and everyone else :/
― jed_, Monday, 20 August 2012 23:36 (ten years ago) link
This took up took up over 10 years of my life (from 1994 - 2008 in fact). Both my parents got ill in their early to mid-seventies, and both had dementia and a pretty terrible end in a nursing home in their late seventies.
I spend most of this period visiting at weekends, and other times - and in that rather mad space where you seem cut off from the concerns of normal life, unable to relax for a minute, and living a kind of nightmare existence that no-one else around you realises. (Nothing like the horrific life of a full-time career - but bad enough).
The only thing you can say about it is that it passes, and you realise that what felt like an endless enduring period was in the end just another temporary era.
― Bob Six, Monday, 20 August 2012 23:43 (ten years ago) link
Siblings help -- if you're lucky.
― a regina spektor is haunting europe (Alfred, Lord Sotosyn), Monday, 20 August 2012 23:46 (ten years ago) link
I'm an only child. This is the only time I've ever wished I had siblings tbh.
Thanks, guys. Things are OK and we had a really nice evening. She's staying with me until she flys back to FL on Wed. Ian - alcoholism is a factor here too in addition to a lot of other things. I guess I just really feel for my dad and am really saddened by realizing that it's only going to get worse from here and I'm afraid it's going to do so pretty quickly.
― (✿◠‿◠) (ENBB), Tuesday, 21 August 2012 00:10 (ten years ago) link
I feel for you, ENBB. I'm an only child too; my mom's 84 this year but still drives, takes care of her own stuff, is still sharp as ever (dad died in 2000). But I dread so deeply the coming of the signs. I can't even model it in my mind. Hugs.
― Lewis Apparition (Jon Lewis), Tuesday, 21 August 2012 00:37 (ten years ago) link
my mom's 84 this year but still drives, takes care of her own stuff, is still sharp as ever
That's fantastic, good for her! Mine is 74 this year but she's an old 74 and hasn't driven in at least 5 years. Anyway, like I said, we had a lovely day today. It's just a really difficult process to watch and I worry about what will happen down the line.
― (✿◠‿◠) (ENBB), Tuesday, 21 August 2012 00:53 (ten years ago) link
pullin for you E - us only children gotta stick together. this terrifies me too - and is a big part of what motivates me to do what I do now - but hopefully there will be a good, long time before anything really happens.
― jack chick-fil-A (dayo), Tuesday, 21 August 2012 00:58 (ten years ago) link
You know you have my support as another only, but I'm too much of a weakling to talk about this stuffIn earnestIn publicBeyond this
But you know where to find me offboard if you wanna talk!!
― these albatrosses have no fear of man (La Lechera), Tuesday, 21 August 2012 01:57 (ten years ago) link
i will say that my mom is pretty damn sharp in mind, but whenever i visit, i insist on driving EVERYWHERE. her driving scares the bejesus out of me, don't understand how she hasn't had her license taken away. and it only gets worse as she gets older.
― for reasons of sass (the table is the table), Tuesday, 21 August 2012 05:28 (ten years ago) link
yeah driving is often the "tipping point" of aging parents decline. really hard to give up.
my heart goes out to enbb,la lechera, ian and everybody facing this. all my middle-aged friends have ailing/aging parents right now, you guys are confronting it early like i did. these days my father in law is essentially dying, i was going to post this on the fuck cancer thread but it fits here too. he's 84, until a couple years ago was robust mentally and physically, the picture of how you'd hope to age. so it's shocking to see his rapid decline not just bodily but he's become very confused and withdrawn, barely a shell of his former self. chemotherapy is keeping him alive but at what cost? we just had our annual visit and my wife, her mom (who's a rock) and her two siblings are stressed out and struggling. not much else to say. but it's good to talk about it, in fact it's important for your - our - own mental health to let it out.
― (REAL NAME) (m coleman), Tuesday, 21 August 2012 09:39 (ten years ago) link
My dad had the driving decision taken out of his hands as he went blind in one eye at the start of the year, but he was getting to be quite a dangerous driver before than (he's 80) so we're really quite glad about it.
― ailsa, Tuesday, 21 August 2012 09:54 (ten years ago) link
even though she knows she needs them, my mom refuses to get glasses because she thinks that they make her face look weirdshe lives in fear of having her driver's license taken away from her because she is a very independent person and likes her alone time:(
― these albatrosses have no fear of man (La Lechera), Tuesday, 21 August 2012 13:24 (ten years ago) link
My mother-in-law has had quite serious dementia for the past six years or so. This started when she was in her early-to-mid 60s - one of the first events that really got us thinking that something was up was when she drove her car the wrong way round a large roundabout into oncoming traffic. At the moment she lives in a nursing home as is pretty much just a shell of her former self - she doesn't even know who her children are any more when they come to visit, but thankfully she does still appreciate the company which at least is one small positive that you can take away. Totally depressing though, so for anyone out there who is dealing with this right now, I can totally sympathise.
― mod night at the oasis (NickB), Tuesday, 21 August 2012 13:35 (ten years ago) link
My mom, turning 80 next month, has been fighting the decline, bless her. Joined the hospital wellness center, has been selling and giving away decades' worth of my dad's accumulated packratcrap, still gets out there and mows her own lawn, etc. Next week she, my daughter and probably my wife are heading off to Biloxi to the casinos. But the decline is there...bad knees, bad feet, diabetes... My sympathies to everyone having a tough go of it these days.
― Romney's Kitchen Nightmares (WmC), Tuesday, 21 August 2012 13:45 (ten years ago) link
My mum (68) has been dealing with my gran (88) for a long time; my gran has alzheimers. About six months ago she finally got her moved to a nursing home in the same town (200 miles from where my gran was before). Only now is she at the point where she can see any humour in the situation, which results in Facebook messages like this from my mum:
Today's visit to your gran!G. (after a bit of mumbling and searching for words) Are you my daughter?Me. Yes.Gr. Are you really my daughter?Me. Yes.Gr. I can't remember. Am I your mother?Me. Yes.Gr. Where did we live?So I started giving her a potted history of our life.GR. How do you know you're my daughter?A bit later on....Gr, Haven't I got nice legs!She thought it was quite funny that she couldn't remember things; seemed very happy and settled. The staff bore this out.
G. (after a bit of mumbling and searching for words) Are you my daughter?
Gr. Are you really my daughter?
Gr. I can't remember. Am I your mother?
Gr. Where did we live?
So I started giving her a potted history of our life.
GR. How do you know you're my daughter?
A bit later on....
Gr, Haven't I got nice legs!
She thought it was quite funny that she couldn't remember things; seemed very happy and settled. The staff bore this out.
― Sick Mouthy (Scik Mouthy), Tuesday, 21 August 2012 14:11 (ten years ago) link
My mom and grandma live together with mom's "girlfriend", and I moved to be closer to them and my terminally ill Dad (they were separated). Grandma is sharp as a tack and well into her 90s. Of course I love Grandma, but mom is making seeing Grandma a miserable experience.
Like I said elsewhere she is getting into that old people thing of being passive-aggressive. I know I called her a "fascist" I didn't mean it, it's that her emotional state is kind of fascist.
It's her stupid family. She wasn't raised by her own mother, she was raised by her abusive and creepy grandmother and aunt and it really shows in how she deals with stuff like death and adult responsibilities.
If anything difficult happens in her life - death or whatever - she just escapes mentally. Her mom's family had a lot of money and stuff was handled for her all her life!! She doesn't understand why other people don't have it as easy. Because of her family, she feels she has a lot of power and I can't ever suspect her of having mental problems EVER.
― โตเกียวเหมียวเหมียว aka Debriefed by David (Mount Cleaners), Monday, 17 December 2012 18:34 (ten years ago) link
My mom gave up driving last month. Kinda shocked, but pleased that she came to the decision herself. She's 88 and is in reasonably good health for her age - despite the piles of crap that she's hoarded (ongoing issue for her entire life). Sister is gone for several weeks so I'm on mom duty... it's extra frustrating because her hearing is so bad that she leaves the televisions on with the sound maxed-out and she can't hear the phone.
Vexing problem of the moment... Her sense of time and calendar dates are slipping, so making plans becomes a comedy of errors ("stop by this week" *does so* "what are you doing here, I said to come by next week") ad infinitum ad nauseum
― Elvis Telecom, Monday, 1 July 2013 23:40 (nine years ago) link
wow, that sounds like a serious challenge. i'm sorry. i have this thread bookmarked and it popped up just as my parents arrived yesterday for their first visit in 3 years. they are aging. my mom is in great shape (in spite of some health issues this year) but my dad keeps looking and acting less like himself, which is thrown into stark relief when we look at old pictures together.
― free your spirit pig (La Lechera), Tuesday, 2 July 2013 14:15 (nine years ago) link
I am going to visit my parents this weekend and I think that I'm actually going to have to ask them point blank what they want me to do for them if they ever get dementia or need care etc. My mom is in bad shape and her memory is already slipping and my biggest fear is that my dad dies first (though this is prob unlikely you never know) and I'm left to make decisions for/about her. I want to know now and while I know she's not going to want to talk about this I'm going to make them because I'm an only child and they have no other relatives here to help and I can't handle the stress and weight of this alone without knowing what they want.
― Airwrecka Bliptrap Blapmantis (ENBB), Tuesday, 2 July 2013 14:19 (nine years ago) link
Just to share my own personal woes on this thread --
My father nearly died last week; he collapsed on his way to the bathroom in the middle of the night. The ambulance came and got him to a hospital and it turned out he had two massive ulcers in his stomach and large intestine. This comes about 6 weeks after a surgery to biopsy a growth in his spinal cord.
Yesterday morning, recovering from the emergency surgery to stitch up the ulcers, he had a major heart attack and is in the hospital with a breathing tube, heavily sedated etc. On our way up to Rhode Island yesterday our van broke down on the Triboro Bridge -- shocks gave out and started to rub against the front tires, causing lots of burnt rubber smoke. We got it towed back to your neighborhood (luckily we weren't halfway through connecticut) and it's going to be repaired this afternoon, $800 later. I'm incredibly worried about my dad. The doctors are not sure how to treat him; they can't give him the usual blood thinners and medications because of the ulcers and recent surgery. I wish so badly I was there. And now I'm worried about the drive up, even though the car is getting fixed, I have a strong distrust of automobiles... Just don't know what to do. It's bad when my aunt is telling me to go straight to the hospital and bring his 'paperwork' (read: living will.)
So scared :\
― i guess i'd just rather listen to canned heat? (ian), Tuesday, 2 July 2013 17:06 (nine years ago) link
I'm sorry to hear all of that.
― Tottenham Heelspur (in orbit), Tuesday, 2 July 2013 17:37 (nine years ago) link
me too. suerte, ian.
― free your spirit pig (La Lechera), Tuesday, 2 July 2013 18:41 (nine years ago) link
Oh, Ian. I'm sorry.
― Airwrecka Bliptrap Blapmantis (ENBB), Tuesday, 2 July 2013 18:51 (nine years ago) link
Aw man... Hoping for the best
― Elvis Telecom, Tuesday, 2 July 2013 23:26 (nine years ago) link
the latest news is that he's off the respirator and able to talk a bit, though he is very disoriented and doesn't know where he is... so that's great news. the doctor was surprised at how much he's improved since last night when things were a bit more up in the air.
our car didn't get repaired until after 5:30, and not wanting to drive in rush hour, we are going up tomorrow morning.. thanks everyone for your kindness.
― i guess i'd just rather listen to canned heat? (ian), Tuesday, 2 July 2013 23:34 (nine years ago) link
Safe travel, sweetie.
― Tottenham Heelspur (in orbit), Wednesday, 3 July 2013 03:53 (nine years ago) link
Urgh ENBB, reading your posts here and on other threads - I have the feeling that we're on the same boat. I'm an only child, living 4 hours away from my parents, with my father at a very advanced stage of Parkinson's and my mother seriously diminished by years of alcoholism (with late-blooming epilepsy added to the mix). My dad has been the justification for getting home-help but in my mind the caretaker's role is also to watch over my mom and alert me when things get real bad. I've been freaking out for the last two years at what will happen if/when my dad passes away and I cannot justify to my mom keeping a caretaker at home.
that rather mad space where you seem cut off from the concerns of normal life, unable to relax for a minute, and living a kind of nightmare existence that no-one else around you realises.
― licorice oratorio (baaderonixx), Wednesday, 3 July 2013 07:54 (nine years ago) link
There is a fine line between being a responsible child of an aging parent and being a child who feels responsible for his aging parents in the same way a parent is responsible for their child. If you feel like a disaster of some sort is perpetually imminent in your parents' lives, then they need both more and less from you than your being on perpetual panicky standby.
Hovering nearby in anxiety just exhausts you and accomplishes very little. They need your assistance to form a plan to get more help in their daily lives. If they refuse this assistance, either you must honor that refusal and trust them to steer themselves, or if they have become legally incompetant to be responsible for themselves, then you must bite the bullet and seek the authority of a conservator or guardian, so at least you can move them away from the brink or perpetual disaster.
I know this x1000 times easier to say than to do. I just would like to plant the seed of this thought so you can consider it.
― Aimless, Wednesday, 3 July 2013 18:14 (nine years ago) link
Yeah you're totally right. Knowing deep down that this endless anxiety has zero value to them is one of the most frustrating parts. I basically feel I'm on the border between the two scenarios you describe - ie. my mother is too lucid/young/healthy to be completely assisted or put in a home or under my legal guard - and yet alcoholism makes her accident prone and unable to care for my dad and her household. They've got several hours of help every day but even that is starting to seem not enough.I know that I should stop aimlessly panicking and start making concrete plans but my general response to the anxiety is to try as hard as I can to put in my head in the sand and try no to think about it. So yeah, obviously not a winning strategy
― licorice oratorio (baaderonixx), Wednesday, 3 July 2013 19:05 (nine years ago) link
Alcoholism really complicates that picture. You have a damned tough row to hoe. But you can't realistically save people from themselves.
― Aimless, Wednesday, 3 July 2013 19:09 (nine years ago) link
baaderonixx - Yeah, it does sound similar although thankfully my dad is still in pretty good health but you never know and that's what scares me. I've tried to talk to them about it before but my mom flat out refuses to do so because she likes to ignore her mortality but that's just fucking selfish and I'm sick of worrying about this so I'm going to bring it up when I'm down there next weekend. He is her caretaker right now and I just have no idea what I'd do if something happened to him. I'm sure as hell not moving to Florida that's for sure.
"The last two-three years of my life have been a long panic attack basically, always concerned what may be happening at my parent's house at any given minute, always refusing to relax or to go on trips because I always feel like i'm on standby mode and might need to rush to my parent's home at any time."
If my dad weren't around and in good shape I'm sure this would be me too. That said, if my phone ever rings and I see it's them calling at a time I'm not expecting I go into extreme panic mode. Also, Christmas this year was so awful that I wound up extending my visit to go with my mom to the dr to see about her meds/drinking but sadly, it didn't really do much. At least I felt better for trying.
Oh baad, I'm sorry you're dealing with this. It's really stressful and yours sounds like a particularly tough situation right now.
― Airwrecka Bliptrap Blapmantis (ENBB), Thursday, 4 July 2013 02:00 (nine years ago) link
geez ian, hang in there man.
― call all destroyer, Thursday, 4 July 2013 02:02 (nine years ago) link
I'm spending my Christmas break cleaning out my mother's hoarder house. She's 89 and after being very active for most of her life, her body has quit out on her and she's depressed, but meeting it with competing levels of rage and denial. She's flat-out refused all help for years and can be quite alienating about it. Her balance is very unsteady, but she can't use a walker in the house because there's too much trash. My sister brings her food, but she won't let anyone in the house. Hoarding has been an issue in her entire life - it's the reason why my parents broke up. When given the choice between her house full of newspapers and unopened mail or her family, she chose the pile. Now there are consequences.
Ten days ago she began (lust like the commercial) falling down and not getting up. She knows she can't call 911 because emergency services will report just how much of a fire hazard things are in there. Each fall has been progressively worse... The next day, my sister found her fallen over on a pile of unopened magazine. Apparently she had been there overnight without any clothes on and had, well, vacated herself on top of things. The day after that, she fell again and became hypothermic. So after a stay in the hospital and time away from the horrifying conditions in her house she's in outpatient assisted living and impatiently wanting to go home. Only she can't, because it's a shambles. About the only plus side to having to having to Make A Decision about assisted living/nursing homes during Christmas break is that there are so many of them in Orange County.
So we're finally cleaning the house. Desperately want to rant about the weird shit I'm finding, but I don't anything ending up on Reddit right now. The photos I took of the "high water mark" before we began emptying things out have been powerfully radioactive. I think my aunt had a nervous breakdown and I haven't heard back from the last person I sent them too.
his Christmas I've broken out of my current state of "existential depression fortified by all-new economic anxiety" has been interrupted by
― Elvis Telecom, Tuesday, 24 December 2013 05:23 (nine years ago) link
― mookieproof, Tuesday, 24 December 2013 05:26 (nine years ago) link
oops... meant to finish with
"At least this Christmas I've broken out of my current state of "existential depression fortified by all-new economic anxiety" with this."
― Elvis Telecom, Tuesday, 24 December 2013 05:31 (nine years ago) link
ugh, i'm sorry, that must be really stressful. :-/
― Karl Malone, Tuesday, 24 December 2013 06:14 (nine years ago) link
oh wow C that's so awful. I hope you get thru it with plenty of support.
― the Bronski Review (Trayce), Tuesday, 24 December 2013 06:53 (nine years ago) link
Aw, jeez, I'm so sorry you're dealing with this right now. Well, at all, really. Hope that she is able to get the help she requires, and that you are able to cope with it all.
― Branwell Bell, Tuesday, 24 December 2013 10:47 (nine years ago) link
My sister and I went on a whirlwind tour of four different assisted living places yesterday. The outpatient place where my mom is put us in touch with a woman who works as a real estate agent for (what the preferred term is) assisted living facilities. Whatever stereotypes you're imagining after reading that describes the day. If I was a douchey indie film screenwriter, a repeating theme would be:
ASSISTED LIVING FACILITY AGENT has programmed the addresses of dozens of facilities in the satellite navigation system of her Mercedes SUV and scrolls through them with the expertise of a veteran video gamer.
Oddly enough the one we went with is the one that felt most like a well appointed desert Indian casino. Guess that's what the Greatest Generation goes for now. The facilities were all new and the staff simply seemed like they gave a shit about the residents. Blurted out "it looks just like The Village from The Prisoner" several times during the day.
― Elvis Telecom, Saturday, 28 December 2013 12:31 (nine years ago) link
I know what you mean - we went through a similar search three years ago, right before the holidays, for Mr. Jaq's mom. If there had been a more casino themed one available, it would have been a perfect fit. As it is now, he takes her out every other Sunday to one. She was just moved into the "memory care" unit though, and has trouble remembering how the slot machines work. It's a challenging time, and my thoughts are with you.
― Jaq, Sunday, 29 December 2013 23:15 (nine years ago) link
I'm so sorry man, that's so rough. It's such a hard decision to make. I foresee that we'll be facing similar tough decisions in the coming year/s with my father in law as his dementia worsens. There's a small, quiet part of me that hopes that he shuffles off before such a decision has to be made.
It's so hard to bear witness to that level of helplessness...I really sympathize.
― set the controls for the heart of the sun (VegemiteGrrl), Sunday, 29 December 2013 23:30 (nine years ago) link
So last weekend, my mother unplugged the monitor and tried to use the bathroom by herself (this is still at the first outpatient place). She fell and hurt her back pretty badly, so assisted living is now completely out of the question. Go directly to Memory Care, do not pass Go, etc. The doctor's report gets directly to the point... "dementia, memory loss, wandering & fall risk." I drove her to the new facility on Monday in her own car, but she couldn't recognize it and kept forgetting after I reminded her. Since then she has been just horrible to the staff who have been nothing but patient. I got a message this morning that she had been screaming so loudly at everyone that she developed chest pains and had to be readmitted back to the hospital.
I had been thinking to myself "ok, maybe after 90 days (a totally arbitrary number) things will become predicable again." Now I'm not sure at all.
Thanks for all the kind words. Need to unload somewhere and it might as well be here.
― Elvis Telecom, Saturday, 4 January 2014 22:41 (nine years ago) link
In the meantime, I'm dealing with two floors of this.
The front door to the house is back there somewhere. I bought a giant 150 count box of 13 gallon trash bags at Home Depot and have filled half of them (75 - I counted) with unopened mail, magazines, and newspapers. That's just from the living room.
I think I'm now an expert in dealing with aging parent hoarders - feel free to ask questions!
― Elvis Telecom, Saturday, 4 January 2014 22:46 (nine years ago) link
Oh, ET, I am so sorry it's going down this way. Just wishing you strength to cope with it!
― Branwell Bell, Saturday, 4 January 2014 22:58 (nine years ago) link
(feeling kinda guilty tho coz that room is really only a year or so away from my living room. Eep!)
― Branwell Bell, Saturday, 4 January 2014 22:59 (nine years ago) link
oh jesus. sorry elvis and best to u
― mookieproof, Saturday, 4 January 2014 23:30 (nine years ago) link
Damn. Sending best.
― Ned Raggett, Saturday, 4 January 2014 23:36 (nine years ago) link
et, you will get through, i'm so sorry to hear of the circumstances. stay strong. don't forget to take care of yourself.
― Hunt3r, Saturday, 4 January 2014 23:47 (nine years ago) link
Oh Elvis. I'm so sorry.
― set the controls for the heart of the sun (VegemiteGrrl), Sunday, 5 January 2014 00:08 (nine years ago) link
This is the tough stuff of life, sorry you are going through it.
― eclectic husbandry (Dr Morbius), Sunday, 5 January 2014 00:33 (nine years ago) link
My mother had dementia. For a while it was kind of fun to try to help her complete her sentences when she was still cheerful. A friend of mine had described this kind of interaction to me many years ago. She stayed cheerful for a long time as her vocabulary kept shrinking until she only knew a few choice words. At the very end she couldn’t talk at all, seemed generally fearful, didn’t recognize me or my kids and didn’t seem to know who anyone was except maybe my father and would get very disturbed if he left her alone for too long. All this kind of stuff didn’t bother me that much at the time as if my extra Vulcan eyelid protected me somehow. Plus my sister was the one dealing with most of it. Of course there was plenty of stuff to sort out during the subsequent grieving process. A friend of mine lost his mother recently and I told him that I experienced the aftermath as some sort of rolling blackout, where sometimes I didn’t know what was ailing me and had no way to articulate it, but it felt like something was happening way down inside in some subterranean river that I had no way to access directly. I am a bit surprised I am typing about it now, maybe it’s because it’s pretty much eleven months ago as of this month.
― The Original Human Beat Surrender (James Redd and the Blecchs), Friday, 2 June 2023 00:19 (one week ago) link
That made me choke up. Thanks for sharing, JRB.
I am really, really hoping that my soon-to-be-80-year-old mother does not go through this. There is no family history, as far as I know. I am pretty convinced that she'll just go until her motor winds down completely, from one day to the next. With any luck (for her), she'll go in her sleep or on the golf course.
― immodesty blaise (jimbeaux), Friday, 2 June 2023 00:25 (one week ago) link
my mom will turn 80 in august. until four months ago, the big problem was 'how can i get her out of her house'? fortunately (honestly) she had a crisis in february and is now in a home that offers memory care
needless to say, she hasn't really paid any bills recently, so that's a struggle. she does at least (presumably) have the money to do so.
sometimes she's a bit sad that she's not ever going to go back to her house, but honestly she's been so friendly to the people who take care of her, and so loving to me, who is not dealing with all this particularly well, that it makes me cry.
for the last year or so she (who has multiple masters degrees) has just been reading harry potter again and again. she'll say that she's read them before, but that it was a long time ago. i went to some lengths to put like a hundred similar books on her kindle -- narnia, the dark is rising, whatever -- but inevitably they've 'disappeared' and she cannot find them.
i haven't read them, but i guess there are worse worlds to get stuck in than harry potter? certainly there's quite a lot of it.
anyway yeah, it's bad. and i feel like i'm failing her
― mookieproof, Friday, 2 June 2023 01:33 (one week ago) link
I don't know if it's appropriate but my workplace offers a free online course in understanding dementia - it's aimed at anyone interested, but particularly people who care for folks who have dementia. There's helpful knowledge about care and causes, etc., and it also offers a sense of community which can be a huge deal for people feeling isolated. Something like half a million people have done it and it's very highly regarded. It's offered a few times a year and the next run begins in July:https://mooc.utas.edu.au/course/33
― assert (matttkkkk), Friday, 2 June 2023 01:55 (one week ago) link
Dementia is the worst. I really don't want my son to go through this with me, I fear that a lot more than death, in fact I'd welcome death rather than years of dementia. My Dad had a very slow decline into dementia that went on for about a dozen years before he finally died a couple of years ago. It was hellish to watch. He too was an academic and a professor of medicine and to watch his mental abilities just fall away like that was beyond sad - my Mum refusing to acknowledge what was happening didn't help either. It was probably a lot worse for us than for him though. He never had insight into what was happening to him, and while there was an early period when he was clearly confused and anxious, once dementia took fully hold, he was fairly serene and placid with it. Not the case with all dementia patients I know - when I visited Dad at his residential care, there were a lot of very troubled and even violent dementia patients there. Anyway, fuck dementia, and my sympathies for everyone going through it with their loved ones.
― Zelda Zonk, Friday, 2 June 2023 02:01 (one week ago) link
Dementia is one of my biggest fears; it's right at the top of my "reasons to pull the rip cord without hesitation" list.
― but also fuck you (unperson), Friday, 2 June 2023 03:24 (one week ago) link
i feel like i'm failing her
This killed me. I can completely identify with this feeling, and I am completely confident that you are not failing her. Her illness is not your fault, and it sounds as though you are there for her, which is all any of us can really do.
― immodesty blaise (jimbeaux), Friday, 2 June 2023 03:28 (one week ago) link
my mom died last month, we did home hospice as I hinted at above, I'm not sure at what point I'll be able to completely process what that experience was like. suffice it to say I swore to my wife and child that I would never do that to them.
― I? not I! He! He! HIM! (akm), Friday, 2 June 2023 03:31 (one week ago) link
I'm so sorry for your loss.
― immodesty blaise (jimbeaux), Friday, 2 June 2023 03:32 (one week ago) link
xps one thing you might get from the online course is insight to the way people live good lives with dementia - you can't avoid the effects or progression of most of the diseases which cause it, but there are ways to live and interact which maximise the good things and work around the bad. I'm no Pollyanna, and dementia is a fucker in general, but there is a lot of stigma and fear around it which is often very isolating for the people who have it, and for their families and carers. People shy away, stop coming around, break contact - and that can have an even greater effect on quality of life than the disease does.Not trying to preach, just to say there's likely more to it than you've previously encountered or heard about.
― assert (matttkkkk), Friday, 2 June 2023 04:31 (one week ago) link
for anybody who struggles w/ the feeling of falling short w/ your ailing parents, which I very much empathize with, my mother kinda hit it on the head the other day after I apologized to dad for the umpteenth time when he moaned in pain when I was lifting him.
she pointed out the pain is going to be there no matter what we do, we ourselves can't make it go away, but that we should go easy on ourselves because we are doing our best. and especially for those itt who have made numerous life sacrifices to do it - you're giving everything you have to your parent. they might not be able to appreciate it, communicate it or comprehend it. but you're doing an incredible thing.
you'll screw up sometimes. you'll lose patience. and sometimes you'll not be able to stop yourself from feeling guilty - but it's good every now and then to remind yourself "I'm doing my best for the person I love" and just keep on loving them.
― the manwich horror (Neanderthal), Friday, 2 June 2023 13:32 (one week ago) link
I have no firsthand experience with dementia so I'll defer to the experts above but my heart goes out to everyone who has lived with or is currently living w/ a parent or loved one with dementia. it's one of life's cruelest hands.
― the manwich horror (Neanderthal), Friday, 2 June 2023 13:33 (one week ago) link
Back to the hospital for dad. He's been a changed man (and not in a good way) since he got back from Respite and it hasn't improved.
His legs and knees are still really stiff and he doesn't want to extend them. He became so dehydrated on Thursday that we had to get him an IV . They suspected a UTI but told us to call if he worsened and needed an antibiotic before the results came back.
Yesterday he developed a 101 fever and was disoriented, so we got the antibiotic script and let him rest. His fever seems to be going down but he's been somewhat catatonic, not reacting to those around him, not wanting to eat or drink on his own without help.
And then tonight he had the worst diarrhea he's ever had in history. Literally got everywhere, we spent 90 minutes cleaning him up.
His mobility completely changed in one mere week.
With all these concurrent worries, we want to see if we're missing something here.
If something turns up to indicate maltreatment at respite care on his diagnosis, I'm going to file a complaint. I am convinced he injured himself and they hid it. Especially given the way he was positioned when we picked him up.
Mom and I are ok though. Looking into palliative care and pending results of ER visit, we are applying for more hours for Medicaid - process already started.
― the manwich horror (Neanderthal), Sunday, 4 June 2023 23:06 (five days ago) link
At hospital. Took him to a different one this time. Took him to the one that successfully took out my mom's lung cancer.
― the manwich horror (Neanderthal), Monday, 5 June 2023 00:58 (four days ago) link
LOL DOCTOR SAID MY DAD'S PEE WAS HORRIFYING
― the manwich horror (Neanderthal), Monday, 5 June 2023 03:20 (four days ago) link
That's never good. Sorry you're going through all this, Neanderthal. Your devotion is pretty amazing.
― immodesty blaise (jimbeaux), Monday, 5 June 2023 12:51 (four days ago) link
he's better. I'm losing my voice. antibiotics zapped out my sinus infection but unfortunately the post nasal drip and residual congestion gutted my throat. it happens all the time...going to ENT to see about fixing my deviated septum.
can't wait for him to get food. we were just about to feed him dinner yesterday after getting him rehydrated when we realized he needed to be seen.
I am working overtime to fight the guilt. I keep making and breaking promises to him, not out of fault but first it was "as soon as respite care ends, you'll be back with us and we'll be having good times together again", so he comes home and he's miserable, so we take him to get an IV and "I"m sorry dad, I know this sucks, but once you get this you'll feel like yourself again", then fever/UTI and we get him an antibiotic and "sorry dad, but you'll feel as good as new after getting this antibiotic", and then now he's at the hospital and it's "we're sorry we brought you here, but you'll be good as new again". I know how it is coming across to him :(
worse, the rehab folk here suggested that we might be able to send him to a temp rehab facility and my dad looked shellshocked. we are not interessted in doing that at all (we've done it - it doesn't provide lasting benefits for a guy as beat up as dad at this point), but if we did that, he'd be devastated.
I am trying to work out of this hospital and had to cancel a meeting due to frequent interruptions. my mother is hours late to relieve me.
but I'm feeling good. i don't know how my brain works sometimes.
― the manwich horror (Neanderthal), Monday, 5 June 2023 16:50 (four days ago) link
just got a nosebleedmom can barely walk due to a strange knee malady that cropped up last week (I've begged her to use dad's cane temporarily as she's almost fallen a few times)none of us can really be at the hospital long tomorrow due to work or appointments. I'm trying to avoid missing more work due to this as I don't want to give my company an excuse to say I'm no longer able to do the job, but also...I'm supposed to get OT this week and need it (badly).
fun times. but we'll manage.
I WOULD teach from the hospital if there was anywhere I could work quietly and weren't any doctors to disturb me. I may even try it tomorrow and just go to the business area and come back up stairs at random times
― the manwich horror (Neanderthal), Monday, 5 June 2023 19:28 (four days ago) link
just got a nosebleedmom can barely walk due to a strange knee malady that cropped up last week (I've begged her to use dad's cane temporarily as she's almost fallen a few times)none of us can really be at the hospital long tomorrow due to work or appointments. I'm trying to avoid missing more work due to this as I don't want to give my company an excuse to say I'm no longer able to do the job, but also...I'm supposed to get OT this week and need it (badly).fun times. but we'll manage.I WOULD teach from the hospital if there was anywhere I could work quietly and weren't any doctors to disturb me. I may even try it tomorrow and just go to the business area and come back up stairs at random times
― BlackIronPrison, Monday, 5 June 2023 23:59 (four days ago) link
Speaking of falls, I recently came across foot specialist's advocacy of stability sneakers, said especially good with overpronation, where the foot turns inward, overdoing a natural attempt to maintain balance. Apparently they can be found in runner stores.
― dow, Tuesday, 6 June 2023 17:42 (three days ago) link
dad's UTI and constipation are gone. they recommended skilled nursing (the physical therapists). Aetna Medicare initially denied it because they said my dad is at his baseline and it won't help (he's not even remotely at his baseline, which is why we brought him the fuck in).
so...in an amazing coincidence, one of my good friends works in this hospital and got my dad's case. no idea she even worked here. she called and filled me in, and said they were going to do a peer to peer call to push through authorization. then today, called me angry saying the physician responsible for that call opted to miss it, disagreeing with the physical therapists and thinking there's no benefit. so she escalated.
so now I'm spending my Friday calling Aetna to file an expedited appeal while my dad sits in limbo over the weekend.
we're starting the convo about permanent long-term care for dad, though admittedly I don't think mom realizes how that would impact her financially. and also, lots of those facilities around here are shitholes. but the hospital said I'm going to kill myself physically if I keep doing total disability care for dad (I think that's dramatic - at the moment at least, the mental strain is much more than the physical, which is what they were talking about).
I'm not mad because I assume incompetence so I fully expected this fuck up today. I am however annoyed because I want to take a shower and I smell at the moment.
― the manwich horror (Neanderthal), Friday, 9 June 2023 21:52 (thirty-four minutes ago) link