It's life Jim - but not as we know it!

White Rose

Registered User
Nov 4, 2018
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I'm just watching the other residents setting up the tables and chairs in the garden for the celebration VE day fish and chip lunch. I declined for hubby and me to attend.
They are placing the chairs approximately two metres apart but are standing together while they organise it and help each other.
But I do worry now what my husband's reaction will be when he sees them as he is bound to look through the window at some point. He'll want to know why we aren't joining in.
Well two metres apart or not, to me it is a social gathering and I think it's wrong. I hope he understands.
How did it go @jenniferjean, did your hubby notice and ask to join in? Such a shame isn't it. My partner was never very social so probably wouldn't have wanted to join in that kind of event anyway, luckily we don't really have neighbours close to us and nothing much goes on here.
 

jenniferjean

Registered User
Apr 2, 2016
925
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Basingstoke, Hampshire
How did it go @jenniferjean, did your hubby notice and ask to join in? Such a shame isn't it. My partner was never very social so probably wouldn't have wanted to join in that kind of event anyway, luckily we don't really have neighbours close to us and nothing much goes on here.
Well I need not have worried. He did notice all the people out there and I quickly explained that they were 'having a meeting' (I dare not mention fish and chips). He stood watching them for a while and then lost interest. A couple of times he went and watched them again and then came and did his usual of making up stories as to what was going on. I'm sure he does it to try and shock me. But he certainly showed no interest in going out.
 

Gerona

Registered User
Mar 25, 2020
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Some (but not all) people with dementia can get very 'sensitive' to the mood of others and will quickly pick up on any anxiety/stress. I noticed it in Mum - when I'm stressed or unhappy she picks up on it straight away and it makes her anxious but if I greet her with a big smile on my face she does the same thing and is happy and relaxed. She also hates raised voices or shouting. As all carers know, it's easier said than done to remain calm and not get stressed/anxious when caring for someone with dementia but it really does seem to work in relation to my Mum's mood. Don't feel stupid about not making the connection earlier - we're all on a big learning curve and picking things up as we go along. Fingers crossed that it helps with your husband's toilet habits.
I definitely agree with this....as long as I am light and airy my husband is the same, but he feels the stress if I am not. Such a burden to remain so, especially in these trying days. This evening for the second time is 3 days he is dealing with a ‘choking’ episode (and this has not happened for a long time) I give him a fizzy drink....that helps.....but otherwise I remain anxious.....which does not help my blood pressure. I am usually an optimistic person but I could honestly weep ?!
 

jennifer1967

Registered User
Mar 15, 2020
22,983
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Southampton
thanks for that advice about choking. my husband seems to choke on a stray bit of rice and today it was a noodle. the food was wet so i thought hed be fine. i will try that next time. its quite scary as to what to do trying tapping back etc. not just me
 

jenniferjean

Registered User
Apr 2, 2016
925
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Basingstoke, Hampshire
I haven't commented on my thread for a while and this morning seemed the perfect time to revisit it just to say that three times this morning, even before 10.a.m., I've asked myself "How long must this go on".
 

TNJJ

Registered User
May 7, 2019
2,967
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cornwall
I haven't commented on my thread for a while and this morning seemed the perfect time to revisit it just to say that three times this morning, even before 10.a.m., I've asked myself "How long must this go on".
Hi! I don't live with my dad.But I gave up work to help care for him.Monday is his 87th birthday.I have been looking after him for 4 years.He also has carers.I have been wondering "How much longer can this go on for".He is getting worse with kidneys etc .I feel awful thinking it .So I have some idea of how you feel.Everyday is a "grounding day"..(((Sending hugs)))
 

White Rose

Registered User
Nov 4, 2018
679
0
even before 10.a.m., I've asked myself "How long must this go on".
I do sympathise with you @jenniferjean - I'm asking myself the same thing and I'm lucky to have carers still. It's the tedium of knowing every day is going to be the same and their total dependence on us. I'm also feeling so sorry for him, he was such an intelligent man and to end up like this, not even able to put trousers on the right way round or do the buttons up on his shirt, heart breaking.
Did you see the Ross Kemp programme on ITV last night 7.30? It will be interesting to see how the series progresses.
 

jenniferjean

Registered User
Apr 2, 2016
925
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Basingstoke, Hampshire
It's so sad to watch things progress. I'm now used to seeing T-shirts on back to front, jumpers being worn with one arm through the neckline, and even once finding the pad on his pull-ups over his hip instead of underneath him (work that one out).
But this morning I find him sitting on the bed with both legs in the same trouser leg and him wondering why he can't walk in them. He just couldn't work out what was wrong.
I do leave him to try and dress himself as I want him to retain as much independence as possible. But it does show up the decline in his condition.
 

White Rose

Registered User
Nov 4, 2018
679
0
I find him sitting on the bed with both legs in the same trouser leg
We have that but more often he puts trousers on the wrong way round so the zip's at the back. I used to try to leave him to it but he's getting less and less able, like the other morning when two socks were put over the top of a shoe! I help with underpants, shirts and jumpers and try and leave him to do up buttons and put on trousers, socks and shoes, but he's even having trouble with buttons now, so sad. But at least it gives us a small break if they try and do it themselves and they can retain a tiny bit of independence.
 

Laura40

Registered User
Dec 10, 2017
154
0
England
My OH is a bit behind yours jenniferjean, he can still dress but I have to hide the dirty clothes as he will put them on day after day if left to and has no concept of the weather And choice of clothes tend to be a vest, shirt and jumper regardless of the temperature. The other worry is his balance always falls over putting his trousers on, I constantly have to remind him to sit in his chair and pull them up, it would be so easy to take over and help but I tell myself I can only prompt and remind I must let him keep that independence.
 

jenniferjean

Registered User
Apr 2, 2016
925
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Basingstoke, Hampshire
Well I've found that's it's surprising what you can do. Some time ago I set myself some boundaries, what I was prepared to do and what I wasn't. Things change.
For about a week I've now found myself cleaning away poo from his bottom. For a while I've found that there were dirty marks in his pull-ups but now I've found that his cleaning himself has deteriorated. Within a matter of days I've organised a system with baby wipes and plastic sheeting on the bed at pull-up changing time, and I'm coping. I never thought I would. At first he didn't like it but he's had to accept it. I'm giving myself a pat on the back.
 

jennifer1967

Registered User
Mar 15, 2020
22,983
0
Southampton
Well I've found that's it's surprising what you can do. Some time ago I set myself some boundaries, what I was prepared to do and what I wasn't. Things change.
For about a week I've now found myself cleaning away poo from his bottom. For a while I've found that there were dirty marks in his pull-ups but now I've found that his cleaning himself has deteriorated. Within a matter of days I've organised a system with baby wipes and plastic sheeting on the bed at pull-up changing time, and I'm coping. I never thought I would. At first he didn't like it but he's had to accept it. I'm giving myself a pat on the back.
a well deserved pat on the back. it surprising how much we can cope with with this horrible disease.
 

White Rose

Registered User
Nov 4, 2018
679
0
Well I've found that's it's surprising what you can do. Some time ago I set myself some boundaries, what I was prepared to do and what I wasn't. Things change.
For about a week I've now found myself cleaning away poo from his bottom. For a while I've found that there were dirty marks in his pull-ups but now I've found that his cleaning himself has deteriorated. Within a matter of days I've organised a system with baby wipes and plastic sheeting on the bed at pull-up changing time, and I'm coping. I never thought I would. At first he didn't like it but he's had to accept it. I'm giving myself a pat on the back.
So funny reading your post @jenniferjean because I had been thinking the same myself - maybe I wrote it somewhere on here. Like you, I'm finding I have to clean my partner's bottom lately because he's forgetting to do it. Something I NEVER thought I would do. 2 years ago I would have said to you that's where it ends for me, care home here we come but here I am cleaning his bum!! So if you don't mind I'll take a pat on the back as well. Actually he's gone in for respite for a couple of weeks, lovely care home and he had a Covid test of course before going in. Very weird not having him around but it's so nice to have a break and get all the things done that I don't normally have time for.
 

Laura40

Registered User
Dec 10, 2017
154
0
England
We are at this stage now, but he won't let me yet. Just carried out a toilet cleaning shop! Haven't a working shower at the moment so struggling with a hand shower on bath which everytime explodes the second the water pressure reaches a useful amount.... But today in Wilkos I discovered a handset that has straps to stop it coming off the taps. Can I admit to my excitement...
 

jennifer1967

Registered User
Mar 15, 2020
22,983
0
Southampton
yep when you get something that you thought didnt exist. have thought of mixer taps that are install where the taps are and have a tube like a shower. we had one just dont flush the toilet or turn on another taps as its very cold or very hot cant remember which. we have decided to get a proper chair for the bath for our shower as im finding it hard to stand due to the sciatica i cant stand for long at at all and it wont go to waste as my husband can use it as well. just relief hope you enjoy your taps laura40. i sometimes wonder whether i can talk about the little things that make life enjoyable and put a smile on our faces put a smile
 

jenniferjean

Registered User
Apr 2, 2016
925
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Basingstoke, Hampshire
I decided this morning to go back to my post on here and read up on what has been happening and how things have changed since I started this post.
I think this is because I was having to strip and change the bed at 4 a.m. this morning and haven't been back to bed since. He's still fast asleep.
But I've also been catching up on everyone else's posts and it's sad to read. Many of us are at different stages of the disease, so it's good that we can help each other. But isn't it strange that a lot of our doctors and other medical staff are totally unaware of how things are. I'm not saying all, but most of the ones I've come across are.
My husband's present problem with toileting is being unable to fully pass his stools and I'm having to clean them away. He does't realise they are there, (they are quite loose) and is assuming he has toileted them correctly. (This is the quickest and easiest way of explaining here what is happening).
Well I recently contacted the surgery as a friend had suggested that it could be a muscle thing and that she recommended Linoforce which is a combination of linseed and senna. I had a call back from the surgery and a nurse said that linseed would be a good idea but not senna as that would make his stools even looser. Anyone else had experience of using linseed?
She asked me if I had contacted my Alzeimers nurse. My response was I didn't know we had one. So she said she'd put me in touch. How come no one from the surgery has mentioned this to me before. Well I wonder if I will get a call back now.
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,332
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Nottinghamshire
I had the wet bed problem with my dad @jenniferjean . At one point I was putting a disposable pad over a washable kylie over a waterproof mattress cover and still having to strip the bed everyday and dad was in pull-ups!

Do you have any help with your OH? It sounds as though you need some.