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Discussion in 'I have a partner with dementia' started by maryjoan, Nov 21, 2018.
You missed one - NO HELP
This morning I am up early while OH is still asleep after being up and down all night, anxious and fearful, calling me MAW, needing a cuddle, a drink of warm milk and tucked back into bed. I am thinking how small my world has become. No more being an influential person in my community. My 'political' involvement reduced to posting on facebook and sending apologies for meetings. My new hobbies comprise knitting, feeding the birds in the garden and playing mindless computer games. The knitting and computer games are both frustrating as OH constantly interrupts, needing something at a crucial moment, which requires full attention.
If this were a proper job it would require 4 carers doing 8 hour shifts - Day Shift 7 till 3, Backshift 3 till 11, Nightshift 11 to 7, with one 'spare' to cover for holidays, illnesses, time off in lieu, etc. All 4 carers in the team would be highly skilled, fully trained and have CHOSEN this job - unlike us, a motley crew of people, highly skilled and trained, but NOT for this particular Job which has been thrust upon us. Even the paid carers do not do the full job, having no responsibility for managing the financial and legal aspects of the role.
It is like being marooned on a small island, not alone but with a person who needs round the clock attention, for their complex needs and unable to help (rather hinders) with the hunter gatherer tasks. Thankfully, this small Island has internet connection with all the other small islands and this is our life line for help and support.
When I went to look at a care home last week for future respite, the manager said to me that a staff member would find it very difficult to look after a resident 24/7 and that I must try and take care of myself to avoid breaking down. Wise words and we here all know that it is true without any hope of help. Help if available costs a lot of money anyway.
That is very easy for the Care Home Manager to say and, of course, she has the 'perfect' solution. Just book your PWD in for loads of respite care or, indeed for permanent residence. That is HER job to proffer this easy way out, but as we all on Tipping Point know, beyond the financial means of most of us and does not absolve us of the responsibility of ensuring the long term welfare and safety of our loved one.
A wry smile as you have perfectly described my hobbies too.
Its like being in a cage..............
If we could separate our emotions from all this - what would happen if we all went on strike for 48 hours. If, we all, together, left our homes and booked into hotels for 2 days.
Would anyone notice, or care? Or would it cause a ruckus?
Oh a hotel for two days all on my own please. I needn't even leave the room, just shut the door with me inside and nobody else to bother me.
I could shower and lounge on the bed, sleep even. I will do this sometime.
Oh my dear, sometimes it's not the easy way out. It was forced on my as it were, by my physical condition of breakdown and the fact it had become impossible for me to go on looking after Keith at home. It will strip us of all our savings but I had no choice and certainly does not absolve me from responsibility.
I know, this is all a nightmare, I know. With love, Geraldine aka kindred.xx
well, for a start, my home would be completely trashed on return. Gxxx
Id come back to discover that hed been on a spending spree and spent hundreds of pounds on things we dont need and clothes that dont fit; that hed been conned out of a a couple of thousand pounds by a scam; that hed got himself some viagra and a girlfriend; that hed changed our gas/electricity supplier to a load of cowboys who overcharged us and I'd have to go to the ombudsman.
No, Im not exaggerating - all of these things have happened at some stage when I went to stay with mum for a couple days to try and sort out her care. I dont dare leave him for longer than a few hours now.
This is going back a few years in his earlier dementia days - Richard booked and paid for a holiday to Malta, with a view to buying a timeshare. We did go on the holiday as I was loath to lose the cash, but we were plagued with salesmen!
I can completely understand where you are coming from. My wife insists on watching recorded tv programmes which we must have watched 20 times. She wont go for memory tests or allow me to be with her when we visit the GP. He has agreed with me that she has dementia for over a year now. She gets very very angry at me for lying as according to her I never tell her anything. Yesterday for example we had to go to collect a new car which she had to sign for (motability) and as she finds it very hard to go out it had been planned and discussed ad nauseam for weeks and written on the calendar. After we returned home with the car later that evening she turned really violent and wanted to know why I had dragged her out of bed early in the morning so that I could get a new car which she didn't want and knew nothing about. There is obviously no answer to these questions which is really the most challenging aspect of her illness. She constantly loses things and gets angry and violent accusing me of being the cause. Within 30 minutes she said she was sorry for being angry. This morning she started off again screaming at me as to why I did such a horrible thing dragging her out of bed for something she didn't know about. Groundhog Day . I have no wife I have no life I have no peace I have no future I have no hope. I'm sick of being stuck in this hell. I could kee on ranting but hey that's life as a carer ain't it.
By heck it is the life of a carer - it is no life at all!
I am sneaking off to do some work, whilst he watches some very old TV programmes ( again) but instead of working, I find myself on here, just looking for interaction with another human being............
Groundhog Day again and again - mind you it was a good film!
Same with me. Wrote an email that needed sending and should now leave PC and prepare some material for next crafting session. BUT I find it so hard to get on with anything when OH is just sitting staring into space in the living room. Much easier to flit around on here.
Welcome to you and I am so sorry you are in such distress. It is a hell, I do agree. I used to feel I was in prison with no hope of parole. I wish I could help. My OH had a terrible accident and best interests statement made that he had to have residential. I was broken completely. Savings planned for retirement all going now. Have to be careful not to exchange one hell for another, but nothing was as horrible as being sole carer for five years with not one day off. I agree, it is a terrible way to live, and there are so many of us.
with warmest wishes, you will find friends and support here. Kindred.
Thank you taking the time to reply. I appreciate your comments very much.
Thanks for the reply and bit of humour to which helps. Although I have watched that film a lot????
I don't know how I would feel if my OH was in residential care as I know she would berate me if I ever dreamed of such a thing....................