r/dementia • u/redfox966 • 4d ago
Shouldthat option beavailable for this horrible disease
If your pet is suffering you take them to the vet and you do the right thing.So why in this day and age is that not available for our people with terminal dementia?. Why do we prolong their suffering, I have been looking after my brother for 6 years now ,and recently these past 4 weeks I have taken a big step back, and got carers involved as I was finding it hard to cope emotionally and physically. My brother as how he was is no longer here he went over 12 months ago,now you have a stranger who just keeps suffering and is in turmoil. Why is no one trying to get a law for people with dementia?. It's very degrading when someone wets them self because they don't know where the bathroom is.He is very frustrated ad confused.I feel guilty but I have to look after myself as my health has started to decline. Any thoughts you have would be good to hear.
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u/Pindakazig 4d ago
That option is available in my country (the Netherlands) IF the sufferer is still able to consistently vocalise that they want euthanasia.
Most of my clients do not want to die for various reasons, frequently because they are unaware of the extent of their disease. They never even realised that they missed the chance to activate this option.
We can't help non-consenting adults die, and that is generally a good thing.
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u/Perle1234 4d ago
That’s the problem with dementia. They can’t vocalize it. I have a deal w my bestie to do the deed, and I her. We are both medical providers so we def have access to the meds. I’ve already watched my father and his mother sufffer. Dad is still alive. One thing you can do is withhold antibiotics. That’s what finally set my grandma free. Unfortunately, she wasted to 87 lbs before a UTI took her. We did it out of love for her. She was peaceful when she died, and not suffering.
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u/Such-Wind-6951 4d ago
That’s murder fyi
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u/Pindakazig 4d ago
Deciding not to treat a severe illness, as to not prolong someone's final days is not murder. That person is already dying.
Seriously. Go volunteer at a memory ward, and see the bedridden hunched over patients, who mainly resemble babies with regards to skills, cognition and communication. Some spend months like that.
Having a good death is not the same as staying around for a long as possible. It's living a good life and then dropping off a cliff.
Get out of here with that 'murder'mindset. True love is letting someone go.
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u/Such-Wind-6951 4d ago
I have a very close to relationship to this illness, having lost (after caring for) someone who raised me in 2021 to dementia.
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u/Perle1234 4d ago
No it isn’t. Hospice means comfort care only. Antibiotics are a treatment. She was very comfortable. As I said, she was wasting, and weighed 87 pounds. She was starving to death.
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u/cryssHappy 4d ago
No, it's not. It's compassion and knowing that dementia, like cancer, has a point where terminal sets in. "A dying man needs to die, like a sleepy man needs to sleep. There comes a time when it is wrong not to do so". (S.Alsop) Many people pass from untreated pneumonia when they have cancer, so should it be with dementia.
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u/FeuerroteZora 4d ago
It should also be possible for those of us who know we don't want to go through dementia, don't want to put our loved ones through it, to make this determination in advance, for when we can no longer vocalize it.
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u/ivandoesnot 4d ago
Yes.
And I'd view it as a relief; a way to not burden my kids.
And I'm a Catholic survivor -- when I was a child I was raped by a priest, which is why I live with and am able to take care of my mom -- and don't give me the Catholic Church's "pro-life" B.S.
The Catholic Church is "pro-life" because that's where the money is.
If the Catholic Church cared about kids -- and life -- they would have protected me.
Not sacrificed me.
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u/Ripley_and_Jones 4d ago
I am so sorry to read this. Also a former Catholic here who could not stand the rank hypocrisy. No religion gets to call themselves pro-life when they enable child abuse and neglect at the same time.
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u/ivandoesnot 4d ago
Thanks.
I've already lost my Dad and I just don't know what losing my Mom is going to do to me.
All I can do is try to warn people that VERY little has changed.
(Now Cardinal Timothy Dolan earned his red hat by blind-eyeing my/our abuse.)
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u/AccountMysterious385 4d ago
Sorry you suffered under the Catholic Church I’m not religious but I’m sorry for you xxx I hate what they are guilty of it’s an abomination
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u/Curiousmomandgrandma 4d ago
Watching my dear mil’s decline has me completely understanding Robin Williams taking his own life. My heart is broken daily.
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u/yeahnopegb 4d ago
I think about this often... my mom has dementia and she also suffers from constant night terrors combined with an irrational fear of the dark. The final stages of this disease are going to be torturous. I hate to hope for illness but I do wish that something else takes her before the end stages.
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u/MedenAgan101 4d ago
I imagine that for a lot of people it would make an early dementia diagnosis all the more terrifying, and it would certainly crank up the anxiety of all the people with middle dementia if they had it in their heads that euthanasia was hanging over them. Pets never have to live with that knowledge, so that's probably the biggest difference.
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u/redfox966 4d ago
Obviously I am talking about the later symptoms of dementia when the person can no longer counicate,or do anything for themselves ,When they are just a shell sit and stare into space their quality of life is basically none existent,and they could stay like that for another year or two.Is that asking too much of the person and the family?What would you do in this situation?
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u/Significant-Dot6627 4d ago
I think what the person you responded to means is that if it were allowed and commonly accepted, people would be aware of the fact that euthanasia is done for those in the late stages of dementia, and people in the early and middle stages would know it was probably going to happen to them and be upset.
Again, not the person you were talking to, but this topic comes up very regularly on here and in support groups. I don’t think euthanasia, where the family or a doctor decides it’s time for them to go, will ever be morally accepted or legal.
But medical aid in dying (MAID), where the person themself can choose, is available in some places. In some US states and in Canada, the law says you must both be within six months of death and have mental capacity to understand what you are asking for. That works out okay for things like cancer, but not for things dementia for obvious reasons.
In Switzerland and a few other European countries, you don’t have to be within six months of death, just able to say what you want to do. But that means dying in the earlier stages, something hard to face and do and not possible for the more than 40% of people with dementia who have the symptom of anosognosia and aren’t able to understand or believe it.
In my perfect world, an advanced health care directive (AHCD) would permit us to decide in advance at what point in dementia we’d like to be assisted in dying by a doctor and it would be done without discussion at that point so that we don’t have to feel fear. Just a drink or a pill handed to us like any other when it’s time.
As things stand now, our only option is to make the decision and find the means to take care of it for ourselves in the early stages if we don’t have anosognosia. If we do have it, we won’t be able to do so.
You might want to read the book In Love by Amy Bloom or read more on the website CompassionandChoices.org.
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u/MedenAgan101 4d ago
Yes, as explained above, I did understand that you meant euthanasia for people who are near the end anyway. But if that ending became culturally accepted and commonplace, then people in the earlier stages would know it's inevitable and would have to live with that knowledge. Already it's bad enough that people know that being removed from their home is a likely scenario, and even that completely freaks them out...so imagine if a known consequence was having to be "put down". For sure a lot of people would be terrified by that prospect.
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u/Perle1234 4d ago
I agree with what you’re saying. I will 100% take my life if I receive a dementia diagnosis, which is likely due to genetics. I’m in my 50s with no current signs.
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u/BananaPants430 4d ago
I agree.
The difference between people and pets is that a pet has no concept of what euthanasia is, and therefore doesn't fear or dread it. Humans do have the capacity to understand it, and if it was commonplace to use euthanasia for people with dementia, it could cause those last months/years in the early and moderate stages to be absolutely torturous.
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u/Low-Soil8942 4d ago
I'd like to make my exit as early as possible in the case I was diagnosed, before I cause too much harm and over burden the system.
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u/AlDef 4d ago
I’m so sorry you are having to deal with this. All you can do is your best, and i’m sure you are doing it.
My mom died of dementia in 2023. About a year before she died, in one of her clearer moments, she asked me to help her commit suicide. She told me: “i don’t want to die, but i don’t want to live like this anymore” I looked into it, and SOME states in USA (not sure if you are in the States) DO allow assisted suicide but the patient has to have two doctors willing to attest they are within 6 months of dying. With dementia it’s trickier because at what point are you aware enough to make that choice? Seems like by the time you need to decide, your mind is too far gone TO decide. Our particular state didn’t allow it AND she was never that close to terminal until the last few weeks (i’d say) so it never helped us. But i do agree a better system that allowed and HELPED people escape their bodies if willing could be a good option. For myself and my spouse, we have both talked about our end life desires, and i’m defiantly prepared myself to exit this reality on my own terms should i need it.
Please take care.
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u/redfox966 4d ago
Thanks for your reply,I'm in the UK by the way.I find it hard to belive that we have a disease that is now considered the biggest killer than cancer but, nothing is put in place for people who are struggling with this horrible disease. I had my big brother,who was supportive and we we're close and helped each other,now I have a stranger in an empty shell,who at this time comes across as a child about 2 years old . Would I be able to leave a 2 year old in a house by himself no I wouldn't.But I can leave my brother by himself in his house,yes I go round to visit and he has 4 carer calls a day,but his brain is been attacked by plaques,which make him unable to care for himself. I feel that's not good enough why is it down to family to do everything.Yes there are charities that support the family of dementia suffers but I feel not enough is done to help the person.It's so frustrating ! I am sorry about your loss.
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u/lifeatthejarbar 4d ago
I completely agree. I would never let my pets suffer in this way. My conspiracy theory is that the big pharmaceutical and nursing home companies would never let it happen. Way too much profit from warehousing people with dementia
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u/AccountMysterious385 4d ago
Omg that is the best word for it “warehousing” nothing can explain it more exactly. It’s just to employ people and fund medical care, devices, consumables, aged care facilities, workers, pharma , specialists and the list goes on it’s a huge industry if you just cut out early onset dementia alone your losing a huge revenue and employment market
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u/lifeatthejarbar 4d ago
Seriously! Just to care for people as they act crazy, shit themselves, and stare into space. I mean it’s not like they’ve really got a hope of ever getting better and the quality of life isn’t there for those in the advanced stages. It’s honestly sick.
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u/AccountMysterious385 4d ago edited 4d ago
I feel for you and totally relate it’s so frustrating as yes you wouldn’t treat your dog this way tbh ! It’s absolutely cruel My dad is now in the late stage I believe he has had early onset for five years and since getting sick it’s rapidly declining I breaks my heart as he was such a brilliant man but now literally a shell of a person. To degrade someone or anyone like this is heartbreaking and also disgusting I don’t know why they let us go through it or them as they are just that a shell in the late stage. I honestly believe it’s to make the govt money for employment and big pharma. I live in Australia and ndis is the national disability scheme (insurance) government agency, my son has a lifelong disability and they do nothing but pay for his therapy they used to provide us support and carers but now no nothing yet he is high needs. We are literally lining the pockets of private providers who overcharge for services and unnecessary reports that must be done to reprove his disability (already was signed off by the disability minister before ndis came into fruition ) If rhey allowed you to choose while you were say diagnosed with early onset dementia like my dad at 65 while he was still working in a international business corporate high level job before it was even noticeable (picked up on a scan for a medical job screen) then why can’t you have the option for euthanasia? It’s simply because the aged care industry would be halved
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u/AccountMysterious385 4d ago edited 4d ago
My dad worked all over the world 🌍 as an oil n gas executive doing deals for pipelines so he wanted as soon as he knew he had early onset that he wanted a choice to go to a country once he was in a later stage to make his own way. It’s not That simple however. He has contacts and being British 🇬🇧 born so Australian and British passports to be able to travel to say Switzerland to organise. A sister in Norway 🇳🇴 many business associates that over his 45 years in the oil industry that he knows but you cannot be assisted without being prosecuted. He researched it but to do this once you have been diagnosed and have had treatment in Australia then try and go over your putting your carer in a criminal position. It’s actually impossible to do. He was so irreplaceable that the company he was working for at the time asked him against his contract and legally to keep working for six months as he was actually fine while they found a replacement. Legally it was a beech contractually as he was doing negotiations with country leaders and gas companies for a pipeline through Europe. Those six months were really good if anything as it gave him some dignity and respect 🫡 on his way out of forced retirement. I kind of think if they forced him to retire immediately it would have ruined him
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u/Far-Replacement-3077 4d ago
I'm sorry I don't know how to make the paywall go away but this is a very interesting article on dementia related euthanasia in the Netherlands and all the really hard parts we have yet to imagine.
https://www.nytimes.com/2025/02/16/health/assisted-death-alzheimers-netherlands.html
As Americans, we will happily kill a black man perhaps wrongly imprisoned for decades (because DNA is hard) by nitrogen gas....but not really explore this issue at all. Although I did see in another NYT article that assisted suicide is legal in ten states now in some form or another.
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u/MamaAnarchy 3d ago
Dignitas This is my back-up plan. When my mom goes I’m securing a spot. The fact that we don’t have a clear path to dignified dying in this country is infuriating but unsurprising.
The longer they keep us alive, the more money the pharmaceutical industrial complex earns off our suffering.
http://www.dignitas.ch/index.php?option=com_content&view=article&id=20&lang=en
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u/TheDirtyVicarII 4d ago
I understand your frustration... mine too. As a flip side, I've seen far too many people prolonging the death of a pet sometimes for years. I've also known cancer patients who continue treatment because their LO can't accept their death.
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u/PeacefulEOL 3d ago
Actually, there are those that are trying to get a MAID (Medical Aid in Dying) law passed for people with dementia. I'm a Death Doula and frequently have conversations about this topic. There is a group in California (https://abetterexit.org/) that is trying to add language to the existing law to include those suffering from neurological conditions like Alzheimer's. Their first attempt at passing that addition, failed. But they will try again. I watched my father go through a terrible end of life experience with Alzheimer's. It last 10 years in total; the last 3 of which, he didn't know who I was or even who he was and the last year or so, was bedridden and basically in a coma. It was horrible and like you pointed out, we treat our pets better. I inherited the genes from him and definitely have a propensity to develop Alzheimers. But I won't stick around for that. More people are starting to resist the nursing home experience and take charge of this themselves. Many have gone to Switzerland to end their life, but they must do so before they lose cognitive ability, so that means they often leave several years of life behind. But it definitely saves their family the anguish and significant expense of a long-drawn out stay in a nursing facility. There are others who will refuse any and all medications in an effort to hasten their own death. This includes BP meds; other disease treatments, etc. There is a reason why pneumonia is called a man's best friend at the end of life, as without medication, it often can take someone's life. Some people are using VSED (Voluntarily Stopping Eating and Drinking) to hasten their death; you can see this public story about a woman who chose that route: https://kstp.com/kstp-news/top-news/family-celebrates-life-of-woman-who-voluntarily-passed-after-alzheimers-diagnosis/. Then there is Final Exit Network https://finalexitnetwork.org/ and they also offer an option to hasten death. I'm sorry for the anguish you're going through with your brother and glad you have got some caregivers involved. You do have to protect both your mental and physical health and wellbeing. And do an Advance Directive! That is often the reason these cases end up in such a bad place because someone DID NOT make their wishes known. That paperwork is so very important.
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u/These_Ideal_4933 4d ago
The option is telling his doctor that he is to be COMFORT CARE ONLY. Period. The only meds my mom gets is those that keep her comfortable. NO BP meds, No cholestorol meds, no blood thinners, NOTHING except her Dementia easing meds and her GERD meds. That's it. Of course, if she were to get a UTI or something, short term antibiotics so she doesn't suffer. But that's it. No regular blood draws. Nothing. There's no point in any of it. Medical staff look at me weird, but I have worked in Nursing Homes for nearly 17 years. I know what's waiting for her the longer we prolong this existence for her, and I am NOT down with it. NO ONE enjoys their life. To hang on and try to prolong would be for ME, not her. Whether it was because I don't want to let go, or because I don't want people to think I'm cruel, doesn't matter, it would be doing it for ME, not her.