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Stuck in a rut and suffering - Carers UK Forum

Stuck in a rut and suffering

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Hi all, just thought i'd post this as I've exhausted almost all options now. I'm a young adult carer and have been for well over a decade now. I care for my elderly father (80+) who has multiple health issues, including IBS, Prostate Cancer, advanced COPD and very poor mobility. I know how important it is to look after myself and am well aware of my rights and choices around whether I continue to care. I do chose to continue caring and that's not really what I'm here to get advice about. Dad is housebound (lives between 2 rooms) and has a commode because our living situation doesn't work for his mobility. I do all the caring - 100%. Anyway, over the last couple of months he has started to refuse to leave his bedroom or get out of bed (although sits a lot on the side of the bed). I'm aware this is very bad for his health; his muscles are wasting away and he has a very poor quality of life at the moment. We are due to move to improve his mobility and to make it more easy to walk/go out etc. My fear is he has got into a very slippery-slope type habit of staying in or sitting on his bed when he was never like this before and this could well continue wherever we move to. His muscles are going to pot and it will make his health much worse if he doesn't walk. I've explored, encouraged, coerced him to come out of his bedroom for many weeks and his refusal has caused blazing arguments between us. Not only do I suffer because his health will get worse and he will need even more care from me, but so will he suffer as long as he continues to do this. His has had a full health MOT, including looking at his mental health and reasons why he won't leave his room. Nothing explains this behavior, antidepressants haven't helped either. My question is, asking him to leave his room everyday is causing total misery and I get really anxious thinking about what he's doing to his health - but shall I just stop asking him? Stop encouraging him? Stop bloody well forcing him to get up everyday? Do I just admit defeat, give up and see his health get worse and worse for not real reason? Does anyone have any practical advice for me dealing with him? The arguments are killing me....
I feel the question here is duty of care. Should you give up encouraging your dad to move how does this fit in with duty of care. And I mean for you, personally?

In terms of practical solutions, I find having paid carers to help with rousing makes an enormous difference, even if one assists them at times. I salute you, as the six months I did it without support from paid care was v challenging and impossible to maintain for me.
Hi Kim. You obviously care a great deal for your dad. I'm sorry you're having a difficult time with him. I have an elderly dad, age 90, he likes to just sit in his chair all day. My advice would be to stop asking him to come out of his room. Try to give him a few days where he is not under any pressure to move. Then see how he is.
Is your dad eating sensibly? Does he have an appetite?
Also what about you? Do you get any time off to do the things that you like to do? It is important that you get some 'me' time.
Caring is so difficult. I am sure others with more experience will be along soon. I had similar feelings about my 80+ brother who became bedbound. I arranged for physiotherapists to come, and he persuaded them to agree with him that there was no point. I suspect in view of your father's age and multiple conditions you really will not get anywhere with this. I am not sure in what way a move will help his mobility - presumably allow him to get to a lavatory instead of just the commode - but he may get more and more set in his ways and eventually end up functionally incompetent. This is just my view. I would be inclined to let him allow his health to worsen. Others may disagree!
Have you got as many aids as you need? Have social services examined his situation?
I see Rhona has just replied, and I agree with her.
I have to say I would agree with Greta. Iad cared for Dad ungantil he was 92 and as he aged his world shrank from being just around the garden, then the house, then the room, then the bed or chair and then just the bed. It sadly seems to go with advanced years and you can't wind the clock back. Make sure you have all equipment to help him - riser recliner chairs, hospital profiling bed, standaids and hoists as mobility gets worse. Smaller things from the OT like bed rails, bathroom rails, triangular pillows , special mats or steps can all make the decline more manageable. I feel managing the decline may be more successful than fighting against it.
If you see it from HIS point of view, there are things he doesn't want to do, yet you are always going on at him to do them. I know you feel this is 'for his own good' but is it? He is gone 80, he has multiple deteriorating health problems, he is an old, old man and quite frankly, it sounds like he has simply Had Enough.

Think how you would feel if some 25 year old kept going on and on at you to do things you no longer had the slightest interest in - 'come to a wine bar, put on six inch heels, get your hair braided, paint your nails, come out clubbing with me'....etc etc etc. You would not want to, would you??!!

That's what your dad is feeling about you 'going on at hime'.

I would let him be. I suspect what you are 'really' after is that he should be younger and healthier and 'your dad' again, the way he was ten years ago and more.....

But he isn't.....I think accepting that he has entered the last phase of his life, that his quality of life is deteriorating not because you aren not getting him up and about, but because his multiple illnesses and increasing age are deteriorating....

I think Henrietta's phrase about 'managing' his decline, not 'fighting' it. Wise words. Sad, but wise.
Hi Kim
Your commitment to caring is admirable and remarkable and long may it continue.
Just be aware that as Dad declines (and decline he will even it were only through aging let alone all his other problems) that No one, absolutely no one can carry on caring 100% 24/7 for months or years. You will need to share some percentage, and an increasing percentage as he gets more needy. As his mobility decreases he may, for example, need to be moved by hoist and that takes 2 people.
I'm only saying this now so you can prepare your mindset towards what may need to happen. It doesn't mean your caring will decrease or cease, but rather that it will need to expand to include outside support in various forms.
Dad is very lucky to have you, just cherish him for what time his illnesses let him have left.

Xx
MrsA
Kim, you say you are a young adult carer. How old are you?
It's not your fault if your dad chose to have a child very late in life, and you cannot be forced to care for him if you don't want to. Don't let what should be really happy carefree days be taken away from you.
Caring is sooo hard. I am 58 and caring for my immobile 84 year old mother. Even with 2 carers coming in four times a day its hard. Mother would stay in bed all day by choice although will ocxasionally agree eo be hoisted into her chair.

There may be some voluntary groups who could help with a dad sitting service in your area. British red cross and ageconcern may be useful. Good luck.