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Who has stolen my husband?

kindred

Registered User
Apr 8, 2018
2,428
Having read a lot of these threads I am realising all these feelings I have are shared by so many,fear, frustration, loneliness the shouting to defend oneself as my OH has lost control ,trying to run the home on my own and make all of the decisions necessary ,the stress and strain and it never ends, like pushing the tide back with a broom. Sometimes we love our OH and sometimes we don't ,but we never forget who they were and we struggle on and on with no end in site and in the end what us there left?????, is there anything left of us? This is truly the cruellest illness for victim and carer.
Yes, you are right. I have cared for other long-term illnesses but nothing that takes the ill person into madness and so robs us of a companion at the same time as we are having to deal with the most appalling behaviours and strains. I hope there is something left of us, I am still recovering, mentally and physically. I find it hard to get the boldness I once had back. I think I became a bit of a beggar. I even begged my husband to show mercy at one stage when it was terribly bad.
All my thoughts, thank god for TP. Kindred xxx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Has he gone down with an infection @Sad Staffs - perhaps a UTI?
Whenever there is a sudden change I think - infection
I’m not sure as the care home staff are seeing to his pads. I will be back on duty from Monday lunchtime so will be able to check it out. He did a urine sample about a month ago, came back mixed growth, did another two weeks later, also mixed growth. And they won’t give him antibiotics if they can’t iden the bacteria. So, we are due to do another sample in 3 weeks, just in time for Christmas!!
I’ll have more idea what is going on when he comes home. But with stents in his kidneys and his bladder cancer, UTIs are not a surprise.
Hope you are well? Love B xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Hi B, not sure what to say as I have no experience of this yet. However do you think you will be able to manage if he comes home on Monday, I’m not asking what you want but what you need. Sorry if that’s seems a bit harsh it is said with much love and thoughts. I hit crisis point just over a week ago and with all the determination I have had to do everything myself I had to accept it’s not possible, hence his first respite next week. We had a nasty fall on Saturday and if my son hadn’t been here at the time it could have been much worse. I’m worried about you still being on crutches and trying to look after him, although it may be when he sees you on crutches his caring side will kick in, who knows what goes on in their confused minds. I know you miss him I was terrible the other day when my OH was in hospital just for 24 hrs and I couldn’t settle, so I understand you wanting him home. Would a few extra days help. Thinking of you lots of love Shirley xxx ps you’re not alone with feeling miserable that’s what we’re all here for xxxx
Hi Shirley
Lovely to read your post, thank you.
I take on board all you say about being able to cope.
I wouldn’t/couldn’t leave him there any longer. He’s like a sad lost soul, just desperate to come home. It doesn’t help that those that have been to see him or phoned him, try to put his mind at rest by telling him how well I’m doing, how well I feel, how I’m using one crutch, etc. I think he is wondering why he has to be there when I’m so fit and in the comfort of our home.
As for buying help to come in, that is something that I can do if I’m struggling. And I won’t hesitate.
Yesterday, my cousin that I get most comfort and support from came to wash my hair. It felt like I had dunked my head in the chip pan! We were talking about my husband coming home and that I have said he will have to help me. She and I think this might be good for him, hopefully he will feel useful and have a purpose to help make me batter.
Well that is the plan. Whether it will work out in practice..... not long to wait to find out.
I really hope the respite works for you both. Please keep me up to date with how you both are getting on.
Looking at TP I get overwhelmed by how many of us are in the same boat. How many of us are struggling to just do the right thing for the person we love, and for ourselves.
Thinking of you Shirley, and I look forward to hearing from you.
With love, Barbara xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Having read a lot of these threads I am realising all these feelings I have are shared by so many,fear, frustration, loneliness the shouting to defend oneself as my OH has lost control ,trying to run the home on my own and make all of the decisions necessary ,the stress and strain and it never ends, like pushing the tide back with a broom. Sometimes we love our OH and sometimes we don't ,but we never forget who they were and we struggle on and on with no end in site and in the end what us there left?????, is there anything left of us? This is truly the cruellest illness for victim and carer.
I think I wrote this in my sleep last night @Francy
Everything you say I feel to. So many of us in the same boat. We are like a nation of loving caring souls trying to do the right thing for the people we love most. And we are all struggling.
Please keep in touch and let me know how you are, with love B xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Oh dear, I really feel for you and wish there was something to be done. I understand you counting the days. Perhaps when he returns some normality will be restored. I do hope you have help as you are on crutches ,that alone has its own problems. Try to make the most of the next few days and if possible do something nice for yourself. Thinking of you. XXXX
Thank you for your lovely kind thoughts, love B xx
 

AliceA

Registered User
May 27, 2016
2,825
Oh my goodness Alice, for your granddaughter and her husband to have both daughters have such traumatic health conditions. I really cannot begin to imagine how hard that has been for them and for the whole family. I don’t know what else to say. Except know that I’m thinking about you.

The care home sounds very good. It certainly sounds as if it has a higher star rating than the one my husband is in! I understand what you mean about having people around that know what they are doing, it makes life easier. I really hope this works out for you. You are having such a tough time trying to sort transport... I’ll keep my fingers crossed for you. Some things are just so tough to sort and often beaurocracy makes everything worse.
Take care of yourself, love B xx
Thanks, B, not sure how one ever affords it. They need two years funding in place before they accept anyone.
People have not got back to me so will think about chasing next week. Just been on Tipping Point for a moan, feel better now. What a blessing you all are on here. Xxx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Thanks, B, not sure how one ever affords it. They need two years funding in place before they accept anyone.
People have not got back to me so will think about chasing next week. Just been on Tipping Point for a moan, feel better now. What a blessing you all are on here. Xxx
I read your post on Tipping Point, Alice. It’s a great place to offload and such variety.

I don’t understand the two years funding? Do you have to set this aside, or do the local service have to guarantee funding? I’m such a novice. I’ve learned a lot on here, but still a way to go!
I think provision of service is a lottery, depending on where you live, and what they are prepared to provide.
When I was trying to sort a care home for while I was in hospital I did a self referral. This was even though we were self funding, but only just it now turns out. I told them it was urgent. Our GP practice manager also phoned to make sure we were on the list.
But they didn’t get back to me until after I had sorted everything myself. And I then told them I didn’t need them.
However, I got the report from referral and the social worker, and I’m hopping mad. Who are these people? Do they make it up? The report is a nonsense, not to mention grammatically disgraceful. I almost ripped it up but then thought that this load of rubbish is on my husbands file. The SW only got right the fact that I was angry, upset and distressed.
Too right I was.
So I must do something about it. You have probably gathered Alice that I’m a bit miffed with our local SS team....
Now I’ve got myself all worked up again:p, time for a cup of tea and a piece of cake and calm.........
Take care of yourself
Love B xx
 

AliceA

Registered User
May 27, 2016
2,825
You must be, I told the GP that I felt there was little support, I felt that Carers should be flagged up as it was more urgent when caring. She did look startled when I said the local volunteer car service was not taking on new clients, they were so short of drivers.
I have spoken to Social Services several times, lovely people but no action as yet!!!

This two year funding is now coming from the care homes because many are reluctant to take in people who cannot self fund. This is because councils underpay. This two year rule seem to be common, i checked the price of respite and the going rate was £1350 per week. Min. 2 weeks.
Eye watering. Another quite shabby but comfortable, commode not en suite, was just under £1000 per week for residents. Somethings are extra.
They do not offer respite although I did not ask directly.

Up north the average is half the average weekly cost than this area.
Our council is virtuall bankrupt too.
I really do not know much I am just exploring. The only way would be it seems to sell the home and both move in! What happens after two years, one said the council will pay but I doubt it. Even so, we would not have much spare.
(Just paused to explain how TV works).
The dearer one was lovely like a hotel with a caring staff the did seem to respond quickly to need.

Like you I find it all to much! I do not feel we can find our way in this maze single handed. It is all so stressful, of course if we got out more everything would be all right!!! :(:(:(
 

Sad Staffs

Registered User
Jun 26, 2018
677
The two weeks in the care home are up in the morning. My husband will be coming home.
We have spoken 6 or 8 times every day. I would tell him what time I would call, or the time he should call, but he didn’t/couldn’t/wouldn’t wait for those times. Throughout his stay he has got very upset if he didn’t know the name of the person who would change his pads. He badgers them into giving him the name of the person fitting his night pads, and wanted to know as many nights ahead as possible, he then writes down who it will be. It’s the same for his morning routine. He gets very upset if a different person turns up and has been known to send them away.
He is getting agitated about coming home, in particular our sleeping in the same bed. He says he won’t sleep because he will be frightened of hurting my wound. I keep telling him my wound is on the opposite side to him, but he repeats the same thing daily.
I have sorted out them packing his case and they are bringing him home. He doesn’t believe that it’s sorted, he tells me they are trying to wriggle out of it, he goes over the same thing. I can feel myself bristling as he goes on.

So, how do I feel?
After the initial feeling of guilt and loss I have to admit that I have enjoyed the break from him. I feel guilty just saying it, but it’s being honest.
Part of me dreads the return of his obsessive, aggressive and selfish manner. This isn’t the man I’ve loved for over 40 years. But then it hurts that I have said that.
I know it will be back to how it was, and nothing has changed.
I know it isn’t right for him to be in a care home. Most people don’t think he even has dementia.
I know the little bit of freedom I have had has done me good, even though I have been unable to get out of the house. Just getting up and going to bed when I want to, watching rubbish tv programmes I want to, not having to go up and down stairs every hour to see to his pads has been a huge relief.

Now we are back to square one. Watching and waiting. Our lives are just slipping away. Nothing changes.
Love B xx
 

highland girl

Registered User
Jul 30, 2017
143
Yorkshire
Hi Shirley
Lovely to read your post, thank you.
I take on board all you say about being able to cope.
I wouldn’t/couldn’t leave him there any longer. He’s like a sad lost soul, just desperate to come home. It doesn’t help that those that have been to see him or phoned him, try to put his mind at rest by telling him how well I’m doing, how well I feel, how I’m using one crutch, etc. I think he is wondering why he has to be there when I’m so fit and in the comfort of our home.
As for buying help to come in, that is something that I can do if I’m struggling. And I won’t hesitate.
Yesterday, my cousin that I get most comfort and support from came to wash my hair. It felt like I had dunked my head in the chip pan! We were talking about my husband coming home and that I have said he will have to help me. She and I think this might be good for him, hopefully he will feel useful and have a purpose to help make me batter.
Well that is the plan. Whether it will work out in practice..... not long to wait to find out.
I really hope the respite works for you both. Please keep me up to date with how you both are getting on.
Looking at TP I get overwhelmed by how many of us are in the same boat. How many of us are struggling to just do the right thing for the person we love, and for ourselves.
Thinking of you Shirley, and I look forward to hearing from you.
With love, Barbara xx
Hi Barbara thinking about you today as your OH returns home, hope all goes well, it will take a little while to adjust again I imagine. I was reading your post from yesterday don’t feel guilty that you have enjoyed the break, as everyone keeps telling me we’re entitled to a life too even if we don’t think so. The guilt is starting to kick in with me as we get closer to OH respite which starts on Wednesday especially as I seem to be getting quite a few social events booked in, but there again ive been trapped in these four walls long enough! Right must prepare for carers, we’re on week two and I’m adapting very slowly. Take it easy and hope all goes well. Lots of love Shirley xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Hi Barbara thinking about you today as your OH returns home, hope all goes well, it will take a little while to adjust again I imagine. I was reading your post from yesterday don’t feel guilty that you have enjoyed the break, as everyone keeps telling me we’re entitled to a life too even if we don’t think so. The guilt is starting to kick in with me as we get closer to OH respite which starts on Wednesday especially as I seem to be getting quite a few social events booked in, but there again ive been trapped in these four walls long enough! Right must prepare for carers, we’re on week two and I’m adapting very slowly. Take it easy and hope all goes well. Lots of love Shirley xx
Hi Shirley
Thank you for thinking about me. The care home have just phoned, they are giving him his lunch before bringing him home. He phoned earlier and told me he was excited to be coming home. That made me feel worse not better!
I really hope your respite does you a power of good. I think you should cram in as many social events as humanly possible! Go for it. Absolutely no reason for you to feel guilty. These breaks don’t come along very often and my goodness you deserve it.
Please let me know how you are, and I hope you have a really good break.
Thinking about you, love Barbara xx

Thanks for thinking of me @AliceA .... I hope you are ok today and no mishaps or breakages?
Take care of yourself, love B xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
So, my husband came home yesterday afternoon. It was good to see him. He hadn’t lost any weight, but looked like a woolly mammoth as he really needed to get his beard under control:)
He is quite confused, easily agitated, swearing and angry, so nothing much has changed. He is trying his hardest to help me. It bothers him that I still have to use crutches, although I’m physically able to get about with just the one. Can’t walk without as it feels like my leg is bending inwards, really weird. Roll on physio next week.
Today I get the pleasure of having clips and stitches removed. Now that is something to look forward to as the dressing is stuck to the wound:eek:
I think my husband is more obviously confused than before he went into the care home. He is struggling. He just asked if we were going to physio, again. I must have told him so many times what today’s visit is for.
I tried to get him interested in my online shop and what I had ordered for Christmas to be delivered on 22nd. He just can’t be bothered, or can’t read it, or can’t understand the printed order. Not sure what it is.
But he has no interest in anything except me and himself. I think he is even more obsessed with himself than he is with me, and he suffocates me.
But...... I really shouldn’t grumble. He’s home, he’s relatively calm, he turned over and stopped snoring when I asked him to:p.
And I’m coping, what more is there to worry about today.
Love B xx
 

karaokePete

Registered User
Jul 23, 2017
5,511
N Ireland
I'm glad that's going reasonably well @Sad Staffs.

The confusion is probably the change of location so I hope that settles down.

I try to take 'me' time when my wife is sleeping to alleviate that feeling of suffocation you mention - I fully understand that feeling.:(
 

AliceA

Registered User
May 27, 2016
2,825
So glad he is back home. Probably it will take a while to settle down again.
This lack of interest comes and goes I find. When it does it can bring more problems!
Hope that you soon get fully mobile soon.
Like Pete, I grab breathing times, early mornings, late evenings, when he sleeps. When sport is on is good, he has good earphones.

Take care, thinking of you, Love A.
 

canary

Registered User
Feb 25, 2014
12,620
South coast
Im glad it is going OK
Please dont do too much and set back your recovery
The way he is only interested in himself is typical, Im afraid. Not his fault, poor thing, as he will be unable to see anything from any other view point now - but still difficult to cope with.
 

Sad Staffs

Registered User
Jun 26, 2018
677
I'm glad that's going reasonably well @Sad Staffs.

The confusion is probably the change of location so I hope that settles down.

I try to take 'me' time when my wife is sleeping to alleviate that feeling of suffocation you mention - I fully understand that feeling.:(
Thank you, it’s like he has a sixth sense when I go out of view, he wakes up and either shouts or follows me.
However, I was dreaming about another walk along a beach and searching the fab ancient ruins. How does tomorrow suit you?!!
I wish I was in Cyprus, Sadly it will only ever be in my dreams.
Hope you are well, and hope the weather is balmy?
Love Bx
 

Sad Staffs

Registered User
Jun 26, 2018
677
So glad he is back home. Probably it will take a while to settle down again.
This lack of interest comes and goes I find. When it does it can bring more problems!
Hope that you soon get fully mobile soon.
Like Pete, I grab breathing times, early mornings, late evenings, when he sleeps. When sport is on is good, he has good earphones.

Take care, thinking of you, Love A.
Hi Alice,
How are you coping today?
My brother in law took me to hospital, husband came to. My husband was so snappy and aggressive with his brother, his wife, and anyone within hearing distance. I don’t like confrontation, so I’m mortified when he is so rude in front of and to other people. Husband looks so normal, they don’t know that he’s got dementia.
There was a lady in outpatients with a hearing dog for the deaf. Her disability is hidden, but her dog tells us to be aware. I think we should have some sort of..... something.... to warn others that they have an aggressive grumpy person that just can’t help being like they are!
I worry, one day I think someone might bop him on the nose for being rude or aggressive!
Anyway, they took 20 clips out. I know feel like my inside is going to fall out!
Hope you are ok, Alice, always lovely to hear from you.
Take care, love B xx
 

canary

Registered User
Feb 25, 2014
12,620
South coast
Glad they took the clips out - that is progress :D
There was a lady in outpatients with a hearing dog for the deaf. Her disability is hidden, but her dog tells us to be aware. I think we should have some sort of..... something.... to warn others that they have an aggressive grumpy person that just can’t help being like they are!
I have heard of people having small cards (business card size) with something like "please forgive me I have a degenerative brain condition and cannot help my behaviour" printed on it to be handed out out discretely by the carer when needed.