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Younger-Onset AD or Other Dementia
No suicidal, but don't want to live through final stages, what's the point?
Id declined steadily for the last 6 years. I read and hear the caregiver stories and it sounds like a nightmare.
I don't want diapers, to be fed, to be bed ridden it all sounds horrendous and I don't want to go through it, or drag my family through it.
Anyone like minded?
There are support groups out there.
Reach out to them and if you still feel the same way after you do that then get
back to me. This is hard to deal with and you need to speak to others. This
place is also good. I would start with Dementia Mentors because that one offers
one on one with new folks. I am also willing to speak with you privately.
Dementia Alliance International (DAI) is the global voice of
dementia, working with the philosophy of ‘Nothing about us, without
us’, and exclusive to people with a diagnosis of dementia. DAI provides weekly online
support groups for people with dementia, including a support group
specifically for people with a diagnosis of Primary Progressive Aphasia as a symptom
of their dementia. They
are held in time zones suitable to people living in a number of different
countries, and everyone with dementia who becomes a member of DAI is welcome to
join one of these support groups. Membership to join these support groups is
also free. Please join DAI here: www.joindai.org or contact Mick Carmody if
interested in joining a support group firstname.lastname@example.org
Dementia Mentors will be hosting several gatherings per
week. Since we are international, these meetings will take place at several
different times of day in order to compensate for the different time zones.Our goal is to keep our members socially active. This is one of the
most important ways to keep the symptoms of dementia at bay.
more information or join our cafes, if you are living with dementia, please go
Dementia Mentors - Support For
Mentors - Support For Dementia
The concept of a Memory Café was born in the Netherlands in
the late 1990’s. However, after the turn of the century, they began popping
up all across the U.K.
View on www.dementiamento...
Preview by Yahoo
There is an on-going support group (zoom) for people living
with young on-set and/or early to moderate stage dementia and who identify as
Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Pansexual. The group is
eager to welcome qualifying people into the group. Because of the
vulnerability sometimes associated with both dementia and LGBTQIP realities, we
do have a screening process. For more information for yourself, a loved
one or a client contact email@example.com.
I can completely understand. I have been progressing for 7-8 years, and am fairly advanced now. I am no sure you age, but the statistics state that EVERYONE with young onset (those younger than 65) THINK about this as a possible solution. So you definitely no alone.
Unfortunately, this forum MOSTLY comprised of caregivers and people MCI and there very few of us, relatively, with actual dementia...and as such....MOST of what we need talk about (no just on this subject) is discouraged here....whether intentional or subconscious, it hard say....but it seems that us talking about our impending death and the ugliness and fears we have progression and most especially our fears about how they care us - makes them radically uncomfortable. I have often speculated why this is, privately as g-d forbid we have a REAL conversation on here.
So let me say a few things. NOT everyone dementia is cared for so poorly. There are OTHER places where the people who care us are our partners and hold us up the light and help us have the life we want. Dementia Alliance International or DAI one of those places. So I am no sure if you have people who care for you or if you on you own...but the peeps behind the peeps are DAI are awesome role models train care partners...just sayin....it DO happen.
Also...there ARE good deaths dementia...but in order get one you may have write a rock solid Care Plan where you detail HOW you want every possible instance handled. I wrote one....it details agitation, pacing, and wanting leave and go home - which really a sign an unmet need us....and no only do I educate my carers (as who knows if they change), but I detail that I want them check if I hot or cold or need pee....and if all else fails give me my pain med. And that under no circumstance are they give me an anti-psych. And, I wrote it in a way that anyone does - they will be hit up with a lawsuit (because I have no intention of letting what happen on the caregivers side happen me....but g-d forbid we can no talk about that here either because all hail the mighty caregiver). In any event, I left no stone unturned....I left no thing chance.
And you know, I planned my life...my education, my career, my children, their educations, where I lived, my free time.....so why wouldn't I plan every last detail my last chapter life...up and including my death?
No everyone chooses this option....and no everyone should. It an EXTREMELY, extremely personal decision...and it a spiritual decision as well....and people who choose it, do so only after long, careful, critical thought process.
I have ALWAYS recommended that anyone dx'd a terminal dx like dementia get therapy...because by g-d it a LOT grapple with....and frankly, there very little support out there. The Alz Asso nice....but frankly, they like the version of us depicted in the Namenda commercials....or those who no really showing any signs the disease. So, I think therapy a good place discuss all the various issues surrounding all this. I did...caring for my mom 24/7 with a very non supportive family while my health was failing was tough on me....and then be dx'd Alzheimer's. It allowed me process and be good and solid in my head and heart....and my lady even offered be at my death help guide me spiritually, as I an extremely spiritual person. So there something be said for getting you mind really, really right with you thoughts this. And you definitely should before make any decisions.
Suicide is escape from depressed or scared....vs....early exit which is a pragmatic approach a difficult situation. People who dying know the difference in a heartbeat, and easily keep these two separate....people who no dying, for some reason, however, cannot seem separate these two....and when we start talking about it they get all kinds skittish and imagine suicide....which render it hard have a very real conversation about a matter that important a great many us who terminal.
I wish this were a safe place these kinds of conversations...but it really was never very supportive people who actually have the disease or the kinds of issues we really do face.
There a movie on Netflix you might appreciate called How Die In Oregon:
(That lady cancer....I dream of a death like hers, surrounded by her loving family)
It no legal my state (Right Die)....YET....and it no legal anywhere for those us dementia....YET....but I can wish for and work for....which I do. And, I share my story publically in the effort and hope help change the laws.
There a lot this subject. Feel free PM me as well.
Many thanks for your thoughtful reply.
I went right away to the org. You referred and joined.
I am open to every option and every opinion.
Thank you very much for your thoughtful reply.
Im 60 yo. Going into stage 5.
My son is my caregiver with outside support.
We are all fine for now. I've always been super independent.
Never imagined living with my son for support.
I lived in a facility "independent living"
For 9 long months before we could arrange
For him to take over. It was a great place, the 85 yo residents were
Very nice to me. The food objectionable.
I would consider going to a different place if needed.
My son is wonderful caregiver. Read up on the best
Pracists and I know I'm very, very lucky.
I learned valuable info. In your reply.
I am 48, and I still care for my elderly mother as well as a dependent adult daughter and 2 year old granddaughter who was just dx'd with autism. I am just enter stage 6 and I am 7 years away from qualify for memory care...so IF anyone where place me, no only would it be against my will, but it would be a Medicaid Nursing Home that understaffed for regularly elderly people....and definitely way understaffed for the likes of someone with Alz...who did no want be there. I know with reasonable certainty what would happen me....and it my worst fear. I would be cold, and because my brain broken....I would be agitated...and because the world STILL do no know how properly care us, they would drug me anti-psychs....which don't work....and so I would be rendered sedated, unable talk, cold....and no one would think put a blanket on me. I lived a good life, I devoted myself service others....I deserve a better end than that. For me, that what we do prisoners we torture....no people we value.
The Right Die Laws state (in the states it legal) that you have be within 6 months of death and you have be competent. Unfortunately, with dementia, we will not be competent within 6 months of death...and MOST of us, if we want an early exit, would want it before 6 months of death anyways.
The Final Exit Network people say that MOST people in our shoes that choose it, choose it because they never want get a point where they no longer in control. Which actually makes perfect sense me, as a likewise independent person.
I also want live my whole life FULLY and COMPLETELY the best my abilities...and AM. I have always designed a life that I LOVE living, where I am excited fly out of bed in the morning and I drag my feet go bed at night. I do no waste precious seconds my life feel sorry myself, and I am intimately aware of my clock ticking loudly. I know what dementia and Alz doing me - I FULLY aware my losses. I am practical and pragmatic a fault. It is no at all an emotional decision that I made....but a purely practical, logical one. AND...it fully supported by my doctor and medical providers (who equally sympathize someone my shoes and wish the Right Die Laws legal here). I am very blessed and lucky that way.
That said, I am the mom here...and I just can no go that place where my daughter have wipe my butt....I just can't...and I don't want do....and, I don't have do. As a caregiver my mom, I am intimately aware of the fear, unsureness, and difficulty of BEING responsible for life death decisions another human being.....AND....I would no place anyone I love in that position. I am so warmed in my heart for those who have someone they love in a way do that, and can....but my heart was never cut from the same cloth....and I just can not. So, I do no wish place my daughter in the position of have make the choice of when it time.
Likewise....for one choose and effect their end....one needs be of sound mind, AND, fully able execute it on their own. I do know that the Final Exit Network have guides that DO actually help you...so that nice as well. I also know a LOT of people who are using them and have used them. For myself, I will likely simply stop the meds that keep me alive...when we can no longer comfortably provide me the level of care I need in home. BUT, I am VERY comforted by knowing IF I want a quicker method, the Final Exit people are there for me.
Recently, the FTD video online support group was on Vice that aired, I believe, in March 2016....talking about exactly this. I do no have the link.
The Final Exit Network arose when the Hemlock Society stopped, carry on what they were doing. There also a book that you can buy Amazon called Final Exit, I forget the name author....but it detail everything. As well, you can google "Exit Pack" as that what people use. I found it was all shocking and hard learn about.
I recently traveled out of state, had do, in order learn about how all this works....and I gave multiple interviews people about this, my story, and right die laws. I do hope one day the laws update and extend include us. I would LOVE be able make the decision when I am of sound mind...and then be able allow myself progress further, and at a given pre-planned level progression....have my doctor order and give the med that do it....LIKE in the movie How Die Oregon....I just real love that lady cancer death, and wish that kind of death self.
Stage 5 is when you know what you have is really what you have....like you can no longer doubt it even you self....it become very real in ways I have never been able articulate. And you still have you brain enough KNOW...and you KNOW what coming you....and you reasonably KNOW how you going react it.
But that I plan my death (as I planned my life) does in no way negate just HOW much I savor the time I have or how FULLY I live my time left. You know, Carpe Diem....and "suck the marrow from life whilst ye may"
"I went in the woods because I wanted live deliberately. I wanted live deep and suck out all the marrow of life....to put route all that was not life; and not, when I came die, discover that I had no lived." Thoreau.
People have a lot fear surrounding death....and other people have a lot more trust in others. While I often daydream and long for setting my life in other's hands....reality often replace it with reminders that I have exceeding bad luck in rolling dice of people care me. In the end, when you want something done right....well....you have do it you self.
In any event, we multidimensional people....and just because we think about and plan out final days....does no preclude our enjoyment of this day, this moment....the warmth the sun on our cheeks. We can do both.
Thanks for raise the subject.
Dear Michael,Good information!