AGING PARENTS

Louis Theroux's documentary about dementia patients in Arizona to thread:
http://www.dailymotion.com/video/xs16mn_extreme-love-dementia_shortfilms

^^^just finished watching this--thank you for posting. I'm feeling a little torn about doing my next internship (I do 2--am currently in a hospital ICU) in hospice or at a memory care facility. I'm going to try to get a volunteer gig it a local memory care joint to get a little experience.

When I first learned that dementia progression was broken down into numbered stages I kept thinking of hurricane and tornado strength ratings. If you're already at stage five, then what the heck happens when things get even worse?

Last week the nursing home called. In short, my mother's needs have gone beyond what they can provide. They're absolutely correct too... her dementia is progressing very quickly and because of all the falling, she's had to trade in the walker for a wheelchair. She can barely cut her food, much less move a fork to her mouth. Using the bathroom (which she does often) is more of a production. Her instinct is to get up and go, but that's when she keeps falling down and whenever she complains about the pain the home automatically sends her to the hospital for examination. Repeat repeat repeat.

The next step is a board-and-care house. These are residential houses with five to six residents and since they're smaller, the staff (the better ones have RNs on duty) can provide constant and more individualized care. They're also significantly less expensive. So last week my sister and I met up with a Realtor For The Elderly and we visited a half-dozen. Knocked flat at just how camouflaged they are - they look just like a regular Orange County suburban house from the outside, but the insides are all set up for dementia care. Instantly thought of suburban marijuana grow houses or stash houses for the undocumented. Apparently there's a lot of them in OC, because of the crash quite a few homeowners have converted their properties to board-and-cares. Just in time too, there's not enough facility space to accommodate the growing numbers of patients.

Finding the right match is tricky. One house was scratched off because of my mother's casual racist colonialism (the director was Indian and I instantly envisioned my mother going off again on "how horrible it was that England gave up on India"). Another house scratched because the manager looked visibly worried when we mentioned the middle-of-the-night hollering and attempts to walk. All of them have hospice options which I suspect we're going to need sooner rather than later.

Meanwhile there are some issues with her physical health. A couple months ago the doctors ran a complete physical test and found an aortic aneurysm. Surgery is out of the question because of her age and fragility. She's on a pain patch right now, which seems to help but the dementia is front-and-center.

BTW, the costs of all this is eye-croggling. Because of all the outbursts, we had to move her to a private room - a change from $5500/month to $6650/month. Pharmacy costs are equally as HFS: $1800/month - mostly from a couple of black box meds. There's some small relief from Medicare and social security. There's an upcoming change in January that will relieve some more, but I don't know what it is - my sister is handling all the medical stuff while I deal with the house. For that matter, I'm unsure if my mother will make it to January.

Oh yeah, I finished moving into the house yesterday.

Didn't expect to be updating again so soon, but the board-and-care is out for the time being. The dementia behavior is completely out of control again. She's now "painting herself in shit" and hollering so loudly at all times that folks on the first floor are calling up to see what's going on. Anyway, it's back to the hospital for now while the doctors again readjust her anti-psychotics and try to level her out.

One of my aunts commented that my mom "thought of herself as an only child who happened to have 4 younger sisters" and commonly threw tantrums. The nursing home manager remarked that as dementia patients regress back to the toddler stage those emotional memories become front-and-center again. Fucking hell.

One resident on the memory care floor has 11 children and all of them are fighting amongst themselves. The conservator wants to quit.

thank you for your contributions to this thread, which as horrid as they are to read give a very lucid insight into something that few people who don't have first-degree relatives with dementia will be particularly acquainted this

acquainted *with*

Yeah. I mean...damn. DAMN.

ET, seriously, if you need to step away for an evening at some point, you know where I'm at, and you're more than welcome to just come over here and decompress.

I can't even imagine on how families deal with early-onset dementia/Alzheimer's. One of the dementia patients featured in the Theroux documentary is a forty year old woman with a family and a nine year old child. Utterly heartbreaking. I feel like I'm... well, not lucky but maybe dealing with an abbreviated experience? It's not like I'm super-close with my mother, but as nakh. said she's still first-degree and you only have one. I was 22 when my dad died and very young at handling Big Life Issues like that. I'd like to think I'm better at that now.

I can't wait until I no longer need to monopolize the thread, but I'm glad it's here should another ILXor need it.

BTW, TIg Notaro's LIVE may just be the best thing to listen to when you're suddenly navigating through pits of stress and uncertainty:
http://tignation.com/2013/08/tig-notaro-live-full-release/

saw my 101-yr old grandfather again today -- he said he misses his mother

shits real

ugh

my wife's mom has been on and off various medications for her alzheimer's and she has also been prone to seizures. she went off one medication that was giving her certain 'digestive issues' and then yesterday had another seizure, pulling down my wife's dad as she fell. she's okay, relatively speaking, and is at home. my wife's dad has a small hip fracture and needs a rod installed to prevent any future complete break.

we drove out there last night to deliver some overnight stuff to my wife, who had gone earlier. my wife's mom is asking to go home or asking where her husband is or needs to (or more accurately thinks she needs to) use the bathroom every ten minutes. my wife's trying to use this time to get rid of any crap lying around the house resulting from her dad's hoarding problem. on my way out the door last night i grabbed about twenty old used tissues lying on the dining table and an old banana.

i did not attend to the pile of paper towel bits: you know how when you tear a paper towel and sometimes there's just a little triangle left to the roll? he doesn't leave it there, he tears it off and saves them in a pile on the kitchen counter for tiny spills. this would be ok if the counter wasn't filled with dozens of other things and also if he ever actually used the scraps.

Elvis did you ever find anything to read about hoarding? I read Stuff a while ago and it's a thoughtful, sensitive, fascinating-but-not-lurid account of hoarding and the psychology of hoarding. (It's popular nonfiction, not an academic text, but the authors are a research psychologist and a clinician with loads of experience.)

ugh

it's not like it was a total surprise, but getting the official dementia diagnosis for an otherwise extremely healthy 73 year old is oh god I know this road and it is such a fucking sad road

oh quincie. It is.

already I have had suggestions for "looking into coconut oil and a super-low carb diet" I mean this is Alzheimer's, c'mon.

suggestions from well-meaning ppl who don't have a clue, is what I mean

yeah, the pervasive notion that dementia can be halted or reversed is depressing, because it just reinforces that these helpful ppl have not witnessed the cruel decline in person

mr veg's dad continues to decline. seeing him slowly fade is the hardest thing i have faced. it's like watching dandelion seeds blow away one at a time

each time there's just a little bit less of him, and a little more fog

when I was small my mom was POA for her mother, who had non-Alzheimer's senile dementia and must have been a mighty challenge to deal with. It was many years before the phone in her room was taken away and until then my mom would regularly have frustrating phone calls with her that ended in shouting, which was naturally upsetting and confusing to small-me. Thinking about it now as a young adult and my folks on the edge of retirement makes me anxious sometimes. I don't know what they might need in 10 or 20 or 30 years, or if they have advance directives, or anything.

I highly recommend "5 Wishes" for advance directive planning:

http://www.agingwithdignity.org/five-wishes.php

It's actually pretty cheesy in places, but has the advantages of 1) being very straightforward and accessible and 2) recognized and honored as a legal document across most states (so you don't necessarily have to do a state-specific directive) and 3) no lawyer required

The palliative care team at my hospital uses it and it is pretty much the "go to" document for hospitals and hospices. I'm doing one myself.

this is relevant to the discussion, tangentially:

http://loudwire.com/megadeth-dave-mustaine-help-find-missing-mother-in-law/

http://www.nbcnews.com/nightly-news/glen-campbells-battle-alzheimers-last-recorded-song-n220031

there should maybe be a 'fuck dementia/alzheimer's' thread. it is a terrible, terrifying thing.

The fact that Alzheimer's is a thing that is happening to ppl every day irl is utterly intolerable to me, one hates to scale dissimilar horrors but I abhor it even more than C.

Not to start some sort of suffering Olympics, but Alzheimer's takes the gold for absolute worst fucking disease.

like i've said before we're dealing with my wife's mom going through it, she's towards the end of stage 6. she seems to be where glen campbell is at, recognizing people and able to have happy moments, but also on the cusp of going into a care facility. she's had these plateaus that last for months and months, then there's a sudden decline, then another plateau. so much of it is being aware that another decline is inevitable, but knowing just when it will occur is impossible. w/r/t my previous story a few weeks ago, my wife was at her parents' house for a week while her dad was in the hospital and they've had caregivers for most of that time since. it's just devastating stuff, going over there and seeing how bad it is.

My mother's 90th birthday was on November 1. The hospice folks (she's on hospice now) brought in a big cake and had a party. She loved it. Her current med combination is working out well and her dementia state has advanced along to whatever counts as Stage Five Acceptance.

Meanwhile, we hit the wall at 18 tons of crap hauled out of the house. There were dishes in the crawlspace, under all the sinks, everywhere... the woman who's handling the estate sale (my life in the the hoarder estate sale voyeur underground deserves another post) has seen all the obsessions: dolls, penguins, radios, but apparently my mom earns the "I've never seen so many dishes before!"award.

The sale is happening this Wednesday, Thursday, & Friday. Here's what's left.

I hope it's to some extent gratifying that after all of this heartache your mom was able to enjoy a birthday party and you've unearthed enough of value from the home to have an extravaganza.

Best of luck and congrats on all the progress ET.

Good luck with the sale! It's encouraging to hear how much you've accomplished.

I should never click on those things because it's always "Wow, I had that toy airplane! Is that a Snoopy sno-cone maker? Here, let me get my billfold…"

Yes, I see a Cathrineholm bowl in there and a lot of the kind of stuff my grandma left to my mother that's now considered sentimental family loot.

Basically we'll be right over.

I like knowing that many of those items are going to go on to be much-loved by other folks. I'm glad your mom is feeling better and had a great birthday. You are a great person and I really admire your grace and humor and humanity in dealing with this most difficult of situations. I hope I can be half as good with my dad as things progress.

Sounds like you're getting to a (relatively) good place - really happy to hear

sending good thoughts your way Elvis

same, i am sincerely in awe of the enormous task you took on and of how gracious and respectful and loving you have been throughout. and i'm glad your mom had a nice birthday.

ILX gets first dibs on whatever's left from the sale. The only catch is that you have to come here to get it. I take Square.

Dishes and bowls are a hard sell in the current estate sale market. Read as much sociology into this as you want, but it's difficult to liquidate those kinds of family inheritance. Sterling silver is only worth the melt value. Dishes, china, etc. that aren't microwaveable just aren't desirable except for other folks of that generation. OTOH, I've been told that a lot of dish patterns are desirable in China and that it's relatively common for liquidators to buy up all the dishes from a sale, repeat until one container unit is filled, and then ship it off across the Pacific. 2014 economy: go figure.

I recognize at least two china patterns. I don't know if it's worth seeing if Replacements Ltd would buy anything.

"Ooh, it's a special family dinner taking place in our house? Liao, make sure we set out the fine California."

Er, is a joke my granddad would have made, that silly guy.

aaargh

four hospital trips in two weeks for my father in law, he refuses to cooperate in any way when he's back at home, won't take meds, won't eat, but is of sound mind and lies to everybody so they can't do anything just yet.

L is near Hudson NY on FMLA time (Family Medical Leave Act) and it is slammed w/snow as well, she has been driving him back and forth from the Albany hospitals in hellish road conditions while he yells at her.

her dad doesn't want her there. everybody (family, medical folks) is telling her that it's time to let go.

what is up with these WW2 guys who just fuck with/abuse everybody and treat serious issues like they are jokes, it's like they live inside their own personal mythology.

she's been reading "Being Mortal" and I guess it helps, a little, in the abstract sense.

I wish I had gone with her now, we didn't think it was gonna turn out this badly when she first left.

aaand now he's in the ICU

sometimes people just want to die

I guess

i'm sorry. that sounds really rough.
this thread totally freaks me out but i am trying to steel myself for the future so i read it anyway

yeah that's what's going on xp

he's been clear with her that he wants to die at home if possible, has signed over power of attorney, no heroic measures, all that good stuff. so at least the paperwork is in order, there's a will and a trust, all that.

I just wish he could ease up on her a bit

Have you talked with hospital's palliative care team? ICU docs can be dicks about not a palliative consult unless you demand it. Hospice is good at helping with family dynamics stuff. You can ask for the hospital social worker for referrals.

I'm so sorry you're both having to deal with this, her up close and you long distance. Being Mortal doesn't address cantankerousness enough or how to deal with people you care for behaving badly toward you. I get reminded of the nasty old racist lady trying to kick her morphine addiction in To Kill a Morningside whenever I hear my MIL let fly. Not that it helps.