March 20, 2020 at 1:48 pm #209018
Im sorry I wouldnt normally rant like this but if I dont I will kill someone… I am really at boiling point, I want to scream and swear and tell the whole lot of them to jump off a bridge (actually worse but I cant write that)
I gave up work to care for my husband, he has FTD and needs a trusted person around him almost 24/7. There is supposed to be help available there is help but … I filled in a whole heap of forms and gave the govt dept my life story they want to know the ins and outs of a dogs backside. They appoved him and said that we do meet the needs to qualify for carers allowence. But now I have to fill in a very similar set of forms for another gov dept, yet again I have to share my personal life with strangers. I have to ‘betray’ my husband, tell strangers he cant cope and cant be trusted to care for himself . Two days ago I explained that he gets frustrated and stressed by strangers and that I am the one who has to deal with that ..Yet today the forms arrived and they want him to go to their office and have an interview so they can decide if the help is necessary..
Its an incurable illness for heavens sake it has a life expectancy of 3-8 years and we are 6 years in. What the hell more do they need to know?
People talk about being dementia friendly well let me tell you its not friendly to have to go through this and its not just the person with the dementia who suffers, its not just them who has their life exposed and dignity taken, its the whole damn family, people expect you to just roll out your life story every 5 minutes for them to discuss like some soap opera.
We have a case manager.. but Im so angry with myself, I believed her when she said shes there to support us ‘if you need anything let me know’ she said so I let her know. I told her ..These forms and interviews and phone calls are killing me my head is banging and he is so stressed Im walking on eggshells.
her answer “oh dear that must be hard ,,I cant do anything about this its the process’ Why was I so stupid to trust her and thnk she would help?
No wonder people do not claim for help they are entitled to. I feel so awful , awful for having to ask , awful for him awful for myself having so many people looking at us I feel like a bug on a petrie dish.
Finacially we would be better off if I stayed at work caring for strangers and left the care of my husband of 39years to other people total strangers with whom he has no connection people who wont understand the way he speaks or what he likes or doesnt like.
But we decided the best thing to do was to make the most of this precious time, while he can still communicate and knows me we thought it would be good to have me care for him and we would be less of a burden to the state. We didnt realise the state would be a burden on our shoulders..
Dementia friendly? No.March 20, 2020 at 5:59 pm #209023
I work for a charity called PSP – this stands for Progressive Supranulear Palsy. It is similar to dementia and there is no known cure: such as with dementia.
At this charity I work at, we encourage doctors and the medical profession to recognise and diagnose PSP, without mistaking it for dementia. I am not saying your husband has PSP and doesn’t have dementia. What I mean is, at our office we are discreet about the information we give out: as should’ve the medical professions who are supposed to help your husband. They have violated your trust and done their job wrongly. At our charity, they always encourage the medical profession to be understanding, sensitive and discreet. This has not happened to you and you have every right to complain.
Do do this. I am sorry the medical profession has let you down: our charity would not have done so. If the nurses and doctors did so with patients of PSP, the actual office I work at would’ve been notified and action against said nurses taken. Do complain. You’ve been treated badly, along with your husband.March 20, 2020 at 6:33 pm #209025
I am so sorry to hear of your husbands condition it must be really hard for you see the man you love fading away before your eyes. Also government departments are not very sympathetic when you are trying to manage you life.
I do hate people who say they are there for you and actually do nothing at all to ease the situation.
A trying time for you Cassandra,
Love Mikki xMarch 20, 2020 at 6:39 pm #209027
@KitKatKitty thank you we do know he has not got PSP it is frontal temporal dementia behavioural variant. it took nearly a year to get that diagnosis with scan after scan spinal tap tests ,more tests, and yet more tests both physical and psychological. We do have a fantastic specialist and she is always very very good with us. Our current problem is not with the medical profession but with the government offices who deal with care and benefits surrounding long-term illnesses.
They just don’t seem to listen they are so busy with their forms and their interviews and they also want to do home visits it really is an absolute meat grinder experience.
no matter how much I try to explain that this is too stressful for him to cope with they just keep on and on.March 20, 2020 at 8:54 pm #209033
I do apologise for getting it wrong with the medical profession.
You have been badly let down by the government offices. I do hope you get the answers you need and an apology from said government offices.March 21, 2020 at 6:04 pm #209053
I feel for you Cassandra as my father had dementia of some form before he died. The system had no real answer and he was passed from piller to post with veiled threats all over. Luckily (?) he was too far gone to have great negative effect but the rest of the family were really upset. Luckily in latter days he was in a ward on a unit which was next door to where I was based so I could visit almost daily. The fallout still affects the family now, even though it was a number of years ago.March 22, 2020 at 9:53 am #209059
[quote quote=209053]I feel for you Cassandra as my father had dementia of some form before he died. The system had no real answer and he was passed from piller to post with veiled threats all over. Luckily (?) he was too far gone to have great negative effect but the rest of the family were really upset. Luckily in latter days he was in a ward on a unit which was next door to where I was based so I could visit almost daily. The fallout still affects the family now, even though it was a number of years ago.
@KitKatKitty , no problem with your reply, I doubt they will apologise they are ‘just following procedure’….
I am so sorry you had to go through this. When OH got his diagnoses one of the first things we did was consult a lawyer . We both made a living will with our last wishes regarding end of life /life terminating care known and I and my daughter were given POA.
This is where I start to get angry.. Because even though I have legal documents that give me that power and right to speak for him and make descisions these jobsworths still insist on following their procedure. The legal document was supposed to help take stress away from him. Apart from smacking them over the head with it physically I cant see a way of making them understand I have POA.
I tried phoning on Friday but due to the virus and ‘family situations’the woman involved had left early..Proberbly for the best really, I might have said some pretty nasty things if I had got hold of her.
For now Ive put the forms away I have three weeks to fill them in so I will wait until I feel calm and then attack them.
Today is a whole new battle. Mum has been told shes in heart failure she wants me to help write the arrangements for her funeral.. Deep breath stiff upper lip … and here I go again.March 23, 2020 at 7:39 am #209076
Oh no Cassandra! It doesn’t come in easy bits does it 🙁March 23, 2020 at 9:16 am #209078
[quote quote=209076]Oh no Cassandra! It doesn’t come in easy bits does it
I skyped with mum as I do every Sunday.. We have made her arrangements and although some bits were hard, mum being mum (totally crazy) it was also a chance to have a good laugh… I went through a list of questions like the music and any poems (nope she cant stand people wittering on) then asked what do you want to wear,? She was quite sure. ‘My white silk pyjamas’ she said, then as I typed she piped up ‘and dont forget me knickers Im not being cremated without clean knickers’
Trust mum to think about clean undies!
- This reply was modified 2 years, 2 months ago by cassandra.
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