Dementia

The government want memory clinics in every town to try and guard against dementia.

My gran's on the verge of being sectioned because she refuses to take her medication and is abusive to home visitors. She left her taps on and flooded the flat downstairs, causing their electricity to go off. Yesterday. In Sheffield. She's never been a pleasant woman, but she's become downright nasty as her dementia has got worse.

What experiences do you have of dementia?

My grandfather had dementia, Alzheimers, but my mom and aunt were lucky enough to get him out of his own house and into a care home pretty early. He was never overly nasty or terribly unpleasant, but on some of his 'off' days he could be quite grouchy and hard to deal with.

I didn't see him too often as his Alzheimers worsened. My mom and aunt visited him pretty regularly, and I think it hurt them a lot to see him sort of withering away (mentally and physically; when he died he was so, so small. So much of his body weight had been lost. He was barely recognisable, really). He didn't know who they were aside from maybe a familiarity of seeing them on a regular basis. I think personally the worst part of it for me wasn't necessarily dealing with my granddad directly but seeing its effect on my mom. It's a pretty horrible thing to have happen to someone.

my gran's got vascular dementia, and she lives with my parents (and therefore, atm, with me) for half the year. fortunately she's physically very fit for a 93-y-o, and is somehow able to leave the house and come back without getting lost too often. on the other hand, the only person she recognizes is her daughter.

she couldn't live independently and we have to make her take her meds, of which there are many, including (i think) prozac. like nick's, by the sound of it, she's never been pleasant, but we'd probably feel worse (at this stage) putting her in a home, while it's still basically manageable.

but then at a certain point you have to, and the nicer homes are more fussy, whereas they are less likely to kick someone out they took in earlier. so that's a calculation.

Yeah should probably note both my granddad's homes were really good. Didn't really have the stigma I think a lot of care homes do. Both of the ones he was in were specialised specifically for people with various forms of dementia. Mom & aunt didn't have anything bad to say about the care grandpa received, thankfully.

My grandfather had <a href="http://en.wikipedia.org/wiki/Dementia_with_Lewy_bodies";>dementia with Lewy bodies</a>. Until his death he continued to live at home with my grandmother, and my mother and her brother and sisters all took care of him regularly. He got very, very thin, and needless to say the memory and cognition problems were terrible. In the last few months of his life, he thought I was my father, and regularly addressed me as such, asked me about my Army experiences, etc. It was especially frustrating for him because, deep in the back of his brain, he knew that's not who I was, but he just couldn't bring it to the front. Shaking hands with him frequently seemed to help reinforce for him who you were.

The dementia combined with the fragility, and the fact that he had emphysema and had to have regular breathing treatments, meant he really wasn't much of a danger to himself or anyone else, so my family never had to put him in a care facility. When he died, he died at home surrounded by family.

I'm starting to worry about my wife. Hitting "submit post" is going to be one of the harder things I've done this year. But here we go.

Do you want to talk about it y/n

oh william, that must be a horrible worry to have. i don't have any useful advice to give but are you able to have a chat with your family doctor or failing that, get some advice from the alzheimer's association?

Seriously, I'm not prepared or qualified to give any advice here, but talking to a professional early seems like the best idea.

and not wanting to pry here, but i guess the other thing is you need to talk to talk to your wife about how she's feeling and maybe try and get her to see the doctor. could be a symptom of something else, could be nothing at all...

Do you want to talk about it y/n

― passion it person (La Lechera), Thursday, November 22, 2012 5:14 PM

I do, but
- I don't want to sit here having thought the A-word in my head and start to see every single symptom as a symptom of THAT

- fuckit...it's called Alzheimer's. Name the name, you big baby.

- I don't want to use ilx as my therapist. I don't know how having one spot on the site as a place to unload will change my relationship to other boards and you folks here who I consider friends. And it's unfair to y'all, to the extent that probably very few people here are trained in counseling. There have been plenty of times when an ilxor has been in a bad way and I felt horrible, but didn't know what to say so I said nothing. On the other hand, I was always glad that ilx was there as a place to vent.

- I hate talking about her behind her back.

Sorry, it was kind of a stressful day and I'm a little crunchy. I'm going to be going back and forth on the wisdom of posting on this thread, even as I do it. Thank you LL and Nick for your words of support.

don't call yourself a baby for being afraid, man. real life stuff calls for real life emotions and fear is one of them. (I talk a good game on this but in real life it takes me 10+ years to admit to fear.) but be OK with your feelings man. believing in you finding strength.

it seems like talking to HER about it would be the most difficult thing of all. :-/ be strong, man.

<3

Thoughts with you and your wife, William.

all my support, wmc

Thanks everybody. There has been just too much stuff lately that I can't laugh off anymore. We did talk about it briefly the other day, actually used the A-word and everything and the world didn't explode.

A lot has happened since I posted here, none of it good.

a woman who kept on turning up at the door of the place I lived as a teen. My mother's current place, assume that must have been dementia. Certainly wasn't known to us but it is possible that she did know the family that lived there before us. not sure though. We moved there when I was 11 but I can't think when she kept on turning up, think it was a while later.

So, lithium is a hell of a drug.

Fiddlesticks. I was hoping for a better update, William. I've been helping my Dad deal with his sister's Alzheimer's for years now, and even at that remove it's soul crushing. I hope things turn around William. Sincerely hope,

hoping for better things, dear WmC.

^^

So, lithium is a hell of a drug.

It is. A fine line between lifesaver and life destroyer. Or just life fucker-upper.

Diagnosis is lithium toxicity, prognosis is pretty good. Sorry for the short post earlier , Judy was trying to pull out a IV again. Her levels weren't so high that they wanted to do dialysis. Just 3-5 days of detoxing her kidneys and they think she'll be ok.

Egad! Best wishes to Judy for a quick and complete recovery.

Thinking of you guys - hope it gets resolved super fast and she bounces back to her normal self.

I'm so sorry WMC, but I'm glad that there is a good prognosis for her (and you). And you can always just use this spot for thinking out loud, or noodling things through...it's a heavy load to carry, even when there's a little light at the end of the tunnel.

praying for a quick recovery

this is "better" than Alzheimer's, right?

My father-in-law is deep in this, I've seen what it looks like for the rest of the family, stress-wise. If you have people you can lean on, please lean. You will need it.

xp -- much better. Same symptoms but likely with full recovery back to her old self in a few days. As my daughter said earlier, like a boring episode of House.

phew! how great that you have your daughter to talk to in situations like this.

wow that fast? that's great!

Thoughts are with you guys, WmC. Hope everything gets back to normal as soon as it can.

Oh crap William thats so awful, Ive seen Judy post on yr FB and she seems like a feisty awesome lady, so I hope you can find a good solution to this, yr good people. x

William, thats great news that a full recovery is likely and so good that you tackled this so promptly too! Good job and I hope she's back to her old self soon.

I've only just seen this thread but I'm glad this wasn't as bad as feared.

Me, too! I wish you all the best.

Waiting waiting waiting.

So, do they just pump her up with fluids and try to wash all the lithium out of her system?

Yeah, pretty much. No improvement today in cognition or tremors. Switched from Ativan to haldol to keep her calm while all this is going on because she's pulling at her IVs and catheter in her incoherence. Ativan just got her wound up and ready to rassle bu haldol seems to be working.

The situation has more or less clarified into two situations: brain function and kidney function. Today was a day of improvement on brain function, and I'm hoping for good news on kidney function tomorrow morning. Sarah's taking the overnight shift tonight and I'm about to go pass out blissfully in my very own bed.

Thoughts with you all, William.

Echoing that.

Huge leaps forward on cognitive function. Being able to understand what's going on, converse a bit, get up and deal with bodily functions, such a relief. Now for her kidneys to get the memo.

One thing at a time. I just let out a small sigh of relief on your behalf.

Good news, so glad!

Hadn't seen this thread before, wow reading the last few weeks of it is a roller coaster. So relieved for you Wmc. Is she leaving her IVs alone now?

Yes, when they switched her from ativan to haldol she started resting much more peacefully and quit pulling at her IVs. Yesterday she would hold the line in her hand -- seemed to be for comfort? But she wouldn't pull at it. Now that she seems to have actually woken up, she's not messing with it at all. Catheter's out, and they've gotten her up and to the bathroom on her own. As mental function returns steadily and more or less as predicted, this all comes down to a kidney function situation, which they can gauge by regular blood draws and tests of sodium/glucose/electrolyte levels.

btw, the jumping back and forth between screen names is because I'm still logged into my old mod account on my iPad, so posts from that screen name are when I'm actually at the hospital.

Wholehearted wishes for a complete and speedy recovery being beamed from here to you folks, Wm.

^^

The good vibes and wishes coming from youse guys here and from Facebook friends have meant so much -- thank you all. You may not really understand how buoying it is, but it really really is. Anybody who criticizes this place for being Cuddlestein Mountain can go swallow a grenade.

haha!

<3

so glad she's on the mend, wmc

My offer to send xmas cookies still stands, fwiw

I'm very grateful for the turn this has all taken, WmC. Been reading for a week & thinking about you and your very own medical mystery o_O but grateful for the outcome.

Slept all day except for very brief periods with some lucidity. Kidneys still no better.

Wm, I hope you get another night off soon and some good kidney news even sooner.

Good thoughts to you and yours, WmC! And FWIW I really value you posting about these experiences because I am just now embarking on a new career in social work in healthcare settings, and hearing about these raw experiences will help me help other in the future I think? So kudos and thank you!

hang in there, wmc

WmC, best to you and your family.

Huge leaps forward in cognition over the last 24 hrs. In fact she's doing so well that we've left her on her own for the afternoon, while I get some work done and Sarah self-quarantines. (Ill-timed viral crud ahoy.) Still nothing on the kidney front, but they're giving her another dose of a hormone that is hoped to kickstart functionality.

I am so tired.

Hang in there and bloody well done so far.

we've got your back

http://25.media.tumblr.com/tumblr_lgf9b3EWLL1qdxb8vo1_500.jpg

hey which ilxor puppy is that one slacking off. GET TO WORK SLACKER

Good kidney news! At least as good as I could drag out of the doctor who took over from her admitting doctor, who ended his 7-day shift on Thursday and turned her over to a Dr. Wise, who doesn't seem very wise. Kidney function is returning to normal, cognitive function is returning hour by hour. BUT: they're not releasing her until MOnday at the earliest because they want to do a psych consult to figure out the new bipolar maintenance plan.

So the two-part situation (cognitive function and kidney function) has turned into a three-part situation: cognitive, kidneys and bipolar/mood stabilization in the wake of completely cleansing her of lithium. I'm down with that, I totally understand it. I knew that her mood issues would be especially crunchy in the wake of lithium detox. But it was a bit of a curve ball, and I'm a little irritated about it.

Dr. Russell, her admitting dr, was a good explainer and a good listener and took a lot of time with me, not just to present everything he wanted to tell me, but to listen while I repeated it back to him in my own wording so that we both knew exactly what the situation was and were both on the same page as far as diagnosis, prognosis, treatment plan and expected outcome. Dr. Wise stared at his shoes, barely talked above a whisper, and acted like I was completely missing his points when I kept asking him about her kidney issues. Maybe Russell wasn't such a good explainer to Wise, or Wise didn't read the case notes very well, but the last conversation I had with Russell, the kidney situation was what concerned him the most.

Anyway, I'm hoping I'll be at the hospital when Wise does rounds tomorrow so I can lay this situation out the way I, Judy's primary caretaker, see it. I think he needs the added perspective.

Note to ILX's medical professionals: in case you didn't already know, learning to explain shit is the 2nd most important skill you'll ever develop, after learning to cure shit.

Also: what the hell is a "hospitalist"? (Never mind, I looked it up.)

someone who collects hospitals iirc

Glad to hear the situation is improving, if only slowly and irritably. Take what strength you can from our support William. I'll be keeping my thoughts geared towards Judy's continued improvement.

Indeed. Best once more for all and good thoughts sent your way!

Here's hoping that the lithium toxicity diagnosis solves the issues. If there is incipient Alzheimer's, there are diet & lifestyle changes that seem to help progression. Some usual stuff (mild aerobic exercise, increasing fruits and veggies, reducing meat) and some odd (phenolics in apples do seem to keep the doctor away, saffron works as well as Aricept, supplemental copper and iron are no-nos), but you can go to nutritionfacts for some short videos on the research.

I'd missed this thread until now - best wishes to you and your wife, WmC.

glad things are looking up WmC.

i also missed this thread - v glad your wife got good care and is doing much better - wow, what a thing to go through. it sounds like you're doing a great job of caregiving and asking for what she and you need from the med system!

My step-dad was diagnosed a year ago with Alzheimer's, but he's had the symptoms for years.

He's only in the moderate stage right now - basically can't form any new long-term memories but still recognizes everyone, still remembers events from years ago, etc. Not sure how long this stage lasts? Not looking forward to finding out.

I think the saddest effect I've seen so far was the dramatic change in his personality in such a short time frame. This man was a talker, loved tell stories. He was also very physically active up until a few years ago. Now he just sits by his livingroom window staring outside all day, not wanting to talk, not wanting to go anywhere.

my father in law has it too. on a good day, he has about half an hour of short term memory. He can have a coversation okay, but he gets trapped in a loop of asking the same question, it's so hard to see that panic in his eyes where he knows what he wants to say, but it is all like grabbing at smoke wisps. he watches law and order 24/7. he doesn't seem to want to do much of anything. like, that's his comfort zone & he's happy as long as that little island never changes. moving house earlier this year really messed him up. for a month he woke up & every day didn't know where he was. my mother in law got cancer this year...he kept asking her every day what's wrong, why are you sick. and every day she had to tell him.
it's so heartbreaking.

Scary stuff. Good luck, WmC!

Oh dear little Veg, it really has been a hard year, hasn't it.

yep. everyone's doing remarkably well considering, so that's something to hang my hat on :D

Two weeks ago when it seemed like she was losing her mind and I wanted to unload somewhere, I didn't want to start a new thread. This seemed like the best one to revive. The symptoms were just like her mother's when she was dying of Alzheimer's, just progressing so rapidly. Now it feels a little disrespectful to be posting about her here when Alzheimer's isn't the diagnosis. She might still develop it someday, but right now that's something I can push away. My sympathies to people who have family members with dementia that can't be treated with a week in the hospital.

This whole thing has been so surreal.

doesn't matter whether it's short lived or long term, it's hardcore on loved ones either way. I don't begrudge you posting to this thread WmC, and I doubt any other ilxors would either. <3

Very good meeting today with the doctor doing rounds. Dr. Wise was flaky yesterday because he had a huge head cold and was probably full of drugs. A third doctor looked the situation over today and declared himself happy with her progress -- pending a good psych consult tomorrow, looks like she might get to sleep in her own bed tomorrow night.

Woohoo!

THATS WHAT SHE SAID, AWWWWYEAH

:D

awesome news, wmc!

Nice work team C!

:)

Got home yesterday evening.

A new benchmark in irony for us: the day we get her home from the hospital is the most frustrating day of all. We got the all-clear from Dr. Wise (whose cold was much better and who seemed to be actually conscious and communicative), but he tossed in "oh by the way, you're diabetic, sort of, or at least we're going to treat you as if you are. Someone from the diabetes center will be up before your discharge to show you how to test your sugar and give yourself insulin shots."

And the shrink prescribed a new med that will be anywhere from $20 to $235 per month depending on the dosage she needs to get stable. And she wanted to start her on Depakote but we said "nuh UH" to that based on too many horror stories from friends who'd been prescribed it.

I'll probably draw a line under this stuff on this thread, since any posting I do about Judy's health problems won't be about dementia (at least I hope not for a long long time, like ever).

glad she's been discharged is well on the path of recovery, wmc

Glad she's home and good luck with sorting all the other issues!

I'll probably draw a line under this stuff on this thread, since any posting I do about Judy's health problems won't be about dementia (at least I hope not for a long long time, like ever).

― WilliamC, Tuesday, December 11, 2012 8:59 AM (8 months ago)

bitter lol

Her cognitive problems are back, almost as bad as last Nov/Dec, and this time there's no lithium to blame. I'm scared to death. She has a psych doc appointment Wednesday. There have been medication changes over the last few weeks. We gotta get this shit figured out...she's suddently a vegetable, and we're supposed to drive to Maine a week from today.

Oh no. I hope they can quickly piece together what might have happened with the medication changes and try a few things right away.

I posted earlier in a panic attack at the end of a few days of building stress, but we sat down and carefully went through what/when the med changes have been. I think I can pinpoint the culprit, the dosage of which was bumped up a couple of weeks ago. We're going to bump it back down starting tomorrow in advance of Wednesday's appointment.

o jeez good luck

btw if you're gonna be crazy enough to drive to maine, you might as well stop in nyc on the way back

good luck wmc, hope everything comes out ok with the change in dosage

Godspeed to your family, Wm.

Thx everybody.
It took seven tries just now to get her to understand what day it is. No, it's not October. No, it's not the 2nd. No, it's not Saturday. etc.

btw if you're gonna be crazy enough to drive to maine, you might as well stop in nyc on the way back

I'd like to! But logistically it's just too much to deal with. Judy and Sarah are flying back home early, on the 14th, but my mother will still be along for the ride. NYC will have to wait for a solo trip, when I'm not babysitting anyone.

Next Sunday we're staying overnight at our inlaws while they are out of town, and we will be looking after Mr Veg Sr, who has dementia as noted elsewhere itt.

Nighttime is the worst time for him. He barricades himself in his room, wanders the house, and last weekend he fell out of bed three times in one night, and fell in the shower.

They've changed his medication within the last couple of months, so during the day his cognitive functions are much better and he's not aggressive and argumentative anymore. but he's still so restless at night.

I will be there with Mr Veg, so it's not like I'll be alone. And he's usually a bit more settled when we are with him maybe just because we're different faces...he doesn't act up as much when we hang out with him, or at least he never did in the past .but I'm still nervous. I've never stayed overnight with him. I don't want anything to go wrong, and I know worrying about what might happen will just make me more edgy throughout this week.

Part of me thinks that my sister-in-law is kind of loading me up on all the what to expect stuff, maybe thinking that it will help me prepare, and in a way it's good...but I also feel like she's unloading all her 'this is what we deal with when you're not here, see it's not so easy'...like there's a little bit of passive-agressiveness in there. Which is fair enough, caring for him in their home is no easy task, even with a daytime in-home carer to help out it's still a fulltime job.

I dunno. I am just rolling all this around in my head and trying not worry myself into a panic for the weekend.

VG, please stop worrying. Trying to outthink the future is futile. Whatever happens, you and Mr Veg can handle this and make good decisions, so long as it doesn't depend on you rapidly locating your car keys or eating some broccoli.

<3

thank you aimless, that means a lot

There should be a picture of my mother on this story...

Cynical attitude in golden years linked to dementia risk

People who have a cynical distrust of others, and think their motives are selfish, could have a higher risk of developing dementia, a study has said.

Researchers compared levels of cynical distrust in 622 people with the incidence of dementia.

They said people with high levels of distrust were twice as likely to develop dementia.

Experts said any findings that helped understand the disease were important, but called for larger studies.

One in three people aged over 65 in Britain will develop dementia, according to the Alzheimer's Society in the UK.

In 1998, volunteers, with an average age of 71, were asked to rate their agreement with statements such as "I think people would lie to get ahead", or "it is safer to trust nobody", said the researchers.

Scientists at the University of Eastern Finland said 46 people had developed dementia in the following decade.

Fourteen of the 164 people who showed high levels of cynical distrust in 1998 had developed dementia in this time, compared with nine out of the 212 people with low levels.

Dr Anna-Maija Tolppanen at the University of Eastern Finland led the study.

She said: "These results add to the evidence that people's view on life and personality may have an impact on their health."

Meanwhile, was informed by the folks at the nursing home that she's at stage 5 or 6. When I last saw her, she recognized me but couldn't remember if my dad and her parents were alive or dead or what happened anything greater than 5 minutes ago. Weirdly inconsistent though.

that's terrifying

xxpost yeah that sounds like my father inlaw

Sorry to hear that, Elvis. <3 to you.

My mother-in-law definitely has had the cynical distrust thing going for years, and now is to the point in her decline where the last time I saw her, she pulled me aside and asked "have we ever met?". Usually she takes me for a member of the staff, but now even that fleeting glimpse of recognition is gone.

Sorry you're having to deal with it Elvis, it's never easy.

If anything, I'm just happy that she's finally having some peace and decent health for once.

Thanksgiving was the first time that my father-in-law didn't recognize me at all -- the few times we spoke he just stared at me with full dementia-stare. Not even searching for who I am, just coming up completely blank every time. The thing is, he hasn't recognized mr veg for the last few visits now either - in a way I prepared for it so it wasn't as heartbreaking as i had expected it to be. You just slowly accept every incremental point of decline as it comes, once it starts coming

His wife died 18 months ago, and that was when we really saw the decline. He moved with my inlaws into a new house pretty soon after that and it turned him upside down almost completely, because he was still in the early stages. He was scared and confused and it took a good 3 months or more before he was settled.

Now they are moving again, probably within the next 2 weeks if not sooner. Further out of town, to a larger property and a larger house. The house they are in is too small and had stairs and was kind of difficult for everyone. But being so far out of town now raises new concerns about his carer, who is with him 7 days a week but lives on the other side of sacramento.

I'm wondering if the move will be easier or harder now that his dementia is so advanced. He's almost a blank slate now, to the point where he's almost like a poseable mannequin...you just point him in a direction, he rarely knows why he's in a room anymore if he's moving around.

The next month is going to be interesting.

The hardest part of all of this is just trying to figure out how this all ends for him. He's healthy, healthier than he's ever been physically...but the dementia has come on so strong now it's like he's permanently switched to the static channel, there's little to no signal now to even really successfully communicate with him unless it's yes/no basic questions.

i dunno

IME, the tipping point of "the end" is when and if you make a call for him to go to hospital (after a fall, or an infection, etc.) and how that hospitalization is managed.

I've worked in a hospital long enough to know what call I'll recommend when my father is at that point.

With advanced dementia, pneumonia is your friend, something to take you away. Going to the hospital to be intubated. . . the end is the same, the setting and the cost (social, emotional, financial. . . not so much).

If your FIL does not have a medical proxy, I highly recommend the family have one named, and that that person have a plan.

This sucks, basically. In my family's case, we're just trying to make it suck as minimally as possible.

but it FUCKING SUCKS. I mean cancer sucks, all suffering sucks, but there is something about dementia (which is terminal, although no one seems to want to talk about it as a terminal diagnosis) sucks in an extra special sucky way.

my brother in law is his proxy - he's also an emt so def equipped to take care of him. he did most of my mother in law's inhome hospice care as well.

it's more just, how long? the way he is now we just dont know if it's years or months or what

and yeah

it sucks the most because it's so cruel in such an almost innocuous way, like the way ALS works, where you are essentially trapped & just slowly shut off in yr own body

Yeah, hearing you on that. We're coping by just focusing on maximizing quality of life at every point. No idea what the future holds, what the timetable is. He could outlive my mother, which would then make my life really, really, really different, more different than it is already.

Fucking sucks. And in the back of my mind it is a ticking time bomb in my own DNA. I don't know which is worse--to be the spouse with Alzheimer's or the spouse caregiver. I honestly don't now which one I'd pick for me and my spouse. Just fucking sucks is all.

In some sick way I am almost looking forward to more people having loved ones with dementia (which is totally fucking happening in a huge way over the coming decade+). This is not normal aging, this is a disease, it is the fucking worst, fuck you pink ribbons and fuck you ebola and fuck you lupus or whatever.

otm

My dad's in the midst of it. Still aware and alert in the immediate presence as far as recognizing family and knowing who he's talking to, etc., but there's not much remembering the day before. Music is the big exception: put on a song he knows, and he's there and sometimes with tears because it's so immediate and clear. My mom still brings him to movies, but I can only imagine him sitting through those lost.

My dad is also early stage. His memory goes in and out. The most obvious symptom is his inability to find the words he wants. He's reading murder mysteries instead of what would have been his usual reading: the U.S. tax code (in addition to being a chemical engineer with a Wharton MBA, he also passed the tax bar on the first try). He started out with cognitive skills to spare. It is especially hard to see a man who lived by his remarkable brains= now living with its remarkable decimation.

Every year one small wing of my extended family has a reunion in West London, where my cousin once removed lives (his dad was my mum’s dad’s brother). There’s been a three-year gap — during which time he’s been on a brief radiation-chemo regime (he’s 80) and his partner has gradually been succumbing to alzheimer’s.

My sister and my niece and I went over to visit yesterday, all double-vaxed and everything sensibly sorted. His daughter was also there — she visits often — and (very briefly) her mum also, his ex-wife. All present are on excellent terms -- these are nice, kind, interesting people — and his cancer treatment apparently worked well. He’s a little frailer than before, but he was in very good spirits, delighted to see everyone, full of stories about the past and the present, very chatty in in his always absent-minded way.

Everyone caught up with everyone’s else’s projects. Before retirement he made documentaries, almost all about art or music, mainly for the BBC, and knows or knew many fascinating people. He is getting the gang back together for one last job, a documentary which is 99% made and a touring exhibition to go with it — very interesting stuff, reasonably political in his old-fashioned left-liberal way, and I’m not saying more only bcz I’m superstitious abt going public details of projects before they go live.

Present during all of this is his partner. The last time I saw her she still evidently loved company even if she wasn’t entirely sure who we were. She’d respond to questions and join in. Her responses tended to be long, unrelated and internally disconnected digressions into her own past but they were often fascinating stories, or fragments of them — her family is Greek-Spanish, had fled Franco after the civil war and settled in the UK and the US. She wrote books for children in the 1960s.

Yesterday she hardly spoke at all, and what she did say was the ruins of language, parseable sentences connecting to nothing. Conversation couldn’t net her in or light her up — and so inevitably it went on with out her (the rest of us had so much to catch up about). She sat silently among us like an alarmed, sad child herself, who knows no one but doesn’t know where else to sit, folding and refolding a paper napkin. When he wasn’t eating or bringing out things to show us he sat beside her and held her hand, as he talked to everyone else. The decline is heartbreaking: when you catch her eye her expression sometimes comes across as a kind of blazing fury, or perhaps it’s just a blank where there was once such generous elegant intelligence, or, well, I don’t know how to describe it. I can’t stop thinking about it. I promised him I’d visit more often, now that pandemic is eased and things are a little safer. I will try and keep this promise.

:(

Such a difficult disease. I had forgotten that I had posted above when my dad was in “early stage.” He died two years ago from Alzheimers. Strange and troubling that families get a progressive dementia diagnosis and no one uses the word “terminal illness,” which of course it is. Slowly terminal. My father lived 10 years post-MCI diagnosis.

Conversation couldn’t net her in or light her up

I've seen the same happen in family gatherings. It's sad. In those circumstances conversation was going to be what everyone else wants and need in order to connect, but it's a very complex activity. If your next encounter with her is more intimate and individual, you may be able to connect better through singing together or through touch. These seem to remain accessible longer.

Before my aunt died, she would still try to join in the conversation, saying things like "Well, isn't that nice!" or "Oh my, yes, yes" "Is that so?" etc. You could see that it was easier for her to stick to these simple affirmations when I don't think she even knew who we were anymore.. it was really sad. She didn't appear to be suffering, but I think she was relieved when everybody left and she could stare at the TV.

The thing about cynicism upthread: It does seem to be true that dementia intensifies the worst parts of a person's personalities--I noticed this when I was working in the field.

the verbal/cognitive decline is different with MS and not as irreversibly terrible as it is in aging related dementia. But the brain scarring lesions that come with MS can bring similar symptoms as dementia. My partner these days has intermittent short term memory and is often coming out with the wrong words or dropping spoons in the bin or struggling quite hard to communicate clearly or at other times just loudly telling anyone who is trying to help her to fuck off! It's rough when your processor gets damaged :(

My dad (and his mother) both had it in their final decade. At family gatherings, music was always what broke through: my dad would know the words to The Star-Spangled Banner and Amazing Grace (all the verses) quicker than anyone in the room, and my last months with him involved going on drives with music he knew and loved. It grounded him, and his eyes lit up and often welled up as he connected seamlessly with the songs he loved and sang along with them. With both him and my grandmother, in their final week, on morphine and without speech, their eyes lit up when hearing music they knew.

I didn't search first and realized I wrote something similar in 2014. In my mind, he was still driving and just beginning to slip then (he died in January 2020), but clearly not based on that post.

They said that during Glen Campbell's final days, he was still able to pick up a guitar and play perfectly.. he struggled with lyrics a bit, but never lost his guitar playing.

Much love to all. It sounds so tough.

my partner has just been taken away in an ambulance after falling down the stairs after trying to carry a plate down them. I keep saying do not carry anything down, the stairs - you need both hands to grip the rails or you are going to fall again. But I always know I might as well be talking to my hand.

Thankfully nothing is broken because she has so little weight on her now, she can take these falls somehow. It's just a precautionary hospital checkup.

sorry to hear calz, i hope she's not too hurt and back home as soon as poss

sending the best calz, really feel for you all ❤️ :(

I think something drastically needs to change and some help is needed because it's the 4th or 5th time this has happened in the last year. A referral has been made and it's probably well overdue tbh.

I've had to move onto a camp bed in the living room because she keeps waking up at 2am, absolutely convinced it's still evening and putting on GB News.. lol. You have to have to laugh at these situations, because once you lose your sense of humour you are screwed!

Oh, man, calzino! 😞

Hang in there, calzino <3

I always look for positives. Like the camp bed has cured my back problem and it has got a can holder. But dementia is fucking awful, no positives there, unfortunately.

That's a lot, calzino. Wishing you and your partner the best.

I call this dementia but that isn't a professional diagnosis, because she hasn't had a hospital or GP appointment since about 2016 and this started about 2 years ago. But it is all the symptoms of dementia. I presume it will be caused by the MS brain lesions.

thinking of a rough timeline of the symptoms it goes way beyond the last 2 years, but it's just in the last two years the cognitive impairment became so advanced that she couldn't use a pc or make phone calls anymore. The watershed moment was the day she was convinced she was 16 years old and our son is actually her sister's son and they are coming to pick him up soon.

oof, reminds me of my dad who used to wake up convinced his little apartment was a major railway station and start asking when "the british woman" (his sister, who isn't british) was coming to pick him up. he was immobile then and couldn't get himself into much trouble, but the downstairs neighbor had it bad, too. he would come upstairs every day and knock on the door looking for his own sister, believing she lived there. i used to laugh at what would happen if my dad had been able to answer the door, since he thought it was a train station. i mean obviously it isn't funny. but the guy downstairs used to pack a suitcase every day, go to the airport and try to board a flight to China to see his family, and nobody could stop him. so that's what can happen when it's someone who lives alone :( wishing you and your partner all the best.

so sorry to hear that calzino, hoping the best for you and your partner.

Sorry to hear this, calzino. This sounds like sundowning (increased confusion in evening into the night), which we saw in my mom in early stages of her dementia. Sorry if this is an obvious question, but is there any way to block access to the stairway?

oh shit, that sounds rough. hope that if nothing else, they get your wife's medical and care needs sorted a lot sooner because of this

not realistically, it's a two up, two down house and she already spends about 95% of her time upstairs anyway because of the her massively reduced mobility from the MS. The stairs can still be done with two free hands as long as she doesn't decide to encumber herself with any unnecessary cargo. Hospital are sending her back tonight after some blood tests - so thus far there is nothing they need to do other than send her home.

xp nick

oh something needs to change deffo, this like the 3rd ord 4th alarm call

I call this dementia but that isn't a professional diagnosis

i'm honestly not sure what the medical establishment says re: this but IMO 'dementia' is basically a set of observable symptoms that could have all kinds of underlying causes; not all dementia is alzheimer's. my aunt had 'vascular dementia' caused by not enough oxygen to the brain, and lived that way, erratically, for years. my mother had lung cancer and her last year of life was progressively more 'dementia'-like to the point where her behavior was exactly the same as someone who had alzheimer's. anything that is impacting the brain's function seems to present in a similar manner. so you're right; it seems like dementia, it's dementia.

yeah I was thinking whatever the cause of cognitive impairment, from reading other accounts, including in this thread, the symptoms are frequently very similar.

after scan results I've just had to do a 3.40 am verbal consent form over the phone for emergency hip replacement surgery within hours, or it might be partial they haven't decided yet.

Sounds like a situation where your capacity to manage all the demands on you from caring for your wife and son is at or near maxing out. Wishing you well, but, damn, you have a heavy load to carry. There are limits to everyone's capacity. Here's hoping you all muddle through with minimal trauma along the way.

I've become pretty good at functioning under pressure these days, but one adverse side effect is any time I hear a thud or bang, which could be just the noise of a door being slammed next door or something being dropped - my heart rate uncomfortably speeds up for seconds followed by a wave of nausea. Because my brane associates that noise with either her falling over or even down the stairs or my son having an epileptic fit and falling off his bed. I think it might be a mild version of PTSD. But I never discussed this when I was in regular contact with mental health services. It's not really a big deal in the scheme of things but it is definitely a long term side effect from getting maxed out too often!