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Unwilling to be carer - Carers UK Forum

Unwilling to be carer

Tell us a bit about yourself here.

I am 70 years old, physically well and fit, but very stressed and desperate to get my life back.

My husband is 68 and has cerebral atrophy, initially misdiagnosed as parkinsons. This appears to have started some years ago, but he only acknowledged that he had a problem in November 2016 when he went to see his GP.

Since then his condition has progressed, noticeably over the last few months, and he is now very stiff and unsteady, has some speech difficulty and problems with his vision (nystagmus).

In February he had several falls including one from top to bottom of the stairs and another resulting in damage to the banisters. Four of these falls needed an ambulance to be called and the last caused a subdural bleed and a 3 week stay in hospital.

My husband's condition was initially quite poor and it seemed unlikely that he would return home. After 2 weeks he improved considerably and a social worker decided he had capacity and that he should return home following a short stay in a care home while our house was adapted to ensure his safety. He returned last Monday.

For the first few days he had carers 4 times a day but there was little or nothing for them to do at lunch time or tea time do they now only come mornings and evenings. Unfortunately the timing of their visits has been all over the place. The morning visits have mostly been so late that by the time breakfast is overly it was almost lunch time. On Saturday however the carer arrived at 7 am when I was still in bed.

I have no wish to be a carer and have advised social services accordingly. They have no problem with this - my husband has a fall alarm - but it is difficult to avoid the role completely. I also resent the way in which my home has been changed into a care home and I find the carer visits intrusive. Our bath has been replaced by a walk in shower so I can't even have a relaxing soak.

I only retired 2 years ago and intended to take up old hobbies such as horse riding and brushing up my language skills but this hasn't happened as we have been virtually joined at the hip. Only the fact that we were able to get away for regular holidays abroad has kept me going. On our most recent holiday however Pete was unable to leave the hotel and the mixed weather meant that he wasn't able to sit out in the gardens as much as we hoped.

Pete is very independent and for example insists on using the stairs unassisted. This and other risky activities cause me great anxiety on top of my sadness at his current state. He is simply not the man I married. Although he does not yet need to be in a care home and is adamant that he never wants to go back there I was dreading him coming home. Naturally this makes me feel guilty but I do feel that my life is now not my own and I am almost a stranger in my own home.

In desperation I recently visited my local carers centre. There was little practical help they could give but I was at least put in touch with Pete's social worker. Prior to that I had had very little information about what was happening following Pete's discharge from hospital. The lady I spoke to at the carers centre was very understanding and has kept in touch but I do feel very isolated. The truth is that I literally have no family or friends to provide any sort of support.

I am sleeping badly and feel constantly stressed but I do not wish to visit my GP as I will not take my medication unless I have a life threatening condition.

Sorry to have such a long moan as I know there are so many others with much more to bear. At least we have no financial difficulties at present but this does mean that we do not qualify for most benefits. I am hoping that a claim for Attendance Allowance may be successful, otherwise nothing.
Your life has been hijacked and I'm not in the least surprised at your reaction.

I felt the same way when my hitherto perfectly independent 89 y/o MIL 'landed' on me abruptly, with a diagnosis of dementia. My life just 'disappeared' (I only got it back when I put her - unwillingly for her! - into a care home. It was her or me. Ghastly but true.)

But I also know the nightmare of having one's expected 'golden years' stolen from one. Some years ago my late husband was diagnosed, out of the blue, with terminal cancer, and died some months later. I can remember at the diagnosis feeling like our car on the Motorway of Life, had been forcibly shunted up a slip road off the motorway, marked 'End of your Future Dreams'.

Our 'golden years' never happened. He is dead, and I am a widow.

My 'rage' at that has never abated, and never will - but I just had to accept it, didn't I?

I know that isn't a 'comforting' thought, but when malign fate hits us - as it has you, with you husband's diagnosis - there really isn't an up side.....

I would a practical issue for you now really is this (also grim and brutal) - what is your husband's life expectancy now? Hideous question, but if, say, it is only a few years, you will still be 'young enough' to get your (own) life back. Till then, you effectively put it on hold....

Or, of course, 'how long' before he actually NEEDS to into a care home, as his care needs worsen as his health declines?
I think you do need to get your life back. I don't think it's your obligation to be a carer. I think you should do some riding and maybe go to a language course, but at all events get out of the house for long periods. How feasible is this?
I don't understand 1) why the carers couldn't keep coming 4 times a day to relieve you - but perhaps you need a change of care agency anyway (I went through this with a bad care agency, later closed down, where breakfast could vary between 7 am and 11.30 am, yet lunch visit was at 12).
2) Why your husband cannot be persuaded to act more sensibly - is he compos mentis?

I'm not sure how helpful I can be, but I am just writing this because I do not agree that it's bad luck to lose your life right now - it has to be your decision.

How long before your husband perhaps does have to go into a care home? Is that a financial problem in the long run? The fact that your home has turned into a care centre is probably inevitable. I think you need to find some way or other to get out of it more often.
You CANNOT be forced to care. The most drastic option is to divorce your husband, but there are a few other things to consider first.
Top of the list would be to have some counselling. On the face of it, I am one of the most capable, independent people you've ever met, but a series of deaths, illness, and disability left me floundering. Counselling helped me rebalance my life, set priorities, and work out what I could, and could not, do.

Have Social Services done a written Needs Assessment for your OH, a Carers Assessment for you? Do you agree with them? Was the option of "Direct Payments" discussed with you?
Is he getting Attendance Allowance?
Exemption from Council Tax on the grounds of "Severe Mental Impairment"?
I'm really sorry you've lost your bath, there's nothing like a good soak to make me feel better.

Can you prioritise what part of your life you want back that is now achievable?
Is your home easy to manage? What do you do when carers are there?
Sorry for the quick questions, really busy day ahead!

PS If hubby is getting FOUR visits a day, were you told this is the maximum SSD will give you? The next step would be residential care. If he has dementia, he's not capable of making rational decisions, by definition.
Have you got PoA:?

If you have children, put the house you share with your husband into 'tenants in common' not 'joint tenants'. That way, if, sadly, YOU die first, your share does NOT automatically go to your husband, to pay for HIS care costs, so your children can at least inherit your share of the house, even if your husband's share has been completely used up.

Divvy up any joint other assets now, eg, savings into separate accounts, not joint, etc etc.

Local authorities are RUTHLESS these days about trying to get folk to pay for their own care!
I am in exactly the same situation as you. My husband had a stroke four years ago which left him with a paralised left arm and very weak left leg. His mobility has got worse in the past nine months and he is now bedridden with two carers in the morning to wash and dress him and two at night to get him undressed and into bed.

I am now 70 and just like you, I can see my life racing past me. I am tied to the house as he cannot be left alone for more then an hour. He tries to get up on his own and there is a risk of him falling. I have to lock him in when I go out as I am always concerned he will try to get out the house. He is totally unaware of his own safety and also how limited his mobility is.

He was in hospital twice over the past week and the first time my grandson and myself went to bring him home in my car. He was so unsteady on his feet that my grandson had to take his weight all the way into the house all while my husband was protesting he was able to walk on his own.

Like you we had to have our bathroom changed to a wet room, at least we got a grant from the council. My home is like a hospital ward with a hospital bed and a very large commode/shower chair which I insist is kept in his bedroom. I am not having that monstrousity in my bathroom. I am never sure what time the carers will arrive and indeed who they will be. They walz into my kitchen and bathroom as though they own the place.

. It makes me very annoyed and bitter that my life is no longer my own but evolves around my husband. He was always a very domineering man before his stroke and I was the little wife who did as she was told. I had no control over bank accounts and was given a set amount of housekeeping money each week which had to stretch to paying the bills and feeding and clothing the children. He was never really interested in them, his work always came first and it really riles me that I am still being treated as a second class person only here so that I can look after him. I was told at Christmas by his district nurse when my blood pressure was sky high (it still is, caused by stress), that I had to keep healthy as i had him to look after!!!

I am sorry that I cannot give you any advice. If I knew how to get out of this situation I would have done it a couple of years ago when I realised that he needed so much care. As has already been said, divorce is the only way out but that isn't an option at my age. For all I hate the situation I am in, I would never leave him. We have been married 51 years although not all happy ones. My grandmother had a saying "You've made your bed, not lie in it". We have been told the council has agreed to fund a place for him in a nursing home. I have given them a list of five homes in the area that would be suitable but apparently the waiting lists are very long so I am trying to hang on day by day till we get a vacancy. This isn't any kind of life and certainly not what I would ever have foreseen for our retirement.
Irene - Pay Back Time!!

I'll be blunt - if he domineered you al your married life etc, then who cares if the care home isn't 'ideal' - just put him in the first one to have a vacancy.

Then get YOUR life back.

Karma is a very good thing, don't you think? If he wasn't interested in you and your welfare for half a century, why be overly concerned about his, now?
Thanks to all those who have responded to my cri de coeur. I was going that the start of a new week without constant visits from social workers etc might have brought some improvement, but apart from a short break for breakfast I wasn't able to sit down until mid afternoon. Even then it only gave me time to skim through a newspaper before the next task. When do I get some time to myself?

To address some of the points from your responses:-

my husband is still fairly compos mentis although he does have some cognitive impairment. He does have capacity and there is no PoA but I am considering this.

We have no prognosis and I imagine that he could have several years ahead of him. His disability is currently mainly physical, and he takes risks simply because he can still perform certain activities. For example I just caught him taking out a sack of rubbish for tomorrow's collection. He was quite annoyed when I stopped him.

As for the carers visits,these were set at 4 a day by the hospital social worker following a meeting attended by myself and OT. At that time my husband was still showing the effects of the subdural bleed, and it was considered that he would need 24 hour supervision plus a fair amount of assistance. In the event he has made a fair recovery and can do pretty much for himself. He does need help for washing, shaving and taking medication, but there is nothing for a carer to do at lunch or tea times. The visits were reduced at our request but this can be reviewed as necessary.

Finally, as I said in my original post, I have no family. The house is owned jointly by myself and my husband but all our bank accounts act are separate.

I have the form to claim Attendance Allowance and have started to collect the necessary information.