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

jenniferjean

Registered User
Apr 2, 2016
895
0
Basingstoke, Hampshire
Good luck with @jenniferjean. I hope you find them useful.
@Izzy , I just wanted to let you know that so far, so good. He's been in his sleepsuit for five nights now and we've not had any wet beds. (I hope I'm not speaking too soon). I am getting up to take him to the toilet a couple of times a night but have found the sleepsuit easy to take down each time. His pull-ups are not completely dry in the mornings like they used to be, they are just a little damp which seems more normal. I have now ordered two more sleepsuits and waiting for delivery. Thank you ever so much for your recommendation.
 

jenniferjean

Registered User
Apr 2, 2016
895
0
Basingstoke, Hampshire
Yes, I spoke too soon.
3.30 this morning he woke me saying he wanted to have a pee. So I took him to the toilet, undid his sleepsuit and pulled it down along with his pull-ups. But I wasn't quick enough and he was going as I was removing them. So the they got wet. I changed his pull-ups but had to put his old pyjamas on as the new sleepsuits hadn't arrived yet. I then got him back to bed.
About 6.45 he woke me again saying he wanted to have a pee. Again I got him to the toilet and managed to remove his pull-ups and sat him on the toilet. He was on for just a few minutes before announcing that he'd finished. I knew he hadn't done anything so tried to persuade him to sit for a while. But he was having none of it and proceeded to pull on his pull-ups. I pulled up his pyjamas and told him to make his way back to bed. He then just sat on the toilet. I asked him what he was doing and he said he was having a pee. So I quickly got him to stand while I removed his pull-ups and he sat. This then happened again, he's pulled up his pull-ups and attempted to sit with them on.
I was tired. I felt I was getting a bit stressed so I walked out of the bathroom. I left the room.
A few minutes later he walked into the bedroom, his pull-ups and pyjamas in his hand, and proceeded to pee on the carpet.
Good Morning, it's a lovely day.
 

Little moth

Registered User
Jul 18, 2014
58
0
Yes, I spoke too soon.
3.30 this morning he woke me saying he wanted to have a pee. So I took him to the toilet, undid his sleepsuit and pulled it down along with his pull-ups. But I wasn't quick enough and he was going as I was removing them. So the they got wet. I changed his pull-ups but had to put his old pyjamas on as the new sleepsuits hadn't arrived yet. I then got him back to bed.
About 6.45 he woke me again saying he wanted to have a pee. Again I got him to the toilet and managed to remove his pull-ups and sat him on the toilet. He was on for just a few minutes before announcing that he'd finished. I knew he hadn't done anything so tried to persuade him to sit for a while. But he was having none of it and proceeded to pull on his pull-ups. I pulled up his pyjamas and told him to make his way back to bed. He then just sat on the toilet. I asked him what he was doing and he said he was having a pee. So I quickly got him to stand while I removed his pull-ups and he sat. This then happened again, he's pulled up his pull-ups and attempted to sit with them on.
I was tired. I felt I was getting a bit stressed so I walked out of the bathroom. I left the room.
A few minutes later he walked into the bedroom, his pull-ups and pyjamas in his hand, and proceeded to pee on the carpet.
Good Morning, it's a lovely day.
Good morning, it's a lovely day here as well. x
 

TNJJ

Registered User
May 7, 2019
1,930
0
cornwall
Yes, I spoke too soon.
3.30 this morning he woke me saying he wanted to have a pee. So I took him to the toilet, undid his sleepsuit and pulled it down along with his pull-ups. But I wasn't quick enough and he was going as I was removing them. So the they got wet. I changed his pull-ups but had to put his old pyjamas on as the new sleepsuits hadn't arrived yet. I then got him back to bed.
About 6.45 he woke me again saying he wanted to have a pee. Again I got him to the toilet and managed to remove his pull-ups and sat him on the toilet. He was on for just a few minutes before announcing that he'd finished. I knew he hadn't done anything so tried to persuade him to sit for a while. But he was having none of it and proceeded to pull on his pull-ups. I pulled up his pyjamas and told him to make his way back to bed. He then just sat on the toilet. I asked him what he was doing and he said he was having a pee. So I quickly got him to stand while I removed his pull-ups and he sat. This then happened again, he's pulled up his pull-ups and attempted to sit with them on.
I was tired. I felt I was getting a bit stressed so I walked out of the bathroom. I left the room.
A few minutes later he walked into the bedroom, his pull-ups and pyjamas in his hand, and proceeded to pee on the carpet.
Good Morning, it's a lovely day.
Hi! What an awful night. Personally I think you should think of some help for yourself. It sounds too much for one person ( been there and got the T-shirt) ...
 

jenniferjean

Registered User
Apr 2, 2016
895
0
Basingstoke, Hampshire
My daughter rang me today and once again asked me if I thought it was time yet to consider a care home for her dad, my husband. I spoke to her about my thoughts on this and how I couldn't consider it while there was so much going on with care homes and Covid.
Today I've struggled to cope with all he's been doing, silly little things that I should be used to by now and should be coping with. In and out of the bathroom just sitting on the toilet and not doing anything. Just not knowing what to do with himself. At the moment he is sitting in the lounge having put his pjs on. Of course his clothes are on underneath and will have to come off shortly. I'm tired and feeling guilty about my thoughts. And looking forward to yet another night with little sleep.
 

jenniferjean

Registered User
Apr 2, 2016
895
0
Basingstoke, Hampshire
I had a little cry this morning, but not because of the stress of caring for my husband.
It was at seven this morning, the time I try to be up by, but I went back to sleep. There was no hurry to get up this morning and my husband wanted to stay in bed. So I decided to have a bit of a lay in, but I didn't intend to go back to sleep. However I did, and I had a dream.
In the dream we'd had a row. I was upset and I was crying in my dream. Someone was trying to help and asked me what was the matter. I explained that we had fallen out and I didn't know why, and he wouldn't talk to me so I couldn't ask him. So this person went off to find my husband to try and sort things out. There was a bit of to-ing and fro-ing but finally this person had managed to convince my husband to come and make things up. (Sounds soppy I know - sorry)
Then I felt his hand on my shoulder, so much love and care in that touch. That man in my dream was my husband, the man I married.
So when I awoke from my dream I realised how much I have lost. What this awful disease has taken from me. So just remembering the man he was before made me cry. The word 'care' has taken on a completely new meaning to what we had between us then.
Even now, a couple of hours later, I can still remember and feel that touch on my shoulder. I just wish I could remember it forever.
 

jenniferjean

Registered User
Apr 2, 2016
895
0
Basingstoke, Hampshire
I'm expecting a call from Social Services at 1.p.m. today. This is for an updated assessment for my husband which was requested before Christmas. The nurse at our surgery requested it and has been trying since then to arrange it. Well now the time has come.
They telephoned yesterday and offered me this slot, which I accepted. It appears it's for my husband's needs. I was told originally that it was the patient's assessment and also the carer's assessment, but apparently that isn't the case. I was told yesterday that the person calling today will only be discussing my husband's needs, and will then decide if a carer's reassessment is necessary.
The main reason it was requested was because the nurse suggested I needed help with showering my husband. I actually couldn't wait for SS and have already put that help in place. The carer who sits with my husband on a Tuesday now showers him, and also comes just to shower him on a Friday. I'll have to explain that if I'd waited he would be pretty dirty by now.
It appears they just want to know what he can't do for himself. It would be easier to make a list of what he can do.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,972
0
Kent
I hope you get something positive from Social Services @jenniferjean.

I`ve just read about your dream. Hold on to the feeling of the hand on your shoulder and take strength from it. This is how it was and no one can take that away from you. I`m sure your husband would give anything to be back in that position now.
 

jenniferjean

Registered User
Apr 2, 2016
895
0
Basingstoke, Hampshire
I hope you get something positive from Social Services @jenniferjean.
It was better than I expected. She promised quite a good result, I just hope that she comes up with it.
For a start I explained that I was on direct payments for my take-a-break and she said they would be able to offer a care package based on the same arrangement. I just hope that is what they do offer as it would be so useful. In fact it sounds too good to be true, so I'm a bit worried whether I'll get it.
The next step is a financial assessment to see if and how much I'll need to contribute. She's also looking into the possibility of respite. I told her that I'm not going to go for it if it means my husband would have to spend a week in isolation.
 

jenniferjean

Registered User
Apr 2, 2016
895
0
Basingstoke, Hampshire
I've just written a long post about our 2 hour long wait at the hospital for a 10 minute session with the doctor, and then lost the post. So you've been spared that as I'm not going to write it again.
Basically as I see it, my husband's blood test showed there could be a prostate problem but according to the doctor at the hospital it might be a false alarm. He doesn't think my husband could cope with an mri scan, which he said they would normally do, so will leave it for the GP to arrange for further blood tests at a later date and see what happens.
I've come to the conclusion, especially when they discharged my husband a couple of years ago with his aneurysm, that mention the 'D' word and they write you off.
 

jenniferjean

Registered User
Apr 2, 2016
895
0
Basingstoke, Hampshire
Regarding my husband going to carehome for respite, I have a question for @Izzy .
Did your husband attend a carehome at any time? I'm just a bit worried as to how the carers in the home would be able to manage my husband with his sleepsuits. While at home he wakes me simply by fidgeting in bed, and I know to get him up and out of his sleepsuit, and to the toilet. I know they will be putting a mat by his bed that notifies them he is out of bed, but what will happen then is worrying. He can't undo his sleepsuit.
 

Izzy

Volunteer Moderator
Aug 31, 2003
64,230
0
69
Dundee
Hi @jenniferjean

Bill was never in a care home. I had carers in during the day to help him and from time to time I took respite at home nights. One of the carers would sleep in the spare bedroom. We had a bed mat alarm that alerted the carer if he tried to get up. It wasn’t perfect but it we managed it. I’m not sure how it will work in the care home. Are you able to contact someone there for a discussion on this?
 

slim-jim

Registered User
Sep 6, 2020
23
0
I've intended for some time to start a thread of my own and update it from time to time which would serve as a journal of our journey with dementia. Back in August I posted about my husband always finishing his sentences with "Jim". He still does it and I'm still not sure if he's calling himself Jim or he's talking to someone else. When I posted about that @Bunpoots came up with "It's life Jim - but not as we know it!" and said how that pretty much sums up living with dementia. So I thought that would be a good title for my thread.

For some time I've been aware of a few people posting on TP about having a bit of time on their own when their LO goes to bed, and I thought "why can't I do that". Usually at a certain time in the evening my husband will turn off the TV and hint that it's time for bed. I'm usually pretty tired by then and stop whatever I'm doing and hit the sack. But occasionally I'll want to carry on with what I'm doing, usually it's something I'm trying to read. I'll suggest he goes to bed but he always says he'll wait for me, so I stop whatever I'm doing.

But last night I decided that I would finish what I was reading and he would go to bed on his own. I've pretty much had to stop reading books as I don't get to concentrate enough, but this was an article that I really wanted to read. So I firmly told him that no he wasn't going to wait for me and that he was going to bed by himself. What a joke!. It was just like a child - "I need the toilet", "I want a drink". It went on for almost an hour by which time I was too tired and worn out to read.

I've tried going to bed early in the hope of having a bit of me time in the morning, but no as soon as I'm up so is he. I do enjoy crafting which is something I can do without the constant questions and demands interfering. But reading is something I haven't been able to do for some time. I just thought I'd start my thread with a bit of a moan.
I really do sympathise with you as your hubby sounds like my wife to a tee.she goes to bed around ten and takes forever to complete the mission,all sorts of problems needing my attention.by the time I go to bed around 11pm I have only had around 15 minutes to myself. If I want to get up a bit earlier in the morning to get on with something uninterrupted,no way .my wife wants to be up also.to be honest i have put it down to the fact that she wants to be with you,as she feels safe and secure if she knows she is close and also part of the action.so although it is really difficult and sometimes soul destroying,I keep telling myself that she is not behaving like this to hurt you,she is just not aware of the problems caused.
 

jenniferjean

Registered User
Apr 2, 2016
895
0
Basingstoke, Hampshire
Earlier this year I wrote here how the nurse at our Frailty unit arranged for SS to contact me with regards to getting help with showering my husband. I didn't wait for SS and went ahead and arranged it myself. However when SS did contact me I was told that because of my husband's condition they would be able to put a plan together to arrange for that help. The next step was to arrange for a financial assessment. I told the social worker that I didn't think we would qualify but she seemed to think it would be a good idea to put it into place. So I went ahead with it and it was done Monday, this week. I wish I hadn't.

As the guy was asking the questions I could tell we were not going to qualify, and I was amazed at the amount he wanted to know. He was on the phone for ages. And he said he would need copies of bank accounts. He went away to do his sums and a little later he called back. As I thought, we didn't qualify for any financial help. But, he said he wanted me to send copies of bank statements anyway even though we weren't going to get anything. He said he would email a link for me to send the statements.

I wasn't going to bother to send the statements as I thought there was no point. I was rather surprised when I received his email and it contained the following :-
"If the evidence is not received by 12/04/2021 the assessment will be processed as non-disclosure of information and you will be required to pay the full cost towards any chargeable care and support received from --------- County Council."