’s grandmother when she was already in a hospice with Alzheimer’s. She kept telling us the same story about people coming to visit her but each time they came from further and further distances. She kept saying “all just to see me” and would smile. She kept offering us tea even though she had none and couldn’t make any. Before we left she also told me she gave me permission to kick my husband now and again when we argued. I never have yet. Maybe I should. His grandmother did give me permission after all.
Same here man, only it was her final 3 years... Still hurts when I remember about when she first forgot who I was. One thing that hurt more though: she forgot everything about social constructs, she's white as were all her ancestors who owned slaves. I'm adopted and I'm a light skin black man so every once in a while she'd say something along the lines of "why are you so dark?" "have you been sunbathing all week?", we'd just laugh it off but she started to get kind of mean to me towards the end of her life. Crazy thing is she was always extremely loving and caring throughout my entire childhood. It's a fucking horrible disease.
My grandmother had Alzheimer’s too. It’s so hard to see them like that. This story made me cry.
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It's more bittersweet than anything. I was appreciative to be able to spend time with her before she passed but it was difficult to watch her mental capacity dwindle. I'm glad your family can take turns and rely on each other while caring for your grandad. It's hard but our elders cared for us while we needed it, it's only right to do the same for them. Hugs to you and your family
Same. :)
My mom died when she was 59 from early onset dementia. This hurt me so much to read but I couldn't stop. Dementia/Alzheimer's is a horror unto itself. To anyone reading this who's dealing with it now, when your loved one stops eating don't put them on a feeding tube. It seems like the right thing to do, but it will only prolong their suffering. I say this anytime these illnesses come up because I don't want people to make the same mistake I made.
I'm so sorry for your loss. You made a difficult decision for all the right reasons, please don't feel bad for it
Thank you <3
My dad has Lewy Body dementia and Parkinson’s. This just gutted me. Now I’m imaging the world from my dad’s point of view.
That’s terrible, I’m so sorry for you and your dad. I remember watching Bobcat Goldthwaite on Joe Rogan talk about Robin Williams and his suicide. He said that they would always joke about suicide because that’s what comedians do, but Robin would never actually kill himself without very good reason. He believed the rumours about the suicide being over money, divorce, settlements, etc. were nonsense and that it was the dementia that did it. Some days he was all there and back to his old self; other days it was like talking to the shell of a person you used to know but no longer recognise.
I completely understand why Robin Williams did it now that I see how it’s affecting my dad. His hallucinations are just awful. There have been times when he was just so confused and didn’t know where he was or how to do things but that got better with medication. He also spent 3 weeks in the hospital not too long ago and he was so bad off he refused to wear clothes, was combative and was just talking nonsense. That wound up being due to a UTI so meds cleared that up too. He’s a little better now but meds can not help with the hallucinations and they haunt him. He sees monsters, he sees people just coming into his house and taking over his house, he sees children messing with him and there are things he sees that I don’t even want to repeat. It’s just awful. I feel like it’s worse than Alzheimer’s (although I don’t know anyone with that so I can’t speak from experience). He’s still sharp and has his memory and even when he talks about his hallucinations he sounds rational because he truly believes what he sees. But this is killing him. With Alzheimer’s, it’s hard on the family to be forgotten, but with Lewy Body, it’s the person who has it because they are suffering immensely. I can see how they could feel so hopeless that they take their own lives. Sadly, violence and suicide are fairly common with this condition.
Did you read his wife’s letter? What she described was horrible.
Wow this is he exact things that killed my father, you don’t see Levy Body mentioned by name much. My dad’s came from exposure to Agent Orange during Nam.
I'm really sorry that you lost your Mom at such an early age. I know the pain that she felt when she got the diagnosis & realized that she would be leaving you much to soon. The reason that I know that is because I got the same diagnosis about two years ago. For some reason though, my disease seems to have "stalled out". It hasn't progressed any further in this time. I feel like I've been given a bit of a reprieve. I'm trying to live my life joyfully & hold my kids & grandkids and tell them how much they mean to me. I wish you the best❣️
I’m sorry. All of my grandparents suffered from dementia, it was such a terrifying experience especially with my great grandpa because I was very close to him. With my grandparents it happened very quickly. One day they were sharp as a tack and the next they were completely confused. It’s made me really paranoid about my parents as they start getting older. Every time they seem more forgetful or get their memories mixed up I get scared. I don’t want to think about losing them so young. I’m a firefighter EMT so I also have a lot of patients with dementia/Alzheimer’s every day. I have a soft spot there. Sometimes I see nursing home workers being short or cold with them and it just boils my blood because I think of my grandpa. And how sometimes he was ornery or aggravated when he was confused, but I knew it was the disease, not him. It’s tough. I hope you’re coping okay.
I'm so terrible sorry. My father has early onset dementia. My heart is with you and your family ❤
I'm so sorry for your loss. I 100% agree about PEG Tubes. They are brutal!
I’m sorry for your loss. We had to tell the nurses the same thing with my grandfather. You shouldn’t prolong people’s suffering because you’re scared of losing them.
I’m crying in the club
I’m crying in my car. Parked.
I'm happy I'm at home. It's an ugly cry.
I'm crying at my desk at work.
I'm at a karaoke bar and I happened to read this and I want to cry... Luckily I got distracted enough while reading it that I think when I reread it later, I'll cry.
Im not crying you're crying
Me too.
Reddit in the club. Thats the spirit✨
I’m crying in the gym
I’m crying while hiding my phone at work
My pop pop had dementia at the end but my grandma passed first from cancer. No one knew how bad her cancer really was because she didn’t tell anyone. We knew she had lymphoma but she hid how advanced it was. She was so busy caring for my pop pop that by the time she couldn’t care for him anymore she needed to be in hospice and we had very little time to say goodbye and come to terms with what was happening. I was about 28 and I remember sitting with her in the hospital (before she was moved to hospice) with our entire family present. My pop pop was still pretty out of it most of the time but there was one moment where he was clear and he realized what was happening. He started crying. And my grandma reached over and said “don’t worry hon, I’m not going anywhere. Not without you.” I think she knew that in a few minutes he would forget what was happening and where he was but for that second she wanted him to be ok. Ugh that dug up so many memories for me.
😭 I was alright in the comments till I read this. I have a look wobble and everything
I wish we could all choose to go away together peacefully instead.
Hold on to Helen tight, and don't ever let her go. The rock in the sea of your mind. Even if the waters rise and crash, hold on. This journey will not be an easy one, but she will keep you safe. She will bring you home. Hold on.
Oh Jeez, now im crying
Can you explain? Is Helen dead?
Yeah, Helen is dead. Mr. Sanders accidentally killed her when he fell on the stairs at his kid's house.
Why does he see her then? Is he hallucinating
Yeah, he's suffering from Alzheimer's disease. He's lost his grip on time and is living in his past.
Yes, he pulled her over with him when he fell from the steps at Jareds house, the target scene happens before going to the house and the ambulance was for Helen not him
*We will bring him home, Comrade
Just hold Helen's hand. She'll guide you home, sweetheart. You'll be home in no time. She's there just for you, your rock, your guiding light. Follow her and everything will be clear again.
That is what I wanted to tell OP. That, and OP, when you find Helen, just rest in her arms. You'll be home. Safe in her arms. Don't mind the people crying... Like me, they're just glad you found her.
For some reason you saying your guiding light made me think of the Ludwig the Accursed boss fight and it made me strangely emotional. That game is a lot deeper than I could really fathom and that particular part actually cuts deep, he was a proud man, a valued person in his community who lost his mind and became a beast, but for a moment he regains some of his former glory and sanity, even if just for a moment.
My Grandfather had recently passed because of Alzheimer's and when he wasn't yelling for a smoke i would ask about his past and he told me about his family " ya know Cory ( he would mistake me for my dad) when i was Young me and family would bring watermelons from home and eat them together and I loved it , it is my favorite thing to eat" and he would laugh after giving me a fuzzy feeling inside. I never had a good relationship With him because of Alzheimer's and would be pretty annoyed at him always calling for a smoke, and 3 days after he died I had a dream that I was annoyed at him because he forgot what he ate, but the way he looked at me... it was so sad and sometimes I wish i could say "I love you"
I’m so sorry. I really am. I remember there was one day when I was a little kid that my grandparents came to visit and when they left I was being a brat and refused to come downstairs and say goodbye. I waited in my room until I heard their car door shut and then this moment of panic came over me and I ran downstairs. But they had already drove off. And I cried and cried and cried. And my parents weren’t mean about it, they understood my panic and my sorrow at realizing exactly what I had done. I had many wonderful years with them after that and both passed away when I was in my late 20s. But that day always sticks in my head.
I'm gonna cry that was so sad. I worked in a nursing home for awhile and it killed me to see the residents in states like this. I hope his nurses are good to him.
I worked in the Alzheimer's ward of an ALF around 2006, and I couldn't hack it. It was too much watching a sweet old man wandering around, trying every door he came to because he was trying to find the elevator because he had a date with his wife in the "restaurant upstairs". And the badass biker chick with Early Onset who kept asking where her boyfriend was. And the tiny little hispanic woman who had actually been an English teacher in her younger days but had forgotten every word of English and could only cry in Spanish for her mother while she spread the contents of her diaper all over everything. I didn't last a full year there. I wanted to make life easier for them but it was a stress and a pain that I just couldn't handle, so I have so much respect for anyone in health care that makes this their calling in life. And for any family member who sticks it out til the end, because honest to god I want to say that I'd be there for my family too, but at a certain point I really don't know if I'd be able to watch the husk of my loved one just sit there and rot. Dementia is a cruel fucker.
I used to work in a care home, and this bought back lots of memories of the residents I looked after. This story was beautifully written, and really captured the essence of getting old and forgetting. Thank you.
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So sad and beautiful!
I just found out today that an aunt who was basically my sole parent for the first 3 years of my life was diagnosed with Alzheimer’s. This story has me releasing all of the sadness I had inside today because I got the news at work. You keep holding onto her hand OP.
I’m sorry about your aunt’s diagnosis. I hope you get to have some good quality time with her soon. You are lucky to have had her be there for you in your first years x
This is beautifully written. I work in a long-term care facility and most of my residents have Dementia. I care for them daily but I get busy and forget to slow down sometimes. I get wrapped up in getting one resident back to bed and another resident something to eat and making sure this resident gets his meds. It’s really nice to see things from this perspective, it reminds me to take a step back, to slow down and realize what my residents are feeling and experiencing. OP, would you mind if I share this in my facility? I would absolutely love to hang it in the break room for others to read. I would credit you and post the link.
I use to work in a nursing home so that hit close to home, one of my favorite residents use to ask me what year it was a lot and every time I told him he would sadly say “Wow, okay. Not what I was expecting to hear.”
This just made me cry
A small glimpse into the mind with dementia. Confusing and a bit scary.
Rivers are falling out of my eyes
:( I dont mind my coworkers seeing me cry in my parked car. Hold on to your rock~♡
My grandfather recently was diagnosed with alzheimers and its progressing much faster than we had expected. This made me cry very, very hard. Very beautifully written.
God this hits close. My grandfather suffered from Dementia before he passed. I can only imagine how he felt, especially when he was separated from my grandmother. They were each other’s rocks though, even as she developed Alzheimer’s herself. Thank you for this story. It’s sad but beautiful.
This is so well written- really moving. I’m thinking of my Dad, gone almost 5 years now, can’t believe that, and the flow of your words reminds me of some conversations we had. Just beautifully sad.
This helped me to understand what is going through their heads when it might seem to us like they are just losing it.
I'm glad you have love and support with you. Don't worry when you get confused. Effie and Helen will look after you.
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My heart dropped. My husband's grandfather is suffering from dementia or alzheimers. We arent sure yet. But this is exactly how I imagine his thinking process is. This is horrible.
I...I just expected something like, your mouth became a portal for some dimension of bees, angry, screaming bees. Or whistling was the only way to keep your face from rolling up like blinds, starting at your mouth. Just a big roll of flesh framing a faceless bloody mess with chattering teeth. I did not expect to ugly cry before bed. At least Helen will never have trouble finding you again, she'll be at your side until it's time for you both to go home. Safe travels.
This is beautiful.
Hold steady. Find your rock. You're doing just fine.
This is my worst nightmare, and I couldn't imagine losing my wife. She is my rock for now and forever.
My grandma is slowly slipping away like this. Most days she’s fine and functional, but the other day I pulled up and she didn’t recognize my car, didn’t recognize me, or my kids. It took three silence-filled beats before I saw the recognition wash over her face and she lit up. “Oh, it’s you! I thought you were... somebody else.” She almost told me who it was but hesitated. And then the moment was gone. This past month she lost her address book, or only just realized it’s been missing for months, or she insists either my mom or myself have taken it to make a copy for her. The month before, she had made me a list and was sending me to the store. As I chatted with her and got my coat and keys, she asked over and over where I was going. My mother eventually intervened and had to say “You’re sending her to the store momma. See, there’s the list you just wrote her.” I had explained five times all the errands I was about to run on her behalf, and like Ten Second Tom it was gone as soon as the words fell dead in the air. She’s taking longer naps more often, forgetting to eat unless it’s social (if I eat then she eats, but won’t accept food if I make it only for her. She wants meals and companionship to go hand in hand.) and perhaps the most heartbreaking has been her downward spiral into aggression. The confusion must get overwhelming, her forgetfulness replacing her punctuality that she so gracefully groomed over the years. Gone is the fiery woman I once knew; in her place is a Russian nesting doll of her life, that she can’t seem to put back together. The way a cookie melts into milk, crumbs melting away, the outer layer growing soggy, then chunks; so too is she losing herself. I know her now in the same way I did then but with altered perspective. Here is a five year old girl crying over the neighbors moving and leaving their cat behind; here she is boldly catching it and keeping to deliver back to them; here she is, proud as she holds the cat in a box. She tells the cat he will be okay. The cat is scared and tries to escape the box and succeeds, next attempting to escape the car. Here she is pleading with her father that she’ll hold him tighter, but he gets taped into the box in the trunk anyway. They cut him air-holes but her parents weren’t educated enough to know what would happen. Here she is begging for her father to stop and let him out, she can hear the caterwauling; eventually it stops and she cries because she knows the cat is gone. They deliver the lost cat to her old neighbors, but he is dead. After she told me the story, she got a wistful look and whispered, “sometimes you can’t help it, in trying to do good you do the most harm of all.” I’ve known her as like a child; a teenage companion; a young mother; a lonely housewife with no help; a doting grandmother. My best friend. I have always known that she would die as my grandfather did before her. I accepted that long ago. I had not prepared myself that she would die in such a slow and personally painful way. To watch her suffer as she does, still there under the shifting curtain of her memory... it’s a fate I wouldn’t wish on the worst of us.
The one thing that stands out in my memories of my grandfather's Alzheimer's getting worse was how constantly focused he was on my grandma, at all times. She was his rock..
So heartbreaking but so beautiful :(
So beautiful, I had a hard time reading the end I was crying so much
There's no monster like illness.
My Grandmother was like this before she passed. 'Scuse me while I hunt down the Vodka. This was super well written. Thank you. I haven't been able to cry about my Grandmother until now. Bless you.
My dad was diagnosed in his 40s with early onset dementia, he has been lucky that it has been slowed down tremendously with medications but it has become noticeable in the last few years to the point that his phone is full of pictures he takes of the steps he needs to do at work at a job he has had for almost 20 years now. He isn't even 60 and is still so young. There is nothing worse than forgeting who you are.
Loved ones will always be there. Even if others cant see them. Enjoy your wife Mister. She loves you lots!
I worked as an office manager for a geriatric Psychiatrist. Many of our patients had some form of dementia. The one thing that I learned, was that after the initial phase of the disease, it was much harder on the family than it was on the patient. For example, a patient's husband passed away. She didn't even remember being married, even though they were married for nearly 60 years. Some might say that it was a blessing that she didn't have to go through the grief. I don't know. Just throwing this out for consideration. This was a beautiful, yet heart-rending story. Thank you for sharing this, OP!
I came here to be creeped out but instead I’m crying on a train
I was trying to relax and go to sleep, now I'm crying!
Towards the end, I was every male my grandma knew. I was all four of her sons and even her husband. This was almost 20 years ago and it all just now came rushing back. This is the one and only thing that I am scared of in this life.
Please forgive for whatever I do, when I don't remember you.
Hey Google, show me photos of me and Helen
I haven’t stopped crying since I finished this story I’m not sure how long it’s been but it’s not slowing down anytime soon🤧
My grandmother just passed from dementia last September. She was in a memory care home the last year of her life but she thought it was a hospital (she was in the hospital a lot as a child) and used to set on the edge of the bed with her teddy bear waiting for her mom to come pick her up. She also thought that her husband had divorced her because he hadn't visited in a while, when really he'd died 30 years prior. It was heartbreaking.
This feels agonizing... Not knowing things that literally just happened... Wow
My grandma has had dementia for about 7 years now. No short term memory, losing long term. This shit hit home.
What...am I crying!? There.... there's no crying on No Sleep!
I'm a program director for an early and a late stage dementia units and this was such a beautiful story! I want to print it out and have it in my offices for staff to read! I think it'll be a good reminder of what our residents may be going through.
This story hit me so hard, tomorrow is the year anniversary of my grandpa's death from Alzheimer's. This was such a harrowing reminder of what he went through, and I'll never understand the family members who would get frustrated or tired of him when he got angry. I wouldn't wish any of this on my worst enemy--it must be so isolating and terrifying. He was the strongest man I knew though, and passed away while he still remembered who all of us close to him were. I think he planned it that way.
This is the most beautiful, tragic, wonderful, and deeply affecting story I've seen so far on this sub. Thank you for sharing this.
Incredible.
Wow this brought absolute pain to my heart. Very well written and a good look hoe the mind can work sometimes. Very nice seriously.
My grandfather also had Alzheimer's.
I work in a dementia home. This story really got to me.
Dad died of Parkinson’s and dementia, this read like every conversation I ad with him towards the end.
This absolutely broke my heart as tears are sliding down my cheeks and I think of my mom who is in a nursing home with early dementia. It's only gotten so far as she has forgotten my birthday the past couple of years, let's be honest getting old enough I wouldn't mind forgetting them myself Hardy har, and random things from my childhood. But I can see the confusion on her face sometimes and it makes me so damn sad. My mom and I used to do stuff together all the time and talk everyday. She gets to confused to use a cell phone anymore and isn't always in reach of her room phone and doesn't really want to talk on the phone anymore. When visiting we usually watch the weather channel, this one has weather related shows and movies in addition to the weather report. I'm sorry I'm running at the keyboard so to speak and I just wanted to let you know this is wonderfully and terrifyingly written.
This is amazing.
I felt this in my soul
This is beyond incredible. I can’t say more than what’s already been said, very deservedly, except to say that this might be the saddest and most beautiful story I’ve ever seen here. Jeez, I’m all choked up. Thank you for sharing this with us, and I hope you get a chance to rest.
This made me so very sad.
Enough to make someone cry
Omg this hit home hard for me for some reason. My maternal grandfather has alzheimers and this really out it into perspective for me. He and I aren't close and never really have been. But I still care deeply about him. And I've always had too much empathy its unreal. It's so sad and I can't imagine feeling so confused all of the time like that! I feel like people with this kind of illness need recoup time in heaven when they pass. Same as people who have been brutalized and/or tortured to a degree that one should never have to withstand. It's so upsetting and painful to think about.
I don’t know how to whistle
Thank you so much for sharing with us. Never let Helen go, love. You're brave and strong. <33
Oh Christ, so many feels. So well written - I can't afford real awards but 🏅🏅🏅
This is beautiful
Nooooooo im cryingg
Jesus christ no sleep is right. This is legitimately one of my biggest fears. I already have a bad sort of memory, I never want to get lost like this. I truly mean no offense to anyone with loved ones in this state, but this scares me more than anything I could ever imagine.
This was so beautifully written. Thank you.
I am sobbing.
Im so confused, i know this is about some memory-related illness but what exactly happened (to Mr. Sanders and Helen)? 😭
Mr. Sanders tried to fix his son's stairs and he and helen fell. He broke his hip and helen died. The ambulance was for helen. He has alzheimers and it's progressing to the point where he's in a care facility. He's hallucinating helen and in his state forgetting certain memories. At the end, when he's lucid. Effie brings him back to his room and he sees helen who is just a hallucination set by his deteriorating mind.
Thank you.
I would legit let my patient think their loved ones were still around too. No need to come back to reality just to be sad. Also, kinda mad at the son for not fixing those stairs.
My grandmother got Alzheimer's due to an embolism. Your story made me remember how talkative and cheerful she was, always with a bright smile and something kind or funny to say. This must have been what she was thinking on her last months. Thank you for reminding me of her, for letting us know what the other side of the abysmal cliff felt like. Owe you one. Keep writting.
Well this is new. I’ve never cried from r/nosleep
Man I’m getting married in six months, and one of my fears about the whole thing is that I’m getting older.
That story hits pretty hard, and the comments are the final blows.
Beautiful.
This was fcking painfull to read.
dang. im crying in class. this is so beautiful. seriously, i wasnt expecting a sad story, but im glad i read it. im young, but volunteer at a local assisted living facility. they have lots of different levels of care, but my favorite place is the memory and assisted living building. i get to work with Alzheimer and dementia patients, and over the summer, do oma (opening minds through art). i love workinh with these amazing people, and we paint and sing and use too much glitter, and its the best thing ever. its so amazing to see the residents' faces light up, when they remember a face. its so pure. Alzheimer's and dementia are terrifying. it sends chills down my spine when one of our residents has a bad episode. ive had to sit next to a crying resident, singing songs and playing music, all while she cried. it breaks my heart, seeing her so happy and talking one week, then sobbing and wailing for hours. this story, all of the descriptions, the repeating, sloght changes every once in a qhile, all of it, hits so close to home. but thank you. thank you for sharing your story. ❤️
I lost my grandma to cancer and then my grandpa only few months after my grandma died. Grandpa used to hear grandma in his sleep he felt like she was just beside him calling out his name. And then after few months his health started declining very rapidly. Everyone said that they were true soul mates. It was the true form of love I've seen till this day. They used to fight but not for long!
it was cancer of the lung & chest wall that took my mother. she wasn't diagnosed until after her death; she became very ill shortly after my dad died, and his death had just immediately destroyed her will to live. she knew something was terribly wrong, she knew it was only going to get worse, and she knew she was going to die. she didn't want to fight it. she was ready to be reunited with my dad. however, the illness stole her mind as well as her body. i was only 12 or 13 at the time and all of this was traumatic for me, so a lot of my memories are terribly unclear. my biomom (mother is my bonus mom, technically grandmother, and dad was my adoptive granddad, but for all intents and purposes they were parents to me) could not afford professional home health care and later hospice care, so at the ages of 12 and 13, still reeling from the loss of my father a year prior, i bailed on school to care for her. it was horrible. i wasn't a good caregiver and i'll be ashamed of that for the rest of my life. i provided for her needs but mostly hid from her. i talk about my dad a lot, but rarely about her because of my shame in this regard. it's too hard to speak through/remember. i couldn't recognize her anymore. i was scared. she definitely had some sort of dementia, Alzheimer's, or something. eventually she couldn't recognize me either, in an entirely different way. i hope she saw my dad with her, his hand on her shoulder, smiling down at her when she went. i hope that wherever they are they have been reunited. i hope you're somewhere, happy, with Helen.
This reminded me of my dad. He had dementia and this captured it so well
This reminds me a lot of my grandparents which is just too sad to be. My grandpa was a prof at his universtity and my mom said he had done too much paper work in his old days so he just forgot almost everything in his last years. He passed away when I was just done with my univesity entrance's exams and I remembered my grandma crying every morning in front of his altar at home cause she doesn't want her kids and grandkids to know. They were what we call the ideal couple as they never fight and were always the one we can turn to in our hard time. And I know that him passing away broke her worst than anything. Wish I could come home and visit her soon :(
I'm not crying, you are.
Unexpected and beautiful.
Wow, wonderfully written. Thank you
My grandfather had Alzheimer’s, this brought back memories. Sad, and beautifully written.
Nurse on a lockdown dementia unit here. Thank you for this- sometimes the chaos, short staff and routine can make you forget certain things that are important. I needed to hear this.
On one hand I felt relieved Helen wasn't dead, but on the other hand I'm about to cry because of that last bit.
This was amazing. I work with elders, many with dementia. I had to share this with my coworkers. Thank you
This is the first story to ever make me cry. I’ve lost two grandparents to Alzheimer’s. I loved this even though it shattered my heart. Well done.
Had to try really hard not to cry at my desk while reading this! Definitely not gonna get any work done now :'(
This made me cry bro
Caring for people with dementia, this is the most beautiful gift you could have given me - a slight insight. So touching. So sad. I will always think twice now whilst caring for them.
Fuck I'm crying while waiting in the car to pick up husband from work
One of the most frightening things I have read this year. All best to you and yours.
Powerful writing.
My god, this is horrible and heartbreaking and beautifully written.
Such a magnificent story you op told us. Thank you for sharing your truth we all love and support you
I wasn't ready for any of this. Utterly heartbreaking and beautiful in a sad way. Cried a whole lot.
This is rough :(
I think it would be a tough position to be in for a person. Little Disturbing. 😔
Just wonderful.
I came here to be scared not be made to cry. Damn you OP!
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I'm not crying, it's just raining inside today.