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Trekking along the dementia trail with mum

Sarasa

Volunteer Host
Apr 13, 2018
5,008
0
Nottinghamshire
I do like reading about you and your mum @Up the Creek. As @lemon Balm says you seems to have worked out how to keep her entertained and happy. The **** book idea sounds great. I'm also glad you didn't have any bother about her 'friends' not getting their Christmas cards either.
Now sounds a great time to introduce some care that can be increased when needed. Maybe pretend it's for your benefit rather than your mums.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,394
0
High Peak
I do like reading about you and your mum @Up the Creek. As @lemon Balm says you seems to have worked out how to keep her entertained and happy. The **** book idea sounds great. I'm also glad you didn't have any bother about her 'friends' not getting their Christmas cards either.
Now sounds a great time to introduce some care that can be increased when needed. Maybe pretend it's for your benefit rather than your mums.
I'm guessing you missed an S and got censored @Sarasa

I'm sure the book won't be that bad 😁😲
 

Sarasa

Volunteer Host
Apr 13, 2018
5,008
0
Nottinghamshire
Ooops, the censoring thing is quite fun if annoying when I wasn't intending to be rude, and I'm sure the book will be lovely. I brought one a while ago, a scrapbook that is, with the idea of putting some photos in for mum. Mum's eyesight is very bad and I don't thinks she could actually see the pictures, but I thought with captions at least the carers might have something to chat to mum about. I've collected some photos, but done nowt about it. Maybe I should go and do that now as I'm off to see mum tomorrow.
 

Hayley JS

Registered User
Feb 20, 2020
301
0
Your **** book thread gave me a giggle and an idea my mum might like one too. I have one that a friend got me years ago and I've never used, time to dig it out and see. Thanks for the smile & the idea 😁
 

Up the Creek

Registered User
Sep 9, 2020
99
0
East Anglia
It’s three weeks on from my last update, where has the time gone?

Mum’s still keeping herself busy and has spent most of the last few weeks reading. Card making has been put away and scrapbooking hasn’t really taken off yet. She has plenty of things to stick on the pages but I’m wondering if there is too much blank page and she doesn’t know where to start. I have bought her a dementia friendly coloring book and 35-piece jigsaw for her birthday. I know she will be enthusiastic with the colouring book and the jigsaw is more an activity for when I am able to get a companion-type carer to start visiting.

We haven’t had any house guests since Bob the cat’s visit back in September however we picked up a couple of hitchhikers when mum had her Covid vaccination at the surgery on Saturday…we now have the nice woman and man on the front of the ‘a guide for older adults’ staying with us :) I was starting to feel bad that she didn’t have anyone other than me to talk to (or my other me who is occasionally here). I have a good explanation for when it’s time for them to leave, they need to go back to the surgery to help the next people being vaccinated. But they can stay for now.

A couple of weeks ago I went to see if she fancied a cup of coffee and found her on the bathroom floor unable to get back up. It took best part of an hour to get her to crawl through to the sitting room and then bit by bit, cushion by cushion to get her back on the sofa and upright again. I think she needed to go to the toilet, but because she had been sitting too long that she couldn’t get to her feat, or they wouldn’t weight-bear so crawled through to the toilet, thinking once she was there, she’d be able to get back up off the floor. She hadn’t wanted to disturb me so hadn’t called out. I have now invested in an emergency lifting cushion to make rescue and recovery a bit quicker (there is sure to be another time when she will need picking up off the floor)

Do you remember my concerns that mum would want to physically hand Christmas cards to her TV friends? The day before her birthday she looked at the clock/calendar and declared ‘it’s my birthday tomorrow, I must find a way to let xxx (her favourite TV friend) know’. I distracted that thought with the offer to make a cup of coffee. However, that evening I made the mistake of putting on a DVD with xxx in it. After a while I could see her writing something out of the corner of my eye. She then stood up and held the note out towards the TV. :oops: Fortunately, the scene changed, and she sat down and didn’t try again. I sat staring at the TV trying to come up with something to say in reply to anything she might say, but she said nothing

Sunday, the day after her Covid vaccination she was very achy, sleepy and headachy and dozed a fair amount of the day (it only lasted 24 hours). Towards the evening I could hear one of her hearing aids squeaking as if was falling out of her ear. I got her up off the sofa and searched around but couldn’t find it, shook all her clothing and then she took it out of her mouth…’is this it?’ I give her a small bowl of mixed nuts each day to snack on. The hearing aid must have fallen out while she was dozing and she must have seen it and thought it was a cashew nut! It was probably the moisture from trying to eat it that made it squeak. Supposing she had swallowed it? I would have had to order a replacement as there is no way I would wait for it to reappear :eek:

It is now a year since mum first saw her doctor and had her referral to the memory clinic. She has a telephone appointment in two weeks for a dementia check-up. Looks like our surgery is reasonably proactive in keeping in touch with their dementia patients. I’m not sure how mum will feel about the call or what questions will be asked. Maybe I will get an extra nice lunch ready to make her feel better once the call has taken place. While we don’t mention the word at home, we can’t pretend it doesn’t exist because it ain’t gonna go away, is it?
 

angelict

Registered User
Jan 16, 2020
154
0
You're doing a grand job my Mum isn't on any meds good luck with the phone call. Another helpful service to ring is Admiral Nurses 0800 888 6678. Take care
 

Banjomansmate

Registered User
Jan 13, 2019
4,139
0
Dorset
The pleasant couple you mention arrived at my house today, somehow they came through the letterbox! :D I must make an appointment!
 

Sarasa

Volunteer Host
Apr 13, 2018
5,008
0
Nottinghamshire
I do like hearing about your mother @Up the Creek. You're doing a grand job at keeping her happy. Eek about the hearing aid. Not only a pain if she 'lost' it, eating a battery wouldn't do her power of good either.
 

Up the Creek

Registered User
Sep 9, 2020
99
0
East Anglia
Warning long post

I haven’t posted here for some time but read the forum every day. Occasionally in the intervening months I have thought I must update my thread, but somehow it hasn’t happened.

Mum had her first covid jab, suffered several side-effects and with a (coincidental?) shift in her dementia I reverted to hand-writing daily events.

207 sides of A4 paper later and continuing with the analogy of my thread title, up until the start of this year, my trek has been meandering along plains and foothills with the occasionally rocky outcrop to find a way around. The meandering is coming to an end, there’s jungle ahead (still a little way off, maybe). Though I haven’t yet required any assistance from sherpas, my next step after this update is to make that call. I have managed to step over one or two lines that were on the original map, but there are now cracks that require more like a leap to cross, and I think there’s a big chasm probably before we reach the jungle. If I look through binoculars, that chasm looks close enough for me to touch.

So why am I here now?

Those who have read my thread know that my mum’s mixed dementia mainly manifests itself in delusions and fantasies…people on the TV and in books and magazines are real people to talk with. She has had several boyfriends/love interests, but one by one, when her love is unrequited, she moves onto the next candidate. So-and-so was going to take me out/phone/write/call in and hasn’t. I’m not going to be treated like that any longer…

Towards the end of the year (2021), I had started checking through her People’s Friend magazine before giving it to her, un-airbrushing the pictures of men I thought she would attach herself to…it’s amazing how much print you can remove with a pencil eraser! As a replacement I introduced her to a fluffy toy cat, I’m not sure where it had come from, possible she had won it but put it aside. She turned her attention and affection to the cat, and over Christmas I added a dog and at Easter a koala bear.

Although this stopped her flirting with all and sundry on TV or in her magazines, it introduced another problem in that she wouldn’t stay in bed at night, she had to make sure ‘her children’ were ok and would be up at all hours of the night (her concept of time has in the main gone. She can see it’s 2 o’clock but 2am or 2pm doesn’t mean anything – ‘mum, it’s still the middle of the night, look it’s dark outside’ ‘So you say’ is her reply) This has been partially resolved by getting her to take them up to bed with her each night, but she still won’t stay in bed if it ‘feels’ the right time to get up. Not helped this time of year with the sun rising at 3.30am

And now onto the latest development

She has been happily reading People’s Friend annuals but a month ago came across one that covered Big Band musicians…and there before her are A6 size pictures of some of the greats and she has become besotted/mesmerised/transfixed with two of them (she is down to just one picture because in her flirty state one evening she had written ‘tonight’ across the picture, thought better of it and in trying to undo what she had written, ended up making a huge whole in the picture and obliterating the face.) Initial smiles and chatting/whispering developed two weeks later into stroking and kissing the pictures. If I passed any comment, she’d whisper to the pictures ‘…she just jealous’

Last week I was stunned (I think this is the right word) to see her start snogging the picture. Not just a closed lip, long kiss, this was lips open and tongue licking the page of the book. Wipe saliva of page and repeat. This went on for half an hour, she seemed oblivious to me being there and when I questioned ‘Mum, are you licking that page?’ I got a ‘I’m minding my own business’.

That night, I tucked her up in bed, switched off her light and shut her door, got into my own bed. Within minutes her light switch went on and she started chatting. I gave her 15 minutes, she didn’t stop, so I went to ask her to please stop talking. She was sitting on the edge of her bed, her nightdress buttons undone, and she was showing her breasts to the picture in her book. Ok, don’t overreact…take book from her hands, put it on the table, do her buttons back up, ‘oh mum, all your buttons have come undone’, get her back into bed, switch light off, shut door, get back into bed…and lo and behold the talking starts up again. I’d been awake since 2.30am that day and I was desperate for sleep. Three times I went back and asked her to please stop talking and eventually I had to go and sleep on the sofa.

To some extent I wasn’t that shocked to see her, the snogging she was doing earlier in the day left no doubt what she’d like to do next if she could. On several occasions I have heard her whisper to ‘boyfriends’ ‘give her a few minutes to get into bed and then come to my bedroom’

I’m at a loss as to how to handle this and I was wondering if anyone has encountered something similar with their female PWD and what they did about it, or if anyone has a suggestion as to how they would tackle it.

On the one hand, she is happy in her own little bubble of reality, and it isn’t causing anyone any harm (though I do wonder if spending 12 hours a day staring and whispering etc to a picture is good for her). It bothers me because it’s not nice seeing your mother behave like this. Any friend snogging the face off someone we would tell them to get a room. She seems to have time-travelled back to late teens/early twenties.

I haven’t(fortunately) witnessed a repeat performance (there is no way I am going back into her bedroom once I have shut her door at night) but I have seen her toying with her top, smiling at the picture and whispering ‘this one?’ ‘This one?’ ‘This one? as if pointing at buttons. There are comments like ’we can’t do anything in front of her’

Yesterday, she was pulling down the waistband of her skirt and I was wondering if it was too tight/uncomfortable but then she got that smile on her face and dug deeper to pull up and show the book the top of her lace knickers (well, Tena pullup to be exact). I felt like a voyeur, she is oblivious to me being there. I looked straight at her, started to laugh and shake my head and she just looked blankly at me for a few seconds before closing the book.

Any thoughts? She’s on memantine and I wonder if an increase in dosage might help reduce the delusions?
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,448
0
Yorkshire
Hi @Up the Creek
Tricky isn't it .... as you say, your mum is harming no-one but is it actually good for her to be so caught up
Personally, I think I'd find a way to misplace the photo ... though from what you write, your mum will find another suitor ... so have a chat with the doctor as a tweak of meds or something new may help
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,394
0
High Peak
Well, come on - you have to admit that band leader is pretty hot....

I do admire your tolerance and forbearance @Up the Creek and enjoy reading your lively accounts. Other than keeping us entertained and your mother entertained, are you getting any time for yourself? It doesn't sound like it. Is there any chance you can get your mum into respite care for a few weeks to give you a break? Obviously she's not going to jump at the chance of going (unless you tell her it's full of handsome men...) but maybe the boiler could develop a leak or something like that, necessitating her going away for a little while until the work is finished...

Other than that, I'd suggest you tell her GP about the sexual antics and loss of inhibitions as there may be something they can prescribe that would reduce her urges somewhat. Perhaps more Memantine, though increased dosage sometimes causes more issues than it solves. Sometimes a bit less is better...

As you've had some success with the cuddly animals, could you get her a similar one that was more of a 'person' in appearance, so she could talk to that? I'm sure there are some out there but the only ones that immediately come to my mind are Bert and Ernie and they'd probably prefer each other to your mum (if rumours are to be believed) so perhaps not a good choice. Postman Pat? Fireman Sam? There's always SuperMario but I'm not sure I'd want to be witness to your mum stuffing that down her Tenas.... (The mind boggles.)

Apologies for the dark humour and lack of any decent suggestions...
 

Up the Creek

Registered User
Sep 9, 2020
99
0
East Anglia
Surprise, surprise, the memory clinic and doctor haven't come back to me with a suggestion/solution, not for this nor the sleep deprivation I suffer.

I did think of a solution for the latter, renting out my drive to a motor home, rent free for me to be able to sleep in it.

Maybe I should research the availability of something like bromide to put in her hot drinks.

Would me walking around the bungalow in a negligee make her want to keep the book shut so the eyes of her lovers can't see me?

I have just had her shout at me for saying to her that I would help her wash her hair later (clearly inappropriate comment in front of the picture in the book) She doesn't need it washing, she isn't going anywhere. It's now four weeks, and you know what, I don't have the energy to care what she looks like.

The positive from today's outburst is that I have just this minute contacted a local agency to see if they can offer a companion service.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,394
0
High Peak
I think part of the problem is that to a medic, your mum's behaviour comes under the 'isn't that fascinating?' category, which in many ways it is. They read a description and think 'That doesn't sound too bad - quite funny really'. What they don't seem to do is consider what effect these behaviours actually have on you (and your mum) in just getting through each day. It's enormously frustrating. I think many of us have thought, 'If this consultant had to spend 24 hours with my mother, he/she would take immediate action,' but instead we get fobbed off, told we're doing a great job, etc.

It's really not good enough. If you're getting the impression that the medics don't care, that's because... they don't. The MC is only concerned with making an initial diagnosis. The GP doesn't understand dementia and considers it the responsibility of the MC anyway. And I don't understand why they think daughters have magic powers and that somehow, even when medics have failed, they turn to us to sort out our mothers when they cannot. I remember an occasion when mum was in hospital and was kicking off big style. They phoned me and insisted I speak to her to calm her down. I was amazed. Mum and I had never been close and she would not have obeyed me in any way, even before dementia. At this point she was thoroughly delerious and extremely angry. What they needed to do was get a couple of security people in to deal with her, and/or doctors with tranquilisers. Instead they phoned me! I told them straight I'm afraid - 'This woman is completely mad and out of control. She needs urgent medical attention. I have no experience of handling mad people - what is it you expect me to do that you can't? She might be my mother but it isn't my fault, nor is it my responsibility to sort it out...'

But I digress. What you're doing (getting a sitter) is definitely the right thing. If the medics can't/won't listen and help, you'll have to get carers in (in some form) to share the problems. You really need a break from this.
 

Helly68

Registered User
Mar 12, 2018
1,293
0
@Jaded'n'faded - I am totally with you on this.
When my Dad went into hospital, he had to wait a very long time to be assessed. I was not able to go with him because of COVID but subtly let the ambulance crew know he had dementia.
Fast forward to the small hours of the morning, hospital ring, asking me to come as "they may have lost him". (He was quickly found by a security guard and returned to A&E).
I arrive to find him agitated and determined to go home. The staff ask me to "keep him there" until a doctor has come to determine him fit to go home. I say I will do my best......
Not the best few hours of my life. I agree with the view above, - just because he is my Dad, does not mean I am any better equipped to deal with him.
Same issue a week or so later when he had his pacemaker fitted. Initially sent away from the ward, then asked to go back when he got agitated. This despite me telling them this would happen. Good job I stayed at the hospital in case this happened.
I find it o sad that so few medical professionals have a clue about the reality we face. I think all you can do is keep emphasising the issues that a vulnerable person, needing safeguarding, faces.
 

lollyc

Registered User
Sep 9, 2020
800
0
I think part of the problem is that to a medic, your mum's behaviour comes under the 'isn't that fascinating?' category, which in many ways it is. They read a description and think 'That doesn't sound too bad - quite funny really'. What they don't seem to do is consider what effect these behaviours actually have on you (and your mum) in just getting through each day. It's enormously frustrating. I think many of us have thought, 'If this consultant had to spend 24 hours with my mother, he/she would take immediate action,' but instead we get fobbed off, told we're doing a great job, etc.

It's really not good enough. If you're getting the impression that the medics don't care, that's because... they don't. The MC is only concerned with making an initial diagnosis. The GP doesn't understand dementia and considers it the responsibility of the MC anyway. And I don't understand why they think daughters have magic powers and that somehow, even when medics have failed, they turn to us to sort out our mothers when they cannot. I remember an occasion when mum was in hospital and was kicking off big style. They phoned me and insisted I speak to her to calm her down. I was amazed. Mum and I had never been close and she would not have obeyed me in any way, even before dementia. At this point she was thoroughly delerious and extremely angry. What they needed to do was get a couple of security people in to deal with her, and/or doctors with tranquilisers. Instead they phoned me! I told them straight I'm afraid - 'This woman is completely mad and out of control. She needs urgent medical attention. I have no experience of handling mad people - what is it you expect me to do that you can't? She might be my mother but it isn't my fault, nor is it my responsibility to sort it out...'

But I digress. What you're doing (getting a sitter) is definitely the right thing. If the medics can't/won't listen and help, you'll have to get carers in (in some form) to share the problems. You really need a break from this.
@Jaded'n'faded , you are so right. So much of dementia behaviour probably sounds trivial to an outsider: They talk all the time, believe people on the television are real, think you have an additonal imaginary sibling.....etc. etc. etc. Ho. ho! Isn't dementia funny? Aren't you just making a bit of a fuss over nothing?
Of course, for the carer, it wasn't funny to start with, and when you are subjected to it day after day, it becomes seriously unfunny.
 

SweetPepper

Registered User
Feb 3, 2022
83
0
Up the creek I feel your pain. This week I had to call the Police out to my mum as during our 10am phone call she was convinced a man she’s obsessed with (who is 40 years younger than her and lives in Europe) had flown in to see her, walked and hitched to her house through the night, tapped on her door and was now asleep in her bed. It was all unlikely but feasible - I rang the GP who said ‘safeguarding, call 101’, and the Police arrived within 30 minutes, blues and twos going. Mum couldn’t remember anything she’d told me.