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Hard coping - Carers UK Forum

Hard coping

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My husband is older than, in fact he is now 88. He has been ill for the last 10 years and I have been his carer. His mobility is very poor. We get out very little and as we live in a small village it get very lonely. We do have a car but find it difficult to find somewhere easily accessible. l tend to beat myself up as I know that Alan needs company as much as I do. He relies on me for everything and I am afraid this has taken its toll on me. I am trying hard not to be irritable and sorry for myself but it’s hard work. I think my story is the same as everyone else’s. I do apologise. Does anyone else think they are alone in this?
Hello June and welcome to the forum.

You ask
Does anyone else think they are alone in this?
, the answer, of course, is yes - we all do at some time or another which is why so many find their way here.

It is hard when you find yourself the only one doing the caring without any meaningful breaks. But it is important to be able to factor in some 'me' time - whether it's just an hour or two to go window shopping and have a cup of coffee or a longer break of a couple of days. If we don't look after ourselves (mentally as well as physically) then at some point we will reach "clapped out carer syndrome" (as it's known on here !) and won't be able to care any longer.

You say you live in a small village ? So I take it that you have no family nearby who could stay with your husband whilst you take yourself out ? Do you have a local church? Perhaps they have some sort of coffee morning or other regular social event that you or he or both of you could attend ? Is there a quiz night at the local pub ?

Of course your other option might be to look into residential respite care for him so that you could have a longer break ?

From my perspective when I cared for my Mum I found it just as hard and we lived in an outer London suburb !
Hi June, welcome to the forum. Your husband needs you to be well, mentally and physically, and that means accepting that at his great age, he has to let you do things by yourself.
Start by talking to Social Services, asking them for a Carers Assessment for yourself, and a Needs Assessment for your husband.
It's also important as a carer to minimise the amount of work you do. Streamlining the house as much as possible, having a tumble dryer, dishwasher, maybe having a domestic help once a week to do the worst of the housework for you (and maybe giving you some feminine company too).
Are you aware of Attendance Allowance?
Hi Susieq and Bowlingbun, Many thanks for your kind words and it’s so nice to know there is someone out there. I feel angry with myself that I have allowed myself to become so depressed, my doctor put me on Sertrelene about 3 or 4 years ago but I think they probably need a review now. I feel such a failure to have to admit that I barely go out, I have not had a proper holiday for almost 10 years. We go away but we usually go to aWarners Hotel and I never, ever go out in the week when we are there as I cannot leave my husband. He has recently received a formal diagnosis of vascular dementia It is a second marriage and his daughters, although they phone him, do not see too much of him. One lives up north and comes about 3 or 4 times a year but only stays 2 or 3 hours. I do not think he would consider respite so for the moment we stagger on. His other daughter comes to see him sometimes but never on a regular basis. I know they all have jobs and I understand this.

Thank you for ‘listening’ to me, I appreciate it..

It is time to ask Social Services for a Needs Assessment for him and a Carers Assessment for you. Be sure to claim Attendance Allowance and exemption from Council Tax. He will never agree to any change willingly, will never appreciate that you need time alone, so now you must take control and make decisions on what he NEEDS not what he WANTS.
Hello Bowlingbun, thanks for your reply. We have, on the advice of the memory nurse, contacted the local council regarding council tax. We have also obtained Attendance allowance. As we are self-funding, I have arranged for my husband to be showered and apart from also arranging for my ironing to be done, I do everything else. One of the worst things seems to be the isolation. My husband is very deaf and this doesn’t help. He is very forgetful now and we have a “memory board” to help. Many thanks to you.

Hello June
My husband is in a nursing home because of strokes and vascular dementia.
It is extremely hard but honestly, BB is correct.Needs not wants have to take priority.
I suggest you contact the Alzheimer's society. They can advice on all sorts of dementia, and how to try to cope. You are important too, and need to consider your own health. If that goes down, you will not be any support to your husband.
Time for yourself is essential if only to be able to have a cuppa and read a magazine in peace.
My heart goes out to you.
Make sure you have a proper financial assessment by the LAas sometimes social workers give inaccurate information. You should have at least £46,000 between you to be self funding, as a couple.
June, hi I'm afraid that now vascular dementia is in the frame, it is, sadly, time to make a Plan for what will, inevitably, be the Final Phase of your husband's life. It is of course highly variable just how long it takes for dementia to become finally terminal, but terminal in principle it is, so that is something hat, sadly, you now have to face - and, as I say, plan for.

It is also variable just how dementia 'takes' people - some slip into relatively peaceful dementia, just become less and less able to do anything (this is the state my poor 93 year old MIL is in, now in a care home for 24x7 care, and spending her days more or less sitting inert in a chair, unable to be mobile, and doubly incontinent and so on.). But it really is very variable - for example, my friend caring for her 90 y/o father in her own home finds him quite capable of 'entertaining himself' - he will wander around her house, manage the stairs, sit in the living room and 'watch' the TV, or snooze off, and yet for all this apparent independence (she can even leave him safely in the house alone for an hour or two), he cannot physically feed himself any more - as in, she has to sit him down at the table and fork food into his mouth, coaxing him to eat - he's forgotten how to do this himself, that part of his brain has 'gone'.

So I would say you will firstly need to take on board that your husband's dementia take various forms (and I do hope it will NOT be the type that makes him aggressive and highly restless - my MIL was never aggressive thankfully, but did 'sundown' as it is called, getting very very restless and wandering around endlessly in the evening, and during the night too sometimes - that's why she is in a home where they can cope with that.)

And secondly that it will, sadly, inevitably progress towards the end, and that the 'end stage' - unless another physical ailment, eg a stroke, pneumonia etc, carries him off before - will be him lying very inertly in bed, almost totally unresponsive until finally the last of his poor mind 'slips away' and the dementia finally 'turns off his brain' so to speak.

I know this all sounds very grim, and so indeed it is - it does have one 'blessing' however I would say and it is this - that as the dementia deepens he will have less and less awareness of it, and therefore less and less fear and agitation. In a way, end stage is 'peaceful' - I know my MIL has always been very frightened of dying (perhaps we all will when it's our turn??), but now, when it finally does happen, she really won't know anything about it, and that, in its own way, is a blessing I think. It's the only one that dementia confers, so I hope it is so.

But, yes, now that dementia is in the frame, in a very real sense 'everything has changed' for you, and your/his family, and now is the time to put into place the arrangements that will carry you and him forward to the conclusion.

PLEASE do 'make the most' of him while his mind is active at all - I know it's hard, and so so sad, but please do value what he is now, and can do - especially things like memories, and photos, and all the things that will, so sadly, be fading now. Do ensure his children understand this is the time that they must spend on their dad, to share what can yet be shared with him.

Kindest wishes at a distressing and challenging time - Jenny
Dear All, Thank you for the back-up that you sent to me back in October when I joined you. Life has become a little more difficult since then (as it does for all of us). I have recently hit a DOWN spot as I have cough and cold which should be no more then an irritation but has completely clobbered me. My husband cannot understand why I am so weary. I have not been to my GP because he may well wonder why I’m visiting with a cold. I have done all of Xmas preps. on my own and we are supposed to be staying in a hotel for 3 nights near to my son - my husband badly wants to go. I know I am being a moaning old bat but I just want someone to listen to what, on paper, looks like a petty grouse. I want someone to understand how lousy I feel. I shall regret my moaning once I feel better.

I hope you all have a lovely Xmas. June