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Mum persistently crying and sobbing. How to deal with it?

lollyc

Registered User
Sep 9, 2020
206
0
Yes of course. I have tracked down the anthropologist I mentioned. If you google margaret lock 2014 the Alzheimer’s conundrum u tube you can see her interviewed, it’s tough and a very different perspective. Well worth a look. It’s not that using the brain wears it out, just some brains are kind of predestined to go early.
Warmest, Kindred
I think this is why it's unhelpful to suggest that dementia could be prevented by learning a language or instrument, or doing crosswords. By extension it implies that those blighted by this cruel disease have somehow only themselves to blame. As if dementia wasn't **** enough! I firmly believe my Mum's dementia (she has a non specific dementia, not Alzheimer's) is due to delirium. She broke her hip, had delirium and within 8 weeks went from competent and capable , to unable to live independently. This article " https://www.cam.ac.uk/research/news...ing-new-dementia-eight-fold-in-older-patients" seems to suggest that it is a distinct possibility.
 

jennifer1967

Registered User
Mar 15, 2020
3,118
0
Southampton
writers as well terry pratchett, iris murdoch who dictated her books to her husband to write down in the end and prunella scales. i watched her on narrow boarding with her husband i think tim west. you could see in her eyes that she was disappearing they are sort of vacant a bit like barbara windsor in later photos when she was campaigning for more money for research.[her husband]
 

lushr

Registered User
Sep 25, 2020
119
0
such an interesting conversation, of course i can only speculate on why my mother got alzheimer’s but my psychologist made a comment about worriers and ruminators....

my mum was trapped in anxiety, it feels like she has ended up where she was always destined to end up, a textbook case of someone unable to respond to therapy, severe depression and anxiety keeping her from making good choices to get better... worrying herself to death anout anything she could think of, depending on others for her happiness....

it’s not a pretty picture..... and i have been talking to people whose mums were a lot like mine and went the same way so i have the impression mum is not alone.

but it sounds like all kinds of people arrive at the same destination from different roads.

all i can do is avoid following my mother’s path, it made her very unhappy. at the very least i can try to avoid that. get therapy, be self aware, learn to worry a lot less. she’s the only one in a family of seven to have dementia. the middle child. even her parents didn’t get it. she was the physically fittest of them all. still is. fitter than me.

im so glad many of you have a christmas connection. let’s hope 21 brings us fresh hope. and atleast a short respite from the ”gifts” this illness brings us.

i think for me, if i find i’m having trouble driving a car, and living independently, i’ll need to kick myself into gear and take things into my own hands. but more likely my social hermit ways and depression and anxiety will have me holed up here in my apartment until someone hauls me off to a nursing home.... frankly i’d rather get cancer, or have a heart attack. i think i’ve said that before. i know neither of those deaths are easy either... there definitely aren’t easy answers. especially when it comes to dementia.
 

Banjomansmate

Registered User
Jan 13, 2019
2,708
0
Dorset
I have told my children not to worry if I catch coronavirus and die because I woul rather go now than in ten years time with dementia!
 

She-Luna

Registered User
Jun 30, 2020
19
0
There are some very interesting posts here. I confess to being a bit 'nerdy' regarding some things and love to read science books, especially relating to medicine, disease, genetics (and the history of them). My Mum is 97 and has been in a care home for a few weeks, she had a marked decline in her symptoms in 2020, and a dramatic one since October. She was diagnosed firstly with mild cognitive impairment, after tests and brain scan, late in 2019. My first concern was to find out as much as I could (from a 'scientific' viewpoint, but that isn't easy!) This forum is the best way to find out that, even with an 'Alzheimers' label, Mum wasn't going to have the same path, symptoms or outcomes as anyone else. Will her age mean the progression is 'faster'? Will her reduced mobility mean a steeper decline? (she's already had a couple of falls in the home). Is her heart likely to give up first? I don't know and am trying not to obsess too much...
 

lushr

Registered User
Sep 25, 2020
119
0
There are some very interesting posts here. I confess to being a bit 'nerdy' regarding some things and love to read science books, especially relating to medicine, disease, genetics (and the history of them). My Mum is 97 and has been in a care home for a few weeks, she had a marked decline in her symptoms in 2020, and a dramatic one since October. She was diagnosed firstly with mild cognitive impairment, after tests and brain scan, late in 2019. My first concern was to find out as much as I could (from a 'scientific' viewpoint, but that isn't easy!) This forum is the best way to find out that, even with an 'Alzheimers' label, Mum wasn't going to have the same path, symptoms or outcomes as anyone else. Will her age mean the progression is 'faster'? Will her reduced mobility mean a steeper decline? (she's already had a couple of falls in the home). Is her heart likely to give up first? I don't know and am trying not to obsess too much...
I think we all go through that phase. How long will they live, when will they find a cure.

I told one of my doctors that a cure I thoughts was at least a couple of decades off but she seemed much more optimistic.
The thing I keep reading in the media is that social connection is the number one way to live a long and happy life. And I can’t help think the isolation of the pandemic is what has rushed many on to an untimely decline.

the best person to give me answers about my mum was the gerontologist at the nursing home. So perhaps you will get some answers there to rest your weary head!
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
Dreadful visit with mum yesterday. The Perspex screens have appeared again and with us sitting with masks on the other side it must be so frightening for mum as it's bad enough for us to get our heads around it, let lone a person who doesn't understand what's going on. You just can't have any real conversation as mum can't hear but it's all done with safety in mind of course.

Strange how so many things are forgotten but at the same time the same things keep getting said., Mum says she hates it there and wants to go home but then changes her mind a few minutes later. She keeps talking about two brothers who run the place and they take her to the cinema. Who these two brothers are I haven't got a clue because two brothers don't own the place, but she speaks about these "guys" every time we go to visit and I would love to know what's popping into her head.

One thing I do want advice on though as it's very awkward. A couple of months ago I visited and mum was going on about a disgusting bloke who "touched her boobs". I let it ride on that occasion but saved it in the memory bank in case she mentioned it again. Yesterday when we visited again she mentioned that someone had "touched her boobs and they were disgusting doing that". A lovely nurse was sitting with mum and said it probably comes from when they are getting mum dressed or changed and I know mum isn't the easiest to accept help and fights it. We had to get her some new "support tops" because with her weight loss and age her old bras don't fit and she refuses to wear sports bras. However my sister is quite worried that something untoward may be going on either with a male resident or that mum is not comfortable with male nurses helping her dress. I can imagine that it's a blow to anyone's dignity if they require help to get dressed and personally I don't think anything untoward is going on but we have all seen those horrible TV programmes on some care homes and how on earth do you approach the subject with the home as you don't want to ignore anything your mum is unhappy with even if it is "imaginary"? Thoughts welcomed.
 

jennifer1967

Registered User
Mar 15, 2020
3,118
0
Southampton
could you ask if a lady carer could wash or get her dressed. maybe its when they put her bra on could your mum wear vests then theres no putting boobs into a bra if you see what i mean. i couldnt have a man wash or dress me. it could be innocent but mum didnt like it and is holding on to that thought. keep an eye on situation when you next visit as the carer with her would have reported back to other staff when she heard your mum say it.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,346
0
High Peak
I know those two brothers! I'm pretty sure they owned mum's place too and took her to Blackpool and to the football match. They later morphed into her two sons who lived in America but visited her every day. Whenever I visited I'd just missed them unfortunately...

Mum also had odd inventions such as workmen coming into her room in the morning to get changed. Apparently they thought nothing of waving their members in her direction... :eek: Like you I worried about such things just in case there was a grain of truth in there. You do, don't you? But it's good that what your mum said was in front of a nurse so it's kinda 'out in the open' now. I'd suggest you note it carefully but I wouldn't talk to the management at this point. See if it continues...

My mum was like yours and came up with the most bizarre confabulations and delusions. A lot of stuff was just weird and really didn't matter but occasionally she'd say people had been pinching/hitting her or they wouldn't give her any food as a punishment for something and although you take it with a pinch of salt, you can't help thinking, 'Is there actually any truth in that...?' So I completely understand how you feel!
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
Thank you both I'll keep an eye and ear out and see what she says next time. That's right my sister got her some supportive vests and she said you apparently have to "fit" into the cups so that's probably what it is although as you say you do get some worrying visions yourselves. I can't fault the home at all so pretty sure nothing sinister is going on. Mum says several things like if she stays too long someone will steal her bed, or someone has stolen the contents of her handbag, which of course they haven't because all the important stuff I have and we just placed bits in her handbag that doesn't matter if it goes walkabout.

I find it very odd how the brain works. I told her about a phone call from dad's best man and she told me the story of who he was and how he and dad met. All absolutely spot on. Then in a minute she talks about these two brothers taking her to the cinema and it's like huh, how does she go from perfect reality one minute to absolute fantasy the next?!
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
Well had a phone call over the weekend to say mum had tested positive for Covid. Two carers tested positive last week so not a surprise and the home did well to keep it out for nearly a year. Mum is ok bar a slight lack of appetite but no idea how long she has had the infection. Residents tested once a week, staff twice a week from what I can gather. Nervy couple of weeks coming I guess,
 

lemonbalm

Registered User
May 21, 2018
1,375
0
Covid at my mum's care home too, just under two weeks after their first vaccine jab. Several residents including mum and several staff. This is the first outbreak for them too. Residents have been tested once a month and staff once a week. I hope your Mum's ok @Max68 . The residents at mum's care home seem to be doing better than expected so far, so perhaps the vaccine helped a little, although not enough time for real protection.
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
Covid at my mum's care home too, just under two weeks after their first vaccine jab. Several residents including mum and several staff. This is the first outbreak for them too. Residents have been tested once a month and staff once a week. I hope your Mum's ok @Max68 . The residents at mum's care home seem to be doing better than expected so far, so perhaps the vaccine helped a little, although not enough time for real protection.
Thank you. All the best to your mum as well. Mum had the vaccine on Wednesday but tested positive on the following Saturday. Can only imagine it's this new more transmissible strain and this thing must be transmissible by asymptomatic people because I can't imagine carers going in if they had symptoms. Not sure who is in a worse position. Those whose relatives have tested positive or the half whose relatives haven't tested positive as how on earth do you keep dementia residents in their rooms! Doesn't bear thinking about.
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
Well after a rollercoaster few weeks mum seems to be getting over Covid. Several phone calls over the weeks advised us that she wasn't eating and drinking and refusing her medication and that end of life care was a possibility, especially as she picked up a urine and chest infection. We were literally making plans when we were informed Saturday that mum was responding to the antibiotics (not sure how they got her to take them!) and she was eating and drinking again and spending time in the lounge (assume obviously she is no longer infectious) and is more alert and comprehendible. She has lost 7.6 kg last month so the GP is putting her on a Foodlink diet supplement to help to increase her weight. What an unpredictable disease it is. I know they have lost residents at the home and in the general population far younger and fitter people have sadly died but mum with dementia, atrial fibrillation, borderline diabetic and 85 seems to have come through albeit with quite a battle.

Obviously in many ways we are happy but at the same time she still has dementia which will only get worse, if it hasn't already due to the Covid so I suspect "recovery" is the wrong word. It's awful to say but if they had called to say she had gone peacefully in the night it would have been devastating but tinged with relief for her,. So I know this must sound awful but it's difficult to know what you feel. One the one hand pleased and relieved that she is still here but then you realise she is still suffering and that's only going to get worse. A strange place mind wise to be when you just want what's best for her.
 

lemonbalm

Registered User
May 21, 2018
1,375
0
Hello @Max68

Same here and no, that doesn't sound awful at all. Mum, at 90, seems to be staging a come-back after weeks of not eating and barely drinking, and being referred to the end of life team. I felt the same as you - on the one hand in pieces and on the other ready to let her go. She didn't seem to be suffering and it wouldn't have been a bad ending, just peacefully fading away.
 

canary

Registered User
Feb 25, 2014
14,896
0
South coast
This seems to happen more often that you might expect in people with dementia. I was told three times that mum was at end of life, only for her to bounce back each time.
 

Elaine65

New member
Dec 31, 2020
6
0
Hello all,
I've just been reading through all these posts and it is ringing true to my situation at the moment. My previously independent and strong mum has declined rapidly with dementia. This is following a fall originally in her home, this set off a string of events with her being transferred from hospital to respite care and then hospital again after breaking her hip in respite care home. It seems to be a cruel string of events just adding more distress to her and increasing her confusion.
To cut a very long story short, I finally got to visit her today in a small respite hospital. To say I was shocked is an understatement. She was wheeled into the room, she didn't recognise who I am. Most of the time she was asleep, the rest of the time she sobbed and pleaded to go home, it was impossible to talk to her as she couldn't hear and just seemed to be looking round for something. I ended up getting very upset and was grateful for a very understanding nurse who took her back to the ward. She is undergoing an assessment to see if she will be returning home or to a care home it was originally thought she may return home with a care package, but now the social care team have deemed that she hasn't capacity to decide what she wants so I am hoping she will go into a care home as I cant see her coping at home. I am left feeling guilty as I dread visiting her again, she is 91 now and I'm worried how long she will have to suffer with this cruel illness. She always said she would rather die than go into a home but I cant see any other alternative. Ive been in tears since I came back from the hospital but I feel like I've got it off my chest now. Thankyou for reading.
 

Max68

Registered User
Aug 21, 2018
113
0
Sussex
Thanks all glad it's not just me that feels that way. Even mum said at various visits that she doesn't want to be here anymore so you wonder why the body still fights!

Hi @Elaine65. So sorry for your situation. First and foremost you have nothing at all to feel guilty for. We all "think" we can/should do more when in reality there is little more you can do than you already do. So try and learn to forgive yourself for any thoughts you may think as negative as this is a disease where it affects families as well as the sufferer. Have you asked if your mum may be suffering from delirium? My mum suffered this in hospital and only days prior had been living on her own. Delirium makes confusion and recognition etc even worse and sometimes the person may bounce back but as in my mum's case there was some recovery but the dementia took a drop due to the delirium. So worth finding out if that's the case. Have you also got a social worker specifically for your mum? You may have some battles with them as they seem (in my experience) focused on getting the person back at home if possible whereas in reality this is not the best thing for them. It's very tough so if you need any advice please ask as there are a lot of good people on this forum.
 

Everest1969

Registered User
Jan 9, 2021
42
0
So many familiar stories here- especially when it comes to how it feels to watch the decline of someone with dementia. @Elaine65 -I've not visited my parents yet, but guilt and dread is what I feel when I call them. Rationallly, there is nothing I can do to improve their situation, but it is still awful and stressful. @Max68 I too find myself partially wishing my mum would go peacefully in her sleep, because I can't see her ever adapting to this new phase of life. Being adaptive wasn't in her personality before dementia, so I can't see it developing now. My mum is 85 and her mother, aunts and grandmother all lived well into their 90s , so I need to find a way to deal with the stress of seeing her so persistently miserable.
 

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