Has he gone down with an infection @Sad Staffs - perhaps a UTI?
Whenever there is a sudden change I think - infection
Whenever there is a sudden change I think - infection
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.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’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!!Has he gone down with an infection @Sad Staffs - perhaps a UTI?
Whenever there is a sudden change I think - infection
Hi ShirleyHi 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
I think I wrote this in my sleep last night @FrancyHaving 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.
Thank you for your lovely kind thoughts, love B xxOh 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
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
I read your post on Tipping Point, Alice. It’s a great place to offload and such variety.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
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 ShirleyHi 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
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.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.
Hi Alice,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.
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.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!