Aimless! This Is Your Life!

Preamble

I've been posting on ILE for something close to eight years now. In all that time I've been pretty cagey about my personal life, and for good reason. Only a relatively short time ago ILE had a bevy of posters who vied to zing every target that came within their attention. I would never have posted this then. ILE is less of a zingfest now and you won't see me pining after some of the banned people to return.

Today's thread about having kids got me thinking whether I should stop holding out on this and just start a thread about my own kid - so that I won't hijack anyone else's. This is that thread.

WARNING

Some of this will be hard to read for the more sympathetic beings on ILE, especially parents. I can assure you in advance that it isn't hard for me most of the time, and I am not doing this to precipitate a long series of "so sorry" replies. Please don't be sorry on my behalf. It isn't necessary. I would repeat that, but it rarely does much good to tell people that. They do it anyway. (There. I tried.)

For some of the younger people on ILE this may just be vaguely threatening. If so, just skip it. No harm in that. I understand.

I'm just hoping this story does someone some good in the future. Anyone who gets in my situation can use all the info and advice they can get.

What's the Big Deal?

I have a daughter who is 24 years old as of last April. She is very, very severely disabled. There's no way to sugarcoat it.

She can't walk, or stand up on her own, or operate her own wheelchair. She can't bathe herself, dress herself, feed herself, or take a drink of water without complete physical assistance. She must wear adult diapers.

She can't speak, or sign, or even use one of those many ingenious devices they have nowadays, to communicate even a simple yes or no answer to a question about her basic needs or wants. If she hurts, she can't tell you where or when. Because of her disabilities, her IQ can't really be measured, so it is officially "below 60".

Her diagnoses include seizure disorder, hypotonia, scoliosis of the spine, cognitive visual impairment, and mild dysphagia. I'm probably forgetting several. They pile up after a while. The fundamental diagnosis is exposure to a viral infection in the womb, fairly early in her development. Not rubella, but cytomegalovirus (CMV).

At birth she had two club feet. Her heart had failed to form properly and she underwent open heart surgery at the age of 8 weeks. The club feet were surgically "corrected" at one year. Her ankles have all the mobility of a tenpenny nail.

So, is She Some Kind of Vegetable?

A natural thought, but no. Far from it.

Even though she can't actively communicate her needs, she has a pretty good grasp of what's spoken to her. Understandably, her life experience has been pretty constricted, so subjects that are remote from her personal experience are sometimes difficult for her, she has no trouble with abstract thinking or concepts. That "below 60" IQ is very deceptive. The real problem is scattered localized brain damage and brain damage is as capricious and individual as fingerprints.

In sum, she's just my daughter, not a collection of diagnoses, and she's a very fine person overall. She's very cooperative at all times with all her caregivers, patient beyond imagination, and other than a brief lapse during adolescence, she's polite. Granted, it helps that she couldn't get into much mischief even if her life depended on it, but still... she's a peach.

What Are We Supposed to Do, Applaud?

OK. So that was a bit sarcastic of me.

No, at this point in my and my wife's life, we've all three of us come to terms with all this. This is our version of normal. It is how we live. We know it won't change much for the better. We can only mitigate.

Happily, my daughter has, at long last, moved into a living situation where she is well cared for, and she would continue to be if we were to die. (Who am I kidding? I will die, the only pertinent question is who goes first, second and third.)

Strangely, although coping with my daughter's health problems has been easily the most salient fact about my life for almost 25 years, it rarely has any bearing on my participation in ILE. ILE just doesn't spend much time in this neighborhood. Few people do, voluntarily.

Are You Quite Done Now, Sir?

In the interest of avoiding tl;dr syndrome, perhaps I am, for this moment. But shit like this teaches you some life lessons, so first, I want to make a first stab at a take-away message.

**ahem**

(stares at the screen for the longest time...)

(shakes his head)

Whatever I say it's going to sound trite and will miss the mark. Which is sad, because this kind of experience sears you, it tattoos your every inch, like fighting a wildcat for a living, with a healthy side dish of ever-living grief. Despite which, after much thought, this is what came out:

"Nothing in all this is foreign to your heart."

In Conclusion (Not Really)

I should probably throw the floor open now, for questions, if any should arise.

There are a ton of them, such as "who pays for this?", "how did you stay sane?" and so on, for anyone with a talent for curiosity.

Feel free to engage me. I am willing to share, where appropriate. If the whole idea leaves you mentally numb and speechless, that's a pretty normal reaction, too.

Aimless - first of all thank you for sharing your story.

Had you planned on having more than once child before your daughter was born? I'm curious because if it was exposure to a virus than you probably could have had other children without an increased risk of disability, right? Did she live with you when she was younger or has she always had to have 24hr care?

Don't know what to say except that I always thought you were a mensch and now I think- well, whatever I could come up with would be damning you with faint praise.

yes - thank you for sharing this story - and JR and the Blecch's comment echoed. xp

forgive me for being presumptuous - at what point in all of this were you able to 'come to terms' with the situation?

I don't have a question, but I'll echo the "thank you for sharing this story" sentiment.

I had typed part of this out on the other thread where people were sort of addressing the idea but then lost the post.

Anyway - this is something that interests me because while not exactly the same, I had a cousin who was a couple years older than me and severely disabled. While he could walk, he was never able to speak or really communicate more than very basic needs and required pretty vigilant near round the clock care. When he was 16 he ran away from my aunt while they were out shopping and she had turned her back. They were in a big warehouse store and by the time they had finished searching the place he had taken off running. They found him the next day in a field - he had been hit and killed by a train. Despite his difficult life and ultimately really tragic death my aunt and uncle loved that kid so much and I they would do it all over again in a heartbeat if given the "choice". I don't think that you can parent a disabled child without the experience changing the very essence of who you are and staying with you forever.

". . .because this kind of experience sears you, it tattoos your every inch, like fighting a wildcat for a living, with a healthy side dish of ever-living grief." and "Nothing in all this is foreign to your heart." are both so so beautiful.

I may get back to this later (if my mental state gets back to normal), but I'd like to mention that I remember you posting about this several years ago while you were logged out. I'm glad to finally know who that poster was, it had been bothering me all of these years.

ENBB, my wife was 36 when she was born. By the time she was two it was obvious that she would require all the care we could muster; a second child would have starved for attention and "oxygen" in the midst of closely clustered crises. So we decided to stop at one. Before that, two children would have been the goal.

She lived with us until she was almost eight. During that time I was mostly the fulltime caregiver while my wife worked. After seven years it was obvious that the burnout was going to kill us one way or another. It still took another year to take that step. Of all the things I have ever done in my life, having her live away was almost harder than I could bear. No other memory makes me tear up faster. But, we survived as a family.

Objectively, though, she's always had 24hr care. For 8 years it was provided by my wife and I. She was literally never out of my sight for more than two minutes until she was asleep. Even then, we were alert for any noise all night long.

I honestly can't even begin to imagine what that must have been like.

"By the time she was two it was obvious that she would require all the care we could muster; a second child would have starved for attention and "oxygen" in the midst of closely clustered crises. " - Yeah, that is what I was wondering about. My aunt and uncle had another child who to be perfectly honest, never got the proper care/attention he deserved and he's a pretty messed up (albeit technically perfectly healthy) adult as a result.

Did you know about any of the disabilities before her birth? Had anything abnormal been detected on ultrasounds or was it all a total shock?

at what point in all of this were you able to 'come to terms' with the situation?

It was a slow retraining process. It comes to you very piecemeal, in fits and starts.

I came to parenthood knowing a lot about parenting. I had to throw out about 90% of the details and break it all back down to the core: love your child.

Then it was a slow process of relearning what normal meant. Seizures were normal (and still are). Relying on tiny clues of facial expression to understand my daughter was normal. Telling her story to strangers over and over and over again was normal (you would not believe how many people have come and gone in her life, as caregivers, or just bureaucrats of various service agencies, and they all need to be educated about her.)

Patience with the medical system took time and unholy effort; it is so deeply, deeply flawed, but there's no alternatives that are better.

Basically, just dragging all three of us into a position of relative stability where we weren't constantly threatened by a lack of resources to deal with the multitude of problems that flooded over us all was probably the biggest key to getting more comfortable with it all.

Did you know about any of the disabilities before her birth?

No. Nothing was visible on the ultrasounds. The breadth of her problems only became visible one at a time, so the "shock" was spread out. The big initial shock was the heart defect. After that, it was just scrambling to keep up.

I have nothing but silent awe and the deepest respect for parents of severely disabled children. We grew up with family friends who had a very severely autistic son, and watching their patience dealing with him was amazing. Thankyou for sharing your story, Aimless :)

Before I turn off the computer and go to bed, I will answer a question that will probably come up. As of today, she lives about 10 miles from my house. After a certain amount of trial and error, we've discovered that one long visit of about 5 hours each Sunday afternoon is the best way to spend time together. It is a rare week she doesn't get a visit.

During the week we ask to be informed by phone if anything happens from a list of events we know are worth tracking, so we can prevent any creeping deterioration in her health. Our calendar is scribbled over with notations about these events.

During visits, we all get down on a floor mat together, talk, cuddle a bit, and just generally hang out. She has very good taste in music, so we listen to CDs a lot.

She attends all family gatherings within 50 miles or so. Transport is difficult, and I am slowly cutting back on manually lifting her. She's approx. 110 lbs. but my technique is excellent. I don't like to think about the day I can't hack it any more.

Further questions will have to wait for answers until tomorrow.

It is tomorrow. I'll be online, more or less, for a while.

During the summer I work a playscheme with children with complex and severe disabilities and what you say rings v. true, Aimless. I have nothing but admiration for parents and carers of people whose lives are so filled with tasks and difficulties that most of us never have to consider - I'm with these guys 6 hours a day for 5 days of a week, and that can be knackering enough.

But it's also true that even people whose disabilities might appear overwhelming have fulfilling lives and experiences. I love the job I do because we have a shitload of fun and I feel like I've learned most of what I know about being human from the children and young people I work with. "Nothing foreign to your heart" for sure.

Best wishes to you and your fam, and thanks for feeling able to talk about this on here.

Wow, Aimless... I'm practically speechless.

thank you for this, aimless. a v gd friend of mine is abt to become a dad and it looks like he and his wife are going to be facing some quite tough times ahead so i worry about them and shit, and yr posts kind of put things in perspective, a bit.

Aimless, I want to echo the thanks of everyone else. I'm wondering if and hoping that you've found some ways of sharing your love of wilderness with your daughter.

Wow, Aimless... I'm practically speechless.

My thoughts too, really.

Thanks for asking that question, Jaq, I was wondering the same thing.

Wow, Aimless... I'm practically speechless.

My thoughts too, really.

― Ned Raggett, Wednesday, August 25, 2010 4:24 PM (5 minutes ago)

Same here. Thank you for sharing your story. I'm especially happy that you think that ILX has become a civil enough place to do so.

Thank you for sharing this Aimless. Your worldview is an inspiration.

NV, good people working with the disabled are worth a ton of gold to the families. Thanks.

Michael, Ned, WmC, hah! Gotcha!

Ward, tough times are tough times, regardless of how they stack up against some imagined scale where other people have it tougher. Everyone's struggles are real; comparisons are misleading. For example, my wife and I fare better as a pair than the single parents in similar situations, who probably envy us a bit. Go figure.

Jaq, our daughter went camping with us each summer until about the time she left home. She always loved the intimacy of all three of us sleeping in one small tent, but beyond that... eh. She mostly lets me enjoy the wilderness and just tolerates my always-similar stories about my hiking trips, because she is very forebearing toward my quirks and foibles, as I am toward hers.

As for providing inspiration to others, I am always happy to do so, as long as it costs me no further efforts than what I'd be doing anyway. ;-)

Just read this and don't really know what to say. I'm glad that you've found a place for her that you feel good about and that she enjoys. My sister has a son with Downs syndrome, and though that involves a comparatively mild set of disabilities, I know that his future care is a lurking source of worry for them.

Also, other folks reactions must often be a bit much to deal with, so really glad that you feel you can talk about this stuff here.

It easier to talk to others about it now that (after endless exertions to secure the correct resources) the stream of unrelenting bad news has turned around and things are going fairly well (or as well as can be under the circumstances). It is also easier to talk about it now that I have a couple of decades of practise to draw on.

Most of my co-workers are only vaguely aware my daughter is disabled, if that. The co-workers who must know, do know. The amount of info I distribute to the remainder depends on my perception of them as people. There's no reason to spread the word as if it were a gospel.

Aimless what kind of financial support does the govt over there provide for you? I know in Aus it has always been a very poor area - carers are really not looked after at all in this country, and the disabled don't fare too well either; and we have reasonably good social welfare/medicine.

you and your wife sound remarkable.

your daughter, too.

xpost to Trayce

Scrounging for government-funded resources has been an education all by itself.

The first most obvious thing is that the programs to help the disabled here have been created here and there, a little at a time, ad hoc, at all the various levels of government that make the USA so confusing to outsiders: federal, state, county, city, with school districts straddling several levels at once and sometimes inventing their own (unified school districts). As a result, no one anywhere has a grasp of the whole pastiche or how it fits together. It is U&K to seek info from everyone constantly. Never rest.

Please note: the next time you hear a politician say a program must be small and precisely targeted, like a rifle shot, and not spread all over like a shotgun blast, (s)he is talking about creating this kind of random pattern of isolated programs. It tends to save expense, yes, but by being so confusing and balkanized that it defeats the purpose of delivering services to the presumed beneficiaries. Voila! Money hidden in a labyrinth == money saved!

As of now, she gets money from SSI (federal), from Medicaid (joint federal/state), lives in a group home run by a non-profit contracted by the county and paid for by drawing out of several mysterious buckets of government and private money. She doesn't go to school any more, being 24. She does have an "activity program" that's woefully underfunded and understaffed.

She has a county caseworker, but at present my wife and I (as court-appointed legal guardians) do most of the work a caseworker should be doing. We call in the caseworker only when she's needed to untangle paperwork snowdrifts.

The crazy thing is that, somehow we've managed to put together a home and a life for her that mostly works out OK.

Perhaps, the key factor is that the non-profit that runs her group home does a sterling job, and her particular group home has a tradition of being well-run that perpetuates itself, because it is in the interest of the staff to hire only people who will fit into that tradition. Having established itself as a good place to work (in an industry notoriously riddled with bad workplaces), they constantly attract and keep good people, who come in viewing it as a refuge of sanity and are happy to stay. We were plain lucky to place her there.

I'm not sure we've ever interacted, but thank you for having the guts to share this. From your first post, its clear that you have strong concerns about making it into a story, and not just one aspect of your life.

And yeah, really stoked ILX is a place this kind of thread can exist without shitheads.

aimless, does your webmail work?

I have nothing but silent awe and the deepest respect for parents of severely disabled children.

Trayce otm x10000000000000000000000000000000000 here.

I should perhaps be clearer that all her living expenses are paid for. The trick is establishing that each expense is required, according to strict criteria. Once the criteria are met the first time, subsequent times are somewhat easier.

For example, suppose she needs a new wheelchair. She must be examined by a physical therapist, who writes a report stating that each feature of the proposed chair corresponds to a particular need. The jargon is important here. Her physician must sign off on this report, too. If it has been less than five years since her last new wheelchair was delivered, then the request is automatically denied.

If her old chair is old enough, and all the other criteria have been met, the request sits on a desk somewhere for a couple of months waiting for approval. Any deviation from the accepted jargon or formulas will result in the request being returned for clarification.

As soon as the expenditure has been approved, the wheelchair company springs into inaction. They've received the order, so their money is as good as made. We have waited as long as a year for an order to be filled.

Then, when the chair arrives the PT returns to "fit" the chair and adjust it. At this point the odds are 50-50 the chair won't really fit, or it digs into her somewhere, or the harness chokes her, or some other huge defect that needs rectification.

Anyway, you get the idea. All her needs are paid for, but in the same way that splitting firewood "warms you twice", her needs are sometimes paid for on one side with money -- and on the other side with sweat, aggravation, chunks of time, and lots of effort.

My webmail probably is directed to my old, expired useless email addy. A quick look at my Preferences page didn't reveal the secret to updating this to my new address.

When I was 19, I worked for a year or so at a group home, helping out a bunch of nice young adults and teenagers who were probably in similar situations to your daughter. It was a really rewarding job, but also really draining. I always noticed you were an especially nice & sensitive (and well-informed) person regarding DD people. I thought, this man must be the world's nicest bus driver. I had no idea it came from this kind of firsthand experience. That is one though row to hoe, Aimless, and I have endless respect.

Sorry for using "nice" 3x. Niceness is really important to me though!

Also, I meant to add: I am really glad to hear your daughter is doing well, given the circumstances.

thanks for this thread, aimless. it sounds like it's been a long road, and i respect your dedication and your perspective. this especially struck home with me:

In sum, she's just my daughter, not a collection of diagnoses, and she's a very fine person overall.

my older son has had a lot of issues, not in any way comparable to your daughter's, but still enough to be a source of a lot of struggle for everyone. he's just started kindergarten and will be getting a lot of special-ed services, which i hope will help him. his only label right now is "developmentally delayed" -- a lot of it is speech and communication issues, but there are some emotional and social things too -- and while he's always seemed plenty smart (he's learning to read, is good with numbers, etc), it's still not clear to anyone really what the implications of his various obstacles are. (he was born three months premature, which is almost certainly the underlying cause of most of these things.) people often ask me what his diagnosis is, and all i can really say is, "he's complicated and kind of weird." but he is also just himself. it's not like there's some "him" that's separate from all of those things, those things are just part of who he is and how he relates to the world. and he's a beautiful, caring, playful kid who makes friends easily and is disarmingly affectionate. (the somewhat stuffy church school he was at over the summer suggested that we encourage him to shake hands instead of hug, because the hugs made some of the older boys uncomfortable. i thought that was a sad lesson to teach a kid.) but so anyway, i know what you mean about someone, anyone, being much more than a list of syndromes or conditions. and when things have been hard for us sometimes, i have often thought about how much harder they could be and they are for a lot of people. so i really admire how it sounds like you and your wife have dealt with everything over the years. and i'm sorry it's been difficult, because i'm sure it often has.

It has been my experience that raising our daughter has involved all the normal issues that every parent deals with. They are exactly the same in terms of categories, with the difference being the level of intensity associated with them.

For example, children fall down and can injure themselves. Our daughter can fall out of her wheelchair if her harness and seat belt are improperly fastened. It's just that she can't pick herself up, dust herself off and run off to play.

Children leave home. So did our daughter. But she was 8 years old and 100% vulnerable to the world.

I'm sure it has been similar with your son, tipsy. It is just like any other parenting, but raised to higher pitch, written in bigger typeface, with bigger stakes. You can't help but feel more tension, more urgency, more fear, more relief. But it is still just parenting.

I grew up with a DD girl who was my age, and managed to befriend another in high school. I'm so full of, well, love...for you sharing your story, and just for you and your wife being great parents. DD parents...from what I knew as a kid, they're like 'normal' parents with the knob turned to eleven...and it's one of the greatest things to me. I'm still tearing up a bit here, sorry for being gushy but you're doing great things, even though you are 'just' doing what your heart tells you. I bow down.

I am vain enough to take pride in how my wife and I have managed our family, despite a few mistakes that make my stomach drop a foot whenever I think about them. So I will accept in good kind the many nice things so many of you have said. Thank you all.

Tommorrow morning I will be leaving for my last camping trip of the summer and won't return for several days. I'll reactivate this thread once more when I get back, in case any one feels like chatting further. Anything you write here, know that I will read it and respond, if you wish me to.

thank you for starting this courageous and inspiring thread about your daughter. dealing with my son's learning disability (asperger's syndrome) has been the defining feature of my life for more than a decade now and reading about your family's experience has given me new perspective on every level. (and also rendered me speechless.) you always seemed like a wise (and humble) man, Aimless, now I know why. again thanks and have a great time in the woods.

I assume Aimless is going to his beloved Wallowa mountains on his annual trip and I wish him a lovely, long walk.

^ cosign

Yes, I hope he is enjoying himself.

I remember him showing up years ago on the Father's Day thread and saying something about feeling overlooked because he was not mentioned, which left me a little puzzled at the time and now makes me feel.. er, speechless, like so many others. But let me give give way to the rare cuddlestein impulse and say that this is the kind of thread that makes it worth sticking it here over the long haul despite it all, as Brinsley Schwarz said.

This puts some o the points where we've butted heads into perspective. Thank you for sharing your story.

Yer welcome.

I'm not sure whether this thread has run its course or not, but I am back in a position to respond to anything anyone wants to say or to ask.

btw, I was not in the Wallowas, but I enjoyed myself very much camping with my older brother and one of my older sisters, along with my brother's two dogs. I appreciate the kind thoughts.

Aimless, thanks for this thread, and for "Nothing in all this is foreign to your heart." <3 to you and your family.

We <3 Aimless.

I was in the supermarket this morning and saw a Larabar, remembering that Aimless recommended them yesterday. And goddamn if he wasn't right, they are great.

Best to you and your family, again. I hadn't seen this thread until now. Sorry to have to revive it for such paltry antics.

since you linked, Aimless - I'd like to bump to ask how your daughter is doing?

Within the limits of what is possible, she is doing very well. The people who care for her at her group home are a very good group of people and the plan of care we've set up for her is well-conceived and well-executed.

As luck would have it, I am minutes from leaving on a long weekend with my siblings and I won't be able to respond to any further questions this thread might prompt. I'll check when I return, in case.

Hi Aimless: I'm an RN who has recently starting caring for a severely disabled kiddo in her home a few days a week. It's helpful for me, as a medical professional, to return to this post from time to time. Just sayin'.

I genuinely wish all the best for your daughter and family and you Aimless. I have an ill wife and a 11 year old son with autism/onset tourettes who are both dependent on me and I have had to give up work to be a full time carer. I am not trying to say I know how tough your daily routine is I am just trying to convey the high level of respect I have for you after reading your posts on this thread as a carer myself.

how's she doing

Prepare for TMI.

She's now 32 years old. In the past two years her overall health has deteriorated a fair amount. In October 2018 the top of her right femur was surgically removed to relieve pain from a congenitally damaged hip joint. Her spinal scoliosis has progressed from moderate to severe. In January of 2019 she almost died of sepsis and spent nine days in hospital (three in ICU). She now has a permanent tube inserted into her bladder to drain it to a bag. She's lost a lot of weight and now weighs about 82 lbs. Her wrists are like sticks.

Since the start of 2020 her physical health has stabilized to some extent. Her seizures have mostly abated a bit. She sleeps most nights. Her pain level appears mostly low if she isn't in her wheelchair for too many hours a day.

That's a decent summary of her physical health atm. Her mental health is hard to gauge. The pandemic has upended her routines. Her community outings stopped, our visits stopped, then restarted again, but only if we see her outdoors with masks and physical distancing so we aren't allowed to hug her, kiss her or hold her hand. We can't enter the group home, or lie down all together any more. She hates that.

A housemate she shared her group home with for a dozen years died in late April. Our daughter cried a lot the day it happened and her intermittent vomiting problem have been noticeably worse since then. Her care staff must all wear masks now and keep the requisite six feet of social distance from one another while working.

When we see her lately she is mostly unhappy, a bit angry, never contented or at peace.

We tell her this pandemic will end some day. I don't think it comforts her. I try not to lie to or mislead her ever about anything, but I try not to make her carry the weight of my own sadness about how her life is now. We all just plug away and do as much as we can to bear it. Frankly, it sucks, but it is better than some of the possible alternatives.

You carry a heavy burden of care and deserve great respect, Aimless. I hope your daughter finds some comfort and that life becomes more amenable for her when things ease.

Losing that time of lying down together & the loss of physical touch must be so hard on all of you, it sounds like a terrible kind of punishment

Strength & love to the three of you to manage such a difficult time, for what it is worth.

Her continued deterioration until her body becomes no longer viable is a given, as it is for all of us. When I look only at her physical deficits, her body is already comparable to many an old person nearing end-of-life. But it isn't at all the same thing. Her comparative youth and her lifelong skills at coping with her myriad limits gives her a strength beyond what any aged person with a similarly damaged body could muster. She is not ready to check out, yet, but at the same time there's no reason to hope her physical health will ever improve. It will temporarily plateau or it will take a further step for the worse, on a timetable no one can predict.

What we all yearn for most is a resumption of physical closeness and the profound emotional comfort that gives all three of us. All I can do now is talk to her through a mask. It's something like 10% of what we want and need.

It's hard for me to conceive the resilience you manage to summon. I mean I know we all just have to keep going, because what are the options...but what a mounatin to climb. It's immensely admirable.

<3 Aimless

Aimless, you’re a great dad and and I appreciate you sharing and hope the bear for family <3

best not bear

def not bear

an appropriately socially distanced bear might be acceptable. we could wave at one another.

lol

Starting on October 15th our daughter went successively to the ER, then the ICU for three days, then a hospital room until her release back to her group home on November 1st as a hospice patient awaiting the end of her life. She now is fairly comfortable, but only after five days of adjusting her meds. It is unclear just how many days away her death will be, but seeing her mostly at peace after roughly three weeks of often severe physical distress is a small miracle.

There's very little she needs me for now, except just showing up and keeping her company as she fades away. The emotions involved are incredibly complex, but I know this is what she wanted from me, and that my wife and I were the only people on earth who could help steer her through all this turmoil to safe harbor, back at home and a peaceful death. We'll be leaving soon to go sit with her. Tomorrow is my 68th birthday.

At some point in the next days or weeks I'll try to fill in a bit more about our (here comes that word) journey. It's been exhausting, but it is finally possible to draw breath again. I'm not posting this here to elicit well-wishes and sympathy from all of you. I know those will be a given because you are all good people. I'll post more later, if only to satisfy my need to tell our story, and because someone else may find some benefit in it, whether it is strength or solace.

May all be peaceful for everyone. Until then.

oh aimless <3 <3 <3

I don’t think I’ve ever seen or read this thread before. This is terrible, but I hope for peace for you all, and I really don’t know what else to say.

I wish you and your family whatever it is you need at this time.

This is terrible news, but we are all here for you. Which itself may be more terrible news, but we will still try to do our best!

Sorry; best to you and your daughter.

Aimless, i'm so sorry, and i'm thinking of you and your family. for all the love and care and generosity you've shown for so long, i hope you can find an equal measure to support you in the time ahead. when it's time, please know that we're here to listen to whatever you would like to share, and to root for you. <3

oh no, Aimless. I'm so very sorry :(

I knew some details about your daughter from what you've said, and about your care for her, and it all sounds overwhelming

I'm glad you're able to be with your daughter through all this. Keeping you all in my thoughts.

Your generosity and humility are marvels. Hugs.

sincerely sorry to hear this aimless. hope the coming days bring everyone some peace.

I know there’s not much that can be said at this time but just — the love & care & devotion expressed within your family over the years of her life is so beautiful to me & maybe this is corny to say but the bond you all have together will remain always & most likely outlast us all, i hope that one day there may be comfort in that for you.

^^

Thirded.

VG said it well, cosigned.

Fourthed.

Fifthed

the bond you all have together will remain always & most likely outlast us all, i hope that one day there may be comfort in that for you.

thx vg. it is almost impossible to convey to anyone outside our little tightly knit nuclear family unit just how strong our bonds of love and trust have become over these many decades. I am constantly humbled by the vast quantities of trust our daughter places in me. I infer from its existence that this must be because I have in some way earned it, but the reality of it feels so outsized that I could not possibly have earned that much trust from anyone. It makes me cry a bit just to say that.

Damn dude, that's super heavy ... my condolences, and happy birthday :/

aimless this is all so hard and so sad, and hard and sad for so long

thinking of you and your family and hoping that good things can also come out of the days ahead xx

I've been on ILX for a long old time but am sad to say I have never seen this thread before.

My best to you and your family Aimless.

love and strength to you and your family, Aimless

like us all here I wish you peace and healing

Thinking of you and your family today Aimless

Much love to you and your family, Aimless.

all the best, Aimless <3

love to your family, Aimless, and to you.

Love and deep respect to you and your family, Aimless.

Aimless, despite having an inkling of what you carried from things you've said elsewhere, I'll add my name to those that have never seen this thread before; and, having been humbled and moved by reading it, my name to those who are wishing you the best. Peace, love and fortitude to you all.

Aimless, I hope that the love and care you have given your daughter, and the trust you have received from her in return, will prove to be a comfort for you and your family both now and in the future.

Happy birthday, and much love to you and your family Aimless!

much love, aimless, and wishing your beloved daughter a peaceful transition, safe in the love of her wonderful parents and carers.

Very sorry for you Aimless. Wishing you and your family well-earned peace.

For those who have tracked this thread, thank you for all the good wishes. Our daughter died last night at about 10:30 pm, after 18 days in the hospital and 10 days at home on hospice. As much as such a thing is possible, she was made comfortable and we were with her until a few hours before she drew her final breath. She knew we were there and our presence helped her as the end grew near, but like so many others, she needed to spend her last hour without the pull and distraction of loved ones around her.

I'm not sure when I will be able to write about this any further. The past four weeks have been so full of events and emotions that it currently feels impossible to condense them into a form others could read and absorb. I will, of course, open this and read what anyone cares to say, but apart from the deep sadness of knowing I won't be able to hold her hand and see her face any more, I am strong in my belief that this was the best available outcome once her body began to fail on a scale that did not permit any kind of acceptable extension of her life. At least my sadness isn't mixed with regret. That much is a great blessing.

I'm so sorry for your loss, Aimless.

My condolences to you and family, Aimless.

I am so sorry, Aimless.

i’m so sorry aimless. deepest condolences <3

Very sad to read this Aimless, wishing you peace and strength.

My condolences, Aimless.

Feeling you, Aimless. Very sorry for your loss.

My condolences as well.

Much love and hugs, Aimless, I am so sorry. ❤️

So sorry for your loss, Aimless.

So very sad to read this, Aimless.

So sorry for your loss, Aimless. All the very best to you.

I'm so, so sorry. I've only just seen this thread. Wishing you peace and love.

Sorry to hear this, but you and your wife did all you could.

Deepest condolences. I know you were both always there for her.

Peace to you and your family, Aimless.

Deeply sorry to read this, Aimless. Everything you've written in this thread evokes the incredible depth of your love as a father, and everything you did over your daughter's lifetime to hear her, know her, and give her the best life possible. I wish peace for you and your wife, though it may come slowly and by strange paths.

Extraordinary strength and the deepest care, what a beautiful, lifelong gift to your daughter. I hope you can rest and that healing brings peace.

My condolences, Aimless, and best wishes going through the grieving process. Sounds like you're facing it with enormous strength and courage—be kind to yourself

Very sorry for your loss Aimless, condolences to you and your family

I’m so sorry Aimless.

Hi Aimless, best of all possible wishes to you.

I don't remember how much I have said here - nothing like your very comprehensive orig post - but I also have a severely disabled child. He is 11 now, and will never be able to live on his own. He can kind of communicate, and kind of function, in a structured setting, but he has nothing like a normal future ahead of him.

My current hope is to emulate your level of dignity and courage. Peace to you and your family.

i'm so sorry to read this aimless, my best to you and your family

It sounds like it has been really hard for you, I can't even imagine

All I can think of to say is, when my mother died of Alzheimer's after 10 years in care, it was difficult to process, and for a while all I could picture was the end of her life ... but after a time I stopped remembering her as she was at the end and started remembering my earlier life with her, how good she was and how much I loved her.

aimless, my sincerest condolences to you, your partner, the rest of your family, and your daughter's other caretakers. as a parent, i have so much admiration for you and your partner and so much empathy for all the things you both must be feeling now.

so sorry to hear this aimless, take care of yrselves <3 <3 <3

I'm very sorry for your loss, Aimless.

I'm so sorry, Aimless <3

Very sorry.

So sorry, Aimless. I can't imagine the amount of strength your journey has taken. Hope you and your family find peace.

i’m so sorry for your loss, aimless<3

Sorry to hear this, Aimless.

i am so sorry, Aimless, and please add my wishes for your rest and healing with all the others expressed here. you're a good dad and your girl was so fortunate to have you. <3

Aimless:

my recent posts directed at you had been cruel, petty, and unbecoming, and I really am sorry. I’m glad you are a part of this community I love so much and am grateful to have spent however many years with you as a co-denizen. I’m trying to be better! you are great, and thanks for being here with me

What you said here more than makes amends for those earlier posts. Thank you.

Pasts two posts: classic, not even an iota of dud