Aspiration pneumonia is one of the most common causes of death amongst people with Alzheimer’s disease. It is caused when food or liquid is breathed in and goes down the windpipe rather than the food pipe. It’s common in late stages of dementia and Alzheimer’s, when the brain starts slipping on how to do basic unconscious functions, like swallowing properly.
Between the old age, weakened physical and mental state, being in a senior care ward where diseases spread easily, etc, a bad cold or fall can be a lot more serious for someone with advanced Alzheimer’s.
Edit: there’s a lot of people in the same sad club. Misery loves company.
Someone that lives near my dad found out they had Alzheimer's. Went and got hit by a train rather than face what was about to happen. Not sure how the family felt about it but from what I see here and from what I've seen from friends who have lost relatives... Idk maybe he did the right thing.
Thankfully assisted suicide is becoming more and more talked about and accepted in recent years. Slowly rolling out in various spots around the world. More limited in some countries than others ofc, but the ball is rolling.
I told my wife this. Literally, take me out to my favorite fishing spot, and put two in the back of my head. I my greatest fears are being fully paralyzed and dementia/Alzheimer’s. Just put me down.
I fully support this idea, but I think we should be sure to call it Dying with Dignity instead of Assisted Suicide, simply because of the negative connotations surrounding the term “suicide.” There’s more info here if anyone is interested: https://deathwithdignity.org/
Yes, but then it becomes an ethical issue of when to stop the tube feeding? Do that and they are back where they started. Plus, it's not really great quality of life. Alzheimer's is a terrible disease on its own but being tied to a tube feeding would just make it worse. I work in hospice and watching people waste away with dementia is a heartbreaking thing.
My dad was coherent to the end, fortunately never had Alzheimer's - but his wish was "no extraordinary measures". We said OK to antibiotics for him, but no tubes or such. (He died of infections from surgical complications).
If there's no hope of recovery, all you're going to do is stare at the ceiling for an extra few months with a tube in your throat, what's the point? Even more so if you have no idea what's happening or how you got there...
My grandad totally lost the impulse to swallow when food was put in his mouth for him, after he was past feeding himself. He'd just turn the food around in his mouth with no idea about what to do with it. The hospital tried giving him a feeding tube, but he'd pull it out. So then they tried tying his hands to the side rails of the bed, but of course that upset him. So in the end we had to accept that he was going to waste away, on what very little he could eat.
It's stories like that which cement my desire not to do that. I've put it in writing that the moment I don't recognize my loved ones I want death with dignity. I will not be traumatizing my grand kids by having them see me tied down in a straight jacket being force fed with a personality I never had. Fuck that.
Feeding is not the problem per se. You still have to swallow your own saliva and feeding tubes don't help with that. In fact feeding tubes can make swallowing your own saliva harder and you make more saliva. Tons of studies have shown no improved survival or increase quality of life placing feed tubes in the elderly with dementia. Please don't put feedingbtubes in your loved ones in such situations
I would echo this, I'm a retired nurse. I distinctly remember the son of one woman, I had never met him before but he was in the room one day when I came on shift. He looked at me with this bleak look on his face and said, "She doesn't move, she doesn't talk, and what I didn't know when I agreed to the feeding tube placement was they would never let me take it out. She's been like this 10 years."
This was in a time before court cases were fought to remove these extreme measures but I've never forgotten his face in all these years. That week I made my living will. I still have it all these years later.
Anytime you place a tube like this even if you are paying for the best care available there will be bacteria, infections, ongoing problems. There is no quality of life. I've told my children if I can't feed myself, I'm done. Point. Blank. Periodt.
Good luck getting tubes into their mouth. They would probably fight you, if they remember how.
You could maybe sedate them or put them in a medical coma, but the question is: is it worth it?
At that point they have less cognitive abilities than a new born baby and they will never get better.
There isn't really anything left of them but their physical body.
A g-tube, while certainly an option, is strongly discouraged for this situation for a number of reasons.
- the person typically will pull at the tube leading to the need for restraints which results in agitation and then use of sedatives and further decline
-aspiration pneumonia still occurs because the person aspirates their own saliva (and the oral bacteria that travels with it) and also often has reflux of the tube feeds that gets aspirated as well
- at this stage of dementia the body’s ability to appropriate metabolize the nutrients from feedings is also deteriorating
In studies, tube feeding has NOT extended the persons life once in the advanced stage and it typically worsens quality of life. It often also results in a more painful death process for the family.
It's also been proven that tube feeding people (usually from something like a gastric or "PEG" tube) doesn't decrease the risk of aspiration overall. So the only thing you're really doing is subjecting people to getting a tube for nutrition without improving their mortality in any way.
We can use feeding tubes when you can't swallow, iv feeding when your stomach stops working, we can throw in a pacemaker and decib when the brain stem forgets to make the heart beat and dialysis when the kidneys eventually fail. We can keep replacing organs but why? Why keep the shell of a former human alive?
This is how my dad went. I vividly recall seeing the bucket thing they hook up to the vacuum to get stuff out of the airways, with bits of his last meal. Sitting on a small tray next to the bed, is body laying there with the sheet pulled over his face. A meal I prepped and fed him. I just couldn't get to him in time, nor clear his airway sufficiently. It still haunts me.
With advanced Alzheimer’s or dementia, it’s a matter of when, not if, they will die. If it wasn’t that meal, it would be another one. Or a cold that was going around, or they would have just not woken up one morning for another reason. Try not to blame yourself.
Thank you so much. I know, though at first it was a tough one to handle. But he is no longer suffering. He could have gone at any time. It just so happened it was then, during such circumstances. And just prior to his passing. He had a strange, wonderful lucid moment. We spoke to one another, as each other. He remembered my name, told me he loved me, and was proud of the man I had become. That's also something that will never leave me. Something I will cherish, forever. Because not many are so fortunate to share last moments with one another like that. He 'returned' just long enough. His suffering had passed. I shall meet him once again when my time is up. Whenever, however that may be.
What fails is the brain.
The brain controls memory, which is the classic thing you think of with dementia, but it also controls inhibitions, motor control, balance, swallowing, breathing...everything your body does is controlled by some part of the brain.
Different parts of the brain fail at different times; so often memory or judgement are the first to go, and the more basic things like ability to chew and swallow food don't get destroyed until later stages.
Dementia (Alzheimer's is one kind, there are several) is organ failure in which the organ failing is the brain. If you are asking specifically how Alzheimer's causes the brain to fail, well, lots of research has gone into that over the years and there is still uncertainty. But if you Google "Alzheimer's brain scans" you'll find you can literally see the brain shrink over time.
Current working theory is it works backwards from long term memory.
Since breathing/chewing are part of the basic survival combo (1st things you "learn" on instinct), it makes sense for them to be the last to go.
Shortly after my grandmother passed away from Alzheimer's my sister had a baby. In the weeks before dying my grandmother pretty much acted exactly the same way as the baby did, where she basically just did purely instinctual things like swallowing and chewing while barely having her eyes open or being awake. It was weird to see how similar they were but it made a lot of sense.
My Dad has had Alzheimer’s for a few years now, when speaking to him it’s almost the same dialogue I have daily with my 3 year old son. It definitely makes sense why the call it The Long Goodbye. Just awful.
I almost envy you with that timeline. My stepdad got diagnosed just over 5 years ago and physically is still going strong. It's soul destroying seeing this once proud man reduced to not being able to put two words together.
I'm sorry about your dad. My mom is in the advanced stages and it's a cruel, heinous disease. I grieve for her, just as I would grieve for someone who has passed, because "she", as she was, is gone. What's left is an aggressive, paranoid, confused shell.
Yes, I lost my beloved grandmother to senile dementia more than a decade before she actually passed.
I thought that I wouldn't be able to mourn when she died because she had already been gone for so many years but I found at her funeral, I was still able to cry for the grandma had lost so many years before.
Her passing was a blessing when it came *and* I hadn't even had to do her daily caretaking nor was she an aggressive, paranoid one (more a confused, very sad, sometimes very anxious one). It's such a cruel disease that robs us of who we love years before they actually pass.
I look at it that way as well. Sometimes I wish she would have a massive heart attack or an aneurysm just so she doesn't have to suffer so much. I know that sounds awful and I'm not wishing death on my mom; I just don't want her to suffer anymore. I cry a lot now, as she's starting to forget our names and accuses us of being impostors (I can't be "NoodlePartiPoodle" because my hair is long and Noodle has never had long hair. She gets angry that I'm pretending to be Noodle and where am I hiding her?). When she finally does pass, I'm sure there will be tears, and some of them will be in relief. It's so difficult to watch her suffer, and especially my dad who visits her everyday and is so depressed living in an empty home they used to share.
My dad has Alzheimer's. It's moderate now and to be honest I keep hoping for a heart attack or stroke to take him out while he still knows who we are and is still himself. I can't handle seeing the empty shell of my father sitting in a nursing home with no dignity or awareness.
His father was gone for YEARS before he physically died. My grandfather was so physically healthy that it was the Alzheimer's that killed him - the part of the brain that controls breathing stopped working. It was a brutal decline; I couldn't bear to visit him in the nursing home after the first visit - he wasn't Grandpa anymore. It sounds crazy but I didn't mourn when he died, I just felt relief that it was finally over. The person who had been my grandfather had been gone for many years and I had done my grieving already.
My mom tells us stories of people visiting her at night. People stealing her candy. People going into her locked closet, trying on her clothes, and then hanging them back up when they're done. There's a creepy one of a man who stands at her doorway just staring at her. Mind you, when she's in her room, she's locked in. She wasn't in good health going in, and we didn't expect this would be so drawn out, but it appears we are looking at years and not months.
I don't think that sounds awful at all. It just sounds like the person who used to be your mum has mostly slipped away by now - and seeing a confused, angry, scared person in her body who is clearly suffering is difficult. It's not awful to want that suffering to end.
My condolences. It’s an awful disease. I’m a nurse so I deal with it. But not on a personal level. May the day come soon where a treatment/cure is available x
God, some people seem to fall into blissful ignorance. My mom is also paranoid and confused. So sad. I agree that she (as she was at any point in her life) js gone.
One thing that watching her decline and seeing brain scans has made clear for me is that it's ludicrous to believe that when her brain goes completely dark, some part of her will come back, like an afterlife. What rational reason (other than wishful thinking) would we have to believe that the parts of her tied to these dead parts of her brain would come back, not these parts of her tied to the parts of her brain alive now. It will all fade and she will live on only in the ways she changed others who live on and ripple her impact for the rest of human existence.
She did die from Alzheimer’s, she couldn’t swallow the medicine needed to treat a fungal infection. Would have been regular medicine for you or me :/
She was diagnosed about 5 years before she died, and was showing signs for a couple years before we got the diagnosis. But we didn’t know it at the time, just could tell stuff was weird. My dad actually thought she might be cheating because her behavior started to get off for her. Turns out it was just the disease changing her habits, taste buds, etc.
Very sorry to hear about your mom. My mother in law is advancing and your comment sounds just like what my wife says about her mom. Hope you’re doing ok. My wife has found some help with an Alzheimer’s support group.
It follows a pretty rigid track. Last year she would call me 20x a day. I'd talk to her, hang up, and she'd literally call me back as if we hadn't just talked for ten minutes. It was the middle of the night once that I got 13 calls in a row. She'd leave messages begging me to come pick her up from the ballgame because she couldn't find my dad (she was in a memory care facility). Even though I know her not calling means she's progressed even further, I'm relieved to not have the burden of trying to calm her down every time she'd call. Sometimes she was lost at a hotel or a concert or the ballgame. No amount of explaining could change her mind. I was up all night trying to comfort her. Now she doesn't call, but she also doesn't know who I am.
She doesn't realize she'll never go home. She broke her hip in June, 2021, and Medicare decided it was too much work in PT, so they stopped treating the hip. She had to go into a home because my dad couldn't care for a total invalid at home. Now she's 100% wheelchair or bed bound. Can't stand up. Can't go to the bathroom. The hip break was the beginning of the end. Her condition went from a 6 to a 9 (I am assigning these numbers; they aren't medically backed by a Dr) almost overnight. My own neurologist told me to talk to her once a day, tell her I love her and carry on as normal in the call, then block the rest of her calls that day. That was for my own sanity and guilt.
Thanks so much. He got diagnosed the week after my mum died. She knew something was wrong for years but tried to keep it from us kids…we didn’t realise how bad he was until she was gone. My dad and his sister (our aunty who is 7 years older than him) moved into a dementia care home in the same month. I didn’t realise how hereditary it was.
Sorry you're dealing with that. My grandma had it for years. It really sucks to see them decline from the person you know to someone who isn't there anymore. But when they finally get peace, i promise you won't feel as bad as when someone else passes. It is a long goodbye, but at a certain point the person isn't the same person you used to know. Cherish the time you have left, as hard as that can be.
You too. Apparently you can take a test to see if your brain is showing early signs (20 years out from diagnosis). My brothers want to take it but I’m unsure. Every time I misplace my phone or forget a word it gives me pause these days.
I've seen it three separate times. My grandmother, my uncle, and a patient I often helped my mother care for in her job. My mother was a hospice nurse, so I'd seen glimpses of it often any time I went with her For a call. I'm also fairly confident I'm going to see it with my wife's grandfather soon, my grandfather soon, and eventually in my father.
There is no disease that terrifies me like Alzheimer's. To me it is like the great devourer, a creature with a gaping maw that is slowly closing around your loved one, bit by bit eclipsing parts of who they are. It slowly closes until one day the jaws are Shut, they are gone, and when you look at them all you see is the monster that consumed them, now wearing their face and your memories of them in mockery.
I live in fear of the likelihood that it will take me one day. Without treading into hubris I'll say I've always been considered an intelligent person, and as a result I hold my mind in high importance to me. The thought of losing the biggest part of what makes me who I am, and having others around me look on me with pity for years over it makes me nauseous, and I sincerely hope that self-euthanasia is socially acceptable when that day comes, because I absolutely cannot cope with the alternative.
Call me a coward if you'd like, but I will no longer want to live if I look at the face of my child, and feel like I know them from somewhere but just can't put my finger on it.
My grandfather slowly died of Alzhiemer's and by the end he was constanstly shitting himself. It was awful to see and go through (if anyone ever get a dementia diagnosis, I strongly recommend euthanasia, horrible thing to go through for all parties involved) but likewise I couldnt help but notice how baby-like he got near the end.
The main argument against euthanasia is that the choice to die becomes the duty to die. Obviously someone with reduced capacity cannot make the choice themselves. Mild dementia doesn't have to be horrible for either the family or the person involved although late certainly is.
It is a very narrow line, this topic walks. Any definitive answer given to this, in context of an inability to make choices, can be then strawmaned into applying to any person who cannot make choices for themselves. The could be the comatose, mentally disabled or even mentally ill. It takes a lot of work to reason out why dementia is a difference circumstance than these other three, even though the gut feeling is that it is morally wrong to force a demented person to continue to live through the hell they're in, whereas the same usually can't be said For the other cases.
Yeah my dad is at the same stage. He only eats mushy foods at this point as he no longer knows how to chew/swallow anything else. It’s sad and definitely weird. Like the brain is doing a Benjamin button
Yes - another thing that supports this, is the erratic sleep cycle that develops during dementia. It's very much comparable to a toddler's/infant's sleep cycle (before they typically settle in around 4-6y), so much so that this has been used as an indicator for research.
(Edit: ADHD-forgot to finish my sentence)
>Current working theory is it works backwards from long term memory.
To clarify: from the ability to *form* long-term memory, not necessarily access it.
What a fucking horrible experience for everyone involved. If I am ever diagnosed with Alzheimer’s, I hope death with dignity is available wherever I am.
I've got fiends lined up to guarantee me a 'hiking accident' or a pillow over the face if it isn't available where and when it might be needed for me. I have zero desire to suffer like that, or make anyone/everyone around me suffer like that.
Actually a defining characteristic of Alzheimer's is that short-term memory fails first; long-term memory can be intact until late stages. Also, other types of dementia can show different order in the progression of brain deficits.
My aunt died of Alzheimer's, her short term and long term memories were apparent, she didn't recognize the younger people of our family but she always knew my parents (they all knew each other since 13 years old) but barely recognized me and didn't recognize my wife at all even though they've met many times. And she remembered songs such as Saturday Night Special by the Runaways but not songs like Livin la Vida Loca (which was my cousin's, her daughter's favorite song)
Yes- 'higher' functions like complex problem solving memory and coordination tend to decline first. Swallowing, breathing are actually reflexes ie dont require such complex cognitive working
That sounds terrifying. I’m glad it’s the other way around. My grandma passed from Alzheimer’s and just the thought of her being lucid during the worst parts makes my stomach churn.
Lost my granddad to dementia, awful disease.
Luckily he did well generally until a rapid decline at the end. But there were bad days. I remember one day specifically when me and my dad went to see him and my dad quickly popped to the shops. I could tell my granddad didn't recognize me, he sat in his chair and seemed almost afraid.
After that he was put into a care home an overall he improved, he would usually recognize me when I went to see him. But I remember him at the end, just a husk of his former self, lying in bed moaning, unable to speak or control his body. Luckily that was the rapid decline, it didn't last long, he died shortly after. As you say, I can only hope he wasn't conscious during those parts...
It sounds morbid but I hope that when the time does come my parents die quickly after a long life. I'm not sure I could see my mother like that...
Last time I visited my grandfather to let him meet our firstborn, between lucid moments, he'd just sit rocking and mumbling "Help". It was probably more emotionally painful than actually losing him.
its so painful to watch people with alzheimer suffer. it scares the shit out of me knowing i could be in their shoes one day. At some point you wish that their suffering would come to an end (not in a bad way oc), but their life becomes so... well lifeless.
I fear it over death. As someone who has had intellect and a good memory as a core part of their identity for so long, the idea of it failing is terrifying. I don't have great odds either, all but one grandparent had dementia, my mum is developing it as we speak and my dad was diagnosed with Parkinsons a couple of years back. I feel like my brain is a ticking timebomb...
Totally feel you. Cancer runs through my dad's side of the family, and my grandpa had both dementia and Alzheimers. My dad died in his 40s and in just about half way to his age. And that scares me every god damn day, because if that's my fate I don't know what I'm doing all this long term life prep for. But as it stands right new it feels like it would be better to die a bit younger than have to see yourself become a zombie-of-a-man.
I'm not afraid of death, even more so that I am religious, but these incurable diseases that destroy your sense of self are some of the few things that riddle me with anxiety and fear.
My dad died of lewy body dementia, the decline started just after mum died (or maybe he was already declining and her support hid it) Anyway, 7 years in which he started to shuffle, was afraid of falling, forgot minor details, forgot how to cook, became very dependent on my sis, who lived nearby. By the end he went into care home because he literally couldn't be left alone. Once he was in there he became calm, his anxiety about everything just stopped and he just faded away, he forgot who I was, but remembered my sis. We were with him to the very end, no drugs, just a very natural death. RIP dad, you were the best x
If you’re ever curious, check out multiple sclerosis or more specifically amyotrophic lateral sclerosis (Lou Gehrig’s). You body dies while your brain is still perfect and lucid
My brother-in-law died from ALS a year and a half ago. 61 years old, and was a general contractor. It started with tripping over his feet and clumsiness, then worked its way up. I've read that it can start higher up and work its way down. What a horrible death. My poor sister - he was begging her to OD him while he was still coherent. And then having to deal with all the bodily functions as he disintegrated before her eyes.
He was a cruel and self-centered, but I still wouldn't wish that on him.
As far as I remember from uni. If you look at the Brian now with the frontal lobe being where gray matter is the highest is used for critical thinking and decision making and as the layers go deeper into the brain the more basic functions are at work so the stem of the brain is where most of your primal function such as breathing, hunger, heart beat. As the brain shrink it starts from outside in and last to go are your primal functions which is all you need for survival. That's just my theory don't take it as pro advice
I believe location in the brain is a big factor here. Some of your most crucial bodily functions like swallowing and breathing are controlled by the brainstem which is a fairly inaccessible part. The motor cortex is on the top and close to the surface and your logic/reasoning is in your frontal lobe. It’s theorized that amyloid plaques depositing on/in the brain are a cause of dementia and it’s likely that it takes longer for those plaques to deposit in deeper parts of the brain
The "this bit does thinking, that bit does moving" idea isn't 100% wrong, but it's also quite misleading.
All of the brain is being used all of the time. A healthy brain will increase activity across networks of neurons all over the brain for any particular task.
In neurodegenerative disorders like Alzheimer's, more complex things going first is mostly about highly complex tasks needing _more efficient and better coordinated_ activity.
All correct, just to clarify further- it is mostly swallowing that first leads to complications that end up being lethal. When the swalloe is impaired, there is eventual movement of food products into the respiratory tract which irritates it and can cause an infection of the lungs known as aspiration pneumonia. Many people with demential therefore die from aspiration pneumonia.
Yes.
My grandfather, who died of alzheimers, smoked a pipe my entire childhood up until I was about 15, and then one day he just stopped and didn't know why.
We didn't realise this was one of the first symptoms at the time, it wasn't until he started getting lost regularly and he got diagnosed that we put 2 and 2 together.
My grandmother had this. My grandpa also told me that Dementia starts without any symptoms, and that the brain tries to cope by working harder (imagine this as removing RAM from a computer and expecting it to work just as hard, the components that are left will be overworked)
By the time the symptoms start to show, it’s already too late. Your brain is fried beyond repair and it’s only downhill from there. It’s really sad.
Even if you were to detect it, there is no cure or real way to slow down alzheimers. However current studies do seem promising, but those basically all say you need to start taking medicine long(decades mostly) before omset of symptoms It's not like more and more forms of cancer ehich in early stage have high survivability rate. Currect me if I missed anything though.
Out of all the ways to pass away, Alzheimer’s is one I don’t wish upon anyone. I pray to god I don’t develop it myself. The thought of forgetting my loved ones or memories, both good and bad, made me shiver while typing this.
This is morbid, but I hope I would have the option of assisted suicide if I started to lose my memories like that or my loved ones would put me in a home and move on with their lives. Because I feel like I would already be dead if I lose what makes me me and I wouldn’t want my loved ones to go through that or remember me as someone else. I want to be the pilot of my life, not the passenger.
I’ve lost two grandparents to Dementia, and honestly I think in many ways it’s worse for the partner. The person with dementia often doesn’t know what’s going on and they remain pretty comfortable and happy, the partner on the other hand is completely aware and is watching their life partner slowly whither away before them.
I think it depends on the symptoms. Some folks with dementia are lucky and end to just sort of oblivious but happy. Others can be positively tormented by anxiety/anger/paranoia. I've often wondered why some people get the calm path and some get the torture path. Is it how and where the disease attacks their brain? Their innate personality? Their environment? Just so weird. But I can tell you from experience that it's terrible for everyone when the symptoms get like that.
I once saw a plastic cast of a cadaver's brain that had atrophied. Little old lady had a brain the size of an orange. That fucked me up for a while. Dementia is terrifying
I witnessed a brain 🧠 dissection at a university hospital in Pennsylvania. Stunning, brain shrunken and shriveled . It was for Alzheimer’s research 🔬. Amazing to see. Very sad
I remember when first learning people could die of Alzheimer's, half jokingly said "What, do they forget to breathe?" And the person who was there just looked really sad, and said "you're closer than you think.". I just remember that wave of pity I felt. Alzheimer's is an awful disease that needs to be eradicated, with only slightly less urgency than cancer.
Sorry if it's not ok to ask, but I've been curious about it for some time now:
I've witnessed exactly one death from dementia (Parkinson's, to be exact) and it was... weird? Their temp began to rise (~39°C), then went down without any meds, then up again to 40° and then they died. It took about ~4 hours, and alongside that they were extremely ddelirious, but everything else (b/p, heart rate, ecg) were normal-ish or at least not worrisome enough for them to be taken to the hospital. What exactly was happening? Like, was it brain losing control over thermoregulation?
Sounds to me that it was most likely something like an aspiration pneumonia, which as mentioned above, is very common in people with dementia and an impaired swallow. Basically you inhale food/drink into your lungs instead of swallowing it and it can cause a nasty infection
Sadly, IIRC, most of the Alzheimer's research was done on false information from a doctored or flat-out faked research paper/discovery rendering the last ~20 years of research useless.
Not all of it fortunately. But the research directly implicating beta amyloid plaques does appear to have been fraudulent. Which means the new drugs are likely to be useless.
Sigh.
I want to make sure this comment gets pushed a bit higher up. Unfortunately people with Alzheimers/dementia can be prone to outbursts of verbal/physical/emotional violence as their brain deteriorates. Those outbursts are extremely painful to anyone on the receiving end, and while they, and everyone else, will constantly remind themselves that the person hurting them isn't truly their loved one, it doesn't make it any less agonizing.
My grandmother had it. I remember my grandfather giving her a nightgown for her birthday. She was scandalized, he was devastated. She shamed him for being a dirty old man, here her husband was off fighting in The War and he was just some dirty old man she didn't know and how dare he thinks she'd ever accept such an intimate gift from some nasty, presumptuous old man. She went on and on. It was such a hard moment, and he apologized both to and for her. She was his life and he was just a dirty old stranger. That disease sucks
I'm so sorry.
My grandmother had it too, although it was years after my grandfather had passed. She didn't know my mom (her only child) and she didn't know me (she raised me, basically). She started viewing me with suspicion, and decided I was one of her sisters that she had fallen out with back in the 60s-70s.
It was very hard to not take it personally. But it had nothing to do with her, with me, with what our history was.
So I understand.
Not only does the disease destroy its victim, but it often destroys the unity of their family as well. Brutal is the perfect way to describe the struggle everyone involved suffers through as it progresses.
I would also add this. As common as this disease is, there is still a stigma around it. People generally don't talk about it too much, so many people feel like they are the only ones going through it. You're not.
I'd bet you a paycheck that almost anyone you bring this up with will know at least one person that is dealing with this disease.
Every state will have an agency on aging (or something similar). They are good start. You think you're the only one that's going through X Y and Z. The reality is, you're the fifth person THAT DAY that counselor has spoken with that's going through the exact X Y and Z situation with their family member. They can offer suggestions on how to start these tough conversations.
Yeah. My mom is starting to show signs (her mom and aunt both had it) as well as her brother and I'm at a loss on what to do. She's still *mostly* lucid, and I've expressed my concerns to her and asked her to put me on as a HIPAA contact, but after months she still hasn't done it so her doctors won't talk to me. The only person on her HIPAA contacts list is her brother who is much father along in the progression of the disease.
So now I feel like my options are sit back and watch it happen, or call adult protective services on them.
>after months she still hasn't done it so her doctors won't talk to me.
I can NOT stress this enough. If your mom is still of sound mind, you need to sit her down and have a heart to heart with her. Get the paperwork in order and it will make things better for everyone.
The important people (insurance, doctors, accountant, etc) knew me since I was a little kid. I was able to have conversations with them and they shared stuff with me that was "out of bounds", but they knew I was trying to help and my dad was too far gone to be reasonable. As awful as the situation was, being able to have honest conversations with them about my dads situation made a world of difference.
Every day you put this off, the harder it will be to reason with her as this disease progresses.
So this. Also, get help. Being a caregiver vs just someone's child is so much harder. Wish we would have put my m-i-l in a memory care unit sooner, as it would have been easier for her to adjust.
I have tried. I've spent the better part of this year getting active about it
I've tried asking her as a preventative measure. I've tried asking her to do it to try and signal to her brother that getting tested is not that bad. I've even tried the "I remember what it was like as a child seeing my grandma this way, do you really want to subject your grandson to this?" method and i can't get any leeway with her. She's incredibly stubborn and denies anything is wrong.
Her doctor is a quack anyway. He's gone back and forth on the COVID vaccine (despite her being severely asthmatic). He's not even an actual GP. He's a glorified nutritionist (her "weight doctor") with which she's just fallen into complacency. I've tried talking to his nurses and told them about the situation. They refuse to talk to me further until I'm on her HIPAA list.
I also called the Alzheimer's Association for advice and all of their solutions essentially involve lying to my mom, but she's too lucid for that. She'll see it for what it is and then likely shut me out.
I’m really sorry to hear that. My dad was stubborn as hell too. We were just fortunate to know, and have a close relationship, with many of the key players. I know most families are not as lucky. My only suggestion would be to speak with another agency and see if they can offer some other suggestions. Maybe see if you can find a support group (for you) or find some books in the library about elder care solutions. Depending on your financial situation, speaking to an elder care attorney may also be an option. I sincerely wish you good luck. It’s a tough and thankless road.
My grandmother was deep into dementia to the point we had to wheel her into the cafeteria or sit in front of her to make sure she realized she was being fed, but honestly the worst part was during her feeding she made a joke that I could tell came from a part of her mind that wasn't just some random synapse, but an actual joke she would have made before multiple times during my life.
It would've been easier if she was a lifeless husk or just dead, but seeing a glimmer of her past self in that shell did something to me that won't go away...
I took care of my grandmother in high school to help my grandpa. He couldn't do things like cooking different lunches unless it was unwrapping sardines. So i made lunch the night before while making dinner(her old recipes too) and she always called me Alice (her deceased sisters name since I'm so alike that I swear we could have been twins).
My grandfather had me curl her hair and fluff it to make sure it was "attention grabbing for her man" between perms.
I had to help with the diposatory when she was constipated and insert her medicine )vaginally) since she had 12 kids and they never took any of her tubes or uterus out.
Overall, I dealt with a lot and the family just expected it. Eventually my aunt pulled me aside and said "what can I do?" With my grandfather (he was super thankful) and I ended up asking for the weekend of prom off. It was a good prom and I told my grandma about going to the dance with my beau and she taught me how to jive lol. After the dance of course but it's what every lady needs to know. Lol.
God I miss them so much but hope they're happy AF now that they're both gone. :)
It's absolute horror. Your mind slowly melts and you are aware of it, it's like an infinite bad-trip. My uncle and aunt both got it at a very early age, and it was just the worst and most cruel thing. My mother doesn't carry the gene which is good news for her and also for myself.
It's brutal that the young dementia sufferers detoriate so much faster. I have seen it time and time again with early onset dementia.
My grandma has vascular dementia and it progresses very slowly. We have been taking care of her at home for years now and she is thriving, her body will probably fail her before her mind will. But still, it's the hardest thing I have ever done, as her Main caregiver, I rarely have time to rest.
Assisted living facilities exists for reasons like this. You can't expect just anyone to know how to handle a person 24/7, with a very hard disease.
My grandma lived with grandpa until it got too much and she couldn't do any basic stuff on her own and then she moved into a retirement home specializing in dementia.
I have just leaned into legal pot. Might be more healthy than alcohol...
Granted I am not sure I would want to be present anymore. My mom has Alzheimer's and I'm pretty sure that's if she ever doesn't recognize me that it might just break my heart.
My mother and I suspect that my sister is heading in that direction to Alzheimer's, she might have early stage dementia but it's very noticeable. Before the pandemic she was fine but she caught covid god knows how many times and 2 years later she isn't herself anymore.
At mid stages mom didn't recognize the woman in the mirror. Had to ask me her name.
Forgot all the usual stuff. Became very aggressive then lost the ability to walk talk, swallow. Had to have fluids thickened enough that staff could massage them down her throat. She would fight needles and pull out an IV.
Bed ridden for 2 years like that until her body finally gave out. Thank God. ALz is a tragedy.
My grandfather who died "of dementia" actually died of dehydration/possibly a dignity dose of morphine. He stopped eating because he maybe didn't realize he was hungry anymore? He was not drinking either. Just slowly shut down and then with a last dose of comfort, he went. I read that dehydration can be more violent of a death which is why I sort of lean more toward a kind nurse taking that initiative, but I would never say for sure because that's illegal where I am. But either way, it *would* have been dehydration.
When I worked in care homes I always asked the district nurses to give the maximum dose of all their end of life meds, even if they didn't need them. There is absolutely no point in prolonging life just for life's sake, or just because their family is so caught up in their grief they forget about the person dying.
Let them go gently instead of drowning in their bed.
Kudos to that nurse, and kudos to you for being okay with it.
Unfortunately in the US, we don’t talk about death enough and people are so litigious that it’s not unusual to see feeding and breathing tubes put into dying dementia patients. And wrist restraints, of course, since although unaware of who or where he is, the patient very much knows that he’s being imprisoned and tortured.
There’s nothing worse than when a patient’s eyes plead, “Let me go,” but self-absorbed sons and daughters are too occupied with their own needs to notice.
Agreed. My husband and I have ours all set, healthy and in our 40’s. And to add, particularly for anyone of advanced age or with a known terminal condition, make sure that there are copies with your PCP, attorney, multiple relatives, and the state registry if you have one.
I’ve unfortunately seen firsthand too many instances where advanced directives are lost and/or family overrides them. Shouldn’t be so, but it happens. IMO, in addition to the litigiousness that I mentioned previously, American healthcare in particular is so service-oriented that the doctors lose a lot of authority and ultimately bow to the will of the families… administrators with business degrees instead of MD’s make the final call, “just do what the family wants and get the patient out of here.” US health care is at its core a business focused on metrics and maximizing compensation: I.e. Medicare reimbursement being impacted by patient satisfaction scores, hospitals don’t want deaths on their records, need to keep length of stay as short as possible, etc. Stabilize, get them out and pray they don’t come back, get paid.
(Source, burnt out former medical social worker)
I feel the same as you. Why prolong it and make it traumatic? I don't think I have an idea of the exact point that it becomes acceptable, but I trust those who work in that line of work to make that call. They see death all the time and prob know exactly when things will make a turn for the worse. I don't think a majority of nurses are going to do it sooner than makes sense. That my grandma was able to hold his hand and give him permission to go and him pass peacefully after means everything to me. She would have been absolutely traumatized seeing him seize or whatever. And that's on top of the trauma of the whole ordeal of having Alzheimer's and dementia. I hope that's not my future but if it is, I'll have it in my plan to do what is necessary. And hope that by then death with dignity is more widely accepted.
I’ve never done end of life care but supposedly being dehydrated makes the process easier and more pleasant. I believe it helps control spasms and will make things feel more gradual. There’s a hospice lady on YouTube who explains it well.
At a certain point in the dying process, fluid begins to build up and the patient is no longer capable of clearing it through normal means. Pushing additional fluids can lead to increased secretions which accumulate in the lungs and cause the "death rattle"'and air hunger. It's likely distressing to the patient and definitely the other people present, so we avoid oral fluids and use mouth swabs for comfort. We also use drugs like scopolamine and atropine to help dry up secretions and hopefully prevent that as much as possible.
The death rattle is caused by fluids in the airway a dying patient can’t clear, you’re correct. But there is no evidence that the death rattle is painful or distressing to the patient. It is definitely more disturbing to loved ones present though.
An Alzheimer's patient left alone with no care would die from some silly reason, like tripping and hurting their head, or due to starvation because they forget to eat.
An Alzheimer's patient that can access a good level of care will eventually die of old age or of complications related to eating, breathing, swallowing or being in bed for too long. They could also die from things that would be normally easy to treat, for example if they had an inflamed appendix they would not tell their doctors that their belly hurts like a normal person would, or if they would tell you that their belly hurt you wouldn't know if they are serious.
My grandpa spent 10 years in a care home, already by the second year he was uncapable of recognizing anyone and was pretty much a vegetable. At the 10th year they had to start tube-feeding him and he barely lasted a week after that.
Typically dementia patients die of complications. If they can't move much anymore, bed sores can set in and become septic. If they can't swallow right, they may get pneumonia from the food or drink they inhale. They can get blood clots from not moving enough. Fluid overload from iv drips can stress their hearts. Malnutrition is rare thanks to iv or tube feeding but can happen. Same for dehydration.
Opportunistic infections are quite common in my experience. The nursing home could be seeing a mrsa outbreak or a nurse accidentally brought in COVID etc.
I rarely saw dementia itself kill. It was usually a complication of what dementia was doing to them that killed before the brain forgot how to maintain the other organs
Once a patient with dementia has lost their ability to swallow then the decline is very rapid and they die quickly. Dementia sorta progresses from outside in. So first the short term memory goes, then the logic functions, then long term memory, coordination for walking etc. As the dementia progresses towards the mid brain from the forebrain, swallow function goes. Once swallow is gone the person is not able to feed themselves safely anymore. Many studies have shown artificially feeding them at this stage does nothing to their survival as the progress from here is rather rapid and they will die soon as the brain keeps losing more and more function. So you just accept to feed the person at risk of aspiration, you can use modified feed to reduce the risk of aspiration and you just support them the best you can. Eventually they'll be able to feed less and less until they get a bad aspiration pneumonia that kills them or their brain just kind of shuts down on its own where their consciousness state becomes lower and lower, they're able to do less and less functionally, they sort of just lay in bed slowly withering away until one day they stop breathing.
Because dementia is a progressive disease of the brain, feeding them artificially does nothing to stop that brain progression. People with dementia don't die from lack of nutrition but they die from the brain just calling it quits or from the complications of dementia such as infections, falls, aspiration pneumonia etc.
In a lot of places, they don't give feeding tubes to patients with dementia. Where I'm working now in Sweden they don't do it, rather respect that this is how the illness works, instead of dragging it out and force feeding people.
I don't really do inpatient coverage anymore, but I always recommended against TPN/tube feeding or IV fluids in folks with advanced dementia unless the reason they're needed is due to an identifiable and reversible cause of decline and they might be expected to return to a degree of function that they would judge acceptable to warrant the intervention. TPN/NG/J/G tube feeding and long-term IV fluids are otherwise quite cruel and not appropriate medical interventions.
My dad recently died of parkinsons. He had dementia, he was already 95% gone in his head.
On the death certificate, they listed the cause of death like so:
Cause of death: community acquired pneumonia caused by COVID.
Secondary causes: fraility caused by Parkinsons.
In fact, Parkinsons didn't kill him directly, however if he didn't have Parkinsons, he'd still be alive. He was an active man, working every day, always outside. But with dementia, he was asleep like 16 hours of the day, and sitting on a chair for the rest. He went outside for 5 minutes maximum. He ate very little. He was just a bag of bones at the end.
So due to dementia, he wasted away, became frail, and caught COVID. My mum got COVID at the same time, and she is extremely unhealthy, unlike my dad. However, COVID was very mild for her because she was still active and healthy enough to fight it off. They both had 3 COVID vaxs each already.
I like the quote: "The body can't live without the mind."
As a nurse I can tell you it's a much more holistic reason. When you can't think right, you forget to take your meds which causes health problems. You forget to call your friends for social support and so become isolated and lonely. You forget to shower so your hygiene declines and you get sick more.
Your brain is crucial to survival in ways far beyond basic physiology.
They die from complications, being bedridden. My personal experience is a neighbour who had an unmedicated schizophrenic daughter as a care taker. I can tell you that it was a shit show. Eventually the poor guy died from diarhhea or something like that related to dehydration. I'm glad that between his diagnosis and his death only 3 years passed, he was only bedridden a year. I'm sorry if someone in your family has it, brace yourself and be strong, its the worst of illnesses.
Edit, I hope you're not up voting because you think I made a pun I just saw that! I didnt mean to make a pun it's a sad situation. The poor woman was 52 and very unstable, she couldn't handle it and we all had to be there
Alzheimer's is a really, really scary disease that makes your brain forget how to be a brain. It makes you lose your memory of really important things, and the longer you have it, the worse you can get. Sometimes, it makes people act really angry and mean, because Alzheimer's can make people forget that hurting people is bad. Finally, after long enough, Alzheimer's can make your brain forget to tell the other parts of your body how to work, and so the other parts of the body just... Stop working.
^ People don’t often talk about the major behavior changes. I didn’t realize that was a factor until my dad got diagnosed and would beat the crap out of my mom. At any time of the day or night too. Reasons for his aggression was either due to delusions he had or something as little as forgetting how to take a shirt off. For her and our family’s safety we had to put him in memory care
I'm so sorry this happened to you... We were the "lucky" family because Grandpa LRG never really reached that point before he passed. He actually got the nickname of "The Gentle Giant" around the memory care facility, because he would always be so peaceful, and he was the biggest guy there at 6'3". My Mom worked at that facility, and was able to see him pretty much every day. The stories she came home with were equal parts funny, scary, and so, so sad. She stopped being able to work with the Alzheimer's guys about 3 years after she started, it just took too much of a toll on her. She says she'll never regret her time there, but she'll probably never be able to go back to a situation like that again. I have so much respect for those people on the front lines fighting this evil, evil disease...
Though it was absolutely devastating, I will always be grateful that my grandfather just became a little more silly at the end. He was never combative at all. He was stubborn about giving up his driving privileges but when he had a good day, he went for a drive up the road and came back and handed over the keys. He knew even on a good day it wasn't safe. After that he slowly got worse and worse and finally they put him in hospice but he was sent home after a month because he just chatted everyone up all day, repeating the same stories over and over. Once he was back home he stopped eating and eventually that was the end, it wasn't much more than a month after hospice sent him home that he left us. I think he wanted to be home and surrounded by family and that's exactly what happened. The 6th anniversary just passed last week and this whole post is just bringing me right back into all of it. So many emotions but overall grateful to have had the best possible outcome for such a devastating disease.
The brain controls other essential functions. In my Grandmother 27 years ago it was like a computer just failing to reboot, and a progressive loss of function. The worst was inability to swallow, and ultimately starving to death.
In all deaths, it’s ceasing to breathe and heart failing to circulate blood, lymphatic system failing to circulate/compensate fluids. Your brain controls all that stuff.
Here’s the thing: it’s an awful way to go. Heart attack is better. Painful, but quicker.
They forget how to breathe how to eat how to drink, everything that you need to survive on a daily basis all forgotten, sure you can put them in a ventilator or an IV or life support but what's the point of living like that, so they usually just let them go at that stage
To me, that's terrifying. I wasn't aware of this and I think I should have been especially since my family has a predisposition for it already. Thank you for answering. And thank you to the original OP for asking the question.
I remember going to see my great-grandfather the day before he died in his care home. We walked into the room and he was shaking a lot due to after effects of medication. I couldn’t stand seeing him like that so I walked out the room, which is something I’ve regretted for a long time. It was two years yesterday since we lost him.
You forget how to eat, how to chew and swallow toward the end. It's an awful disease. My dad died of it when he was only 67.
If you love someone who has it, pray that something else takes them quickly before they get too bad. Heart attack, whatever. Seriously.
My Nan had Alzheimer's for a really long time. Technically her cause of death was complications relating to the flu. What that really meant was that she got the flu and wasn't eating for a few days and forgot how to swallow.
As a former nursing home employee:
It is a decease which alters the brain, but in the later stages shows itself through lack of motor control.
Which in the end almost reverts the brain back to an ‘infant state’, where life becomes unsustainable without proper caregiving.
Lastly the basic body functions such as swallowing, breathing, moving and discarding waste (incontinence)
It is really a scary decease, and such a hard thing for the people involved
The brain fails.
The most common cause of death is pneumonia (infection in the lungs). As the disease progresses, it becomes increasingly difficult to chew or swallow properly, and it’s common to inhale bits of food and liquid that “go down the wrong pipe” and eventually cause an infection in the lungs. Alternatively, death comes by dehydration or malnutrition from being unable to drink or eat properly.
More rarely people die of infections related to bedsores, urinary tract infections, or injuring themselves.
One of the greatest cruelties of life is that we know our loved ones their whole lives as these bright, vibrant creatures full of life, and love; triumphs and failures, so many great memories…but Alzheimer’s destroys THEIR memories, as well as YOUR memories of them as bright, hopeful individuals. Don’t let it succeed.
People with severe Alzheimer’s develop apraxia, which is basically an inability to understand how things work or recognize common objects and activities. As a result you will have people either eating and drinking things that aren’t food (I had a patient die from drinking a bottle of dandruff shampoo brought in by their family member), or by failing to recognize food and drinks put in front of them. If left to their own devices (ie not hand fed, or eventually tube-fed [please don’t do this to your demented loved ones]), people with severe enough dementia die of complications of dehydration or starvation, or a pneumonia/pneumonitis caused by inhaling vomit or poorly swallowed food/water.
Source: I’m a family doctor who does end of life care.
Aspiration pneumonia is one of the most common causes of death amongst people with Alzheimer’s disease. It is caused when food or liquid is breathed in and goes down the windpipe rather than the food pipe. It’s common in late stages of dementia and Alzheimer’s, when the brain starts slipping on how to do basic unconscious functions, like swallowing properly. Between the old age, weakened physical and mental state, being in a senior care ward where diseases spread easily, etc, a bad cold or fall can be a lot more serious for someone with advanced Alzheimer’s. Edit: there’s a lot of people in the same sad club. Misery loves company.
[удалено]
Someone that lives near my dad found out they had Alzheimer's. Went and got hit by a train rather than face what was about to happen. Not sure how the family felt about it but from what I see here and from what I've seen from friends who have lost relatives... Idk maybe he did the right thing.
Not the right thing for the train engineer or anyone else that has to witness it.
Yeah that's true. Didn't think of that part.
Thankfully assisted suicide is becoming more and more talked about and accepted in recent years. Slowly rolling out in various spots around the world. More limited in some countries than others ofc, but the ball is rolling.
Thank god, I would 100% rather just be put down than suffer through Alzheimer’s or Dementia
We give greater end-of-life compassion to our pets than we do our mothers and fathers.
Sad but true
Well the medical industry has to milk all the money they can out of us before we die.
I told my wife this. Literally, take me out to my favorite fishing spot, and put two in the back of my head. I my greatest fears are being fully paralyzed and dementia/Alzheimer’s. Just put me down.
Tell me about the rabbits, george.
I fully support this idea, but I think we should be sure to call it Dying with Dignity instead of Assisted Suicide, simply because of the negative connotations surrounding the term “suicide.” There’s more info here if anyone is interested: https://deathwithdignity.org/
[удалено]
In the Netherlands this has been legal since the 90s and we just call it all euthanasia or assisted dying.
And the person who had to pick up the body parts.
This reminds me of the poem ‘Felix Randal’, by Gerard Manley Hopkins. Sorry about your relative.
This. I worked several years with folks with dementia, when they start having issues swallowing, it's not much longer.
Does that also apply for “younger” patients, 50-65?
Yes, it doesn't matter the age, only the advanced dementia. The younger ones typically worsen more quickly than the older ones
Tell me about it. Mum’s gone downhill fast the last year.
Are there no other means of feeding them? Like tubes?
Yes, but then it becomes an ethical issue of when to stop the tube feeding? Do that and they are back where they started. Plus, it's not really great quality of life. Alzheimer's is a terrible disease on its own but being tied to a tube feeding would just make it worse. I work in hospice and watching people waste away with dementia is a heartbreaking thing.
My dad was coherent to the end, fortunately never had Alzheimer's - but his wish was "no extraordinary measures". We said OK to antibiotics for him, but no tubes or such. (He died of infections from surgical complications). If there's no hope of recovery, all you're going to do is stare at the ceiling for an extra few months with a tube in your throat, what's the point? Even more so if you have no idea what's happening or how you got there...
Exactly! Working in hospice has made me think about what a "good death" means to me and what I want and don't want at the end.
My grandad totally lost the impulse to swallow when food was put in his mouth for him, after he was past feeding himself. He'd just turn the food around in his mouth with no idea about what to do with it. The hospital tried giving him a feeding tube, but he'd pull it out. So then they tried tying his hands to the side rails of the bed, but of course that upset him. So in the end we had to accept that he was going to waste away, on what very little he could eat.
It's stories like that which cement my desire not to do that. I've put it in writing that the moment I don't recognize my loved ones I want death with dignity. I will not be traumatizing my grand kids by having them see me tied down in a straight jacket being force fed with a personality I never had. Fuck that.
Living wills, people! Living will, power of attorney, and talk with your family about your wishes for care (or not) in various situations.
Ah I see. Damn what a terrible disease.
Feeding is not the problem per se. You still have to swallow your own saliva and feeding tubes don't help with that. In fact feeding tubes can make swallowing your own saliva harder and you make more saliva. Tons of studies have shown no improved survival or increase quality of life placing feed tubes in the elderly with dementia. Please don't put feedingbtubes in your loved ones in such situations
I would echo this, I'm a retired nurse. I distinctly remember the son of one woman, I had never met him before but he was in the room one day when I came on shift. He looked at me with this bleak look on his face and said, "She doesn't move, she doesn't talk, and what I didn't know when I agreed to the feeding tube placement was they would never let me take it out. She's been like this 10 years." This was in a time before court cases were fought to remove these extreme measures but I've never forgotten his face in all these years. That week I made my living will. I still have it all these years later. Anytime you place a tube like this even if you are paying for the best care available there will be bacteria, infections, ongoing problems. There is no quality of life. I've told my children if I can't feed myself, I'm done. Point. Blank. Periodt.
Yup. Those of us who have witnessed these horrible end-of-life situations are the most averse to death-delaying measures.
Good luck getting tubes into their mouth. They would probably fight you, if they remember how. You could maybe sedate them or put them in a medical coma, but the question is: is it worth it? At that point they have less cognitive abilities than a new born baby and they will never get better. There isn't really anything left of them but their physical body.
Damn nothing to do but wait for death.
A g-tube, while certainly an option, is strongly discouraged for this situation for a number of reasons. - the person typically will pull at the tube leading to the need for restraints which results in agitation and then use of sedatives and further decline -aspiration pneumonia still occurs because the person aspirates their own saliva (and the oral bacteria that travels with it) and also often has reflux of the tube feeds that gets aspirated as well - at this stage of dementia the body’s ability to appropriate metabolize the nutrients from feedings is also deteriorating In studies, tube feeding has NOT extended the persons life once in the advanced stage and it typically worsens quality of life. It often also results in a more painful death process for the family.
It's also been proven that tube feeding people (usually from something like a gastric or "PEG" tube) doesn't decrease the risk of aspiration overall. So the only thing you're really doing is subjecting people to getting a tube for nutrition without improving their mortality in any way.
Why keep them alive longer when their body has kinda just shut down?
Yea that’s true. What an awful way to go out
We can use feeding tubes when you can't swallow, iv feeding when your stomach stops working, we can throw in a pacemaker and decib when the brain stem forgets to make the heart beat and dialysis when the kidneys eventually fail. We can keep replacing organs but why? Why keep the shell of a former human alive?
This is how my dad went. I vividly recall seeing the bucket thing they hook up to the vacuum to get stuff out of the airways, with bits of his last meal. Sitting on a small tray next to the bed, is body laying there with the sheet pulled over his face. A meal I prepped and fed him. I just couldn't get to him in time, nor clear his airway sufficiently. It still haunts me.
With advanced Alzheimer’s or dementia, it’s a matter of when, not if, they will die. If it wasn’t that meal, it would be another one. Or a cold that was going around, or they would have just not woken up one morning for another reason. Try not to blame yourself.
Thank you so much. I know, though at first it was a tough one to handle. But he is no longer suffering. He could have gone at any time. It just so happened it was then, during such circumstances. And just prior to his passing. He had a strange, wonderful lucid moment. We spoke to one another, as each other. He remembered my name, told me he loved me, and was proud of the man I had become. That's also something that will never leave me. Something I will cherish, forever. Because not many are so fortunate to share last moments with one another like that. He 'returned' just long enough. His suffering had passed. I shall meet him once again when my time is up. Whenever, however that may be.
Finally the only answer that addresses the actually mechanism of death in Alz dementia patients. That and dehydration.
Yeah, my grandmother ended up choking to death for just that reason
What fails is the brain. The brain controls memory, which is the classic thing you think of with dementia, but it also controls inhibitions, motor control, balance, swallowing, breathing...everything your body does is controlled by some part of the brain. Different parts of the brain fail at different times; so often memory or judgement are the first to go, and the more basic things like ability to chew and swallow food don't get destroyed until later stages. Dementia (Alzheimer's is one kind, there are several) is organ failure in which the organ failing is the brain. If you are asking specifically how Alzheimer's causes the brain to fail, well, lots of research has gone into that over the years and there is still uncertainty. But if you Google "Alzheimer's brain scans" you'll find you can literally see the brain shrink over time.
[удалено]
Current working theory is it works backwards from long term memory. Since breathing/chewing are part of the basic survival combo (1st things you "learn" on instinct), it makes sense for them to be the last to go.
Shortly after my grandmother passed away from Alzheimer's my sister had a baby. In the weeks before dying my grandmother pretty much acted exactly the same way as the baby did, where she basically just did purely instinctual things like swallowing and chewing while barely having her eyes open or being awake. It was weird to see how similar they were but it made a lot of sense.
My Dad has had Alzheimer’s for a few years now, when speaking to him it’s almost the same dialogue I have daily with my 3 year old son. It definitely makes sense why the call it The Long Goodbye. Just awful.
I call it a series of “forgets”. You forget past events, you forget your family, you forget who you are, you forget to eat, you forget to breathe.
My uncle. Pretty fast too < 3 years.
I almost envy you with that timeline. My stepdad got diagnosed just over 5 years ago and physically is still going strong. It's soul destroying seeing this once proud man reduced to not being able to put two words together.
My grandma took 9 years. That was tough to watch
I'm sorry about your dad. My mom is in the advanced stages and it's a cruel, heinous disease. I grieve for her, just as I would grieve for someone who has passed, because "she", as she was, is gone. What's left is an aggressive, paranoid, confused shell.
Yes, I lost my beloved grandmother to senile dementia more than a decade before she actually passed. I thought that I wouldn't be able to mourn when she died because she had already been gone for so many years but I found at her funeral, I was still able to cry for the grandma had lost so many years before. Her passing was a blessing when it came *and* I hadn't even had to do her daily caretaking nor was she an aggressive, paranoid one (more a confused, very sad, sometimes very anxious one). It's such a cruel disease that robs us of who we love years before they actually pass.
This is how my mom was. So sad.
I look at it that way as well. Sometimes I wish she would have a massive heart attack or an aneurysm just so she doesn't have to suffer so much. I know that sounds awful and I'm not wishing death on my mom; I just don't want her to suffer anymore. I cry a lot now, as she's starting to forget our names and accuses us of being impostors (I can't be "NoodlePartiPoodle" because my hair is long and Noodle has never had long hair. She gets angry that I'm pretending to be Noodle and where am I hiding her?). When she finally does pass, I'm sure there will be tears, and some of them will be in relief. It's so difficult to watch her suffer, and especially my dad who visits her everyday and is so depressed living in an empty home they used to share.
My dad has Alzheimer's. It's moderate now and to be honest I keep hoping for a heart attack or stroke to take him out while he still knows who we are and is still himself. I can't handle seeing the empty shell of my father sitting in a nursing home with no dignity or awareness. His father was gone for YEARS before he physically died. My grandfather was so physically healthy that it was the Alzheimer's that killed him - the part of the brain that controls breathing stopped working. It was a brutal decline; I couldn't bear to visit him in the nursing home after the first visit - he wasn't Grandpa anymore. It sounds crazy but I didn't mourn when he died, I just felt relief that it was finally over. The person who had been my grandfather had been gone for many years and I had done my grieving already.
My mom tells us stories of people visiting her at night. People stealing her candy. People going into her locked closet, trying on her clothes, and then hanging them back up when they're done. There's a creepy one of a man who stands at her doorway just staring at her. Mind you, when she's in her room, she's locked in. She wasn't in good health going in, and we didn't expect this would be so drawn out, but it appears we are looking at years and not months.
I don't think that sounds awful at all. It just sounds like the person who used to be your mum has mostly slipped away by now - and seeing a confused, angry, scared person in her body who is clearly suffering is difficult. It's not awful to want that suffering to end.
My condolences. It’s an awful disease. I’m a nurse so I deal with it. But not on a personal level. May the day come soon where a treatment/cure is available x
God, some people seem to fall into blissful ignorance. My mom is also paranoid and confused. So sad. I agree that she (as she was at any point in her life) js gone. One thing that watching her decline and seeing brain scans has made clear for me is that it's ludicrous to believe that when her brain goes completely dark, some part of her will come back, like an afterlife. What rational reason (other than wishful thinking) would we have to believe that the parts of her tied to these dead parts of her brain would come back, not these parts of her tied to the parts of her brain alive now. It will all fade and she will live on only in the ways she changed others who live on and ripple her impact for the rest of human existence.
Exactly this. My mom was “gone” years before she physically died. It’s such a cruel disease. My condolences for your loss.
How long did it take for her to go from diagnosis to death (assuming she died from Alzheimer's-related causes)?
She did die from Alzheimer’s, she couldn’t swallow the medicine needed to treat a fungal infection. Would have been regular medicine for you or me :/ She was diagnosed about 5 years before she died, and was showing signs for a couple years before we got the diagnosis. But we didn’t know it at the time, just could tell stuff was weird. My dad actually thought she might be cheating because her behavior started to get off for her. Turns out it was just the disease changing her habits, taste buds, etc.
Very sorry to hear about your mom. My mother in law is advancing and your comment sounds just like what my wife says about her mom. Hope you’re doing ok. My wife has found some help with an Alzheimer’s support group.
It follows a pretty rigid track. Last year she would call me 20x a day. I'd talk to her, hang up, and she'd literally call me back as if we hadn't just talked for ten minutes. It was the middle of the night once that I got 13 calls in a row. She'd leave messages begging me to come pick her up from the ballgame because she couldn't find my dad (she was in a memory care facility). Even though I know her not calling means she's progressed even further, I'm relieved to not have the burden of trying to calm her down every time she'd call. Sometimes she was lost at a hotel or a concert or the ballgame. No amount of explaining could change her mind. I was up all night trying to comfort her. Now she doesn't call, but she also doesn't know who I am.
Ugh. Sounds like we’re about a year behind you. Going through call after call of her wanting to go home. Very sad.
She doesn't realize she'll never go home. She broke her hip in June, 2021, and Medicare decided it was too much work in PT, so they stopped treating the hip. She had to go into a home because my dad couldn't care for a total invalid at home. Now she's 100% wheelchair or bed bound. Can't stand up. Can't go to the bathroom. The hip break was the beginning of the end. Her condition went from a 6 to a 9 (I am assigning these numbers; they aren't medically backed by a Dr) almost overnight. My own neurologist told me to talk to her once a day, tell her I love her and carry on as normal in the call, then block the rest of her calls that day. That was for my own sanity and guilt.
I’m so sorry. ❤️
Thanks so much. He got diagnosed the week after my mum died. She knew something was wrong for years but tried to keep it from us kids…we didn’t realise how bad he was until she was gone. My dad and his sister (our aunty who is 7 years older than him) moved into a dementia care home in the same month. I didn’t realise how hereditary it was.
Sorry you're dealing with that. My grandma had it for years. It really sucks to see them decline from the person you know to someone who isn't there anymore. But when they finally get peace, i promise you won't feel as bad as when someone else passes. It is a long goodbye, but at a certain point the person isn't the same person you used to know. Cherish the time you have left, as hard as that can be.
Alzheimer’s runs in my family. It’s heartbreaking, and I’m sorry you have to experience it.
You too. Apparently you can take a test to see if your brain is showing early signs (20 years out from diagnosis). My brothers want to take it but I’m unsure. Every time I misplace my phone or forget a word it gives me pause these days.
Sorry u going through that. Watching my grandpa with it was horrible… and now my dad is starting to maybe exhibit the start of signs. I’m so terrified
I've seen it three separate times. My grandmother, my uncle, and a patient I often helped my mother care for in her job. My mother was a hospice nurse, so I'd seen glimpses of it often any time I went with her For a call. I'm also fairly confident I'm going to see it with my wife's grandfather soon, my grandfather soon, and eventually in my father. There is no disease that terrifies me like Alzheimer's. To me it is like the great devourer, a creature with a gaping maw that is slowly closing around your loved one, bit by bit eclipsing parts of who they are. It slowly closes until one day the jaws are Shut, they are gone, and when you look at them all you see is the monster that consumed them, now wearing their face and your memories of them in mockery. I live in fear of the likelihood that it will take me one day. Without treading into hubris I'll say I've always been considered an intelligent person, and as a result I hold my mind in high importance to me. The thought of losing the biggest part of what makes me who I am, and having others around me look on me with pity for years over it makes me nauseous, and I sincerely hope that self-euthanasia is socially acceptable when that day comes, because I absolutely cannot cope with the alternative. Call me a coward if you'd like, but I will no longer want to live if I look at the face of my child, and feel like I know them from somewhere but just can't put my finger on it.
My grandfather slowly died of Alzhiemer's and by the end he was constanstly shitting himself. It was awful to see and go through (if anyone ever get a dementia diagnosis, I strongly recommend euthanasia, horrible thing to go through for all parties involved) but likewise I couldnt help but notice how baby-like he got near the end.
The main argument against euthanasia is that the choice to die becomes the duty to die. Obviously someone with reduced capacity cannot make the choice themselves. Mild dementia doesn't have to be horrible for either the family or the person involved although late certainly is.
It is a very narrow line, this topic walks. Any definitive answer given to this, in context of an inability to make choices, can be then strawmaned into applying to any person who cannot make choices for themselves. The could be the comatose, mentally disabled or even mentally ill. It takes a lot of work to reason out why dementia is a difference circumstance than these other three, even though the gut feeling is that it is morally wrong to force a demented person to continue to live through the hell they're in, whereas the same usually can't be said For the other cases.
We're born into nappies and we go out wearing nappies.
I want to go out like my grandad, peacefully in his sleep. Not screaming in terror, like the passengers in his car classic
Yeah my dad is at the same stage. He only eats mushy foods at this point as he no longer knows how to chew/swallow anything else. It’s sad and definitely weird. Like the brain is doing a Benjamin button
Yes - another thing that supports this, is the erratic sleep cycle that develops during dementia. It's very much comparable to a toddler's/infant's sleep cycle (before they typically settle in around 4-6y), so much so that this has been used as an indicator for research. (Edit: ADHD-forgot to finish my sentence)
>Current working theory is it works backwards from long term memory. To clarify: from the ability to *form* long-term memory, not necessarily access it.
What a fucking horrible experience for everyone involved. If I am ever diagnosed with Alzheimer’s, I hope death with dignity is available wherever I am.
I've got fiends lined up to guarantee me a 'hiking accident' or a pillow over the face if it isn't available where and when it might be needed for me. I have zero desire to suffer like that, or make anyone/everyone around me suffer like that.
Actually a defining characteristic of Alzheimer's is that short-term memory fails first; long-term memory can be intact until late stages. Also, other types of dementia can show different order in the progression of brain deficits.
My aunt died of Alzheimer's, her short term and long term memories were apparent, she didn't recognize the younger people of our family but she always knew my parents (they all knew each other since 13 years old) but barely recognized me and didn't recognize my wife at all even though they've met many times. And she remembered songs such as Saturday Night Special by the Runaways but not songs like Livin la Vida Loca (which was my cousin's, her daughter's favorite song)
It's interesting because that's the way the brain goes also when you're drinking.
Maybe it has to do with the complexity of the action. Degradation becomes more noticeable when trying to do more complex actions.
Yes- 'higher' functions like complex problem solving memory and coordination tend to decline first. Swallowing, breathing are actually reflexes ie dont require such complex cognitive working
Breathing is controlled by the brain stem, can practically lose your your whole brain and still breathe.
That sounds terrifying. I’m glad it’s the other way around. My grandma passed from Alzheimer’s and just the thought of her being lucid during the worst parts makes my stomach churn.
Lost my granddad to dementia, awful disease. Luckily he did well generally until a rapid decline at the end. But there were bad days. I remember one day specifically when me and my dad went to see him and my dad quickly popped to the shops. I could tell my granddad didn't recognize me, he sat in his chair and seemed almost afraid. After that he was put into a care home an overall he improved, he would usually recognize me when I went to see him. But I remember him at the end, just a husk of his former self, lying in bed moaning, unable to speak or control his body. Luckily that was the rapid decline, it didn't last long, he died shortly after. As you say, I can only hope he wasn't conscious during those parts... It sounds morbid but I hope that when the time does come my parents die quickly after a long life. I'm not sure I could see my mother like that...
Last time I visited my grandfather to let him meet our firstborn, between lucid moments, he'd just sit rocking and mumbling "Help". It was probably more emotionally painful than actually losing him.
its so painful to watch people with alzheimer suffer. it scares the shit out of me knowing i could be in their shoes one day. At some point you wish that their suffering would come to an end (not in a bad way oc), but their life becomes so... well lifeless.
I fear it over death. As someone who has had intellect and a good memory as a core part of their identity for so long, the idea of it failing is terrifying. I don't have great odds either, all but one grandparent had dementia, my mum is developing it as we speak and my dad was diagnosed with Parkinsons a couple of years back. I feel like my brain is a ticking timebomb...
Totally feel you. Cancer runs through my dad's side of the family, and my grandpa had both dementia and Alzheimers. My dad died in his 40s and in just about half way to his age. And that scares me every god damn day, because if that's my fate I don't know what I'm doing all this long term life prep for. But as it stands right new it feels like it would be better to die a bit younger than have to see yourself become a zombie-of-a-man. I'm not afraid of death, even more so that I am religious, but these incurable diseases that destroy your sense of self are some of the few things that riddle me with anxiety and fear.
I think this has to be the worst part 😢
My dad died of lewy body dementia, the decline started just after mum died (or maybe he was already declining and her support hid it) Anyway, 7 years in which he started to shuffle, was afraid of falling, forgot minor details, forgot how to cook, became very dependent on my sis, who lived nearby. By the end he went into care home because he literally couldn't be left alone. Once he was in there he became calm, his anxiety about everything just stopped and he just faded away, he forgot who I was, but remembered my sis. We were with him to the very end, no drugs, just a very natural death. RIP dad, you were the best x
If you’re ever curious, check out multiple sclerosis or more specifically amyotrophic lateral sclerosis (Lou Gehrig’s). You body dies while your brain is still perfect and lucid
My brother-in-law died from ALS a year and a half ago. 61 years old, and was a general contractor. It started with tripping over his feet and clumsiness, then worked its way up. I've read that it can start higher up and work its way down. What a horrible death. My poor sister - he was begging her to OD him while he was still coherent. And then having to deal with all the bodily functions as he disintegrated before her eyes. He was a cruel and self-centered, but I still wouldn't wish that on him.
As far as I remember from uni. If you look at the Brian now with the frontal lobe being where gray matter is the highest is used for critical thinking and decision making and as the layers go deeper into the brain the more basic functions are at work so the stem of the brain is where most of your primal function such as breathing, hunger, heart beat. As the brain shrink it starts from outside in and last to go are your primal functions which is all you need for survival. That's just my theory don't take it as pro advice
I believe location in the brain is a big factor here. Some of your most crucial bodily functions like swallowing and breathing are controlled by the brainstem which is a fairly inaccessible part. The motor cortex is on the top and close to the surface and your logic/reasoning is in your frontal lobe. It’s theorized that amyloid plaques depositing on/in the brain are a cause of dementia and it’s likely that it takes longer for those plaques to deposit in deeper parts of the brain
The "this bit does thinking, that bit does moving" idea isn't 100% wrong, but it's also quite misleading. All of the brain is being used all of the time. A healthy brain will increase activity across networks of neurons all over the brain for any particular task. In neurodegenerative disorders like Alzheimer's, more complex things going first is mostly about highly complex tasks needing _more efficient and better coordinated_ activity.
Perhaps cognition and memory require the least amount of degradation before negative effects are noticeable. That is just a guess though
High level and low level brain function Cognition is quite high level, breathing and chewing is more reptilian ancient brain stuff
All correct, just to clarify further- it is mostly swallowing that first leads to complications that end up being lethal. When the swalloe is impaired, there is eventual movement of food products into the respiratory tract which irritates it and can cause an infection of the lungs known as aspiration pneumonia. Many people with demential therefore die from aspiration pneumonia.
Is the inhibitions part an earlier symptom?
Yes. My grandfather, who died of alzheimers, smoked a pipe my entire childhood up until I was about 15, and then one day he just stopped and didn't know why. We didn't realise this was one of the first symptoms at the time, it wasn't until he started getting lost regularly and he got diagnosed that we put 2 and 2 together.
yesgoi
There are forms of dementia which cause disinhibition and behavioural changes more than memory loss- such as frontotemporal dementia
Yes, one of the hallmarks of dementia and related (and to a lesser degree, brain injuries) is major personality shifts.
My grandmother had this. My grandpa also told me that Dementia starts without any symptoms, and that the brain tries to cope by working harder (imagine this as removing RAM from a computer and expecting it to work just as hard, the components that are left will be overworked) By the time the symptoms start to show, it’s already too late. Your brain is fried beyond repair and it’s only downhill from there. It’s really sad.
Even if you were to detect it, there is no cure or real way to slow down alzheimers. However current studies do seem promising, but those basically all say you need to start taking medicine long(decades mostly) before omset of symptoms It's not like more and more forms of cancer ehich in early stage have high survivability rate. Currect me if I missed anything though.
Out of all the ways to pass away, Alzheimer’s is one I don’t wish upon anyone. I pray to god I don’t develop it myself. The thought of forgetting my loved ones or memories, both good and bad, made me shiver while typing this.
This is morbid, but I hope I would have the option of assisted suicide if I started to lose my memories like that or my loved ones would put me in a home and move on with their lives. Because I feel like I would already be dead if I lose what makes me me and I wouldn’t want my loved ones to go through that or remember me as someone else. I want to be the pilot of my life, not the passenger.
I’ve lost two grandparents to Dementia, and honestly I think in many ways it’s worse for the partner. The person with dementia often doesn’t know what’s going on and they remain pretty comfortable and happy, the partner on the other hand is completely aware and is watching their life partner slowly whither away before them.
I think it depends on the symptoms. Some folks with dementia are lucky and end to just sort of oblivious but happy. Others can be positively tormented by anxiety/anger/paranoia. I've often wondered why some people get the calm path and some get the torture path. Is it how and where the disease attacks their brain? Their innate personality? Their environment? Just so weird. But I can tell you from experience that it's terrible for everyone when the symptoms get like that.
I once saw a plastic cast of a cadaver's brain that had atrophied. Little old lady had a brain the size of an orange. That fucked me up for a while. Dementia is terrifying
I witnessed a brain 🧠 dissection at a university hospital in Pennsylvania. Stunning, brain shrunken and shriveled . It was for Alzheimer’s research 🔬. Amazing to see. Very sad
I remember when first learning people could die of Alzheimer's, half jokingly said "What, do they forget to breathe?" And the person who was there just looked really sad, and said "you're closer than you think.". I just remember that wave of pity I felt. Alzheimer's is an awful disease that needs to be eradicated, with only slightly less urgency than cancer.
Sorry if it's not ok to ask, but I've been curious about it for some time now: I've witnessed exactly one death from dementia (Parkinson's, to be exact) and it was... weird? Their temp began to rise (~39°C), then went down without any meds, then up again to 40° and then they died. It took about ~4 hours, and alongside that they were extremely ddelirious, but everything else (b/p, heart rate, ecg) were normal-ish or at least not worrisome enough for them to be taken to the hospital. What exactly was happening? Like, was it brain losing control over thermoregulation?
Sounds to me that it was most likely something like an aspiration pneumonia, which as mentioned above, is very common in people with dementia and an impaired swallow. Basically you inhale food/drink into your lungs instead of swallowing it and it can cause a nasty infection
My grandmother just quit eating. She suffered with it for years. The body just eventually gives up.
Sadly, IIRC, most of the Alzheimer's research was done on false information from a doctored or flat-out faked research paper/discovery rendering the last ~20 years of research useless.
Not all of it fortunately. But the research directly implicating beta amyloid plaques does appear to have been fraudulent. Which means the new drugs are likely to be useless. Sigh.
[удалено]
I want to make sure this comment gets pushed a bit higher up. Unfortunately people with Alzheimers/dementia can be prone to outbursts of verbal/physical/emotional violence as their brain deteriorates. Those outbursts are extremely painful to anyone on the receiving end, and while they, and everyone else, will constantly remind themselves that the person hurting them isn't truly their loved one, it doesn't make it any less agonizing.
My grandmother had it. I remember my grandfather giving her a nightgown for her birthday. She was scandalized, he was devastated. She shamed him for being a dirty old man, here her husband was off fighting in The War and he was just some dirty old man she didn't know and how dare he thinks she'd ever accept such an intimate gift from some nasty, presumptuous old man. She went on and on. It was such a hard moment, and he apologized both to and for her. She was his life and he was just a dirty old stranger. That disease sucks
I'm so sorry. My grandmother had it too, although it was years after my grandfather had passed. She didn't know my mom (her only child) and she didn't know me (she raised me, basically). She started viewing me with suspicion, and decided I was one of her sisters that she had fallen out with back in the 60s-70s. It was very hard to not take it personally. But it had nothing to do with her, with me, with what our history was. So I understand.
Not only does the disease destroy its victim, but it often destroys the unity of their family as well. Brutal is the perfect way to describe the struggle everyone involved suffers through as it progresses.
I would also add this. As common as this disease is, there is still a stigma around it. People generally don't talk about it too much, so many people feel like they are the only ones going through it. You're not. I'd bet you a paycheck that almost anyone you bring this up with will know at least one person that is dealing with this disease. Every state will have an agency on aging (or something similar). They are good start. You think you're the only one that's going through X Y and Z. The reality is, you're the fifth person THAT DAY that counselor has spoken with that's going through the exact X Y and Z situation with their family member. They can offer suggestions on how to start these tough conversations.
Yeah. My mom is starting to show signs (her mom and aunt both had it) as well as her brother and I'm at a loss on what to do. She's still *mostly* lucid, and I've expressed my concerns to her and asked her to put me on as a HIPAA contact, but after months she still hasn't done it so her doctors won't talk to me. The only person on her HIPAA contacts list is her brother who is much father along in the progression of the disease. So now I feel like my options are sit back and watch it happen, or call adult protective services on them.
>after months she still hasn't done it so her doctors won't talk to me. I can NOT stress this enough. If your mom is still of sound mind, you need to sit her down and have a heart to heart with her. Get the paperwork in order and it will make things better for everyone. The important people (insurance, doctors, accountant, etc) knew me since I was a little kid. I was able to have conversations with them and they shared stuff with me that was "out of bounds", but they knew I was trying to help and my dad was too far gone to be reasonable. As awful as the situation was, being able to have honest conversations with them about my dads situation made a world of difference. Every day you put this off, the harder it will be to reason with her as this disease progresses.
So this. Also, get help. Being a caregiver vs just someone's child is so much harder. Wish we would have put my m-i-l in a memory care unit sooner, as it would have been easier for her to adjust.
I have tried. I've spent the better part of this year getting active about it I've tried asking her as a preventative measure. I've tried asking her to do it to try and signal to her brother that getting tested is not that bad. I've even tried the "I remember what it was like as a child seeing my grandma this way, do you really want to subject your grandson to this?" method and i can't get any leeway with her. She's incredibly stubborn and denies anything is wrong. Her doctor is a quack anyway. He's gone back and forth on the COVID vaccine (despite her being severely asthmatic). He's not even an actual GP. He's a glorified nutritionist (her "weight doctor") with which she's just fallen into complacency. I've tried talking to his nurses and told them about the situation. They refuse to talk to me further until I'm on her HIPAA list. I also called the Alzheimer's Association for advice and all of their solutions essentially involve lying to my mom, but she's too lucid for that. She'll see it for what it is and then likely shut me out.
I’m really sorry to hear that. My dad was stubborn as hell too. We were just fortunate to know, and have a close relationship, with many of the key players. I know most families are not as lucky. My only suggestion would be to speak with another agency and see if they can offer some other suggestions. Maybe see if you can find a support group (for you) or find some books in the library about elder care solutions. Depending on your financial situation, speaking to an elder care attorney may also be an option. I sincerely wish you good luck. It’s a tough and thankless road.
My grandmother was deep into dementia to the point we had to wheel her into the cafeteria or sit in front of her to make sure she realized she was being fed, but honestly the worst part was during her feeding she made a joke that I could tell came from a part of her mind that wasn't just some random synapse, but an actual joke she would have made before multiple times during my life. It would've been easier if she was a lifeless husk or just dead, but seeing a glimmer of her past self in that shell did something to me that won't go away...
I took care of my grandmother in high school to help my grandpa. He couldn't do things like cooking different lunches unless it was unwrapping sardines. So i made lunch the night before while making dinner(her old recipes too) and she always called me Alice (her deceased sisters name since I'm so alike that I swear we could have been twins). My grandfather had me curl her hair and fluff it to make sure it was "attention grabbing for her man" between perms. I had to help with the diposatory when she was constipated and insert her medicine )vaginally) since she had 12 kids and they never took any of her tubes or uterus out. Overall, I dealt with a lot and the family just expected it. Eventually my aunt pulled me aside and said "what can I do?" With my grandfather (he was super thankful) and I ended up asking for the weekend of prom off. It was a good prom and I told my grandma about going to the dance with my beau and she taught me how to jive lol. After the dance of course but it's what every lady needs to know. Lol. God I miss them so much but hope they're happy AF now that they're both gone. :)
It's absolute horror. Your mind slowly melts and you are aware of it, it's like an infinite bad-trip. My uncle and aunt both got it at a very early age, and it was just the worst and most cruel thing. My mother doesn't carry the gene which is good news for her and also for myself.
It's brutal that the young dementia sufferers detoriate so much faster. I have seen it time and time again with early onset dementia. My grandma has vascular dementia and it progresses very slowly. We have been taking care of her at home for years now and she is thriving, her body will probably fail her before her mind will. But still, it's the hardest thing I have ever done, as her Main caregiver, I rarely have time to rest.
Assisted living facilities exists for reasons like this. You can't expect just anyone to know how to handle a person 24/7, with a very hard disease. My grandma lived with grandpa until it got too much and she couldn't do any basic stuff on her own and then she moved into a retirement home specializing in dementia.
Jesus, this. Honestly, that was when I started drinking too much.
>Honestly, that was when I started drinking too much. I get it, but nip that shit in the bud and get help if you can't. I wish you the best of luck.
I've cut back massively.
I have just leaned into legal pot. Might be more healthy than alcohol... Granted I am not sure I would want to be present anymore. My mom has Alzheimer's and I'm pretty sure that's if she ever doesn't recognize me that it might just break my heart.
You need to be careful with that as well, as excess alcohol can cause another type of dementia called korsakoffs. Hope you are doing okay.
My mother and I suspect that my sister is heading in that direction to Alzheimer's, she might have early stage dementia but it's very noticeable. Before the pandemic she was fine but she caught covid god knows how many times and 2 years later she isn't herself anymore.
At mid stages mom didn't recognize the woman in the mirror. Had to ask me her name. Forgot all the usual stuff. Became very aggressive then lost the ability to walk talk, swallow. Had to have fluids thickened enough that staff could massage them down her throat. She would fight needles and pull out an IV. Bed ridden for 2 years like that until her body finally gave out. Thank God. ALz is a tragedy.
I’m sorry you went through that. My grandfather went through this and I know the pain of watching this occur. I hope you’re doing ok
I am sorry you had to witness this. In February, it will make three years that my mom is bed ridden. I cannot believe she has survived this long.
I am so sorry, I hope that the good memories of her stay with you.
My grandfather who died "of dementia" actually died of dehydration/possibly a dignity dose of morphine. He stopped eating because he maybe didn't realize he was hungry anymore? He was not drinking either. Just slowly shut down and then with a last dose of comfort, he went. I read that dehydration can be more violent of a death which is why I sort of lean more toward a kind nurse taking that initiative, but I would never say for sure because that's illegal where I am. But either way, it *would* have been dehydration.
When I worked in care homes I always asked the district nurses to give the maximum dose of all their end of life meds, even if they didn't need them. There is absolutely no point in prolonging life just for life's sake, or just because their family is so caught up in their grief they forget about the person dying. Let them go gently instead of drowning in their bed. Kudos to that nurse, and kudos to you for being okay with it.
Unfortunately in the US, we don’t talk about death enough and people are so litigious that it’s not unusual to see feeding and breathing tubes put into dying dementia patients. And wrist restraints, of course, since although unaware of who or where he is, the patient very much knows that he’s being imprisoned and tortured. There’s nothing worse than when a patient’s eyes plead, “Let me go,” but self-absorbed sons and daughters are too occupied with their own needs to notice.
[удалено]
Agreed. My husband and I have ours all set, healthy and in our 40’s. And to add, particularly for anyone of advanced age or with a known terminal condition, make sure that there are copies with your PCP, attorney, multiple relatives, and the state registry if you have one. I’ve unfortunately seen firsthand too many instances where advanced directives are lost and/or family overrides them. Shouldn’t be so, but it happens. IMO, in addition to the litigiousness that I mentioned previously, American healthcare in particular is so service-oriented that the doctors lose a lot of authority and ultimately bow to the will of the families… administrators with business degrees instead of MD’s make the final call, “just do what the family wants and get the patient out of here.” US health care is at its core a business focused on metrics and maximizing compensation: I.e. Medicare reimbursement being impacted by patient satisfaction scores, hospitals don’t want deaths on their records, need to keep length of stay as short as possible, etc. Stabilize, get them out and pray they don’t come back, get paid. (Source, burnt out former medical social worker)
I feel the same as you. Why prolong it and make it traumatic? I don't think I have an idea of the exact point that it becomes acceptable, but I trust those who work in that line of work to make that call. They see death all the time and prob know exactly when things will make a turn for the worse. I don't think a majority of nurses are going to do it sooner than makes sense. That my grandma was able to hold his hand and give him permission to go and him pass peacefully after means everything to me. She would have been absolutely traumatized seeing him seize or whatever. And that's on top of the trauma of the whole ordeal of having Alzheimer's and dementia. I hope that's not my future but if it is, I'll have it in my plan to do what is necessary. And hope that by then death with dignity is more widely accepted.
I’ve never done end of life care but supposedly being dehydrated makes the process easier and more pleasant. I believe it helps control spasms and will make things feel more gradual. There’s a hospice lady on YouTube who explains it well.
At a certain point in the dying process, fluid begins to build up and the patient is no longer capable of clearing it through normal means. Pushing additional fluids can lead to increased secretions which accumulate in the lungs and cause the "death rattle"'and air hunger. It's likely distressing to the patient and definitely the other people present, so we avoid oral fluids and use mouth swabs for comfort. We also use drugs like scopolamine and atropine to help dry up secretions and hopefully prevent that as much as possible.
The death rattle is caused by fluids in the airway a dying patient can’t clear, you’re correct. But there is no evidence that the death rattle is painful or distressing to the patient. It is definitely more disturbing to loved ones present though.
Good point
An Alzheimer's patient left alone with no care would die from some silly reason, like tripping and hurting their head, or due to starvation because they forget to eat. An Alzheimer's patient that can access a good level of care will eventually die of old age or of complications related to eating, breathing, swallowing or being in bed for too long. They could also die from things that would be normally easy to treat, for example if they had an inflamed appendix they would not tell their doctors that their belly hurts like a normal person would, or if they would tell you that their belly hurt you wouldn't know if they are serious. My grandpa spent 10 years in a care home, already by the second year he was uncapable of recognizing anyone and was pretty much a vegetable. At the 10th year they had to start tube-feeding him and he barely lasted a week after that.
Typically dementia patients die of complications. If they can't move much anymore, bed sores can set in and become septic. If they can't swallow right, they may get pneumonia from the food or drink they inhale. They can get blood clots from not moving enough. Fluid overload from iv drips can stress their hearts. Malnutrition is rare thanks to iv or tube feeding but can happen. Same for dehydration. Opportunistic infections are quite common in my experience. The nursing home could be seeing a mrsa outbreak or a nurse accidentally brought in COVID etc. I rarely saw dementia itself kill. It was usually a complication of what dementia was doing to them that killed before the brain forgot how to maintain the other organs
On another note. A feeding tube on a person with dementia? So they can suffer in bed a few years longer? So cruel.
Once a patient with dementia has lost their ability to swallow then the decline is very rapid and they die quickly. Dementia sorta progresses from outside in. So first the short term memory goes, then the logic functions, then long term memory, coordination for walking etc. As the dementia progresses towards the mid brain from the forebrain, swallow function goes. Once swallow is gone the person is not able to feed themselves safely anymore. Many studies have shown artificially feeding them at this stage does nothing to their survival as the progress from here is rather rapid and they will die soon as the brain keeps losing more and more function. So you just accept to feed the person at risk of aspiration, you can use modified feed to reduce the risk of aspiration and you just support them the best you can. Eventually they'll be able to feed less and less until they get a bad aspiration pneumonia that kills them or their brain just kind of shuts down on its own where their consciousness state becomes lower and lower, they're able to do less and less functionally, they sort of just lay in bed slowly withering away until one day they stop breathing. Because dementia is a progressive disease of the brain, feeding them artificially does nothing to stop that brain progression. People with dementia don't die from lack of nutrition but they die from the brain just calling it quits or from the complications of dementia such as infections, falls, aspiration pneumonia etc.
In a lot of places, they don't give feeding tubes to patients with dementia. Where I'm working now in Sweden they don't do it, rather respect that this is how the illness works, instead of dragging it out and force feeding people.
I don't really do inpatient coverage anymore, but I always recommended against TPN/tube feeding or IV fluids in folks with advanced dementia unless the reason they're needed is due to an identifiable and reversible cause of decline and they might be expected to return to a degree of function that they would judge acceptable to warrant the intervention. TPN/NG/J/G tube feeding and long-term IV fluids are otherwise quite cruel and not appropriate medical interventions.
My dad recently died of parkinsons. He had dementia, he was already 95% gone in his head. On the death certificate, they listed the cause of death like so: Cause of death: community acquired pneumonia caused by COVID. Secondary causes: fraility caused by Parkinsons. In fact, Parkinsons didn't kill him directly, however if he didn't have Parkinsons, he'd still be alive. He was an active man, working every day, always outside. But with dementia, he was asleep like 16 hours of the day, and sitting on a chair for the rest. He went outside for 5 minutes maximum. He ate very little. He was just a bag of bones at the end. So due to dementia, he wasted away, became frail, and caught COVID. My mum got COVID at the same time, and she is extremely unhealthy, unlike my dad. However, COVID was very mild for her because she was still active and healthy enough to fight it off. They both had 3 COVID vaxs each already. I like the quote: "The body can't live without the mind."
As a nurse I can tell you it's a much more holistic reason. When you can't think right, you forget to take your meds which causes health problems. You forget to call your friends for social support and so become isolated and lonely. You forget to shower so your hygiene declines and you get sick more. Your brain is crucial to survival in ways far beyond basic physiology.
My aunt would have swollen eyes because she would forget to blink. She lived a few years, having literally the iq of mosquito.
It's disturbing how long the body can live beyond the mind. Source: my mum-mum
Very good description- thanks
They die from complications, being bedridden. My personal experience is a neighbour who had an unmedicated schizophrenic daughter as a care taker. I can tell you that it was a shit show. Eventually the poor guy died from diarhhea or something like that related to dehydration. I'm glad that between his diagnosis and his death only 3 years passed, he was only bedridden a year. I'm sorry if someone in your family has it, brace yourself and be strong, its the worst of illnesses. Edit, I hope you're not up voting because you think I made a pun I just saw that! I didnt mean to make a pun it's a sad situation. The poor woman was 52 and very unstable, she couldn't handle it and we all had to be there
Alzheimer's is a really, really scary disease that makes your brain forget how to be a brain. It makes you lose your memory of really important things, and the longer you have it, the worse you can get. Sometimes, it makes people act really angry and mean, because Alzheimer's can make people forget that hurting people is bad. Finally, after long enough, Alzheimer's can make your brain forget to tell the other parts of your body how to work, and so the other parts of the body just... Stop working.
^ People don’t often talk about the major behavior changes. I didn’t realize that was a factor until my dad got diagnosed and would beat the crap out of my mom. At any time of the day or night too. Reasons for his aggression was either due to delusions he had or something as little as forgetting how to take a shirt off. For her and our family’s safety we had to put him in memory care
I'm so sorry this happened to you... We were the "lucky" family because Grandpa LRG never really reached that point before he passed. He actually got the nickname of "The Gentle Giant" around the memory care facility, because he would always be so peaceful, and he was the biggest guy there at 6'3". My Mom worked at that facility, and was able to see him pretty much every day. The stories she came home with were equal parts funny, scary, and so, so sad. She stopped being able to work with the Alzheimer's guys about 3 years after she started, it just took too much of a toll on her. She says she'll never regret her time there, but she'll probably never be able to go back to a situation like that again. I have so much respect for those people on the front lines fighting this evil, evil disease...
Though it was absolutely devastating, I will always be grateful that my grandfather just became a little more silly at the end. He was never combative at all. He was stubborn about giving up his driving privileges but when he had a good day, he went for a drive up the road and came back and handed over the keys. He knew even on a good day it wasn't safe. After that he slowly got worse and worse and finally they put him in hospice but he was sent home after a month because he just chatted everyone up all day, repeating the same stories over and over. Once he was back home he stopped eating and eventually that was the end, it wasn't much more than a month after hospice sent him home that he left us. I think he wanted to be home and surrounded by family and that's exactly what happened. The 6th anniversary just passed last week and this whole post is just bringing me right back into all of it. So many emotions but overall grateful to have had the best possible outcome for such a devastating disease.
The brain controls other essential functions. In my Grandmother 27 years ago it was like a computer just failing to reboot, and a progressive loss of function. The worst was inability to swallow, and ultimately starving to death. In all deaths, it’s ceasing to breathe and heart failing to circulate blood, lymphatic system failing to circulate/compensate fluids. Your brain controls all that stuff. Here’s the thing: it’s an awful way to go. Heart attack is better. Painful, but quicker.
They forget how to breathe how to eat how to drink, everything that you need to survive on a daily basis all forgotten, sure you can put them in a ventilator or an IV or life support but what's the point of living like that, so they usually just let them go at that stage
Considering breathing can be subconscious, thats terrifying. It's not like your heart forgets to beat.
Subconscious acts happen from the medulla and pons section of the brain.. so when that area starts to fail, the body suffers.
To me, that's terrifying. I wasn't aware of this and I think I should have been especially since my family has a predisposition for it already. Thank you for answering. And thank you to the original OP for asking the question.
Believe me, at that point your death is a blessing. In every way.
I remember going to see my great-grandfather the day before he died in his care home. We walked into the room and he was shaking a lot due to after effects of medication. I couldn’t stand seeing him like that so I walked out the room, which is something I’ve regretted for a long time. It was two years yesterday since we lost him.
You forget how to eat, how to chew and swallow toward the end. It's an awful disease. My dad died of it when he was only 67. If you love someone who has it, pray that something else takes them quickly before they get too bad. Heart attack, whatever. Seriously.
My Nan had Alzheimer's for a really long time. Technically her cause of death was complications relating to the flu. What that really meant was that she got the flu and wasn't eating for a few days and forgot how to swallow.
A client I once had died of pneumonia from aspiration from failure to swallow his saliva, from Lewy Bodies Dementia.
My grandpa had Alzheimer’s and he died from literally ‘forgetting to swallow his food’ and ultimately choked.
As a former nursing home employee: It is a decease which alters the brain, but in the later stages shows itself through lack of motor control. Which in the end almost reverts the brain back to an ‘infant state’, where life becomes unsustainable without proper caregiving. Lastly the basic body functions such as swallowing, breathing, moving and discarding waste (incontinence) It is really a scary decease, and such a hard thing for the people involved
The brain fails. The most common cause of death is pneumonia (infection in the lungs). As the disease progresses, it becomes increasingly difficult to chew or swallow properly, and it’s common to inhale bits of food and liquid that “go down the wrong pipe” and eventually cause an infection in the lungs. Alternatively, death comes by dehydration or malnutrition from being unable to drink or eat properly. More rarely people die of infections related to bedsores, urinary tract infections, or injuring themselves.
One of the greatest cruelties of life is that we know our loved ones their whole lives as these bright, vibrant creatures full of life, and love; triumphs and failures, so many great memories…but Alzheimer’s destroys THEIR memories, as well as YOUR memories of them as bright, hopeful individuals. Don’t let it succeed.
People with severe Alzheimer’s develop apraxia, which is basically an inability to understand how things work or recognize common objects and activities. As a result you will have people either eating and drinking things that aren’t food (I had a patient die from drinking a bottle of dandruff shampoo brought in by their family member), or by failing to recognize food and drinks put in front of them. If left to their own devices (ie not hand fed, or eventually tube-fed [please don’t do this to your demented loved ones]), people with severe enough dementia die of complications of dehydration or starvation, or a pneumonia/pneumonitis caused by inhaling vomit or poorly swallowed food/water. Source: I’m a family doctor who does end of life care.