Hi Cassie, I can well relate. Lost my dad to dementia in May of this year. He drank from a bottle of washing machine liquid, mistaking it (we think) for some kind of smoothie... aspirated, was taken into hospital...put him on antibiotics (kiss of death in my view) and spent the last 3 weeks of his life drowning in his own spit. Pretty harsh, all told.
Well, good you've found some anger in a bid to move on!
Oh geez. That sounds rough. But maybe also a blessing so the experience wasn’t prolonged? I don’t want my mom to have this life quality for too long. She’s been to the hospital a few times for fainting and for a fall and then a few days later she had a UTI and banged her arm and broke it. It’s all awful. I’m so sorry for your loss. Such a hard, painful experience. Was it a relief in the end? I’m hoping it will be for me.
Thanks for sharing this, Alexis - Alzheimer’s really is the “gift that keeps on giving,” in the worst way. I feel a little like the odd man out in the comments thread.
I spent most of the last three years putting in 30+ hours a week caring for my 79-year-old mother, until it became too much a few months ago.
I was away from home, at school when ten, and was homeless by sixteen, so this was more out of a sense of duty than love, which made it even harder.
Family dynamics didn’t help - my older brother barely contributed, and the strain took its toll on my relationship with my own kids, too.
Your words really resonate. Thank you again for writing this.
There are sooooo many layers to this. I also have a sibling who does not help at all and I resent them a lot. It has destroyed our relationship (at least for now). I also have some resentment toward my mother for some things (as we all do). Not as extreme as what you mentioned, but I’m sad that I’ll never get to express it to her. It’s definitely a lesson in living life and not waiting to do or say things, that’s for sure (at least for me). I’m sorry about what you’ve gone through. I can’t imagine 30+ hours of care, you’re a trooper, but getting help was the right thing to do! I try to remember that I need to take care of ME first. Can’t pour from an empty cup. But it is hard! Thanks for sharing your experience. And I’m glad my words resonate with you. That’s all I was hoping for. 🫶
Oh my gosh, what a powerful piece of writing. I’m so sorry that it’s viciously taken your Mum from you ❤️. FUCK YOU! (Not you, obviously. Fuck the disease)
Alexis, there are no words to express the deep sadness and pain I feel for you, but I can say your mother is very fortunate to have you as her daughter.
As someone who has watched, and often helped, my mother provide years of care to dying relatives with AIDs, cancer, and old age, I know the hardships involved and how it can take a toll on your life in various ways. Even as I write this, I'm preparing to go take care of my own 85 year old mother who fell and broke her hip three weeks ago, which is no simple task.
That being said, your post is spot on and very real. I appreciate you sharing your feelings. And I know that despite how hard it is for you, you are doing your best and will do a great job for your mother.
Thank you, James. I appreciate your thoughtful reply. There really are no words sometimes (except when there are and you curse like hell… ha!!). I hope your mom is ok! Sending you strength and hugs as well! 💪🏼
Nothing like giving or not giving a BIG FUCK! Let it rip. 😂
She is doing very well, thanks. We are taking her home from hospital rehab today and she's thrilled to be out of prison. The staff loved visiting with her and hearing her accent and stories about Holland. But being a care provider is NOT my gifting. haha.
Hi Cassie, thank you for writing this. Both my husband and I have lost grandparents to complications from Alzheimer’s/dementia. It robs so many of us of things we love the most. It’s true that when it gets to a certain point you just want it to be over and for both sides’ suffering to end. Sending you thoughts of comfort and peace during this difficult time.
Hi Charlie! Alexis here (the one who write this post). For some reason, a few people have commented to Cassie on my post. I guess because she is one of the first people who left a comment and it became confusing. Anyway, thank you very much for our thoughtful reply. I’m sorry about what you and your husband went through with your grandparents. It is indeed a complicated disease. I gladly accept all the comfort and peace that comes my way, so thanks for that! 🫶
Oops sorry about that! I'm new here and very much still have no idea what I'm doing - my apologies! Thank you for your kind words. Keeping you and your family in my thoughts and prayers.
Alzheimer is a fucking bitch. I still remember my great uncles decline. I was still a young girl when he got A and eventually died (and I also didn't have a deep connection with him.) But it left an incredible impact on me a as a little girl. I can't really imagine what you are going through - all I know is that it's a truly horrible disease
Thanks for sharing this. I lost my grandma in this way, and it shadow is always with us every time my mom forgot something, because we know that it's genetic. I think that only who have had to do whit this illness can really understand the feeling. your post hit my heart.🤍
Hi Fia, I’m sorry to hear about your grandma. I agree it’s only possible to understand if you’ve been through it. I noticed you mentioned it’s genetic, but I’ve read various different studies about this and I’m not convinced it is… (slash hope it’s not!). My granny also had it. But my strategy is to stay active, keep learning, no smoking, and to limit my alcohol intake. Every time I forget something (that’s usually normal) I get scared that I might have dementia in the future! I’m happy to hear this hit your heart. Although hard and sad, connecting with others over this horrific experience has been healing for me. Thank you for your thoughtful comment. 🫶
While not alzheimer has taken my mom, cancer has. And all these illnesses can just go f* themselves, I’m totally here with you and am so sorry for what you’re going through. Dementia has taken 2 older relatives in the past and I was all a huge wake up call to live life as best as we can. 💖
My mum is getting forgetful and I cannot even express how much this piece spoke to me. It has highlighted all my fears (she's not diagnosed) but the things she forgets can drive me insane and I get so helpless. F*** that disease. It needs jail time for all the horror. Love the prose 💛
Raksha - I am so glad this piece found you! And I’m sorry to hear you’re going through something similar. It really is awful and the long goodbye is such a hard experience. Honestly, I don’t even see the point in an official diagnosis… there’s no cure. And the medicines that we tried with my mom didn’t do shit. We’ve taken her off of everything. What types of things is your mom forgetting so far? Sending you a big hug and lots and lots of strength! You got this. ❤️
I feel for you too, the things you described don't seem easy. I can only imagine how much weight you carry at this stage. My mum forgets appointments, she forgets to take her blood pressure medication and if she does take them, she can't recall if she did. The conversations we have are the ones she forgets most. I feel like entire blocks of my childhood are lost in her memory. I so admire you for standing despite it all. And thank you for the hugs. Right back at you ❤️❤️
Thank you! Hugs all around. I remember when my mom started to lose track of all her appointments, days, the time, etc. Unfortunately, it's just the beginning. Not recalling conversations or things you've told your mom (even just a few minutes ago), is one of the hardest parts. Sometimes I even refrain from telling her about things in my life to protect myself, but then I try to remember that she's probably happy to hear them in the moment, even if she doesn't remember. So tough. Thanks for sharing your experience with me here. Enjoy all the moments with your mom, even if they're a bit frustrating! I've had to lock my bedroom door to keep her from asking me too many questions. lol 🫶🫶🫶
Oof yeah, I sure feel this one. Mcsweeneys loss is our gain, for sure. I agree though, it all fucking sucks - especially being so far away. The weirdest part of my last trip back was seeing how my 6 month old niece was more capable than my 63 year old mum, yikes! Like they both needing spoon feeding, but a least Sky looked at me when I spoke to her and had some element of interest in the world 😂
Ahhhh, what fun! Definitely agree with you on the now fuck off and die front and how much we become control freaks and get annoyed at everyone around us. This living grief thing is so tough. So many people have asked me how my holiday was after I got back from going to visit her and I want to tell them to fuck off, too, haha! But anyway. All fun and games, hey?! 💜
Yeah that’s always a tough question, “how’s your mom doing?” I know people mean well, but how the fuck do you answer that? Ummm… well… she’s slowly dying, doesn’t call on my birthday anymore, and oh yeah, last time I saw her I had to feed her and wipe her ass. Such a shitty topic. I’m so glad we found each other, Cassie! I wish we lived closer. :)
OMG I just remembered that...how sick I got of trying to answer, "How is your mom?" or "How was your trip?" You can't really say the truth: "It's all totally f'ed and thanks for asking," so you have to make up some lame milky response.
Well alrighty then! A letter well-worth sending. Thank you for sharing it. For what it's worth I submitted my first thing to Mc Sweeneys a couple months back and got rejected too. I think it makes a fine club! It's amazing how the little things really stick with you. The birthday cards that first were illegible then stopped were a slow heartbreak; the moments of lucidity when you realize the same mom is still in there somewhere; the literal and figurative distance that separates you. Everything is a slow heartbreak until you realize you've been crushed. I am sorry for what you are going through, and glad you have your brother and it has made you closer. Hang in there and be kind to yourself!
Hi Cassie, I can well relate. Lost my dad to dementia in May of this year. He drank from a bottle of washing machine liquid, mistaking it (we think) for some kind of smoothie... aspirated, was taken into hospital...put him on antibiotics (kiss of death in my view) and spent the last 3 weeks of his life drowning in his own spit. Pretty harsh, all told.
Well, good you've found some anger in a bid to move on!
Oh geez. That sounds rough. But maybe also a blessing so the experience wasn’t prolonged? I don’t want my mom to have this life quality for too long. She’s been to the hospital a few times for fainting and for a fall and then a few days later she had a UTI and banged her arm and broke it. It’s all awful. I’m so sorry for your loss. Such a hard, painful experience. Was it a relief in the end? I’m hoping it will be for me.
Thanks for sharing this, Alexis - Alzheimer’s really is the “gift that keeps on giving,” in the worst way. I feel a little like the odd man out in the comments thread.
I spent most of the last three years putting in 30+ hours a week caring for my 79-year-old mother, until it became too much a few months ago.
I was away from home, at school when ten, and was homeless by sixteen, so this was more out of a sense of duty than love, which made it even harder.
Family dynamics didn’t help - my older brother barely contributed, and the strain took its toll on my relationship with my own kids, too.
Your words really resonate. Thank you again for writing this.
There are sooooo many layers to this. I also have a sibling who does not help at all and I resent them a lot. It has destroyed our relationship (at least for now). I also have some resentment toward my mother for some things (as we all do). Not as extreme as what you mentioned, but I’m sad that I’ll never get to express it to her. It’s definitely a lesson in living life and not waiting to do or say things, that’s for sure (at least for me). I’m sorry about what you’ve gone through. I can’t imagine 30+ hours of care, you’re a trooper, but getting help was the right thing to do! I try to remember that I need to take care of ME first. Can’t pour from an empty cup. But it is hard! Thanks for sharing your experience. And I’m glad my words resonate with you. That’s all I was hoping for. 🫶
I appreciate that.
If I could offer any useful advice, I’d echo your sentiment ….. feel no guilt … do your best, but remember, there is a reason carers die sooner!
Care for yourself at least as well as you do for others 👌🏻👌🏻
That is 100% right!!! Ugh, the guilt. I need to remember not to feel it. ;) Thanks, Mark!
Oh my gosh, what a powerful piece of writing. I’m so sorry that it’s viciously taken your Mum from you ❤️. FUCK YOU! (Not you, obviously. Fuck the disease)
I got it. Thanks for the fuck! 😂❤️
Alexis, there are no words to express the deep sadness and pain I feel for you, but I can say your mother is very fortunate to have you as her daughter.
As someone who has watched, and often helped, my mother provide years of care to dying relatives with AIDs, cancer, and old age, I know the hardships involved and how it can take a toll on your life in various ways. Even as I write this, I'm preparing to go take care of my own 85 year old mother who fell and broke her hip three weeks ago, which is no simple task.
That being said, your post is spot on and very real. I appreciate you sharing your feelings. And I know that despite how hard it is for you, you are doing your best and will do a great job for your mother.
Sending hugs your way.
Thank you, James. I appreciate your thoughtful reply. There really are no words sometimes (except when there are and you curse like hell… ha!!). I hope your mom is ok! Sending you strength and hugs as well! 💪🏼
Nothing like giving or not giving a BIG FUCK! Let it rip. 😂
She is doing very well, thanks. We are taking her home from hospital rehab today and she's thrilled to be out of prison. The staff loved visiting with her and hearing her accent and stories about Holland. But being a care provider is NOT my gifting. haha.
Yeah it’s fucking hard and really tests your patience! You got this! 🥊
Hi Cassie, thank you for writing this. Both my husband and I have lost grandparents to complications from Alzheimer’s/dementia. It robs so many of us of things we love the most. It’s true that when it gets to a certain point you just want it to be over and for both sides’ suffering to end. Sending you thoughts of comfort and peace during this difficult time.
Hi Charlie! Alexis here (the one who write this post). For some reason, a few people have commented to Cassie on my post. I guess because she is one of the first people who left a comment and it became confusing. Anyway, thank you very much for our thoughtful reply. I’m sorry about what you and your husband went through with your grandparents. It is indeed a complicated disease. I gladly accept all the comfort and peace that comes my way, so thanks for that! 🫶
Oops sorry about that! I'm new here and very much still have no idea what I'm doing - my apologies! Thank you for your kind words. Keeping you and your family in my thoughts and prayers.
No problem! ;) And you’re welcome.
Alzheimer is a fucking bitch. I still remember my great uncles decline. I was still a young girl when he got A and eventually died (and I also didn't have a deep connection with him.) But it left an incredible impact on me a as a little girl. I can't really imagine what you are going through - all I know is that it's a truly horrible disease
What you know is true. I’m sorry to hear about your great uncle, even if you weren’t close it’s terrible!
Definitely one of the absolute worst diseases out there. Sorry you're going through it ❤️
Thanks, Sophie. 🫶
Thanks for sharing this. I lost my grandma in this way, and it shadow is always with us every time my mom forgot something, because we know that it's genetic. I think that only who have had to do whit this illness can really understand the feeling. your post hit my heart.🤍
Hi Fia, I’m sorry to hear about your grandma. I agree it’s only possible to understand if you’ve been through it. I noticed you mentioned it’s genetic, but I’ve read various different studies about this and I’m not convinced it is… (slash hope it’s not!). My granny also had it. But my strategy is to stay active, keep learning, no smoking, and to limit my alcohol intake. Every time I forget something (that’s usually normal) I get scared that I might have dementia in the future! I’m happy to hear this hit your heart. Although hard and sad, connecting with others over this horrific experience has been healing for me. Thank you for your thoughtful comment. 🫶
Yes you right, it can be genetic but, fortunately, it is not a rule!
Sending you a big hug Alexis!
While not alzheimer has taken my mom, cancer has. And all these illnesses can just go f* themselves, I’m totally here with you and am so sorry for what you’re going through. Dementia has taken 2 older relatives in the past and I was all a huge wake up call to live life as best as we can. 💖
Fuck all the diseases. And yes, I agree. It’s definitely a wake up call. Life is short! 🫶
My mum is getting forgetful and I cannot even express how much this piece spoke to me. It has highlighted all my fears (she's not diagnosed) but the things she forgets can drive me insane and I get so helpless. F*** that disease. It needs jail time for all the horror. Love the prose 💛
Raksha - I am so glad this piece found you! And I’m sorry to hear you’re going through something similar. It really is awful and the long goodbye is such a hard experience. Honestly, I don’t even see the point in an official diagnosis… there’s no cure. And the medicines that we tried with my mom didn’t do shit. We’ve taken her off of everything. What types of things is your mom forgetting so far? Sending you a big hug and lots and lots of strength! You got this. ❤️
I feel for you too, the things you described don't seem easy. I can only imagine how much weight you carry at this stage. My mum forgets appointments, she forgets to take her blood pressure medication and if she does take them, she can't recall if she did. The conversations we have are the ones she forgets most. I feel like entire blocks of my childhood are lost in her memory. I so admire you for standing despite it all. And thank you for the hugs. Right back at you ❤️❤️
Thank you! Hugs all around. I remember when my mom started to lose track of all her appointments, days, the time, etc. Unfortunately, it's just the beginning. Not recalling conversations or things you've told your mom (even just a few minutes ago), is one of the hardest parts. Sometimes I even refrain from telling her about things in my life to protect myself, but then I try to remember that she's probably happy to hear them in the moment, even if she doesn't remember. So tough. Thanks for sharing your experience with me here. Enjoy all the moments with your mom, even if they're a bit frustrating! I've had to lock my bedroom door to keep her from asking me too many questions. lol 🫶🫶🫶
Oof yeah, I sure feel this one. Mcsweeneys loss is our gain, for sure. I agree though, it all fucking sucks - especially being so far away. The weirdest part of my last trip back was seeing how my 6 month old niece was more capable than my 63 year old mum, yikes! Like they both needing spoon feeding, but a least Sky looked at me when I spoke to her and had some element of interest in the world 😂
Ahhhh, what fun! Definitely agree with you on the now fuck off and die front and how much we become control freaks and get annoyed at everyone around us. This living grief thing is so tough. So many people have asked me how my holiday was after I got back from going to visit her and I want to tell them to fuck off, too, haha! But anyway. All fun and games, hey?! 💜
Yeah that’s always a tough question, “how’s your mom doing?” I know people mean well, but how the fuck do you answer that? Ummm… well… she’s slowly dying, doesn’t call on my birthday anymore, and oh yeah, last time I saw her I had to feed her and wipe her ass. Such a shitty topic. I’m so glad we found each other, Cassie! I wish we lived closer. :)
Haha, right?! She's doing great, for her, I guess, but I'm not 😂
I'm so glad we found each other too! And yup, I agree. Why do Amsterdam and Australia have to be so far away?!
I think we will meet one day! ;) Exactly! It would be easier to not remember all this. 🙃
OMG I just remembered that...how sick I got of trying to answer, "How is your mom?" or "How was your trip?" You can't really say the truth: "It's all totally f'ed and thanks for asking," so you have to make up some lame milky response.
I always say, “she’s doing ok considering” 🤷🏻♀️
Well alrighty then! A letter well-worth sending. Thank you for sharing it. For what it's worth I submitted my first thing to Mc Sweeneys a couple months back and got rejected too. I think it makes a fine club! It's amazing how the little things really stick with you. The birthday cards that first were illegible then stopped were a slow heartbreak; the moments of lucidity when you realize the same mom is still in there somewhere; the literal and figurative distance that separates you. Everything is a slow heartbreak until you realize you've been crushed. I am sorry for what you are going through, and glad you have your brother and it has made you closer. Hang in there and be kind to yourself!
I'm sorry you are going through this. My Dad passed away at the end of November with Dementia and Parkinsons at 70 years old and it's utterly shite.
I hope one day that we will live to see a cure found.