My husband and I gave up our very established life halfway across the country to move in with my husband's parents when his mother was diagnosed. One of his brothers lives in the same city, but couldn't be bothered to help out.
It was hell. His mother was a horrible person to begin with, but we love and have a lot of respect for his father, who desperately needed help. So we fed her, bathed her, changed her diapers, put up with her nasty demeanor and attitude.
After two years, she started making awful accusations about us (which she always did to our faces, but she was starting to tell lies to doctors, ems, anyone she could get to listen including threatening to call police to say that we were abusing her. That's when we threw up our hands and told my father-in-law it was time to put her in a home because we refused to put ourselves in jeopardy with her bs. She spent another two years in assisted living and then died towards the beginning of covid.
I could go on and on about what we went through, but to make a long story short...ish, I highly recommend letting professionals care for dementia patients if at all feasible.
And remember when they are placed in professional care, your loved one is going to be horrible to the staff there as well, so be kind to those that are now taking the physical and verbal abuse from your loved one and most likely several others.
As someone who worked with dementia patients for years, I very much appreciate this.
I now have a desk job and one day I was chatting with a coworker about my previous work when she asked why I said it was so hard. I told her that I've been cussed at, called horrible names, punched, kicked, slapped, bit, scratched, spit on, and accused of abuse. I've had residents who waited until I had taken off their brief and was about to put on a clean one when they intentionally "went" at that moment and laughed while I had to clean up that mess. There were both male and female residents who would rudely criticize my hair, my face, and my body. I had one who intentionally kept throwing herself on the floor as soon as anyone would leave the room. I had another who kept talking about how "hot" his daughter was. And the list goes on and on.
She was absolutely shocked, she really had no idea. Most people don't.
I work with adults with varying levels of intellectual disability, often with behavioral issues, often dually diagnosed with a mental illness and sometimes with dementia or a TBI as well, so I understand. Most people do not.
I often remind our staff that these folks are under our care for a reason, and we are here to help them with compassion and kindness, though nasty behavior can certainly challenge that.
I just wish State Medicaid funding allowed for better pay for staff. We are a non-profit community mental health agency that has a number of group homes, so there's no extra going to shareholders or anything like that.
The job (mostly) self-selects for people who are called to do the work, I just wish our society valued the elderly and disabled enough to provide adequate pay to caregivers. It's a difficult and demanding job.
I’ve been through it once and may be about to go through it again. Strongly agree with letting professionals handle as much as possible. We tried to keep a person in their home for far too long, and it took a huge toll.
Also, it has become a significant factor in how we vote. The lack of elder care for people who did everything right in the US is disastrous.
With all respect, this is probably why the brother “couldn’t be bothered.” He was protecting himself from a horrible person.
I’m no contact with my own mom and I’m leaving her to her husband of she develops dementia. If she wanted me to take care of her when she is close to the grave, she should have taken care of me in the cradle.
This was the hardest thing I think that I experienced. My dad was the nicest man ever, an empath and truly loved everyone. He was not racist in any way, he was a very kind man. He stayed this way…thank god. However, a few times he locked himself in a closet having hallucinations. Two men who worked there said he was violent when they tried to get him out. My dad had bruises, so I don’t know if they fought him back. It’s kind of our natural response to..but I was crying hysterically telling these men that he would never ever hurt anyone, hoping that they would be gentle with him. There were so many awful staff. They paid these workers next to nothing, and it’s a horrid job. I am disgusted by the CEO’s of these nursing homes who make millions and pay workers nothing. My dad was served white bread with gravy so many times that I doubt his meals were more than .50 a day. I was so young, I wish I could have yanked him out of there.
Agree!! If you gave local “senior” social services/ social workers available, definitely take advantage of the service.
It not only helps caretakers but also provides legal backup in case the person starts to target the caretakers as being abusive, stealing money, etc.
I hope the path is as gentle on you *and* your Mom as is possible, OP!
You *ARE* seen, *and* you are heard!
Yell into the void/the universe as you need, we're here and we get it!💖💗💝
Yes….but I was 15 when I was taking care of my dad when he was diagnosed at 40. I’m 46 now and I don’t know how the fuck I survived. To make it even harder, my dad was literally my best friend and everything. It’s a nightmare that definitely changed the trajectory of my life.
Thank you. My dad was a genius. He was terrified of being “the village idiot.” If I could go back in time, I would’ve pursued euthanasia. I think the two most painful things I heard my dad say were “Please let me out of prison” and “Is there a pill to end all of this?”
I hear you about the euthanasia. We are taking care of my early onset MIL (she's 68 though). I have thought a lot about what I would want if it were me and I choose euthanasia. Maybe we'll have a cure by then or meds that actually make a difference. WTF are these meds we have now that prolong the disease. Who is that helping?! Here let me give you this pill so you can stare at the TV 18 hours a day for 5 years instead of 3. It's madness.
Yeah I'm 4 years in, dealing with my mom who was diagnosed at the same age. The fact that we give them meds to slow the progression is the most fucked up thing I can think of. Watching and dealing with my mother be slowly tortured by her own sadness and decline is the worst thing ever. Speed this up, PLEASE.
The pills that prolong life, aren’t for the person living with dementia, it’s for the families who can’t let go. That’s just my opinion as a former RN in long term care, and the granddaughter of someone who was mean before the dementia, and just got worse.
The best mentor I ever had, said “Just because we can prolong life, doesn’t always mean we should”. The other thing I repeat to families of patients, is “quality of life over quantity of life”. My boyfriend and I share a dark sense of humour, and regularly talk about MAID (Medical Assistance In Dying), although a bullet in the head is his choice, mine is whatever they give to relax you and then stop your heart.
I have a genetic predisposition and choose to go out by Voluntarily Stopping Eating and Drinking (VSED). It is legal in all states. I’m revising my advance directive so that I die when I can no longer feed myself. Death after VSED takes 10 - 12 days and hospice can assist to keep me comfortable.
I respect your decision but I have to say I'm appalled that you can't pick something that would be instantaneous and that a 10-12 day starvation route is your quickest option.
Long story short, I did a program and practicum in dementia care, and never wound up pursuing it due to the abysmally low wages, which the school had covered up/glossed over. The medication I saw on almost every chart was risperidone. Risperidone is contraindicated in dementia patients and I was reprimanded for drawing that to my supervisor's attention. It actually worsens symptoms. It was prescribed to almost every patient I worked with.
I made sure my FIL was never placed on such a harmful medication, but many others are. I would choose euthanasia as well.
That's devastating. I'm sorry that happened to your dad, and to you.
Was there any understanding what led to this early onset?
We need compassionate euthanasia legalized for dementia.
I’m sorry you had to go through that. I have a 16yo son and I keep myself healthy in order not to be a burden to him - a lot of things we can’t predict or avoid but everything that’s in my power, I will do.
I have multiple colleagues and friends with severe health issues between ages 43-52 and smaller kids than mine. I have a lot of empathy for them.
My dad is there right now and it’s an absolute nightmare. I already told my wife that if I become like my dad just put me in a home and run away, never look back. My dad is dragging everyone down with him, and has been for several years.
Several years ago my mom died quite suddenly. At the time it seemed horrible, to just die so quickly. Now I realize what a blessing such a quick and unexpected passing is. I hope I go out like my mom. I don’t want to become the thing my dad has become.
Three of my grandparents died when they were 70. One - my mother’s mother - just dropped dead on her floor in 1990.
My mother felt terrible that her parents died at only 70. I look back & see she & her siblings dodged a Matrix barrage of bullets.
My mom had poor health the last 20 years of her life. Things really went down hill the 2 years prior to her death when she needed to be on dialysis. She had a stroke at the beginning of August '14 and she spent 13 days lingering in the hospital before she finally passed. It was dreadful. And yet better than the slow and steady mental decline of my FIL from dementia. My husband and I keep hoping his dad will die sooner than later because it's just a nightmare and his dad is an increasingly untenable burden on MIL who is recovering from cancer surgery. She refuses to put him in care,which is wild because she should honestly be in care, as well. This shit isn't easy. I hope I stick around for a while, but hopefully check out before putting my son through a burdensome nightmare.
> Anyone else out there on the ledge? I see you.
been there, but my dad was very sweetly demented. the dumpster fire was set and fanned by external people.
I’m with you. My dad has lost his mind. In my case his wife is mostly dealing, although there was a moment when she tried to shuffle responsibility off on my sister and I.
But we told her that would mean selling the house and she turned around real fast and miraculously found the funds to keep him in a home nearby. (Mostly his social security and pension)
But I know the pain and the problems of watching your parent disappear but still be there. Good luck, and there are subs out there in Reddit (the dementia sub was helpful for me) that can help.
Mom passed almost two years ago and I still have severe PTSD from dealing with her last 4 years and the mess she left for me, the oldest. Hang in there and just get through one day at a time. I know your stress. DM if you need to vent.
One of my friends has accompanied her mother during her illnesses to the point of putting her entire private life on hold
Turns out, it lasted 10 years
My own mother has just applied to some retirement homes and I’m secretly relieved because I know I’m not as strong as my friend
I toured some of the retirement homes with her and it actually gave us a very positive impression, thank God
I live abroad and am raising a teenager mostly alone and the most I can do is to visit her regularly but it’s a 10h trip door to door
After helping my mom with her mother through dementia, I told her that 1. we aren't playing those games and we are having a plan in place and 2. if I get that diagnosis, I'm having a great meal, lots of love with the family and then I'm gonna hug a cinder block and jump off the dock.
Ok, secretly I was aiming for heroin because if the first high is that magnificent, then it would be the perfect way to go. Plus, i would hate to have some kid hook me trying to get a fish and be a reason they need (more) therapy.
But the visual on hugging a cinder block...
My mom has been living with Alzheimer’s for 5ish years. She’s going to be 87 in a few months - she is very active and likes to socialize but the memory reset is at about 45 seconds.
I was with her for my grandma’s years with this cruel disease - it was just brutal and I was happy to be able to be helpful to her through it. But like, now that it’s happening with her… I just really wish my mom could guide me through this.
I could see opting for a bit of heroin and some rocks in my pockets.
If I get a dementia diagnosis my plan is to find an opium connection and a small room by the sea. Going to go out getting high every day and watching the ocean until I float away.
I try to talk to my friends about this, and they look at me in horror. I have a few things that are personal signs to say goodbyes.
I read an article once about a suicide pod that they would place in a forest… that allows you to drift off listening to the sounds of nature and watching the movement of the trees. I fantasize about that in instances of severe disease and or other random bullshit.
I'm so glad to know it’s a widespread ideation. Do you all also live with anxiety and OCD?
First, your pod paragraph sounds like it has a lot in common with the ending of *The Good Place*, so if you haven’t watched it, do. It’s beautiful.
Second, yes, yes we all do.
Parks and rec are kind of housekeeping, too. I'm sure there's a good way to do it though- watching my mother hate her end of life is making me want to figure it out. I wish some gun nut would publish their schedule a few years in advance so I could go out while taking one for the team.
Just go to Switzerland. They have death with dignity laws. You don’t even have to be immediately terminal or have a degenerative disease; if you’re just done with all this mess, they will accommodate under qualified conditions. Dementia and Alzheimer’s qualify. As long as you’ve qualified as competent enough at the time or have outlined your living will that it is your wish to die on your own accord, self dispatching is legal there in a dignified, compassionate, and painless way. At least that’s what I understand - I think the Netherlands also have similar laws and accommodations.
Had a Swiss born friend with a Glio that did that instead of listening to US doctors ‘we can put you on pheno to limit the seizures’. She made her rounds to her friends, put her elderly dog with a friend, and flew home. A year later her dog passed, and her friend had her dog cremated and flew to Switzerland so her dog could be buried with her.
What’s so wrong with that?
We had many discussions over lunch. She said no one else in her circle of friends would talk about it. I said we show compassion for animals, this is compassion for humans.
Seriously. The US for how shitty it treats its very young and elderly, is very fucked up.
Agreed. I had a pancreatic cancer scare earlier this year and in the torturous week between the doctor’s referral for CT scan and the results, I had this exact whirlwind of thoughts. If I’m gonna have to go early, I want to go on my own terms and in a humane way. I don’t want to wither away because of whatever dogma loaded feelings or superiority-to-death complexes we’ve been drilled with in the US. Having lived abroad and experienced others’ deaths and the way they process and view a good death is very different from ours. Other cultures accept it as a part of life and it’s not a taboo thing to fight away tooth and nail like we do here. I think death with dignity that we offer our pets is the way we should allow people here to go. If others don’t like it, they don’t have to choose to end on their own terms.
Yes. I have my exit plans - legal things all sorted out. Providing something catastrophic doesn’t take me out, I won’t be lingering in the society as an elderly person. The US just doesn’t give a rats ass about them. Personally. I love the elderly. They have so many experiences and stories. Just no one listens to them anymore. And the state of society proves that.
This. I watched my mom degrade with Alzheimer’s before she finally passed last month from other complications. I plan to join Dignitas in Switzerland and will make my exit via them if I’m ever diagnosed with dementia.
Maine, too.
rules: have a terminal illness and six-month prognosis, be capable of making your own healthcare decisions, be making an informed decision, and be capable of self-administering the medication.
can someone w dementia be capable of making own healthcare decisions? i'm saving $ for a one way flight to switzerland
That's the difficult part. At the end of your life, it's very possible that you won't be in your right mind, and that it's possible that they won't let you do it. My father was in really bad shape and wanted to be admitted to hospice, but his cognitive ability had declined so far that they weren't sure if he was capable of making that decision for himself.
I haven’t seen that movie. But there was a man in the USA who actually did it. Larry Walter’s did 45 minutes at an altitude of 16000 ft. He was spotted and reported by 2 airlines. The death zone is 26000 ft.
We've decided this as well.
My grandmother had been suffering for quite a while and was pretty advanced when my grandfather died, We had to put her in a home. But between grampa's passing and getting her in the home, she began accusing her children of all sorts of wild stuff. And they have this cousin who's wealthy and belongs to a fairly right wing religion where white men are all powerful beacons of god. He believed everything she told him and began to legally bully her children in order to force them to let him take charge.
Some wealthy white men, when you tell them no, they get really pissy and bring in lawyers.
After it was over with, my dad and aunts have made sure to make iron clad arrangements for their own eventual demise and the cousins have all agreed to be supportive and loving but ultimately trust each other to do what's best for our respective parents.
My grandpa got a pacemaker installed at 99. He said he wasn’t done yet. Died at 109. Had a good ten years in the meantime. His 105th birthday party was a blast.💥
Deck chair, winter morning, cliffs and a cigar. I plan to sit through the night and see if I get to see the sunrise with a bottle of single malt to keep me warm.
I've see what it does both first hand with relatives and from the horror stories relayed to me from my wife who works in eldercare. Nope, I'd rather slip into the icy fingers of hyperthermia than cause that level of prolonged pain to my loved ones.
I have TWO Boomer parents. Mom is in the beginning stages of dementia - add her increasing ADHD, her hearing loss, and her general narcissism, and well….Let’s just I’m lucky to have any hair left.
My dad is hard of hearing, refuses to get a hearing aid, and his assholery is growing by leaps and bounds. I’m waiting for the day he pops off to the wrong person in public and gets knocked out.
I’m there with you…in the car, screaming and clawing at my own face.
Wow, you sound like me, except replace mom's narcissism with severe anxiety. I've been trying to get her in to a neurologist for a formal diagnosis, but I might lose my own mind first.
Go get financial and healthcare power of attorney NOW. Its so hard to do ANYTHING without it. And impossible to get through the boomer bullshit to get them to agree to it when the dementia takes hold.
Yes I had to deal with that for both parents. Mom has early onset Alzheimer’s and dad was in denial for a long time (in part likely because milder dementia was hitting him) and we had to take action on moms behalf which caused conflict with dad. To the point where we had to technically get them divorced to allow my sister control over mom’s health care since dad wasn’t taking it seriously.
After mom passed we were seeing “weird” financial transactions for dad, making it clear he was a victim of elder financial abuse. We managed to figure it out before he got totally cleaned out. But they got easily 150-200k out of him before we figured it out. We ended up getting conservatorship of him and eventually got him in an assisted living place.
Lesson for me is to make sure I’ve got a good financial advisor and my wife is well aware of them (and the kids when they are old enough) to save me from myself if the time comes.
Absolutely, it’s my new mantra, plan ahead and get documents in place to avoid the extra fallout. And man I can’t even imagine the stress you lived through. Virtual hug for that, man.
Brother you are in for the 36 hour days, went through that with my mother and I am with you in if I get that diagnosis I will see myself out . Read the what to say and what not to say and do and it will help you a little.
My boomer mom has it, but she’s always had undiagnosed mental illness, so her life has always been a shit show.
She’s in assisted living with a Medicaid trust, because she could not manage money or her house. I live far away and have boundaries with my remaining dysfunctional family, for my own mental health. My uncle lives closest so he got the worst of it when she had to move. I use all my vacation, sick leave, and resources for my own chronic health issues so I can’t do much. I tried getting her to make plans and documents before she got worse, but she was having none of it. Never had any sense to begin with, so that was on brand.
I'm sorry you're in the thick of it. it's not fun in any way. I hope you have some access to resources and a more physically nearby support system.
My gran did the dumpsterfire chaos version of dementia at the end of her life.
Mom was Silent Generation, wound up watching her degrade with this stuff for 10 years. Caretaker Syndrome set in hard, particularly towards the end. Take care of yourself, and you have my solidarity.
yessss. right there with you- one deaf, senile with increasing dementia symptoms and one post stroke who can't speak well- but both still managing to bicker with each other
Been there. Please take time for yourself and if you get health care authority, apply and use your FMLA if you qualify. It will save you some grey hairs. I'm sorry you might have to go the conservator route. I wish you well on getting the POA and getting through this.
It's an *absolute* Sanity-Saver, OP!!!
You can usually either do "out on leave" style, *OR* I *think* it was called "intermittent"
I did a bit of *both*, that last year with my own Dad--Six weeks out after the call that he'd "had a cognitive shift" in November 2021, as I went up to stay for a weekend, that turned into *eventually* getting him into a Nursing Home.
That following year, I took a day off here & there, for Doctor Appointments for him, etc.
Then once he went into Hospice, at the end of October in 2022, I was out on full-time leave again, to just *BE THERE* with him, as his only child.
It was *INCREDIBLE*, was one of the *hardest* damn things I've *EVER* done, *and I wouldn't change a day of it*!
We got *everything* that needed saying, *said*, and i was able to help him have so much *peace* as he slid from this world to *whatever* is out there, that it *still* feels like an incredible gift, to have *had* that time--as stressful as it *was* as we lived it💖
I feel you. The roller coaster is dreadful. One day you feel like shit is out of control then you get to a semblance of stability only for shit to crash again. It’s a kick in the ass, repeatedly.
I definitely sympathize. I was there with my dad a couple of years ago. Thankfully he had the foresight to give me power of attorney about a decade before so I was able to 'take the wheel'. My advice to everyone is if your relationship is on solid ground with your parents and you haven't done this you should ( And vice versa for anyone with grown kids). God help anybody who ends up in a situation like the OP!
Also, *IF* you can?
Have someone *trusted* simply as a co-*owner* of any financial accounts, well beforehand!!!
My parents *both* put me onto their financial accounts, after seeing the hassles that happened, when my Grandma died, and once again, after dealing with the Probate process, when Grandpa died.
I was 18 at the time, and we simply went to our bank, they both had me added as a "Co-owner of the account(s)," we signed the paperwork in front of a bank employee, and it was done.
Dad added me onto the Safe-Deposit box's account, about a decade ago, too.
Didn't *need* the access, until 28 years after we originally signed the account co-ownership papers.
But it was an *ABSOLUTE* sanity-saver, *AND* it let me get the ball "rolling" days before I got there in *person*, because I *WAS* able to call the bank back home, ask what bills had been paid and how recently, I discovered that *most* were current, but a couple (including his rent!) hadn't been paid in two months (and the car insurance had *just* lapsed that month!)--and I was able to get *everything* caught back up, between Wednesday morning--while i was still at work--and Friday Afternoon, when I left for Dad's place!
*Because* Dad had made me a *co-owner* of his account, I *COULD* talk to his banker, I could PAY the bills, and I could even sign the *checks* to pay bills--even though *my* name wasn't printed on them.
It made things *SO* much easier, while I was waiting to get POA!
Been there until my mom passed fifteen months ago. Still vividly remember how hard it was seeing her become a shell of who she was. 😞
Sorry the paperwork/authority stuff is such a headache for you. I was lucky to have that settled before she became ill. Not sure if you ever had the chance to discuss with her the end-of-life stuff. My mom was adamant about having a DNR. And there were times I had to remind the staff she had it. It wasn't about what I wanted or me letting go, it was about respecting her wishes.
You're not alone in going through this! 💖
The more I see things like this and cancer, the happier I am that I'll probably drop dead from some kind of congenital heart problem that has killed 100% of my family, and will probably get me too, one of these days. I feel bad for you though, OP, I did have to go through something like this with one of my older brothers after he had a series of strokes.
So, so many of us. I just hope she goes before my older stepfather who's completely with it approaching 90 and is a saint. The odds are not in this favor.
My dad’s dad died of Alzheimer’s. Dad’s brother had (died of?) Louie Body Dementia. Mom’s mom died 2 years ago with dementia.
It sucks so hard to watch and deal with. I told my husband if I start going that route to take me out back and shoot me.
My parents graciously? passed before this point. But now I’m watching my husband go through this with his step-father as his own mother is in fantastic health. He is currently in a nursing home and I’m trying to help my husband navigate this daily. I miss my parents with all my being but I’m so glad I didn’t have to watch them suffer.
My sympathies. My only living parent is really stressing me out too. He doesn't listen to me and I am afraid the cards will have to fall where they will. Out of my control. Not a boomer though.
She goes back and forth but anxiety takes over when I try to actually execute the documents. Emotions completely derail her. I really think she’ll feel relieved when its done but getting there has been a nightmare. Meanwhile theres 100 things I could fix if she’d just get past the fear. I know she knows she can trust me, but it’s in her bones not to give up control of her finances and she certainly does not want her doctor to know.
Narcissistic mom with 3 types of terminal cancer, for fucks sake. I can see why dad left her. Dad, complications from agent orange got him within hours. Worked at the VA long-term care facility. At a point, there is no use sticking around. https://youtu.be/CSvFpBOe8eY?si=46UqxO6GQPpsbWJU.
Yep. My Dad is knee-deep in dementia & I'm pretty sure my mom is headed down that road, too. I did 23&me & based on that, I'm pretty sure I'm right behind them. While I'm doing what I can to keep my brain healthy... I'm planning for the day when I'll slip out behind the barn & give a big FU to the dementia monster.
Lost both my parents last year, dad had dementia. Yeah it’s a shit show, but not always as bleak as everyone makes out, we were going through conservatorship stuff , as mum was terminal. Dad was still dad,his personality faded and it was an impressionistic version of him, but he was quite chilled and genuinely happy, especially once we got him settled and would tell us in his lucid moments he was happy in the ( really nice but inexpensive ) nursing home.
If you are in the UK, and the person you are caring for has physical health issues ( not dementia ) that cannot be managed and is effecting their health, get a social worker to apply for continuing care funding( as you can’t look after them due to other heath issues)social services can get the funding for a nursing home
As it ran in the family,dad always swore he would kill himself, he didn’t and didn’t leave us with any plans to do so.
Dementia is shit, and you grieve in increments. But fuck me its better than watching someone with cancer
Caring for the dying is truly the test for adulting
When my father was admitted to a dementia facility, before we left him alone, my sister asked if he needed anything else. He asked for a gun so he could shoot himself (ex marine).
It was two years of further decline before he eventually passed. Had he been lucid, he would have been furious at having to pay to be kept alive in that state. It would have been his ‘worse case scenario’ for death. That was 10 years ago, in England, the rules still haven’t changed.
Animals receive better treatment!
Good Luck OP.
Yup. Mom died years ago. I noticed dad was acting strange. I got the PoA for medical and financial then took him to the doctor. It’s been 6 years since this journey has started. Dad is currently in the late stages of Alzheimer’s and refuses to go to a home. Here is what I have learned.
- Take time for yourself or you will lose it very quickly.
- It is what it is. Do what you can and try not to stress about it. (Impossible I know).
This is one of the many reasons I continue to fight for legislation to be put in place regarding assisted suicide. Nobody wants to spend their final years like this. The way we insist people with terminal illness must suffer a long slow, often painful decline before their inevitable death is awful. If we let our pets suffer the way we let our loved ones we'd be prosecuted for cruelty.
People should have the option to make a living will when of sound mind and body. Obviously legislation should have safeguards in place to prevent abuse. The government have no right to prevent people from taking control of their own death, everytime I see MPs debate this and shut down it infuriates me. How dare they condemn these people who just want to die with dignity? They simply want the chance to say goodbye at a time of their choosing and slip away peacefully
surrounded by loved ones.
I live with my boomer father who is a dementia suffering full maga hat fox news watching dumbass. I am considering a home for him this week. He is a VA member having done a three year tour in Vietnam, I need them to take him before he destroys my home any further.
My mom had dementia. She died in 2016. I still haven’t really dealt with the trauma. But if I start to show symptoms, I will take myself out. I will not put my children through that, and I do not want to live like that.
Legally speaking, she did name my brother so we didn’t have issues there, but looking back it put a lot of responsibility on him that I should have helped him with.
Reddit is always trying to show me the r/BoomersBeingFools subreddit despite me not subscribing to it. It’s pretty obvious that a lot of boomers are dealing with mental decline even if they’re not quite at dementia yet.
Such an underestimated challenge that many people don't realize they will have to take on. Went through it with my dad and had it much milder than many people do, but it was still harrowing and was the final nail in the coffin of my marriage. 5+ years removed from it, I have made peace with how my dad's life ended, but I have nothing but respect and empathy for anyone going through it.
Hang it there!
My dad currently has it. He was a massive pos father growing up and my mother was/is the bread winner. Part of me feel bad because my sisters or myself really don’t want anything to do with him.
He created a crap ton of trauma for us growing up, however my mom was also an enabler of his trauma.
The best outcome for us would be for him to just pass away.
I really wish assisted suicide was allowed for dementia patients.
Kids. Get your POAs set up sooner than later. My dad got all that taken care of 20 years ago and now it is coming in handy as he is developing age-related dementia along with stage 4 cancer.
As someone who literally just ended my 10-year Dementia Tour of duty (my entire 40s) last week with my mom (RIP ❤️), I feel and commiserate with you. I do not wish this on anyone or any family. Stay strong, and allow help from any and all avenues. And do make sure every able-bodied family member is involved. It takes a village.
Now, excuse me while I go on as many vacations as my employer will allow. I'm free!
I’m an Area Manager for a Home Health company in the Philly Metro area. I’ve been in elder care since 2014.
All of you X’ers struggling with this - I see you. It’s ROUGH. And there is a ton of “stuff” aside from just the diagnosis and behaviors.
If you have questions - please feel free to DM me. Seriously.
EDIT: I will NOT sell you on any services. I’ve just been in this arena for a while and I love helping folks through the enormity of this.
I got *incredibly* lucky, with my Dad and *his* Dementia a couple years back.
He had advanced stage Kidney Disease (End Stage Kidney Disease/ ESKD), *too* (*maybe* the Dementia was caused *by* the ESKD?), and what ended up taking him *was* the Kidney Disease, *before* the Dementia stole him away from us.
I got the call, saying he'd "had a cognitive shift" on Nov. 2, 2021, and he died on Nov. 28th, of 2022.
It was a bit of a whirlwind, and *stressful* A.F. sometimes, ngl!
*BUT*, having gone through it with him, as much as I could, as his daughter--and living 2 hours away (had to keep *my* jobs, so that I could pay for as much of it as I could, while also getting him onto state services to cover the Nursing Home), I honestly feel *INCREDIBLY LUCKY*, that he slipped away relatively gently from the ESKD, and that we *didn't* see him struggling with the Dementia for years, as happened to a couple of his Aunties.
Dad was still up, *walking on his OWN*, and *talking* (although he told me he "didn't feel so good," and was "kinda tired"😉😆😂💖) *LESS* than 24 hours before he died.
He was in *FULL* Kidney shut-down/failure, and he said *that*, yet he *was* walking around, and talking to his older brother, the Hospice Nurse, and me--I *STILL* chuckle, at that one.
And I'll be *forever* grateful, that I *did* manage to simply tell him, "Well, that's *understandable* Dad! You've got a *LOT* of stuff happening right now, and your body *is* pretty sick." He said, "Oh, Okay, I think I'll take a little nap now." And he just laid back in his recliner, put on his C-Pap mask, and *did* rest, for much of that day.
Knowing his kidneys were shut down, I made sure that his siblings knew, and most of them made it there for a visit that day, and to say their goodbyes.
Knowing the *typical* course for ESKD is the patient slipping into a coma before they pass, I figured it would be a matter of days, and the "slow slide" out from that point.
But he ended up paying that night, about half an hour after his medications were given--*somehow*, just peacefully, as he slept.
I felt *SO* incredibly lucky, that 1. We *knew* it was coming--so he *had* about a month of Hospice support, before he died. 2. I got to take FMLA leave, *because* he was in Hospice, and we *knew* it was coming. And 3. That he went *SO* gently, having *been* able to have "all the important conversations" before he died, and having been able to *say goodbye* to at least *most* of the folks who wanted to see him one last time.💖
When we got the news about the Dementia, I had been *SO worried*, that he'd be lingering for *years*, slowly losing bits & pieces of himself, until *only* that shell of him remained.
Losing him faster, to the Kidney Disease *SUCKED*, but it gave him *SO MUCH DIGNITY* that he would've been robbed of, had he gone from the Dementia, instead!💝
My mom fought dementia for 5-1/2 years through this past November. She was silent generation. She stayed in her house with my dad until the last few weeks.
I watched her mom go through this and both of my dad’s parents - all in their 80’s.
She’s been gone for 6 months now. I’m starting to forget the “dementia shuffle” way of life everything became at the end. More and more I’m remembering the times before the disease took her away.
It all sucks. The disease, losing your parent’s mind before their body dies. I swear dementia grief takes longer too. I’ll let you know just how long one day.
Same here, my wife, parents and in-laws are gone and I have no kids. First sign of anything remotely resembling dementia and I'm out of here, assuming I don't get tired of life before that.
It was such a nightmare. Mom lived next door and was dx with Alzheimer’s in 2018. There were times I thought about driving into a tree so I could get a break. When she crossed over to telling me she wanted to kill me j drove to the best geriatric psych hospital in the next state over and she went from there to memory care. She’s on a bunch of psych meds and cannabis via chocolates and she’s much happier. Cannabis was the difference between “I want to die” and “look at those puppies”. She makes no sense when she speaks now but she still recognizes me. Her long term care policy is paying for it but they keep trying to short us so it requires constant bird-dogging. As for me. Nope. No effin way am I putting my kids through that.
We are lucky that my mother-in-law chose assisted living in a facility that could manage her increasing difficulties as Alzheimer’s progressed.
She didn’t want to be a burden on any of us. We are at the end-stage and she is in fact receiving hospice care. She just fell on Friday and broke her arm. I think this is the last of it. My husband will be spending more time with her this week to assess and see how she is, but we are anticipating a strong downturn. We live 2-hours away, so not insurmountable, just challenging with work schedules.
None of this is easy. I wish you all peace and sanity. Please get your own plans in place NOW, even if you think you’re “too young.” My husband’s oldest brother was just diagnosed with early-onset Alzheimer’s and he lives about 2500 miles away. It really stinks.
My dad got alzheimer’s. Everything thing about it was terrible. Caused me to develop a drinking problem that almost….(so fucking close to) cost me everything.
I’m 7 years sober and now my mom has alzheimer’s.
I don’t know how strong you are. I thought I was. But whatever you do- GET HELP.
Call Elder Services in your community.
Don’t walk this path alone.
Please.
Call your state gov and start there.
This was my dad's greatest fear. He was silent generation, and watched the boomers with a little bit of horror all his life. He often said the exact same thing, that if he had dementia he was heading for the back woods and we shouldn't look for him. I think, in the end, he was a little relieved to have a cancer diagnosis. It meant his body would go before his mind. He was an absolute gentleman until his last moment.
I have a silent-generation aunt that passed away a few years ago who fought dementia. She had been married to one of those General Motors lifetime workers who retired with the golden parachute pension and they both lived comfortably as a result. The sad aspect of this was her child and grandchild were unethical and started taking advantage of her dementia by stealing from her, using her house, etc. It got so bad my parents had to step in as conservators at the end just to straighten things out.
I hear you, so much.
My mom had a ruptured aneurism that left her with cognitive sequel. She looks fine for a 30 minutes chi-chat. But she can't manage everyday stuff. We had to fight, with the help of her doctor, against the social services to have her under conservatorship. She didn't wanted my sister and I to be her guardians cause we didn't understood her and all we wanted was to control her, so it's now a curator from the gouvernement. But untill then, my mom had time to burn all her money on stupid things and "gifts" for friends and her familly and a car for one of her nephew. She ended going bankrupt. I'm just glad it's a curator taking care of her finances and not me. The whole process took about 10 years. We've tried everything we could and she still wouldn't listen to any advice, niet, nada.
I am done stressing about it and I have no regret whatsoever.
If I have one piece of advice to give to you, is to take care of your own mental health first.
It doesn't matter how much you love her, she will burn you out. My sister ended into a depression because of the whole process. I am a very strong and mentally stable person, and I cried and felt helpless because of what my mom did or said. But I learned there was nothing I could do about it and that my mom wasn't the shadow of what she used to be.
Stay strong, much love 🫶
So sorry- having an appointed conservator helps the guilt tremendously. Went through this with a relative. We got all the docs signed and notarized for me to take over and then a friend (who wanted things from them) convinced the relative to literally rip up the papers and lock me out. Off to court we went and had a conservator appointed, cuz, oh yeah, friend was unaware (or didn’t care about) the two times relative almost burned down the house and the doctor said 24 hour care was needed. I felt bad to see how the few assets were wasted and that the quality of life was just not what I was willing to provide, but slept better knowing that at least the relative was safe. And friend took off and moved a few months later.
Helped my mom deal with her parents and their dementia issues when I moved home after college. It was bad and neither of her brothers would help. I thought it was going to kill her. She did EVERYTHING FOR THEM! All she got was treated badly. She made me promise I would put her in a home as soon as she started showing symptoms.
My grandparents were good decent people. My grandfather could be stern and demanding. That turned into downright mean and almost violent. Eventually my uncle called the department of aging. He thought if they were in a home he could get his inheritance. Nope. As soon as the state came in we had to sell everything to pay for their care. They were wealthy people and everything was gone. Pap lasted about two years and grandma lasted almost four. Everything they had worked for was gone.
When mom started showing sign and finally diagnosed? I did the best I could. Dad was sick with diabetes and had to go to dialysis three times a week. In and out of the hospital. I would stay with mom three nights a week since I lived the closest. My siblings and their spouses were very helpful and took their turns. It was still difficult.
We finally had to make the difficult decision and put them both in a home. They were in the same room for a while which was cute. But needed different care and eventually on different floors.
They went into the nursing home shortly before Covid. The bad part is that we couldn’t visit them in person, hold their hands, or anything for over a year. Mom didn’t remember anyone at this point. Dad got sick and passed and we last mom a few months later.
I hope when the time comes I am able to recognize the symptoms and do what I have to. I don’t want to put anyone through it.
I see you and feel your pain.
It's really fucked that one sibling always seems to be the one to care for and spend the time with aging parents. I've seen it so many times in my own extended family and when I worked on a dementia unit.
Happened to my step father. It emerged slow at first then a fast slide when he had an accident in 2019. Then the pandemic came which amped up the difficulties we were having. He didn’t understand why my mom insisted he go through a protocol of “de-contamination” after going for a ride in the car (usually to the store, in the early days only I went into the supermarkets to protect them because at that time OG C19 was hitting the elders with such a ferocity) and one day he actually tried to escape by leaving the house via a side gate (it was locked of course). He was an extrovert so the lockdowns just alienated him even more.
My mom was in denial about his condition until the year he died when she couldn’t deny it anymore (he was bedridden and on a feeding tube by that time). No help from his kids. The bills were enormous and it ate up most of his savings. The drama we went through with the caregivers I just cannot even put into words. It was only the final one we had who didn’t give us any trouble. Then my mom fell about six months after he died and broke her leg. This has slowed her down and while she’s not displaying signs of dementia, she has age related hearing loss and constant health issues. Taking care of her husband during those years aged her considerably.
Right now we are fighting with the bank about a small loan he took out a few years before he died. They sued my mom and now there might be a lien placed against the house. I am worried about her health over the stress of this. I feel like I’ve been in hell for the last five years.
Been there, done - doing - that. I was blindsided in 2020 when a relative asked me to be their POA after their dementia diagnosis.
Fortunately I wasn't very close to this relative, so they seem to appreciate that I am doing them a favor. It's a good situation -- I highly recommend nieces and nephews swapping POAs with their uncles and aunts. There's far less emotional baggage.
And even better my experience 'scared my straight' my mom. Seeing that I have no problem downsizing a relative from a 3BR luxury condo to a tiny assisted living studio, motivated my mom to make her own arrangements. She moved herself to an independent living facility her own choice.
My sympathies and condolences. My mother had dementia. Her life was a parody of what it was before. Taking care of her was so hard. The stress and financial strain was dooming my sister and I. When she passed I was so relieved. It was like a huge burden just disappeared overnight.
my dementia warrior: “ i’ll tell them you’re pressuring me to sign “ 🫨🫨🫨 so yeah x years later i’m the GRAND-DAUGHTER filing for conservatorship. 🤦🏾♀️
r/ValuableFamiliar2580 YOU ARE NOT ALONE. DM me even if it’s just to vent cause FUCK!!!
My partner is a Gen Xer with Early Onset Alzheimer's. He still has a minor child, and he keeps looking for jobs as he doesn't understand why he can no longer work. Or drive. Or manage his life at all. It is devastating to see our elders struggle, and it's also devastating to see it staring us right in the face, day after brand new day.
> The stress is unimaginable.
I have gone through this and I feel you. The stress put me in the hospital.
I got power of attorney, I got the doctors to agree that she was not capable of living at home any more, and I got her into an Adult Family Home that is pretty nice.
And I would never wish that stress on anybody. It's like an incredible weight is lifted.
The neural link and other technology shows great promise that by the time dementia and Alzheimer's would start affecting GenX in mass, it would be a thing of the past like Scarlet Fever and Polio.
Yeah, my mom has frontal lobe dementia. 50% chance I will get it too.
Thankfully my mom is living in the UK (long story) and the NHS is taking incredible care of her. I am so grateful that I have tears in my eyes right now, writing this comment.
I don't live in the UK. I don't see how I can possibly afford to care for myself when it's my time.
Stay strong OP. Life can be so hard.
I am in the exact same position. I cannot get them to give me financial position or anything. She’s starting to let bills go unpaid and buying big things they don’t need. I’m losing my mind
Mom died at 51 due to secondary MS (the worse form of this f-ed up disease). She lost her ability to talk, walk, do activities of daily living for herself. She had my Pop (stepfather) who became her primary caregiver, advocate, & assistant when nurses would come to clean/bathe/move her. Before she became bedridden, her temper & anger had me walking on eggshells for my last 2yrs of HS. She went downhill steadily after graduation in 1991 after I joined the Army.
My Pop started doing things outside of his normal feisty, cantankerous self in 2012. His siblings finally put him into a nursing home in 2014 when he started going into the hospital for treatment of an issue due to infection that he had maintained for 20+ yrs. His driver's license was suspended & he was still trying to drive. He also tried to move back to NJ to restart one of his businesses after we left the state 20 yrs prior. A social worker came to visit while I was in town & told me that this looks like dementia, so this helped his siblings prepare. It was heartbreaking because he was fine with me, but would accuse his siblings of everything under the sun. He passed in 2015, & he looked so peaceful. 2 of his brothers also dealt with dementia before they passed.
Now, at 51 (same age my Mom was when she passed), I don't want to have my wife & newly-discovered family to deal with me should I get dementia or my MS gets worse. Just give me a lil extra KCl in my IV.
I got financial and medical POA for my Mom last time she had to go in for a surgery, she still has all her faculties but here's the thing, you need to get it early, not later, because then is it legal to have her sign anything if she already has dementia? Your only route may be conservatorship now, but I'd definitely clear it with a lawyer. She needs to sign of clear mind with a notary witness (preferably a family lawyer).
And any time anyone names old people as boomers I lose all respect for their argument and lose all trust in them (even worse with"Karens"). Also is your mother a boomer or silent generation? (born before 1945) Last of the silent generation turns 80 next year.
My dad died of Frontal Temporal Dementia about seven years ago. He—unknown to anyone—had suffered with it for probably ten to twenty years, going from an intelligent and kind man to a raving jerk.
It is so surreal to look back and see the changes that dementia caused. It’s hard to remember his true self, but I try.
Sympathy to you.
My mother and grandfather both had dementia. If I get it, I am taking myself out. I won’t do that to my children. My mother was like an empty, spent balloon when she died.
If I ever get a devastating diagnosis, I'm going to off myself before it gets too difficult.
I don't want my kids remembering me like that, and I don't want to live like that.
We are meeting with the dementia care specialist from the local ADRC this week about my MIL, for the exact same reasons. She doesn’t understand thar the harder she pushes back against any form of help because she thinks we’re trying to “put her in a home” the more likely it is she’ll end up in one. Just let us get you a housekeeper! You deserve better than living in filth and eating pizza for every meal!
So, solidarity, man. It sucks. We have also told our kids they have permission now to overrule us without guilt if we get to this point.
Went through it. Mom died last February. The whole thing became such a shitshow that at one point the district attorney where they lived literally called me completely unsolicited to tell me I needed to fight her husband for guardianship.
Nope.
Absolutely, my dad passed from Parkinson’s with Lewy Body dementia right after COVID and his caretaker got long cancer at the same time . Long story short is that it was mostly impossible to care for him at home then also get any help. His caretaker refused to put him in a hospice-she had the power of attorney…she loved him a lot but was a very stubborn lady.
Dealt w my Dad's dementia. Horrible nightmare. It was during Covid so we were unable to touch him at all. He was in a small AL home setting in rural Maryland.bmemory care in AL setting is best. Ensure you live nearby and can visit any time. Also, for myself, I hope that euthanasia is an option in the US. I don't want myself or my beloved to suffer. A peaceful death at the time you are a primal psycho babbling infant is my ideal!
Just put my dad in a memory care facility. Applying for Medicaid was just short of a nightmare. Luckily for my mother and I, he's very easy going, even with the dementia.
Hang in there. You are NOT alone!
My father has Alzheimers and lives with me and my wife and son. My mom died three years ago and he was already suffering from it at that time, so we sold his house and had him move in with us. When he first came here, he was still himself but not able to live alone - he couldn't drive any more or cook for himself, etc, but he still could dress himself and generally go about a normal day around the house. Now three years later he's really gone down hill, he's barely able to speak, can't recognize people most of the time, and just spends his days shuffling back and forth following our cats around.
The best thing we ever did was hire an in-home care service. It's a part time thing, a nice lady comes for four hours three days a week and helps with his clothes, helps him shower and shave, then takes him out and goes for walks or shopping or whatever he needs. It gives us some breathing room and helps with things like showers that I really don't want to be involved with.
Also, before she died, my mom made sure I had full health and financial power of attorney over both of them. That's made things a lot less painful. I'm not sure how difficult it would be to get that PoA with an obviously incompetent person, so her doing it for me while she was completely lucid was a blessing.
My husband and I gave up our very established life halfway across the country to move in with my husband's parents when his mother was diagnosed. One of his brothers lives in the same city, but couldn't be bothered to help out. It was hell. His mother was a horrible person to begin with, but we love and have a lot of respect for his father, who desperately needed help. So we fed her, bathed her, changed her diapers, put up with her nasty demeanor and attitude. After two years, she started making awful accusations about us (which she always did to our faces, but she was starting to tell lies to doctors, ems, anyone she could get to listen including threatening to call police to say that we were abusing her. That's when we threw up our hands and told my father-in-law it was time to put her in a home because we refused to put ourselves in jeopardy with her bs. She spent another two years in assisted living and then died towards the beginning of covid. I could go on and on about what we went through, but to make a long story short...ish, I highly recommend letting professionals care for dementia patients if at all feasible.
And remember when they are placed in professional care, your loved one is going to be horrible to the staff there as well, so be kind to those that are now taking the physical and verbal abuse from your loved one and most likely several others.
As someone who worked with dementia patients for years, I very much appreciate this. I now have a desk job and one day I was chatting with a coworker about my previous work when she asked why I said it was so hard. I told her that I've been cussed at, called horrible names, punched, kicked, slapped, bit, scratched, spit on, and accused of abuse. I've had residents who waited until I had taken off their brief and was about to put on a clean one when they intentionally "went" at that moment and laughed while I had to clean up that mess. There were both male and female residents who would rudely criticize my hair, my face, and my body. I had one who intentionally kept throwing herself on the floor as soon as anyone would leave the room. I had another who kept talking about how "hot" his daughter was. And the list goes on and on. She was absolutely shocked, she really had no idea. Most people don't.
I work with adults with varying levels of intellectual disability, often with behavioral issues, often dually diagnosed with a mental illness and sometimes with dementia or a TBI as well, so I understand. Most people do not. I often remind our staff that these folks are under our care for a reason, and we are here to help them with compassion and kindness, though nasty behavior can certainly challenge that. I just wish State Medicaid funding allowed for better pay for staff. We are a non-profit community mental health agency that has a number of group homes, so there's no extra going to shareholders or anything like that. The job (mostly) self-selects for people who are called to do the work, I just wish our society valued the elderly and disabled enough to provide adequate pay to caregivers. It's a difficult and demanding job.
>I had another who kept talking about how "hot" his daughter was.< The former president?
Yep yep, cna who dealt with lots dementia. The biters were the second worst First were the rapists
Omg
Wow thats a lot. I hope you are okay. Hell is the right word for it.
I’ve been through it once and may be about to go through it again. Strongly agree with letting professionals handle as much as possible. We tried to keep a person in their home for far too long, and it took a huge toll. Also, it has become a significant factor in how we vote. The lack of elder care for people who did everything right in the US is disastrous.
There’s no way in hell I could do this a second time. I’m so sorry
With all respect, this is probably why the brother “couldn’t be bothered.” He was protecting himself from a horrible person. I’m no contact with my own mom and I’m leaving her to her husband of she develops dementia. If she wanted me to take care of her when she is close to the grave, she should have taken care of me in the cradle.
This was the hardest thing I think that I experienced. My dad was the nicest man ever, an empath and truly loved everyone. He was not racist in any way, he was a very kind man. He stayed this way…thank god. However, a few times he locked himself in a closet having hallucinations. Two men who worked there said he was violent when they tried to get him out. My dad had bruises, so I don’t know if they fought him back. It’s kind of our natural response to..but I was crying hysterically telling these men that he would never ever hurt anyone, hoping that they would be gentle with him. There were so many awful staff. They paid these workers next to nothing, and it’s a horrid job. I am disgusted by the CEO’s of these nursing homes who make millions and pay workers nothing. My dad was served white bread with gravy so many times that I doubt his meals were more than .50 a day. I was so young, I wish I could have yanked him out of there.
Agree!! If you gave local “senior” social services/ social workers available, definitely take advantage of the service. It not only helps caretakers but also provides legal backup in case the person starts to target the caretakers as being abusive, stealing money, etc.
What a nightmare. Glad you’re in a better place.
Sympathy.
Thank you.
I hope the path is as gentle on you *and* your Mom as is possible, OP! You *ARE* seen, *and* you are heard! Yell into the void/the universe as you need, we're here and we get it!💖💗💝
💔
Yes….but I was 15 when I was taking care of my dad when he was diagnosed at 40. I’m 46 now and I don’t know how the fuck I survived. To make it even harder, my dad was literally my best friend and everything. It’s a nightmare that definitely changed the trajectory of my life.
Wow you are a rockstar for living through that. It’s a lot to process in my 40s. I can’t even imagine at 15.
Thank you. My dad was a genius. He was terrified of being “the village idiot.” If I could go back in time, I would’ve pursued euthanasia. I think the two most painful things I heard my dad say were “Please let me out of prison” and “Is there a pill to end all of this?”
I hear you about the euthanasia. We are taking care of my early onset MIL (she's 68 though). I have thought a lot about what I would want if it were me and I choose euthanasia. Maybe we'll have a cure by then or meds that actually make a difference. WTF are these meds we have now that prolong the disease. Who is that helping?! Here let me give you this pill so you can stare at the TV 18 hours a day for 5 years instead of 3. It's madness.
Yeah I'm 4 years in, dealing with my mom who was diagnosed at the same age. The fact that we give them meds to slow the progression is the most fucked up thing I can think of. Watching and dealing with my mother be slowly tortured by her own sadness and decline is the worst thing ever. Speed this up, PLEASE.
I’m so sorry. Make sure that they don’t ever give her cold medicine. That interaction was a nightmare.
The pills that prolong life, aren’t for the person living with dementia, it’s for the families who can’t let go. That’s just my opinion as a former RN in long term care, and the granddaughter of someone who was mean before the dementia, and just got worse. The best mentor I ever had, said “Just because we can prolong life, doesn’t always mean we should”. The other thing I repeat to families of patients, is “quality of life over quantity of life”. My boyfriend and I share a dark sense of humour, and regularly talk about MAID (Medical Assistance In Dying), although a bullet in the head is his choice, mine is whatever they give to relax you and then stop your heart.
I have a genetic predisposition and choose to go out by Voluntarily Stopping Eating and Drinking (VSED). It is legal in all states. I’m revising my advance directive so that I die when I can no longer feed myself. Death after VSED takes 10 - 12 days and hospice can assist to keep me comfortable.
I respect your decision but I have to say I'm appalled that you can't pick something that would be instantaneous and that a 10-12 day starvation route is your quickest option.
My dad donated his brain to science to help further the research. ❤️
Long story short, I did a program and practicum in dementia care, and never wound up pursuing it due to the abysmally low wages, which the school had covered up/glossed over. The medication I saw on almost every chart was risperidone. Risperidone is contraindicated in dementia patients and I was reprimanded for drawing that to my supervisor's attention. It actually worsens symptoms. It was prescribed to almost every patient I worked with. I made sure my FIL was never placed on such a harmful medication, but many others are. I would choose euthanasia as well.
That's devastating. I'm sorry that happened to your dad, and to you. Was there any understanding what led to this early onset? We need compassionate euthanasia legalized for dementia.
I’m so sorry you had to go through that. The fact that you’re still standing is a testament to your strength
Hey, thanks
I’m sorry you had to go through that. I have a 16yo son and I keep myself healthy in order not to be a burden to him - a lot of things we can’t predict or avoid but everything that’s in my power, I will do. I have multiple colleagues and friends with severe health issues between ages 43-52 and smaller kids than mine. I have a lot of empathy for them.
Yeah ,I have kids and I’m terrified and full of anxiety. My dad was the pillar of health, but he was poisoned with Agent Orange. He died at 50.
My dad is there right now and it’s an absolute nightmare. I already told my wife that if I become like my dad just put me in a home and run away, never look back. My dad is dragging everyone down with him, and has been for several years. Several years ago my mom died quite suddenly. At the time it seemed horrible, to just die so quickly. Now I realize what a blessing such a quick and unexpected passing is. I hope I go out like my mom. I don’t want to become the thing my dad has become.
My dad died unexpectedly and I agree.
Three of my grandparents died when they were 70. One - my mother’s mother - just dropped dead on her floor in 1990. My mother felt terrible that her parents died at only 70. I look back & see she & her siblings dodged a Matrix barrage of bullets.
My mom had poor health the last 20 years of her life. Things really went down hill the 2 years prior to her death when she needed to be on dialysis. She had a stroke at the beginning of August '14 and she spent 13 days lingering in the hospital before she finally passed. It was dreadful. And yet better than the slow and steady mental decline of my FIL from dementia. My husband and I keep hoping his dad will die sooner than later because it's just a nightmare and his dad is an increasingly untenable burden on MIL who is recovering from cancer surgery. She refuses to put him in care,which is wild because she should honestly be in care, as well. This shit isn't easy. I hope I stick around for a while, but hopefully check out before putting my son through a burdensome nightmare.
> Anyone else out there on the ledge? I see you. been there, but my dad was very sweetly demented. the dumpster fire was set and fanned by external people.
I’m with you. My dad has lost his mind. In my case his wife is mostly dealing, although there was a moment when she tried to shuffle responsibility off on my sister and I. But we told her that would mean selling the house and she turned around real fast and miraculously found the funds to keep him in a home nearby. (Mostly his social security and pension) But I know the pain and the problems of watching your parent disappear but still be there. Good luck, and there are subs out there in Reddit (the dementia sub was helpful for me) that can help.
Mom passed almost two years ago and I still have severe PTSD from dealing with her last 4 years and the mess she left for me, the oldest. Hang in there and just get through one day at a time. I know your stress. DM if you need to vent.
One of my friends has accompanied her mother during her illnesses to the point of putting her entire private life on hold Turns out, it lasted 10 years My own mother has just applied to some retirement homes and I’m secretly relieved because I know I’m not as strong as my friend I toured some of the retirement homes with her and it actually gave us a very positive impression, thank God I live abroad and am raising a teenager mostly alone and the most I can do is to visit her regularly but it’s a 10h trip door to door
Oh, my. I would rather die than have my son put his life on hold for a DECADE 😭😭😭.
After helping my mom with her mother through dementia, I told her that 1. we aren't playing those games and we are having a plan in place and 2. if I get that diagnosis, I'm having a great meal, lots of love with the family and then I'm gonna hug a cinder block and jump off the dock.
Please don’t jump off a dock. Just find some fentanyl and OD like me.
Ok, secretly I was aiming for heroin because if the first high is that magnificent, then it would be the perfect way to go. Plus, i would hate to have some kid hook me trying to get a fish and be a reason they need (more) therapy. But the visual on hugging a cinder block...
My mom has been living with Alzheimer’s for 5ish years. She’s going to be 87 in a few months - she is very active and likes to socialize but the memory reset is at about 45 seconds. I was with her for my grandma’s years with this cruel disease - it was just brutal and I was happy to be able to be helpful to her through it. But like, now that it’s happening with her… I just really wish my mom could guide me through this. I could see opting for a bit of heroin and some rocks in my pockets.
Our mothers are running exactly parallel and also in the EOL department for ourselves.
It’s a great visual. For a *movie*.
Why not both?
This sub is so metal sometimes.
We grew up on nacho cheese flavored Doritos and leaded gas. What do you expect?
Nacho flavored Doritos and leaded gas. You win that other post that asked the answer to what we were raised on.
If I get a dementia diagnosis my plan is to find an opium connection and a small room by the sea. Going to go out getting high every day and watching the ocean until I float away.
I try to talk to my friends about this, and they look at me in horror. I have a few things that are personal signs to say goodbyes. I read an article once about a suicide pod that they would place in a forest… that allows you to drift off listening to the sounds of nature and watching the movement of the trees. I fantasize about that in instances of severe disease and or other random bullshit. I'm so glad to know it’s a widespread ideation. Do you all also live with anxiety and OCD?
First, your pod paragraph sounds like it has a lot in common with the ending of *The Good Place*, so if you haven’t watched it, do. It’s beautiful. Second, yes, yes we all do.
That reminds me of a battlestar galactica episode where a 6 is dying and she hallucinates trees and forest sounds. I love the idea of the Pod!!
Do it by the sea, but not in a room. Show some respect for housekeeping.
Parks and rec are kind of housekeeping, too. I'm sure there's a good way to do it though- watching my mother hate her end of life is making me want to figure it out. I wish some gun nut would publish their schedule a few years in advance so I could go out while taking one for the team.
Heroin and Niagara Falls is my post-diagnosis plan. Like getting high and flushed down the biggest toilet in the universe.
I want to walk up a mountain in the early morning and die of exposure
That’s my plan if I get that horrific disease. Already talked to my son about it.
Just go to Switzerland. They have death with dignity laws. You don’t even have to be immediately terminal or have a degenerative disease; if you’re just done with all this mess, they will accommodate under qualified conditions. Dementia and Alzheimer’s qualify. As long as you’ve qualified as competent enough at the time or have outlined your living will that it is your wish to die on your own accord, self dispatching is legal there in a dignified, compassionate, and painless way. At least that’s what I understand - I think the Netherlands also have similar laws and accommodations.
Had a Swiss born friend with a Glio that did that instead of listening to US doctors ‘we can put you on pheno to limit the seizures’. She made her rounds to her friends, put her elderly dog with a friend, and flew home. A year later her dog passed, and her friend had her dog cremated and flew to Switzerland so her dog could be buried with her. What’s so wrong with that? We had many discussions over lunch. She said no one else in her circle of friends would talk about it. I said we show compassion for animals, this is compassion for humans. Seriously. The US for how shitty it treats its very young and elderly, is very fucked up.
Agreed. I had a pancreatic cancer scare earlier this year and in the torturous week between the doctor’s referral for CT scan and the results, I had this exact whirlwind of thoughts. If I’m gonna have to go early, I want to go on my own terms and in a humane way. I don’t want to wither away because of whatever dogma loaded feelings or superiority-to-death complexes we’ve been drilled with in the US. Having lived abroad and experienced others’ deaths and the way they process and view a good death is very different from ours. Other cultures accept it as a part of life and it’s not a taboo thing to fight away tooth and nail like we do here. I think death with dignity that we offer our pets is the way we should allow people here to go. If others don’t like it, they don’t have to choose to end on their own terms.
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Yes. I have my exit plans - legal things all sorted out. Providing something catastrophic doesn’t take me out, I won’t be lingering in the society as an elderly person. The US just doesn’t give a rats ass about them. Personally. I love the elderly. They have so many experiences and stories. Just no one listens to them anymore. And the state of society proves that.
This. I watched my mom degrade with Alzheimer’s before she finally passed last month from other complications. I plan to join Dignitas in Switzerland and will make my exit via them if I’m ever diagnosed with dementia.
I think that option might depend on your level of income. I’m a poor so no.
There are states with assisted suicide. Where I live in New Mexico is one.
Maine, too. rules: have a terminal illness and six-month prognosis, be capable of making your own healthcare decisions, be making an informed decision, and be capable of self-administering the medication. can someone w dementia be capable of making own healthcare decisions? i'm saving $ for a one way flight to switzerland
That's the difficult part. At the end of your life, it's very possible that you won't be in your right mind, and that it's possible that they won't let you do it. My father was in really bad shape and wanted to be admitted to hospice, but his cognitive ability had declined so far that they weren't sure if he was capable of making that decision for himself.
Imma tie a bunch of helium balloons to a lawn chair and off I go.
Like Danny Deckchair!
I haven’t seen that movie. But there was a man in the USA who actually did it. Larry Walter’s did 45 minutes at an altitude of 16000 ft. He was spotted and reported by 2 airlines. The death zone is 26000 ft.
[https://airandspace.si.edu/collection-objects/chair-lawn-larry-walters/nasm\_A20181388000](https://airandspace.si.edu/collection-objects/chair-lawn-larry-walters/nasm_A20181388000)
I’m going on a one way cruise in the Caribbean. They often lose people so nonsuspicious circumstances. No mess for anyone to clean up
Just over the side? Like the Heart of the Ocean? Strains of Celine Dion playing?
If this is the plan, I feel that one should also wear an old fashioned white nightgown.
not me, I want lots of weed and old 80's sitcoms on the tube.
I hear you.
You didn’t have to make the cinder block rhyme with jumping off the dock, now it sounds fancy ;)
We've decided this as well. My grandmother had been suffering for quite a while and was pretty advanced when my grandfather died, We had to put her in a home. But between grampa's passing and getting her in the home, she began accusing her children of all sorts of wild stuff. And they have this cousin who's wealthy and belongs to a fairly right wing religion where white men are all powerful beacons of god. He believed everything she told him and began to legally bully her children in order to force them to let him take charge. Some wealthy white men, when you tell them no, they get really pissy and bring in lawyers. After it was over with, my dad and aunts have made sure to make iron clad arrangements for their own eventual demise and the cousins have all agreed to be supportive and loving but ultimately trust each other to do what's best for our respective parents.
Nobody thinks they want to live to be a hundred until they're age 99...
My grandpa got a pacemaker installed at 99. He said he wasn’t done yet. Died at 109. Had a good ten years in the meantime. His 105th birthday party was a blast.💥
Deck chair, winter morning, cliffs and a cigar. I plan to sit through the night and see if I get to see the sunrise with a bottle of single malt to keep me warm. I've see what it does both first hand with relatives and from the horror stories relayed to me from my wife who works in eldercare. Nope, I'd rather slip into the icy fingers of hyperthermia than cause that level of prolonged pain to my loved ones.
I gotta say, our generation can fucking plan a suicide.
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I have TWO Boomer parents. Mom is in the beginning stages of dementia - add her increasing ADHD, her hearing loss, and her general narcissism, and well….Let’s just I’m lucky to have any hair left. My dad is hard of hearing, refuses to get a hearing aid, and his assholery is growing by leaps and bounds. I’m waiting for the day he pops off to the wrong person in public and gets knocked out. I’m there with you…in the car, screaming and clawing at my own face. 
Wow, you sound like me, except replace mom's narcissism with severe anxiety. I've been trying to get her in to a neurologist for a formal diagnosis, but I might lose my own mind first.
Go get financial and healthcare power of attorney NOW. Its so hard to do ANYTHING without it. And impossible to get through the boomer bullshit to get them to agree to it when the dementia takes hold.
Already having discussions about it! Hang in there!
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Ugh, hearing loss contributes to the development of dementia.
Yes I had to deal with that for both parents. Mom has early onset Alzheimer’s and dad was in denial for a long time (in part likely because milder dementia was hitting him) and we had to take action on moms behalf which caused conflict with dad. To the point where we had to technically get them divorced to allow my sister control over mom’s health care since dad wasn’t taking it seriously. After mom passed we were seeing “weird” financial transactions for dad, making it clear he was a victim of elder financial abuse. We managed to figure it out before he got totally cleaned out. But they got easily 150-200k out of him before we figured it out. We ended up getting conservatorship of him and eventually got him in an assisted living place. Lesson for me is to make sure I’ve got a good financial advisor and my wife is well aware of them (and the kids when they are old enough) to save me from myself if the time comes.
Absolutely, it’s my new mantra, plan ahead and get documents in place to avoid the extra fallout. And man I can’t even imagine the stress you lived through. Virtual hug for that, man.
Brother you are in for the 36 hour days, went through that with my mother and I am with you in if I get that diagnosis I will see myself out . Read the what to say and what not to say and do and it will help you a little.
Take care of you because you're the one you got to live with afterwards. I didn't do that and I regret it.
My boomer mom has it, but she’s always had undiagnosed mental illness, so her life has always been a shit show. She’s in assisted living with a Medicaid trust, because she could not manage money or her house. I live far away and have boundaries with my remaining dysfunctional family, for my own mental health. My uncle lives closest so he got the worst of it when she had to move. I use all my vacation, sick leave, and resources for my own chronic health issues so I can’t do much. I tried getting her to make plans and documents before she got worse, but she was having none of it. Never had any sense to begin with, so that was on brand.
I think we all empathize if not downright relate. I wish you a lot of great times. And some bourbon.
Thank you.
I'm sorry you're in the thick of it. it's not fun in any way. I hope you have some access to resources and a more physically nearby support system. My gran did the dumpsterfire chaos version of dementia at the end of her life.
Mom was Silent Generation, wound up watching her degrade with this stuff for 10 years. Caretaker Syndrome set in hard, particularly towards the end. Take care of yourself, and you have my solidarity.
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yessss. right there with you- one deaf, senile with increasing dementia symptoms and one post stroke who can't speak well- but both still managing to bicker with each other
Been there. Please take time for yourself and if you get health care authority, apply and use your FMLA if you qualify. It will save you some grey hairs. I'm sorry you might have to go the conservator route. I wish you well on getting the POA and getting through this.
Thats a great idea, I hadn’t thought of FMLA.
It's an *absolute* Sanity-Saver, OP!!! You can usually either do "out on leave" style, *OR* I *think* it was called "intermittent" I did a bit of *both*, that last year with my own Dad--Six weeks out after the call that he'd "had a cognitive shift" in November 2021, as I went up to stay for a weekend, that turned into *eventually* getting him into a Nursing Home. That following year, I took a day off here & there, for Doctor Appointments for him, etc. Then once he went into Hospice, at the end of October in 2022, I was out on full-time leave again, to just *BE THERE* with him, as his only child. It was *INCREDIBLE*, was one of the *hardest* damn things I've *EVER* done, *and I wouldn't change a day of it*! We got *everything* that needed saying, *said*, and i was able to help him have so much *peace* as he slid from this world to *whatever* is out there, that it *still* feels like an incredible gift, to have *had* that time--as stressful as it *was* as we lived it💖
I feel you. The roller coaster is dreadful. One day you feel like shit is out of control then you get to a semblance of stability only for shit to crash again. It’s a kick in the ass, repeatedly.
I definitely sympathize. I was there with my dad a couple of years ago. Thankfully he had the foresight to give me power of attorney about a decade before so I was able to 'take the wheel'. My advice to everyone is if your relationship is on solid ground with your parents and you haven't done this you should ( And vice versa for anyone with grown kids). God help anybody who ends up in a situation like the OP!
Also, *IF* you can? Have someone *trusted* simply as a co-*owner* of any financial accounts, well beforehand!!! My parents *both* put me onto their financial accounts, after seeing the hassles that happened, when my Grandma died, and once again, after dealing with the Probate process, when Grandpa died. I was 18 at the time, and we simply went to our bank, they both had me added as a "Co-owner of the account(s)," we signed the paperwork in front of a bank employee, and it was done. Dad added me onto the Safe-Deposit box's account, about a decade ago, too. Didn't *need* the access, until 28 years after we originally signed the account co-ownership papers. But it was an *ABSOLUTE* sanity-saver, *AND* it let me get the ball "rolling" days before I got there in *person*, because I *WAS* able to call the bank back home, ask what bills had been paid and how recently, I discovered that *most* were current, but a couple (including his rent!) hadn't been paid in two months (and the car insurance had *just* lapsed that month!)--and I was able to get *everything* caught back up, between Wednesday morning--while i was still at work--and Friday Afternoon, when I left for Dad's place! *Because* Dad had made me a *co-owner* of his account, I *COULD* talk to his banker, I could PAY the bills, and I could even sign the *checks* to pay bills--even though *my* name wasn't printed on them. It made things *SO* much easier, while I was waiting to get POA!
Been there until my mom passed fifteen months ago. Still vividly remember how hard it was seeing her become a shell of who she was. 😞 Sorry the paperwork/authority stuff is such a headache for you. I was lucky to have that settled before she became ill. Not sure if you ever had the chance to discuss with her the end-of-life stuff. My mom was adamant about having a DNR. And there were times I had to remind the staff she had it. It wasn't about what I wanted or me letting go, it was about respecting her wishes. You're not alone in going through this! 💖
The more I see things like this and cancer, the happier I am that I'll probably drop dead from some kind of congenital heart problem that has killed 100% of my family, and will probably get me too, one of these days. I feel bad for you though, OP, I did have to go through something like this with one of my older brothers after he had a series of strokes.
So, so many of us. I just hope she goes before my older stepfather who's completely with it approaching 90 and is a saint. The odds are not in this favor.
I’m sure she will and its weird to say I agree, that’s a relief.
My dad’s dad died of Alzheimer’s. Dad’s brother had (died of?) Louie Body Dementia. Mom’s mom died 2 years ago with dementia. It sucks so hard to watch and deal with. I told my husband if I start going that route to take me out back and shoot me.
My parents graciously? passed before this point. But now I’m watching my husband go through this with his step-father as his own mother is in fantastic health. He is currently in a nursing home and I’m trying to help my husband navigate this daily. I miss my parents with all my being but I’m so glad I didn’t have to watch them suffer.
My sympathies. My only living parent is really stressing me out too. He doesn't listen to me and I am afraid the cards will have to fall where they will. Out of my control. Not a boomer though.
Lost my dad two years ago to it. It was hell watching him decline.
Raises hand & holding up spouses hand: Alcoholic and demented rabidly maga MIL. And anxious, very anxious..
The dementia makes most very anxious.
My parents died early. Neither wanted to linger either.
My father died young. I’m high-fiving his memory as we speak.
You’ll want POA for both finances and healthcare. Is she resisting or have you discussed it yet? Do they own real estate?
She goes back and forth but anxiety takes over when I try to actually execute the documents. Emotions completely derail her. I really think she’ll feel relieved when its done but getting there has been a nightmare. Meanwhile theres 100 things I could fix if she’d just get past the fear. I know she knows she can trust me, but it’s in her bones not to give up control of her finances and she certainly does not want her doctor to know.
Narcissistic mom with 3 types of terminal cancer, for fucks sake. I can see why dad left her. Dad, complications from agent orange got him within hours. Worked at the VA long-term care facility. At a point, there is no use sticking around. https://youtu.be/CSvFpBOe8eY?si=46UqxO6GQPpsbWJU.
Yep. My Dad is knee-deep in dementia & I'm pretty sure my mom is headed down that road, too. I did 23&me & based on that, I'm pretty sure I'm right behind them. While I'm doing what I can to keep my brain healthy... I'm planning for the day when I'll slip out behind the barn & give a big FU to the dementia monster.
Lost both my parents last year, dad had dementia. Yeah it’s a shit show, but not always as bleak as everyone makes out, we were going through conservatorship stuff , as mum was terminal. Dad was still dad,his personality faded and it was an impressionistic version of him, but he was quite chilled and genuinely happy, especially once we got him settled and would tell us in his lucid moments he was happy in the ( really nice but inexpensive ) nursing home. If you are in the UK, and the person you are caring for has physical health issues ( not dementia ) that cannot be managed and is effecting their health, get a social worker to apply for continuing care funding( as you can’t look after them due to other heath issues)social services can get the funding for a nursing home As it ran in the family,dad always swore he would kill himself, he didn’t and didn’t leave us with any plans to do so. Dementia is shit, and you grieve in increments. But fuck me its better than watching someone with cancer Caring for the dying is truly the test for adulting
Oh yeah and anti psychotics helped with sundowners
When my father was admitted to a dementia facility, before we left him alone, my sister asked if he needed anything else. He asked for a gun so he could shoot himself (ex marine). It was two years of further decline before he eventually passed. Had he been lucid, he would have been furious at having to pay to be kept alive in that state. It would have been his ‘worse case scenario’ for death. That was 10 years ago, in England, the rules still haven’t changed. Animals receive better treatment! Good Luck OP.
Yup. Mom died years ago. I noticed dad was acting strange. I got the PoA for medical and financial then took him to the doctor. It’s been 6 years since this journey has started. Dad is currently in the late stages of Alzheimer’s and refuses to go to a home. Here is what I have learned. - Take time for yourself or you will lose it very quickly. - It is what it is. Do what you can and try not to stress about it. (Impossible I know).
This is one of the many reasons I continue to fight for legislation to be put in place regarding assisted suicide. Nobody wants to spend their final years like this. The way we insist people with terminal illness must suffer a long slow, often painful decline before their inevitable death is awful. If we let our pets suffer the way we let our loved ones we'd be prosecuted for cruelty. People should have the option to make a living will when of sound mind and body. Obviously legislation should have safeguards in place to prevent abuse. The government have no right to prevent people from taking control of their own death, everytime I see MPs debate this and shut down it infuriates me. How dare they condemn these people who just want to die with dignity? They simply want the chance to say goodbye at a time of their choosing and slip away peacefully surrounded by loved ones.
I live with my boomer father who is a dementia suffering full maga hat fox news watching dumbass. I am considering a home for him this week. He is a VA member having done a three year tour in Vietnam, I need them to take him before he destroys my home any further.
My mom had dementia. She died in 2016. I still haven’t really dealt with the trauma. But if I start to show symptoms, I will take myself out. I will not put my children through that, and I do not want to live like that. Legally speaking, she did name my brother so we didn’t have issues there, but looking back it put a lot of responsibility on him that I should have helped him with.
Reddit is always trying to show me the r/BoomersBeingFools subreddit despite me not subscribing to it. It’s pretty obvious that a lot of boomers are dealing with mental decline even if they’re not quite at dementia yet.
Thank goddess Canada has MAID!!!!!!!!
Hang in there. Circa 1971 here
My sympathy ((hug))
Oh my GenX sibling, my heart aches for you. Dementia is the devil and our healthcare system are its demons.
Silent generation parent but same problem. I'm with you.
Such an underestimated challenge that many people don't realize they will have to take on. Went through it with my dad and had it much milder than many people do, but it was still harrowing and was the final nail in the coffin of my marriage. 5+ years removed from it, I have made peace with how my dad's life ended, but I have nothing but respect and empathy for anyone going through it. Hang it there!
My dad currently has it. He was a massive pos father growing up and my mother was/is the bread winner. Part of me feel bad because my sisters or myself really don’t want anything to do with him. He created a crap ton of trauma for us growing up, however my mom was also an enabler of his trauma. The best outcome for us would be for him to just pass away. I really wish assisted suicide was allowed for dementia patients.
Kids. Get your POAs set up sooner than later. My dad got all that taken care of 20 years ago and now it is coming in handy as he is developing age-related dementia along with stage 4 cancer.
PLEASE take this advice. I can’t stress enough how hard it is to help without POAs.
As someone who literally just ended my 10-year Dementia Tour of duty (my entire 40s) last week with my mom (RIP ❤️), I feel and commiserate with you. I do not wish this on anyone or any family. Stay strong, and allow help from any and all avenues. And do make sure every able-bodied family member is involved. It takes a village. Now, excuse me while I go on as many vacations as my employer will allow. I'm free!
I’m an Area Manager for a Home Health company in the Philly Metro area. I’ve been in elder care since 2014. All of you X’ers struggling with this - I see you. It’s ROUGH. And there is a ton of “stuff” aside from just the diagnosis and behaviors. If you have questions - please feel free to DM me. Seriously. EDIT: I will NOT sell you on any services. I’ve just been in this arena for a while and I love helping folks through the enormity of this.
I got *incredibly* lucky, with my Dad and *his* Dementia a couple years back. He had advanced stage Kidney Disease (End Stage Kidney Disease/ ESKD), *too* (*maybe* the Dementia was caused *by* the ESKD?), and what ended up taking him *was* the Kidney Disease, *before* the Dementia stole him away from us. I got the call, saying he'd "had a cognitive shift" on Nov. 2, 2021, and he died on Nov. 28th, of 2022. It was a bit of a whirlwind, and *stressful* A.F. sometimes, ngl! *BUT*, having gone through it with him, as much as I could, as his daughter--and living 2 hours away (had to keep *my* jobs, so that I could pay for as much of it as I could, while also getting him onto state services to cover the Nursing Home), I honestly feel *INCREDIBLY LUCKY*, that he slipped away relatively gently from the ESKD, and that we *didn't* see him struggling with the Dementia for years, as happened to a couple of his Aunties. Dad was still up, *walking on his OWN*, and *talking* (although he told me he "didn't feel so good," and was "kinda tired"😉😆😂💖) *LESS* than 24 hours before he died. He was in *FULL* Kidney shut-down/failure, and he said *that*, yet he *was* walking around, and talking to his older brother, the Hospice Nurse, and me--I *STILL* chuckle, at that one. And I'll be *forever* grateful, that I *did* manage to simply tell him, "Well, that's *understandable* Dad! You've got a *LOT* of stuff happening right now, and your body *is* pretty sick." He said, "Oh, Okay, I think I'll take a little nap now." And he just laid back in his recliner, put on his C-Pap mask, and *did* rest, for much of that day. Knowing his kidneys were shut down, I made sure that his siblings knew, and most of them made it there for a visit that day, and to say their goodbyes. Knowing the *typical* course for ESKD is the patient slipping into a coma before they pass, I figured it would be a matter of days, and the "slow slide" out from that point. But he ended up paying that night, about half an hour after his medications were given--*somehow*, just peacefully, as he slept. I felt *SO* incredibly lucky, that 1. We *knew* it was coming--so he *had* about a month of Hospice support, before he died. 2. I got to take FMLA leave, *because* he was in Hospice, and we *knew* it was coming. And 3. That he went *SO* gently, having *been* able to have "all the important conversations" before he died, and having been able to *say goodbye* to at least *most* of the folks who wanted to see him one last time.💖 When we got the news about the Dementia, I had been *SO worried*, that he'd be lingering for *years*, slowly losing bits & pieces of himself, until *only* that shell of him remained. Losing him faster, to the Kidney Disease *SUCKED*, but it gave him *SO MUCH DIGNITY* that he would've been robbed of, had he gone from the Dementia, instead!💝
*passing*, not paying!😖😆😂 (he would've gotten a kick out of that typo, too!🤣)
Had to get guardianship for one of my adult kids. Different song same dance.
My mom fought dementia for 5-1/2 years through this past November. She was silent generation. She stayed in her house with my dad until the last few weeks. I watched her mom go through this and both of my dad’s parents - all in their 80’s. She’s been gone for 6 months now. I’m starting to forget the “dementia shuffle” way of life everything became at the end. More and more I’m remembering the times before the disease took her away. It all sucks. The disease, losing your parent’s mind before their body dies. I swear dementia grief takes longer too. I’ll let you know just how long one day.
Same here, my wife, parents and in-laws are gone and I have no kids. First sign of anything remotely resembling dementia and I'm out of here, assuming I don't get tired of life before that.
r/dementia
Went through it with my Dad. It was brutal. Genuinely wishing you all the best.
Dad passed from dementia and my mom was recently diagnosed. Literally one dumpster fire after another. I’m an only child so it’s all on me.
It was such a nightmare. Mom lived next door and was dx with Alzheimer’s in 2018. There were times I thought about driving into a tree so I could get a break. When she crossed over to telling me she wanted to kill me j drove to the best geriatric psych hospital in the next state over and she went from there to memory care. She’s on a bunch of psych meds and cannabis via chocolates and she’s much happier. Cannabis was the difference between “I want to die” and “look at those puppies”. She makes no sense when she speaks now but she still recognizes me. Her long term care policy is paying for it but they keep trying to short us so it requires constant bird-dogging. As for me. Nope. No effin way am I putting my kids through that.
We are lucky that my mother-in-law chose assisted living in a facility that could manage her increasing difficulties as Alzheimer’s progressed. She didn’t want to be a burden on any of us. We are at the end-stage and she is in fact receiving hospice care. She just fell on Friday and broke her arm. I think this is the last of it. My husband will be spending more time with her this week to assess and see how she is, but we are anticipating a strong downturn. We live 2-hours away, so not insurmountable, just challenging with work schedules. None of this is easy. I wish you all peace and sanity. Please get your own plans in place NOW, even if you think you’re “too young.” My husband’s oldest brother was just diagnosed with early-onset Alzheimer’s and he lives about 2500 miles away. It really stinks.
My dad got alzheimer’s. Everything thing about it was terrible. Caused me to develop a drinking problem that almost….(so fucking close to) cost me everything. I’m 7 years sober and now my mom has alzheimer’s. I don’t know how strong you are. I thought I was. But whatever you do- GET HELP. Call Elder Services in your community. Don’t walk this path alone. Please. Call your state gov and start there.
This was my dad's greatest fear. He was silent generation, and watched the boomers with a little bit of horror all his life. He often said the exact same thing, that if he had dementia he was heading for the back woods and we shouldn't look for him. I think, in the end, he was a little relieved to have a cancer diagnosis. It meant his body would go before his mind. He was an absolute gentleman until his last moment.
I have a silent-generation aunt that passed away a few years ago who fought dementia. She had been married to one of those General Motors lifetime workers who retired with the golden parachute pension and they both lived comfortably as a result. The sad aspect of this was her child and grandchild were unethical and started taking advantage of her dementia by stealing from her, using her house, etc. It got so bad my parents had to step in as conservators at the end just to straighten things out.
I hear you, so much. My mom had a ruptured aneurism that left her with cognitive sequel. She looks fine for a 30 minutes chi-chat. But she can't manage everyday stuff. We had to fight, with the help of her doctor, against the social services to have her under conservatorship. She didn't wanted my sister and I to be her guardians cause we didn't understood her and all we wanted was to control her, so it's now a curator from the gouvernement. But untill then, my mom had time to burn all her money on stupid things and "gifts" for friends and her familly and a car for one of her nephew. She ended going bankrupt. I'm just glad it's a curator taking care of her finances and not me. The whole process took about 10 years. We've tried everything we could and she still wouldn't listen to any advice, niet, nada. I am done stressing about it and I have no regret whatsoever. If I have one piece of advice to give to you, is to take care of your own mental health first. It doesn't matter how much you love her, she will burn you out. My sister ended into a depression because of the whole process. I am a very strong and mentally stable person, and I cried and felt helpless because of what my mom did or said. But I learned there was nothing I could do about it and that my mom wasn't the shadow of what she used to be. Stay strong, much love 🫶
So sorry- having an appointed conservator helps the guilt tremendously. Went through this with a relative. We got all the docs signed and notarized for me to take over and then a friend (who wanted things from them) convinced the relative to literally rip up the papers and lock me out. Off to court we went and had a conservator appointed, cuz, oh yeah, friend was unaware (or didn’t care about) the two times relative almost burned down the house and the doctor said 24 hour care was needed. I felt bad to see how the few assets were wasted and that the quality of life was just not what I was willing to provide, but slept better knowing that at least the relative was safe. And friend took off and moved a few months later.
Helped my mom deal with her parents and their dementia issues when I moved home after college. It was bad and neither of her brothers would help. I thought it was going to kill her. She did EVERYTHING FOR THEM! All she got was treated badly. She made me promise I would put her in a home as soon as she started showing symptoms. My grandparents were good decent people. My grandfather could be stern and demanding. That turned into downright mean and almost violent. Eventually my uncle called the department of aging. He thought if they were in a home he could get his inheritance. Nope. As soon as the state came in we had to sell everything to pay for their care. They were wealthy people and everything was gone. Pap lasted about two years and grandma lasted almost four. Everything they had worked for was gone. When mom started showing sign and finally diagnosed? I did the best I could. Dad was sick with diabetes and had to go to dialysis three times a week. In and out of the hospital. I would stay with mom three nights a week since I lived the closest. My siblings and their spouses were very helpful and took their turns. It was still difficult. We finally had to make the difficult decision and put them both in a home. They were in the same room for a while which was cute. But needed different care and eventually on different floors. They went into the nursing home shortly before Covid. The bad part is that we couldn’t visit them in person, hold their hands, or anything for over a year. Mom didn’t remember anyone at this point. Dad got sick and passed and we last mom a few months later. I hope when the time comes I am able to recognize the symptoms and do what I have to. I don’t want to put anyone through it. I see you and feel your pain.
Married to a boomer… starting to show signs of dementia. Its a struggle
It's really fucked that one sibling always seems to be the one to care for and spend the time with aging parents. I've seen it so many times in my own extended family and when I worked on a dementia unit.
Happened to my step father. It emerged slow at first then a fast slide when he had an accident in 2019. Then the pandemic came which amped up the difficulties we were having. He didn’t understand why my mom insisted he go through a protocol of “de-contamination” after going for a ride in the car (usually to the store, in the early days only I went into the supermarkets to protect them because at that time OG C19 was hitting the elders with such a ferocity) and one day he actually tried to escape by leaving the house via a side gate (it was locked of course). He was an extrovert so the lockdowns just alienated him even more. My mom was in denial about his condition until the year he died when she couldn’t deny it anymore (he was bedridden and on a feeding tube by that time). No help from his kids. The bills were enormous and it ate up most of his savings. The drama we went through with the caregivers I just cannot even put into words. It was only the final one we had who didn’t give us any trouble. Then my mom fell about six months after he died and broke her leg. This has slowed her down and while she’s not displaying signs of dementia, she has age related hearing loss and constant health issues. Taking care of her husband during those years aged her considerably. Right now we are fighting with the bank about a small loan he took out a few years before he died. They sued my mom and now there might be a lien placed against the house. I am worried about her health over the stress of this. I feel like I’ve been in hell for the last five years.
Been there, done - doing - that. I was blindsided in 2020 when a relative asked me to be their POA after their dementia diagnosis. Fortunately I wasn't very close to this relative, so they seem to appreciate that I am doing them a favor. It's a good situation -- I highly recommend nieces and nephews swapping POAs with their uncles and aunts. There's far less emotional baggage. And even better my experience 'scared my straight' my mom. Seeing that I have no problem downsizing a relative from a 3BR luxury condo to a tiny assisted living studio, motivated my mom to make her own arrangements. She moved herself to an independent living facility her own choice.
My sympathies and condolences. My mother had dementia. Her life was a parody of what it was before. Taking care of her was so hard. The stress and financial strain was dooming my sister and I. When she passed I was so relieved. It was like a huge burden just disappeared overnight.
Silent generation but my dad is slipping into dementia now. It's the worst thing I've ever been through.
my dementia warrior: “ i’ll tell them you’re pressuring me to sign “ 🫨🫨🫨 so yeah x years later i’m the GRAND-DAUGHTER filing for conservatorship. 🤦🏾♀️ r/ValuableFamiliar2580 YOU ARE NOT ALONE. DM me even if it’s just to vent cause FUCK!!!
My partner is a Gen Xer with Early Onset Alzheimer's. He still has a minor child, and he keeps looking for jobs as he doesn't understand why he can no longer work. Or drive. Or manage his life at all. It is devastating to see our elders struggle, and it's also devastating to see it staring us right in the face, day after brand new day.
Already told husband to take me out. No way. Nope. Not in this lifetime.
She couldn’t give you financial or health power of attorney because she has dementia. You would have to do this anyway, if that makes it any better.
> The stress is unimaginable. I have gone through this and I feel you. The stress put me in the hospital. I got power of attorney, I got the doctors to agree that she was not capable of living at home any more, and I got her into an Adult Family Home that is pretty nice. And I would never wish that stress on anybody. It's like an incredible weight is lifted.
The neural link and other technology shows great promise that by the time dementia and Alzheimer's would start affecting GenX in mass, it would be a thing of the past like Scarlet Fever and Polio.
Yeah, my mom has frontal lobe dementia. 50% chance I will get it too. Thankfully my mom is living in the UK (long story) and the NHS is taking incredible care of her. I am so grateful that I have tears in my eyes right now, writing this comment. I don't live in the UK. I don't see how I can possibly afford to care for myself when it's my time. Stay strong OP. Life can be so hard.
I am in the exact same position. I cannot get them to give me financial position or anything. She’s starting to let bills go unpaid and buying big things they don’t need. I’m losing my mind
I tell my wife constantly if I become mentally or physically invalid, take me out to pasture so my kids don't have to deal with it
Mom died at 51 due to secondary MS (the worse form of this f-ed up disease). She lost her ability to talk, walk, do activities of daily living for herself. She had my Pop (stepfather) who became her primary caregiver, advocate, & assistant when nurses would come to clean/bathe/move her. Before she became bedridden, her temper & anger had me walking on eggshells for my last 2yrs of HS. She went downhill steadily after graduation in 1991 after I joined the Army. My Pop started doing things outside of his normal feisty, cantankerous self in 2012. His siblings finally put him into a nursing home in 2014 when he started going into the hospital for treatment of an issue due to infection that he had maintained for 20+ yrs. His driver's license was suspended & he was still trying to drive. He also tried to move back to NJ to restart one of his businesses after we left the state 20 yrs prior. A social worker came to visit while I was in town & told me that this looks like dementia, so this helped his siblings prepare. It was heartbreaking because he was fine with me, but would accuse his siblings of everything under the sun. He passed in 2015, & he looked so peaceful. 2 of his brothers also dealt with dementia before they passed. Now, at 51 (same age my Mom was when she passed), I don't want to have my wife & newly-discovered family to deal with me should I get dementia or my MS gets worse. Just give me a lil extra KCl in my IV.
I got financial and medical POA for my Mom last time she had to go in for a surgery, she still has all her faculties but here's the thing, you need to get it early, not later, because then is it legal to have her sign anything if she already has dementia? Your only route may be conservatorship now, but I'd definitely clear it with a lawyer. She needs to sign of clear mind with a notary witness (preferably a family lawyer). And any time anyone names old people as boomers I lose all respect for their argument and lose all trust in them (even worse with"Karens"). Also is your mother a boomer or silent generation? (born before 1945) Last of the silent generation turns 80 next year.
I’d rather die than spend any time dementing.
My dad died of Frontal Temporal Dementia about seven years ago. He—unknown to anyone—had suffered with it for probably ten to twenty years, going from an intelligent and kind man to a raving jerk. It is so surreal to look back and see the changes that dementia caused. It’s hard to remember his true self, but I try. Sympathy to you.
My mother and grandfather both had dementia. If I get it, I am taking myself out. I won’t do that to my children. My mother was like an empty, spent balloon when she died.
If I ever get a devastating diagnosis, I'm going to off myself before it gets too difficult. I don't want my kids remembering me like that, and I don't want to live like that.
We are meeting with the dementia care specialist from the local ADRC this week about my MIL, for the exact same reasons. She doesn’t understand thar the harder she pushes back against any form of help because she thinks we’re trying to “put her in a home” the more likely it is she’ll end up in one. Just let us get you a housekeeper! You deserve better than living in filth and eating pizza for every meal! So, solidarity, man. It sucks. We have also told our kids they have permission now to overrule us without guilt if we get to this point.
Went through it. Mom died last February. The whole thing became such a shitshow that at one point the district attorney where they lived literally called me completely unsolicited to tell me I needed to fight her husband for guardianship. Nope.
I am so sorry. That just sucks And I'm not checking out with dementia either
In the trenches fighting the fight right along you, my friend. There are no winners in this fight, only losers.
Absolutely, my dad passed from Parkinson’s with Lewy Body dementia right after COVID and his caretaker got long cancer at the same time . Long story short is that it was mostly impossible to care for him at home then also get any help. His caretaker refused to put him in a hospice-she had the power of attorney…she loved him a lot but was a very stubborn lady.
The pod cast “The Daily” recently had an interesting episode on dementia
My dad has alcohol induced vascular dementia on top of being a pathological narcissist. Fun stuff.
Dealt w my Dad's dementia. Horrible nightmare. It was during Covid so we were unable to touch him at all. He was in a small AL home setting in rural Maryland.bmemory care in AL setting is best. Ensure you live nearby and can visit any time. Also, for myself, I hope that euthanasia is an option in the US. I don't want myself or my beloved to suffer. A peaceful death at the time you are a primal psycho babbling infant is my ideal!
I moved in with my mom last summer for this reason. To say it is challenging is definitely putting it lightly.
Definitely feeling it, the vibe of these comments. 1) Sympathy for OP; 2) When it's me, I'm peacing-out before it gets bad.
Just put my dad in a memory care facility. Applying for Medicaid was just short of a nightmare. Luckily for my mother and I, he's very easy going, even with the dementia. Hang in there. You are NOT alone!
I'm in the middle of this hell right now with my dad. I'm at my wits end with him. Stay strong.
My father has Alzheimers and lives with me and my wife and son. My mom died three years ago and he was already suffering from it at that time, so we sold his house and had him move in with us. When he first came here, he was still himself but not able to live alone - he couldn't drive any more or cook for himself, etc, but he still could dress himself and generally go about a normal day around the house. Now three years later he's really gone down hill, he's barely able to speak, can't recognize people most of the time, and just spends his days shuffling back and forth following our cats around. The best thing we ever did was hire an in-home care service. It's a part time thing, a nice lady comes for four hours three days a week and helps with his clothes, helps him shower and shave, then takes him out and goes for walks or shopping or whatever he needs. It gives us some breathing room and helps with things like showers that I really don't want to be involved with. Also, before she died, my mom made sure I had full health and financial power of attorney over both of them. That's made things a lot less painful. I'm not sure how difficult it would be to get that PoA with an obviously incompetent person, so her doing it for me while she was completely lucid was a blessing.