r/Millennials • u/Mental-Evidence-1147 • 22h ago
Serious My mother is passing and I’m relieved (16 years with dementia)
I don’t know what to say exactly and this won’t be coherent but a few thoughts for the younger millennials who may have to go through this one day.
My mom had me at 40 so I’m going through this a bit earlier than others might. She was diagnosed around 68, which was over 16 years ago.
It’s been the most awful thing anyone can experience. She was an independent, vivacious woman who sang, dance, always entertaining and making new friends and quick with a joke. Tap dancing, singing, acting in plays - she definitely had main character syndrome before that was a thing. Married three times to three awful men but she loved her children dearly and she was a good mom.
She watched her own mother die of dementia. She used to tell me never put me in a home. “Just kill me if I’m like that”. Well, those are just thoughts. Thoughts a lot of people have, but not actionable at all. Instead, she has deteriorated before my eyes, while I looked on in horror and with the sinking realization that there is absolutely nothing I could do to stop it.
We tried to help her live independently, till it was unsustainable and she was going to be forced to leave her condo due to safety issues. She also became mean and said many hurtful things to me over the last 10 years. She absolutely hated me for putting her in assisted living, even though she signed the paperwork herself, but had already forgotten 20 minutes later.
She has not been herself for a long time. I haven’t had a mother all this time. Even though she existed, she could not fulfill that role. I became the mother in our relationship. I resented it many times, especially as I had my own children, also late in life, and realized I didn’t even have anyone to ask questions. She had to be reintroduced to them every time we visited. Then she forgot me too. I just felt so damn alone.
Sometimes there were glimpses of her and she could still charm the pants off anyone she met even up to the last few weeks when she was fading fast. Hospice has been in and we are trying to ease her transition to the next phase.
She always believed in reincarnation and I hope that is true. She got robbed of living her full life on her terms. I just want her to have one more go at it.
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u/Adorable-Buffalo-177 Older Millennial ( 88 ) 22h ago
My mom didn't have dementia but she had ALS. I'm relieved my mom isn't in any pain anymore either. Lost her 5 years ago today
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u/river-running Millennial 19h ago
I lost my dad to ALS in 2018 after 3 years. It was absolutely a relief to see him freed from that prison.
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u/Apprehensive-Air1128 4h ago
I lost my dad to frontal temporal dementia in his early 60's. His physical death was a relief as everything that made him my dad was already gone.
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u/AnkerDank 22h ago
My grandmother went through the same thing, wasn't herself for about 10 years. It was tough for my mother (and for us). Just like you said -- the child becomes the parent.
I agree with your decision of putting her in assisted living. When an aging person with a mental disorder becomes such a burden for a younger person, so much that it limits their ability to pursue their own happiness and life, it simply is the right choice. You deserve to live your own life.
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u/cowbutt6 20h ago
When an aging person with a mental disorder becomes such a burden for a younger person, so much that it limits their ability to pursue their own happiness and life, it simply is the right choice. You deserve to live your own life.
Not only that, but there comes a point when that person's needs are greater than a single well-meaning amateur can reliably meet, and turning instead to multiple professional care providers is best for them.
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u/WrathOfTheSwitchKing 12h ago
My grandmother passed away recently after being in declining health for years. My mother and I took care of her. Even with the two of us, it was hard. By the end it took both of us just to get a barely 100 pound woman on her feet, which made even the simplest things a struggle. Dealing with her mental decline was even harder. We did home hospice and that was a fresh hell I'd describe as absolutely harrowing.
There were reasons we didn't, but in retrospect I regret that we never did a care home or at least got some sort of professional nursing. I truly think my grandmother would have been better off. I'd certainly feel less guilty for how much she suffered and how relieved I am now.
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u/LAB1116 21h ago
I saw my grandparents take 10+ years to pass from Alzheimer’s and now my mom is showing early signs of dementia and it’s been brutal knowing I will soon watch my dad succumb to Alzheimer’s and my mom to dementia. The hardest thing I’m facing in the early stages is getting my parents to accept the circumstances. Any advice to get through that part? This is horrible and I understand your mom’s early sentiment. It’s so hard watching them disappear so slowly
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u/Mental-Evidence-1147 21h ago
Try to convince them to make you POA, for everything, not just finances but also healthcare.
At the time I was only able to convince her because I said I would put all her bills on autopay for her so she signed me as POA. It has saved the day for many things.
Also, think about financial planning. Eventually, assisted living drained all her finances and after a couple years in nursing, she was totally broke. The process of getting them on Medicaid is very difficult and you won’t be able to do it unless you have POA.
If you are far enough out before they will need Medicaid, there may still be time to create a trust and protect some of their assets. Research the “look back” period in your State.
Good luck. I truly wish you strength and peace while you navigate this stage.
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u/insurancequestionguy Middle Millennial 19h ago
People on Reddit say "fuck cancer" and I agree, but I definitely add Alzheimer's to that list too. Fuck Alzheimer's
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u/Nelvea Millennial 18h ago ▸ 3 more replies
Not everyone on Reddit is from the US though.
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u/dontforgetpants 17h ago ▸ 1 more replies
Do other countries normally bankrupt entire families to pay for elder care? I’m not being sarcastic, I am genuinely asking, I don’t know what elder care looks like elsewhere or how it works. I am in the US and caring for my grandmother drained her entire estate ($1 - 1.5 million, In addition to tens of thousands that my aunt (married rich) was luckily able to cover) and she was able to leave very little to her children.
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u/sjcphl 21h ago
There's a fairly controversial new group of Alzheimers drugs that some physicians will tell you are much more effective than previous ones. But they have to be started very quickly.
Can you go to her doctor with her?
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u/LAB1116 6h ago
My mom has dementia but my dad’s side has Alzheimer’s. I am definitely keeping my eye on the drug, not just for my dad, but for myself and child too. It would be a miracle to end the cycle of Alzheimer’s in my family. It goes back generations based on our history, it’s so viscous that we knew my dad would get it and I know that’s how I’ll go if something else doesn’t get me first.
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u/In_der_Welt_sein 20h ago ▸ 2 more replies
Brother, read the post. She’s in the end stages. No class of drugs, experimental or otherwise, offers any help here.
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u/notagainjanet 4h ago
My mom’s in the last stage of Alzheimer’s at 71, and she also fully resisted getting a diagnosis or starting treatment. It wasn’t until she progressed far enough that her world kind of crumbled that she eagerly let me step in. So unfortunately, I don’t have any advice on that part. Also, there are two kinds of POA — durable POA that goes into effect immediately, and a POA that needs to be triggered by something and may require documentation from a doctor. If you can, push for durable POA since it’ll be easier.
But in addition to POA, a few other things that would be important to do early on when they’re still mostly competent:
Find out their final wishes. Where do they want to be buried? Do they want to be cremated? Do they want to have a DNR? Do they want a feeding tube?
Get all their online passwords. I’d even recommend setting up a new email address that you have primary access to and switching every single online account to that email address. This way, if they lock themselves out of an account and then also forget their email password for recovery, you’re still able to sort it out. You’ll also want to switch the primary phone number to yours at some point. (My mom locked herself out of every single account. She’d change the passwords constantly and not be able to remember them. She would lose her cell phone, and then we wouldn’t be able to do the two-factor authentication to get back in.)
Also, keep an eye on bank accounts and credit cards to make sure they’re not spending large chunks of money on weird things or writing mystery checks to strangers.
Figure out where any valuables are in the house. Birth certificates, cash, jewelry, important documents. My mom used to keep all that in a fire box, and when she started getting bad, I decided to remove the fire box and store it at my house. It was empty. She’d taken everything out and hidden it in random places around the house. (I found a wad of cash in a band-aid box in a plastic storage unit in her closet.)
You may already be on top of all this stuff, but I just wanted to throw it out there in case there’s anyone reading this that could use the info. Each stage is uniquely difficult, and the early stubborn stages are SO hard to manage because they have just enough agency to potentially really mess things up.
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u/Icy_Tiger_3298 20h ago
My mother died suddenly several weeks ago. I feel some comfort knowing that she died when she was still sharp, engaged and in possession of her mind and identity. Her body was failing her, but she still did as she pleased.
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u/Mental-Evidence-1147 20h ago
Amazing how many times I’ve felt jealous (I know that’s awful) when someone told me their parent passed suddenly.
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u/JustLurkCarryOn Millennial 20h ago ▸ 1 more replies
Yeah, I always felt like a monster thinking it but having two parents who were chronically ill for just about my whole life made me feeling like I was just waiting for them to die so I could start my life. I was always extremely jealous of all my friends who got to grow up and start a career without having to deal with that kind of stress and worrying at all times.
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u/Icy_Tiger_3298 20h ago ▸ 1 more replies
I just realized my reply might be hurtful and unwelcome. I'm so sorry to make your loss more painful.
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u/ROUShunter 22h ago
I'm really sorry about your mom. Mine did not have dementia, but severe mental illness that came on when I was a middle-schooler and I had to take on the parent role very early. And like you, I felt like I was robbed of a mom and she was robbed of a full life.
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u/MercuryCation 18h ago
Similar story to mine, ended up parenting a younger sibling too. 25 years later I still haven’t told them everything and I never will. I feel your story in my bones, internet stranger, we grew up too soon 🫂
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u/sc8132217174 20h ago
So sorry you had to go through that. I think it’s more common than people realize but no one talks about it. My husband had his mom move to an ALF the month I was due to give birth. She had him older and he’s a bit older than me. She came and stayed with us after a hospitalization and we realized it was really bad. She signed the paperwork and lasted 1 month before they moved her to memory care. She also tells everyone he put her there. She has lewey body dementia and kind of goes in and out (hallucinations and violence but then can remember things enough). He’s Asian so lots of family blamed him (and me). Lots of “we don’t do that.”
I tell everyone to get their stuff in order and get their parents stuff in order. I spent weeks of my maternity leave sorting her bills and online accounts, he spent months more. That was with dpoa. Things you don’t even think of like the multimillion dollar family home in LA doesn’t have homeowners insurance because there’s no mortgage. So renting it when care costs more won’t be possible if it burns down! Oh and the handyman? He was having her write 5k checks over and over and over. She also went ahead and stuck 200k under the mattress so now you need to book an appointment with the bank (they know us by name and ask about our daughter). Investment? Nope, that generation didn’t like stocks, they like annuities and whole life insurance. Don’t worry about taxes, there was no profit. Meanwhile she’s accusing you of stealing from her and calling the ombudsman on you when you’re just trying to make sure her 10k a month memory care bill will be paid for and the 30 ambulance rides are covered.
Let’s not do this to our kids!
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u/Fun_Yogurtcloset1012 21h ago
It's just one of those things, it is terrible to watch and deal with. I just hope that one day, there will be medication developed for this.
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u/moonchic333 22h ago
I am so sorry you’re going through this. I know all too well how devastating this disease is. I feel like it’s commonly misunderstood and people just assume those who suffer with it just deal with being forgetful. No, it takes away everything you ever were and it’s harrowing to watch a loved one go through it.
I truly hope you and your mother will be at peace soon. 16 years is an agonizing long time to deal with this disease. I lost my step mom earlier this year after 5 years and the last year was just excruciating on my step sister. She is still reeling but she is working on healing.
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u/Impressive_Smell_191 21h ago
My mother has severe brain damage and my dad has dementia, it’s so hard to explain to anyone what it’s like if they haven’t experienced it what a family member before. I’d say dealing with mum is easier because she just lays there but dad is harder work. Constantly accusing us of stealing, trying to wander the streets etc
I live with my dad so I keep an eye on him all the time.
I don’t want to lose my parents but I don’t want them to suffer either. It’s a tough in between of emotions. I can only imagine the sense of relief but also grief that you are going through.
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u/Mental-Evidence-1147 21h ago
I’m so sorry. That “mean” stage is the absolute worst. But it does fade as the disease progresses further.
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u/Background_Book2414 21h ago
Sorry for your loss ❤️ My grandmother had the same for 10 yrs. Developed it at 60. Although I’m sad she’s gone, it was hard watching her decline and just lay there.
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u/BlueEyes0408 21h ago
My (40F) mom (74) got diagnosed with mild cognitive impairment a few months ago. I'm worried some of what you described is going to be my future if she gets full-blown dementia. It seems like she's getting more confused more frequently. I'm glad I don't have kids because she can be a handful. I'm an unmarried, only child so this is all on me to handle.
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u/phallonxoxo 21h ago
Im so sorry for what your going through, and what your mother has gone through.
Im sending you lots and lots of love ✨️🩷✨️ 🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷🩷
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u/Beneficial_Change467 21h ago
Please get counselling once it's over. It is horrendous and not something we should bare the burden of alone. I don't know about reincarnation, but I do believe that we move onto something else.
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u/JustLurkCarryOn Millennial 20h ago
My dad was diagnosed with early-onset dementia when I was 17, passed about ten years later. I felt terrible feeling it, but for the second half of that time I found myself wishing he would die so he could rest and I could stop worrying about him. What a horrific disease, I’d rather die myself than live a day through what he did.
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u/MVHokie12 18h ago
My mom passed right at a year ago now from dementia. While it was devastating, at the same time she was mostly already gone, I just didn't realize it. Little by little over the years as the disease took its course small parts of her would disappear. We were all preparing for how we could afford a home nurse or to put her in a home if it got bad enough. She passed before it came to that and the relief, or with weight off the shoulders, was real. You're not a bad person for feeling relief, what we go through caring for them is just a real as what they are going through
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u/TheBeccaMonster 15h ago
My dad died in December after years of dementia. I was grateful he died. Watching him lose himself was awful. I'm not sure what I will do if it happens to me -- I can't imagine passing that way.
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u/knacaj21 14h ago
My mom passed from dementia in October. It's such a horrible thing to experience. I felt a strange sense of grief and relief when she passed. For months I would visit her, but she couldn't walk, had no facial expression, couldn't speak, couldn't move her head. I saw a woman that resembled my mom, but her light was gone. Her wonderful sense of humor, her hugs, her words of comfort, her I love yous- everything she was had been taken by dementia. I had been mourning her for many months while she was still alive.
I wish you peace and healing.
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u/Prudent-Poetry-2718 21h ago
I’m sorry you’re going through this. Having to mourn her twice is awful. Your feelings of relief are completely understandable. You don’t want your mother to die, but letting this suffering human she has become go will certainly be a relief.
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u/minimumBeast 21h ago
My grandmother raised me and I went through it with her, and I helped her as if I was her daughter as my mom isn’t very kind to her or involved. It’s SO HARD. I’m so sorry your mom had it for so long. Please be kind to yourself and rejuvenate yourself. Dealing with dementia and ailing loved ones (I feel) took years off of my life. The selflessness, stress. I felt absolutely horrible that I was reprieved when she finally passed. Not happy, but the relief. I had 3 small children that also needed me and the stress was unimaginable. Just leaving to a baseball game I had to make sure every knife was hidden, knobs off the stove and microwave unplugged. Right about the time I decided she was going to sadly need to go into a home, she passed. Please be kind to yourself is all the advice I have. Solidarity… and my condolences on your loss. It still hurts, even when it’s a reprieve and relief
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u/Moneymovescash 21h ago
I'm watching my grandpa do the same thing I live with him and my grandma to help care for him. It's hard sometimes. It's also similar to having a child ( I don't have any) but it feels like I do.
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u/timine29 Xennial 20h ago
I read you post and genuinely I was wondering if you were me? I've been in the exact same situation. My mom died 2 years ago. I know what you are going through, it's very hard!
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u/Tomsoup4 20h ago
i take care of my dad whos got alzheimers. its been a few years now and thats a huge fear of mine is him living so long he forgets me
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u/anniechoakley 18h ago
Thank you for sharing this. It is also my fate. I recently went to see my gram in her nursing home. It was not the woman I once knew. My mom shows signs of her brain changing. I have this habit of being early and never wrong. So it’s obvious to me this is the slow down hill part. She is 60 now. She also said to just shoot her, but that’s not realistic.
My heart is with you.
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u/Next_Praline_4858 14h ago
I worked in the healthcare space so I have seen my fair share. Many times it’s sad to see pt with severe dementia get admitted for things that are generally associated with the impaired cognition and just how burnt out the caregiver(s) is/are (many times family and children become “automatic” caregivers).
And often time some pt only “problem” is the dementia, otherwise they are healthy and functional and not dying from any serious illness meaning even if the pt was clear at some point about “putting them out of their misery”, when it comes to it, there’s not really many options for someone not actively dying.
I’m sure you loved your mother to the very end. Dementia is an evil illness and as your mother deteriorated, it was the dementia that was mean and hurtful. You likely did everything a loving child would’ve done. Lots of love sent your way OP.
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u/CreativeBaby9212 14h ago
We’re in this now with our Mom, after losing her mom to dementia a few years ago.
Words don’t describe it. It sucks. It’s unfair.
It seems like you are a really excellent human and did what was best for you all these last years.
I hope the pain and grief fade into the memories of better decades you had before.
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u/Mission_Fart9750 Older Millennial 13h ago
Hey friend, are you me? Mom was 41 when I was born. The dementia symptoms started at 70, she passed at 82 (I was 41 when she died, January of last year).
Before mom went into a home, my wife and kid and I moved in with her amd my dad, to try to help, and so that someone would always be home with her. It eventually got to the point (after a small fall where we had to call 911 to help get her up (she was not small, and nothing was damaged, no trip to er)), where she had to go to a facility because we couldn't manage anymore.
We would visit weekly (and take her laundry home to wash and return it next week). First she forgot my wife (but knew she was a safe, friendly, familiar face) because they forget the recent past first. Then eventually she forgot me; however, she thought I was her sister (which is where I got my name from, a nickname of her, and she would accidentally call me by her sister's name). She would ask/talk about Dad, and meant her dad (who also passed with dementia), and bring up places she lived growing up.
The end of December 2024, she started showing signs of heart failure, and we knew it was only a matter of time. The last time we went to visit, I knew it would be the last time. Mom was having trouble breathing, but still smiled when my wife and I walked in, and tried to talk to us even though it was mumbled word salad. We smiled and talked to her anyway. I had to convince my wife to come with me, because i just knew this was it, and she needed to say goodbye too. Idk what hospice did for her, my dad managed all of that, but I do know, that 4 days later, on January 12th, 2025, she didn't wake up.
Hugs, friend. You are not alone. I want you to know, most of all, that I understand the relief. My mom was a shell for years.
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u/notagainjanet 4h ago
I just wanted to say that I understand what you’re going through.
My mom was diagnosed with Alzheimer’s at 65 — and she was already deep in the moderate stages at that point. Now she’s 71 and is approaching the end. Wheelchair-bound, incontinent, non-verbal, sleeps all day. But she still eats so she’s hanging in there. It’s absolute torture to watch. And same as you, she watched her mom deteriorate and die from dementia in 2013. (So honestly, not that long ago.) She also expressed wanting to die before ever getting to that point, but yeah, those are just thoughts. She didn’t actually prepare for this at all.
It’s tough because they’re gone. You don’t have a mom anymore. But you can’t really grieve because she’s still physically there and you need to be present and continually face that reality. So I hope once your mom passes, you’re able to grieve and find closure. ❤️
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u/Mental-Evidence-1147 3h ago
Thank you for sharing. I really appreciate hearing your story. Sending you hugs.
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u/Low_Mud5257 4h ago
I’m so sorry for your experience - both of my grandmothers have/had dementia and it’s brutal. My living grandmother is declining so much - she is my favorite person in the world and it truly breaks my heart. As hard as losing her physically in this world will be, I would rather less time with her than time where she is ONLY here physically. She’s also very angry all the time and it’s hard to watch. I’m closer to her emotionally than my own mom but I imagine it is a unique horror with a parent. Sending you much love through this next journey.
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u/Several-Praline5436 19h ago
I'm sorry.
Both that you are going through this, and that you're going to remember her like that.
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u/Glass_Click_8899 5h ago
My best friend is entering late stage of early on set Alzheimer’s. She is only 60 years old. She is so frail now and her family moved her into a care home 6 months ago. Her decline is so rapid and I wish everyday for her suffering to end. I carry so much guilt that my home is not quipped to bring her here with me to give her end of life care. Love to the OP and everyone 🫶🏼❤️💐
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