Alzheimer's - What to Do?

[gmillerdrake]

Starting this thread as not to hijack Kev's mother's passing thread.....but I almost responded to Bill's last post in there.

If I have a single 'fear' that I fear the most that is Alzheimer's disease. Whether it be affecting someone I love or if I were to get it....it's just such a horrific disease...it's unimaginable I suppose until you are faced with it.

I believe that I've reached a decision for myself....that if I were ever to be diagnosed with it.....I would find a peaceful way to 'end' it prior to losing all my memories and prior to putting my family through what looks to be hell on earth. I've wrestled with the 'faith' aspect of that choice and whether or not if that's a fair or 'right' thing to do....but I just can't imagine living through losing memories to the point of not being aware of 'who' you are or who the people you love are. I hope and pray I'll never be in that situation but I really do think I've come to the conclusion that should I be made aware that I have it and am still 'with' it....I'm not going to sit around and deteriorate mentally and physically. That may sound selfish and it gets into the realm of assisted suicide and stuff like that....but I just don't think I want to put my family through that nor do I want all of what I 'know' to be lost. It conflicts with my faith in the aspect of after we leave this existence there are greater things to be had but the 'fear' associated with losing it all is a real thing to me.

As far as if someone I loved coming down with it...I suppose I'd do everything that is expected from me but my heart goes out to people like Bill who are experiencing it or have experienced it. Again, I just can't imagine the heartache and pain associated with it. It's a cruel disease.

[King Postwhore]

I see it in my Dad now though it may also be partly his MS seeing lesions in his brain.  It's heartbreaking to repeat things daily because he cannot remember.  To see someone you care for slowly lose himself is tough.  But I do cherish being with him.  We all try to enjoy the moments we have with Dad.

[El Barto]

It's a cruel disease for the family, that's for damn sure. For the afflicted it honestly doesn't seem so bad. For my part I've adopted the Sandra Day O'Connor approach. She resigned from the court to be with her husband, only to have him fall in love with another patient at his facility. While I'm sure it sucked, by all accounts she resigned herself to being grateful that he was happy.

As for offing yourself, naturally I'm going to call that the selfless thing to do. Of course the trick is actually remembering to do it. 

[jingle.boy]

As for offing yourself, naturally I'm going to call that the selfless thing to do. Of course the trick is actually remembering to do it. 

Anyone watched Still Alice with Alec Baldwin and Julianne Moore. She had a good plan, but flubbed the final execution.

And yeah, I dread ever have to experience it personally, or first hand.

[El Barto]

As for offing yourself, naturally I'm going to call that the selfless thing to do. Of course the trick is actually remembering to do it. 

Anyone watched Still Alice with Alec Baldwin and Julianne Moore. She had a good plan, but flubbed the final execution.

And yeah, I dread ever have to experience it personally, or first hand.

The trick is to set a timetable and schedule it NASA style up until T minus bang.

[Grappler]

My mom basically has it.  Two of her sisters also had it (a total of 3 out of the four sisters) before they died. 

It's hard - my dad is an absolute saint for taking this on.  My mom is not officially diagnosed with Alzheimer's, but she's nearly there.  She becomes combative and argumentative if you even tell her that she has memory problems.  She grew up in a German household and her dad cultivated a mentality in the family that it was shameful to admit any sort of weakness.  From 2019 through 2020, my dad and her had brutal arguments over her memory. 

We've watched it slowly progress. 5-7 years ago, it was short-term memory slips only.  She'd ask a question, get an answer, and then ask the same question again and again within a span of several minutes.  That still continues, but she also became very depressed and unmotivated.  She follows my dad around the house every single day.  He doesn't get one moment to himself.  When she's out of the house, after about 2 hours, she starts pushing him to go home.  The longer she's out, the more her memory falters and becomes noticeable to people.  She doesn't cook much anymore, and will only do household tasks if he starts them, then her control-freak nature comes out and she takes over.  She doesn't care about her health anymore (her sisters did this too) and refuses to make doctor appointments.  So my dad has taken that on, along with the household finances.  He is able to sneak notes to her doctor, which led to the memory test and spinal tap to confirm Alzheimer's.  The worst part is that he loves to travel, but she can't be away from home for too long - so his retirement is completely different than what he thought it would be, taking 2-3 trips every year and seeing the country. 

She fell and broke her arm last fall and had to have surgery to repair the break.  I had a hard time seeing her in recovery, begging and crying to go home after the doctor told her that she needed to stay overnight for observation.  It was really weird to see my mom behave like that - a combination of her mind now plus coming out of the anesthesia. 

He knows he has us, and my cousins (the kids of my mom's two sisters who also dealt with their moms) to rely on, but he wants to keep us shielded from her argumentative nature.  We just don't talk about it around her.   I'm preparing myself for the day that she doesn't recognize me or my kids.  It's coming someday.

[KevShmev]

My grandma who passed away in 2013 at the age of 103 had Alzheimer's her last years and yes it was difficult to witness. We all still visited her as much as we could in the nursing home where she resided, but it was always rough knowing that she didn't recognize any of us anymore.

Much compassion for anyone here currently dealing with it in regards to a loved one.  It stinks.

[ReaPsTA]

If I got diagnosed with Alzheimer's I would kill myself I'm not joking.

[Stadler]

Bart is right on this (we've talked.  ).  SPOILER ALERT: I'm writing most of this for myself, as it's cathartic.  Skip it if you're not interested in some oversharing and maybe a revelation or two at work.

My mom is a wonderful woman, a saint in many ways (she married a stallion, a real renaissance man, and right after my brother and I were born, he came down with severe rheumatoid arthritis, and for a while, before medical advancements, did everything for him.  Put his socks and shoes on, and probably a bunch other things I don't know about today.  She never wavered ONCE.  They are as in love today as they have ever been).   A couple years ago, they both retired, and spent 24-7-365 with each other. I don't know how they did it, but it wore on my mom.  She worried, and they bickered, and it wore her down. At one point she said what many her age say, "I don't want no 'home', I want to die right here in my condo, I love it here".

Some of you know my dad was severely injured; it necessitated her going to assisted living.  Dad is with her now, and HE'S the one struggling to adjust.  For her, the stresses and strains of maintaining a condo, cooking, etc. are gone and she's as happy as she's been in a long time. Dad is struggling (fuckin' A, I love that guy:  82 and he calls me and says "I think I need a therapist to help me deal") but he gets comfort from HER peace.   I spoke to her right before Christmas about this and she was clear: she knows she's failing, but she's happy, and she likes her new place, her anxiety is down to about zero, and she's going to follow God's will (she's religious, but not Born Again or anything like that) from here on out.   

My dad doesn't have Alzheimer's, but he does show signs of memory loss and some dementia, and I'm pretty sure I'm probably the one suffering the most over my Mom. That's not to be begging for sympathy; this isn't at all a pity party; I'm dealing with it okay with the help of my therapist.  I'm just making the point that "frames of reference" are VERY important here.   Mom and dad don't think like I do anymore and they don't have the same concerns/cares I do, so it's different.


(And if any of you bozo's haven't seen the impacts of my family on some of my thinking re: the political threads, you are not paying attention.  It has been a MONUMENTAL life adjustment to recognize that my parents - my heroes, my idols, my family - don't at all see the world the same way I do anymore, and in fact, maybe not even in the same way THEY did five years ago.  And I have to accept that as my reality now, like it or not.)

[ProfessorPeart]

I'm a big proponent of assisted suicide for health/well-being reasons. I know some states have started making it legal. Like some sort of joked, that can be a hard one to accomplish if you have Alzheimer's.

Not much else to add. Never want it, never want anyone I know to get it, but I feel that people should be given the option to end things on their own terms before they 'disappear'.

[Grappler]

When the pandemic started in 2020, my dad joked that he was surprised that my mom hadn't yet gotten covid, because she would to the grocery store 5-6 times a week (before mask-wearing became a thing).  I spent that summer thinking that it would almost be a blessing if my mom got that original strain of covid and didn't survive.  I felt awful for thinking that, but at the same time, knowing what my dad was dealing with at that time and his long rants to me about considering divorcing her, it would have been a relief on him and the entire family - both to spare him from my mom's abuse and to unchain him from needing to take care of her every day.

He's working on financial things now - taking my mom's name off of all of their assets and setting everything up in a way that if she had to be put into a nursing home, she would have zero money to her name.  She then becomes a ward of the state and the state would assume the cost of her care instead.  It's really sad that it has to come to that. 

He told me an unconfirmed rumor about one of my aunts - that her and my uncle were actually divorced for financial reasons only, so they could preserve the family's assets.  My uncle never left her and never stopped caring for her, but they had to make sure that all of their assets weren't exhausted on nursing home care.

[KevShmev]

Bart is right on this (we've talked.  ).  SPOILER ALERT: I'm writing most of this for myself, as it's cathartic.  Skip it if you're not interested in some oversharing and maybe a revelation or two at work.

My mom is a wonderful woman, a saint in many ways (she married a stallion, a real renaissance man, and right after my brother and I were born, he came down with severe rheumatoid arthritis, and for a while, before medical advancements, did everything for him.  Put his socks and shoes on, and probably a bunch other things I don't know about today.  She never wavered ONCE.  They are as in love today as they have ever been).   A couple years ago, they both retired, and spent 24-7-365 with each other. I don't know how they did it, but it wore on my mom.  She worried, and they bickered, and it wore her down. At one point she said what many her age say, "I don't want no 'home', I want to die right here in my condo, I love it here".

Some of you know my dad was severely injured; it necessitated her going to assisted living.  Dad is with her now, and HE'S the one struggling to adjust.  For her, the stresses and strains of maintaining a condo, cooking, etc. are gone and she's as happy as she's been in a long time. Dad is struggling (fuckin' A, I love that guy:  82 and he calls me and says "I think I need a therapist to help me deal") but he gets comfort from HER peace.   I spoke to her right before Christmas about this and she was clear: she knows she's failing, but she's happy, and she likes her new place, her anxiety is down to about zero, and she's going to follow God's will (she's religious, but not Born Again or anything like that) from here on out.   

My dad doesn't have Alzheimer's, but he does show signs of memory loss and some dementia, and I'm pretty sure I'm probably the one suffering the most over my Mom. That's not to be begging for sympathy; this isn't at all a pity party; I'm dealing with it okay with the help of my therapist.  I'm just making the point that "frames of reference" are VERY important here.   Mom and dad don't think like I do anymore and they don't have the same concerns/cares I do, so it's different.


(And if any of you bozo's haven't seen the impacts of my family on some of my thinking re: the political threads, you are not paying attention.  It has been a MONUMENTAL life adjustment to recognize that my parents - my heroes, my idols, my family - don't at all see the world the same way I do anymore, and in fact, maybe not even in the same way THEY did five years ago.  And I have to accept that as my reality now, like it or not.)

Posts like this are why I wish this forum had the "like" button, as I don't know how to respond this, but I would have hit the "like" button immediately.  Thanks for sharing all of that.

[Harmony]

If I got diagnosed with Alzheimer's I would kill myself I'm not joking.

Same here.  As others have said though, it seems to be way harder on the family than the person with the diagnosis.

A long time ago I crossed paths with a guy who had been diagnosed with early-onset Alzheimers.  He was 52.  It was the most heartbreaking thing I've had to witness up until watching my sister die in front of her husband and kids.  I wouldn't wish it on anyone.

Something I think our country (I don't wish to speak for other medical systems I know nothing about) needs to come to terms with like yesterday is the need to pay for in-home support for people.  My aunt and uncle have just moved into a retirement community as they are in their late 80s.  It is all being done by choice and they are lucky to have financial means but the monthly cost is absolutely staggering.  Average people cannot afford this type of care.  Add "memory care" on top of that and no wonder people die on Medicaid after blowing through their life's savings when they get ill.  And then for the people who simply can't afford adequate care they what?  Shove their parent into a substandard nursing home and hope for the best?

Being a full time care giving for an aging parent is a 24/7 job.  It is a job without vacation and sick time off.  It is a job without bathroom breaks.  Yet people do it and continue to hold down "real" jobs just in order to avoid the money suck that is assisted care.  In my mind it just makes sense to provide some financial compensation to in-home care givers along with some sort of paid respite care (when needed) to allow people to continue to live out their days in their own homes surrounded by the people they love.  If hospice is a need, it is there.  At least families could make choices and have viable options.

[ReaPsTA]

If I got diagnosed with Alzheimer's I would kill myself I'm not joking.

Same here.  As others have said though, it seems to be way harder on the family than the person with the diagnosis.

That factors into my thinking.

[Harmony]

If I got diagnosed with Alzheimer's I would kill myself I'm not joking.

Same here.  As others have said though, it seems to be way harder on the family than the person with the diagnosis.

That factors into my thinking.

Of course.  But also don't kid yourself that suicide doesn't impact your family either.  I'm speaking from experience on that one, unfortunately.

[Stadler]

If I got diagnosed with Alzheimer's I would kill myself I'm not joking.

Same here.  As others have said though, it seems to be way harder on the family than the person with the diagnosis.

A long time ago I crossed paths with a guy who had been diagnosed with early-onset Alzheimers.  He was 52.  It was the most heartbreaking thing I've had to witness up until watching my sister die in front of her husband and kids.  I wouldn't wish it on anyone.

Something I think our country (I don't wish to speak for other medical systems I know nothing about) needs to come to terms with like yesterday is the need to pay for in-home support for people.  My aunt and uncle have just moved into a retirement community as they are in their late 80s.  It is all being done by choice and they are lucky to have financial means but the monthly cost is absolutely staggering.  Average people cannot afford this type of care.  Add "memory care" on top of that and no wonder people die on Medicaid after blowing through their life's savings when they get ill.  And then for the people who simply can't afford adequate care they what?  Shove their parent into a substandard nursing home and hope for the best?

Being a full time care giving for an aging parent is a 24/7 job.  It is a job without vacation and sick time off.  It is a job without bathroom breaks.  Yet people do it and continue to hold down "real" jobs just in order to avoid the money suck that is assisted care.  In my mind it just makes sense to provide some financial compensation to in-home care givers along with some sort of paid respite care (when needed) to allow people to continue to live out their days in their own homes surrounded by the people they love.  If hospice is a need, it is there.  At least families could make choices and have viable options.

Some of you know me as a faithless uncaring capitalist knucklehead (thank you, thank you) but in all seriousness I some time ago reconciled myself to the fact that single payer medicine is simply the best option in this country, for 100 reasons that I think are perfectly consistent with being a "FUCK".     And Harmony's bolded paragraph there would be included - along with mental wellness for any age - in any single payer system that I advocated.   The current system IS expensive, and it IS burdensome, and it's just a better allocation of resources all around to invest the money directly in either a system of care, in home, or a series of facilities aimed at providing care for our aging population.  It will ultimately drive out costs (including for medicare for people that tried to live on their own and couldn't, and so suffered other ailments), it will create jobs, and it will drive better decision-making amongst that population that are near that age where they need the help, and - I get this is cold, but we're being practical - it will leave a ton of resources available to be taxed, either on use or as an estate, by the states or feds from people that would otherwise have nothing or little at the end of their lives.

[hunnus2000]

Background:
My mom died of alzheimer’s and dad had dementia before he died of the flu (a different and frustrating story).

Dad hid her condition for years and I am embarrassed to say that none of us kids recognized the symptoms, and the symptoms were there but maybe us kids were leading our own lives?(yes – I still have guilt)

Then one day, dad called for help because mom had lost her bowels all over the couch and my wife and I had to clean everything up. This changed everything!

Us kids had to spring into action to do the following:

• We immediately took over their healthcare decisions
  We put their estate in a trust
  We hired a geriatric care counselor
  We hired a service to help with mom as dad did not want her to go into a home

Luckily, dad had been taking out extended healthcare policies for both of them for years (it’s expensive folks).

I post this only to help those who could go through the same thing and if you have any questions I will happily answer.

BTW – I too support “death with dignity laws” and am disgusted with those who feel they have the right to make end of life decision for others.

To end on a positive note: I have heard the nightmares of loved one's personality turning angry or violent, but our family was fortunate, Mom and Dad were sooooo wonderful to the end. They would always be pleasant when we took them to the doctor and the nurses loved them genuinely.

[nobloodyname]

My dad had vascular dementia. He withered away, eventually in a care home, over the course of five or six years, eventually succumbing three years ago.

All terminal illnesses are nasty, of course, but dementia? It's awful. You lose that person twice. I managed to convince myself it'd be fine when dad died because he'd already gone. It wasn't and I wasn't.

It's a rather taboo subject, certainly here in the UK where we demonstrate more compassion towards animals than people (I don't say that to downplay animals at all, I love them dearly. Well, except cats. Cats can fuck off but dogs? Dogs are the best living things on planet Earth), but we wanted dad to die; to be released from his enslavement. It was no life for mum, either. My two sisters, my brother, mum... we all felt the same. And thousands of others feel that way about their loved ones, too. But we don't talk about it.

Vascular dementia isn't hereditary but every time me or one of my siblings forgets something, a natural symptom of aging (I'm 49), it's a worry. I imagine we're probably fine, though

[jammindude]

I kinda get where that emotion comes from, but IDK.

With my father, who passed away after a 16 year battle with Parkinson’s, we were all watching his body slowly shut down for years. The last month in particular was extremely difficult because he was waking up my mother several times a night to help him go to the bathroom while she was still working to pay the bills. She wasn’t getting enough sleep and she was working past retirement already. So I distinctly remember having to gently break the news to my father that he was wearing Depends (adult diaper) and he was just going to have to use it so mom could sleep. It broke my heart to have to tell him that.

But through it all, I can honestly say that it never occurred to me that any of us *wanted* to get it over with (though I can absolutely understand and sympathize with anyone who felt that way). To me it just felt more like, “We all know where this is going, and we are all determined to carry you until you get there.”

Of course, we weren’t dealing with dementia in that instance. But I did deal with a bit of that when my wife and I took care of my mother in law in our home for 13 years. But I recall very similar feelings. Maybe with the caveat of “we’ll carry you as far as we can” because with dementia, it can get to a point that they can become a danger to themselves, and they need professional care that you can’t provide. We were close to making that decision when a case of pneumonia put her in hospice, where lost the battle about a week later.

Even though I don’t recall actually *wanting* anything to happen in either case, I do remember a huge sense of relief mixed in with the grief when it was over. Because it is a huge ordeal taking care of a loved one who can no longer take care of themselves.

[MrBoom_shack-a-lack]

My father has vascular dementia and alzheimer's and it has really escalated the last year. He often says that he wants to go home when he's at home and he can't do basic things anymore like putting on his clothes, showering and so much more. It's really hard for my mother and i'm kinda more worried about her health and well being since she's much younger and my father is 93. Of course I don't want him to leave but he's had an amazing and rich life, I just don't want my mother's last years and health deteriorating by the tough job of taking care of my father. I can hear in her voice that it's taken a toll on her even if she won't admit it fully.

I know it's a really tough for her to think about the day she has to decide to send him away but we siblings are trying to support her as much as possible because we know that day will come. In a way I hope it never get's to that point and he can go peacefully.

I mentioned it in another thread but the worst thing is to see the person that's been the strong figure during your childhood slowly fade away in presence.

[Grappler]

My father has vascular dementia and alzheimer's and it has really escalated the last year. He often says that he wants to go home when he's at home

I just learned that my mom is saying something similar.  Her and my dad have lived in the same house for 44 years.  Apparently she tells my dad that she needs to get home before her parents realize that she's not there.  Her parents (my grandparents) died in 1983 and 1997.   That was really strange to hear - I don't see very much of what he tells me happens, but I absolutely believe him - she just gears herself up when she goes out and is around other people.  After 2-3 hours, that enthusiasm slips and she starts to ask my dad to take her home.  I think she's just tired of putting on a front for all of us at that time.

At home, she doesn't do much - there's no motivation to do household chores or cook.  She just eats junk food and looks out the window. 

[Cool Chris]

Without getting too political, and since Harmony mentioned it, could someone from outside the US (Chad, XJ?) chime in with how such situations might be handled in their countries, if we are going to discuss how we (Americans) can do a lot better with this?

[MrBoom_shack-a-lack]

My father has vascular dementia and alzheimer's and it has really escalated the last year. He often says that he wants to go home when he's at home

I just learned that my mom is saying something similar.  Her and my dad have lived in the same house for 44 years.  Apparently she tells my dad that she needs to get home before her parents realize that she's not there.  Her parents (my grandparents) died in 1983 and 1997.   That was really strange to hear - I don't see very much of what he tells me happens, but I absolutely believe him - she just gears herself up when she goes out and is around other people.  After 2-3 hours, that enthusiasm slips and she starts to ask my dad to take her home.  I think she's just tired of putting on a front for all of us at that time.

"Home is where you feel safe and gets a hug, it's not a physical place anymore for people with dementia".

I saw this quote from a doctor recently and it kinda hit home for me and I got a bit teary reading it because it kinda gives a reason why. If they say something like they want to go home, it might be the dementia kicking in and they feel lost so they say "they want to go home" which means to feel safe and comfort. My sister told me that she held his hand when he said that and that really helped alot.

My father often times gets scared because he's aware that he can't remember his childrens names or other stuff, he's basically aware about his dementia and when it's kicking in.

[XJDenton]

Without getting too political, and since Harmony mentioned it, could someone from outside the US (Chad, XJ?) chime in with how such situations might be handled in their countries, if we are going to discuss how we (Americans) can do a lot better with this?

At least in the UK, social care of the elderly is a pretty big topic as its quite underfunded atm, and the proposed reforms will leave a lot of lower income individuals having to sell their homes to cover the cost. I have no idea of the systems in Sweden. I expect to never use them.

[jingle.boy]

Without getting too political, and since Harmony mentioned it, could someone from outside the US (Chad, XJ?) chime in with how such situations might be handled in their countries, if we are going to discuss how we (Americans) can do a lot better with this?

From a 'care' perspective, it's probably very same to the US.  Family or Long Term Care - and like most places globally, COVID revealed what a shit-show our LTC system is - the companies (mostly private / for-profit) that run them, and the Provincial gov't oversight.

However, regarding end-of-life, we do have a federal law Medical Assistance In Dying, for people who have a "Grievous and irremediable medical condition":

To be considered as having a grievous and irremediable medical condition, you must meet all of the following criteria. You must:
- have a serious illness, disease or disability (excluding a mental illness - until March 17, 2023)
- be in an advanced state of decline that cannot be reversed
- experience unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable
- You do not need to have a fatal or terminal condition to be eligible for medical assistance in dying.

I don't know for certain, but have to believe that Alzheimer's would qualify.

[Stadler]

Not at all fascinating in a good way, but fascinating nonetheless to see how the brain actually works.  Mom went in a year ago for a kidney issue, and the doctor patiently explained it to her, she listened politely, then said "thank you; can you give that update to my sister and mom, so I don't have to?"  Both had passed in the late '80s (sis), early '90s (mom).  Dad, immediately after breaking his leg, was in a rehab facility and under a LOT of stress and kept saying he had to get back to Jockey Hollow... the street we lived on when I was BORN (and we moved about a year and a half later).  My dad now remembers things, and has decent cognitive awareness, but his sense of time is kablooie. He'll talk about things happening "this past week" and they were months, sometimes years ago.  Some of that is defensive - he's a proud man - but some isn't.

[nobloodyname]

Gah... mate.

---

Dementia can lead to funny moments. One my aunts (mum's side) sadly died, relatively suddenly. We attended the funeral, dad included. Funeral over, everyone drifted back to their cars. Dad was beaming at everyone. I gave him a hug and shook his hand to say goodbye. "Thanks for coming, mate! It's been terrific! Absolutely terrific!"

One of my favourite memories of him.

[MrBoom_shack-a-lack]

Gah... mate.

---

Dementia can lead to funny moments. One my aunts (mum's side) sadly died, relatively suddenly. We attended the funeral, dad included. Funeral over, everyone drifted back to their cars. Dad was beaming at everyone. I gave him a hug and shook his hand to say goodbye. "Thanks for coming, mate! It's been terrific! Absolutely terrific!"

One of my favourite memories of him.

That's sweet in a way.  There's humour moments for sure. My father according to my mother is sometime dressing up when watching tv. He used to be a orchestral musician so when there's a concert on tv he just feel the need to dress up because his mind is tricking him that it's real which my mother finds funny.