AGING PARENTS

One of my parents-in-law is gravely ill rn, but NOT the one whose house is filled to the gills with a physical pandemonium that (I'm told, we've not been allowed in there in the 10 years my wife and I have been together) bids fair to put anything seen on Hoarders in the shade. When that parent in law passes I'm going to be the copilot for a garbage journey that will probably be unimaginably painful and intense for my wife. May tap you for wisdom when that time comes.

oh man elvis

pretty sure my reckoning will be, for better or worse, infinitely more mundane: fifty-year-old sewing/gardening implements, windows 3.1 manuals, 90s-era newspaper clippings, hidden caches of v8 juice forgotten amidst the mess

Seriously looking at preparing for a big hike on the John Muir Trail later on.

My dad and sis have done it. I encourage you to do so.

elvis, your posts in this thread are humbling and inspiring. i have a shit ton going on with my elderly folks at the moment, and i truly appreciate the fortitude, forthrightness, and imo righteous dignity that you present here. take care of yourself. hope you get to go hiking.

otm

ET, this sounds like an almost unbearable load, and yet you seem to be bearing it with forthrightness and even good (albeit black) humour. That you are taking this terrible experience and turning it into this heartbreaking yet beautiful and strengthening series of posts is such a sign of your personal strength and integrity. This is going to sound like a strange thing to say, but I hope that you are writing it down elsewhere, as well. You are such a creative person, creativity is really the way to handle these impossible and unbearable things. (Short way of saying: it's an insane and yet fascinating experience to be digging out the personal archeology of your and your family's life as you try to transform a hoarder's prison into a liveable home. I'd read a book about that subject, should you have the energy to turn it into one.)

I dunno about saying the other half of what I want to say (my talking about mental illness on ILX always ends up coming out wrong) but it's this: you do have the right to feel angry and sad and frustrated and betrayed about your mother's aberrant behaviour. (Some of it - the stuff about the glasses - yeah, that's not mental illness, that's a choice.) But the stuff that very much *is* mental illness - the hoarding, the indiscriminate composting of your most treasured family memories in amidst fucking garbage - the thing that I always have to try to remember when dealing with the seriously mentally ill members of my family, is that people are not being mentally ill *at* you. Intention is one of those hard things to disentangle, because, when someone is hurting you, and badly, it does not matter if they *meant* to step on your foot or not, it still hurts having your foot stepped on and your bones crushed, and you have a right to that pain. But when you're reading into it "my mother didn't care about me any more than she cared about rubbish" - that's not how it is. Your mother's mental illness was unable to distinguish between mementoes of your life and mementoes of the morning's post, but that is not an intentional act, that is the madness, and as hard and as painful as it is, one cannot draw conclusions about what a person truly values, emotionally, from what their mental illness and their compulsions compel them to do.

Like, to use a metaphor here, which will feel very familiar to you: I hoard CDs. You've seen (at least part of) my CD collection, and you know that it's physically impossible for me to get rid of CDs, even promos I don't even like. I keep everything, it's a weird compulsion. Yet, when it comes to the things I treasure, I fucking know the difference between "this is a treasured and meaningful artefact, a demo that was given to me by the guitarist" and "these are 37 copies of the same single (not even my favourite single!) in different formats that I just have because my bandmate was working at their record company when it came out that I cannot bring myself to get rid of." No one looking at that CD collection would know that the treasure sandwiched between 37 copies of junk is my treasure, but I still know. It's a dumb metaphor and probably doesn't work, but it's just about the futility of trying to draw ideas about value from the actions of a compulsion.

Anyway, just sending you light & love and reminding you that there will eventually be an end to all this digging.

Branwell -

If anything I've learned just how human my mother is. I allude to her family background a little in http://www.ilxor.com/ILX/ThreadSelectedControllerServlet?showall=true&bookmarkedmessageid=5052558&boardid=77&threadid=100094 but in short - she was raised in a 1920s-era children-seen-and-not-heard family were parental emotions were, at best, austere. Her father was also a out-of-control hoarder. Furthermore, she was the eldest of five daughters - I can only imagine what the competition was like in the middle of that: fifty years later, my mother still held a grudge against a younger sister who got ballet lessons when she didn't. Others held grudges against my mother for being the one who "moved away and left us." I was born so late into the marriage that all of this background may as well have happened to another person - I never really had an idea of what her experiences were like and reading all the saved letters (and they're *all* saved) has been, well, eye-opening. She was dealt a bad hand, got married at 19, and sadly was never able to get out in front of her own festering mental illness. Who could? It was the 1940s and 50s - mental illness itself wasn't even an addressable problem, much less hoarding. My dad used to say "I wonder how bad it could get?" Um dad, pretty fucking bad!

Of course I bring my own baggage and perspective to the Current Situation. I'm a expert problem-solving guy - perpetually on the lookout for patterns and intentions and latching onto them like Sherlock Holmes. I can't help it - my whole brain is optimized for doing that. After thirteen broken hotplates, 70+ teapots, endless numbers of empty tissue boxes and on and on and on it I finally had to admit to myself that I probably would not and never will find any connections, explanations, and certainly not any answers and to just get on with the digging. If I paused at every "WTF is this?" moment I'd still be outside trying to open the door. I'm also completely terrified because in a parallel universe that's very close to this one, I'm a hoarder too and probably just as bad - towers of albums, books, ephemera, on and on.

I used to think that I was responsible for a lot of her behavior. Two weeks ago I made it to the back wall of the garage (the windows had not been opened in over 45 years - I know this for a fact) and found most of her things that pre-dated her marriage that she could never let go of. There's a lot of it. I wish that she could have found a way to let go but hooboy were there a lot of consequences. I need to write a follow-up post to my exegesis at Tell me all about 10-year-old you

I didn't intend to take over the thread, but megathanks to everyone here for all of the support. Whenever I answer the "so what have you been up to?" question with "89-year-old hoarder mom" more often than not it inevitably ends up being a "I don't know what's going to happen to my parents" discussion. Seems like there's a lot of ambient fear, uncertainty and doubt when it comes to dealing with parents in the final stage of their lives. I wouldn't usually suggest stream of consciousness core-dumps on ILX, but HFS I gotta get this out somewhere.

xxxxxxpost to Jon - please ask away when it's time.

I can only describe the excavation as like writing a book, climbing a mountain, driving I-10 through Texas or really anything that requires constant, steady, unchanging work. It sucks, I hate it. I want my weekends back and then all of sudden, holy shit I made a clean spot. Hey, there's a house under here. That bedroom can now be yellow-tagged.

Sign posts like that keep you going - also taking things to Goodwill where I'm hoping the stuff will, you know, actually get used for once.

OK, one last thing.

You know who I hate? I hate the people at Franklin Mint, QVC, or anyplace who markets ridiculously priced "collectables" at elderly folks vulnerable to the exploitation of nostalgia. Over a long enough time scale, the value of these collectables is a Big Fat Zero. Can only imagine the meetings going on as these people look at aging population of baby boomers and how to best market them out of their money.

the thing that I always have to try to remember when dealing with the seriously mentally ill members of my family, is that people are not being mentally ill *at* you.

Thanks for this, Branwell. You're absolutely right.
I've been dealing with my own aging parents hell, as documented upthread, and yeah I do get in these fits of rage because of my mother's drinking and all the accidents and the middle-of-the-night calls from the local hospital. But beyond all the horrible practicalities, the hardest part is this misguided resentment I have towards my mom - as if she was stabbing me in the back everytime she buys a bottle.

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.