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Considering being mums carer - Carers UK Forum

Considering being mums carer

Share information, support and advice on all aspects of caring.
Mum was moved to a Community Hospital yesterday for rehabilitation, it is making me feel guilty/upset/frustrated etc., I work part time, but feel I should be giving more to caring for mum.
I'm considering telling the hospital that I will be her carer.
Could anyone give their views/thoughts/advice please
Focus on what mum NEEDS now, not what you would like. Do NOT UNDER ANY CIRCUMSTANCES allow her to be discharged anywhere until you are sure that it is safe and suitable. Since Parkinsons is a long term progressive condition, make sure mum's long term needs are being considered, not just the hospital wanting their bed back. Be very firm and assertive.
Thank you for your reply, my dad has Parkinsons ( though my parents split up many years ago)
I understand and appreciate what you have said, but how do I stop feeling guilty?
Had a melt down this morning :(
Hi Karen. It's not easy when the emotion battles with the logic, is it? Guilt is something that most of us deal with, they're "ours", therefore our responsibility - we love, so we feel we need to care, it seems the right thing to do.
What I would say though is that love can get in the way of doing what's right for ourselves, and this can impact on our Caree in the long term.

At some point, if not now, it will be physically impossible to provide the care that mum will need. If her condition deteriorated, which it probably will as she ages, it will become even harder. We have many carees here who are completely exhausted due to lack of sleep, looking after their carees toilet needs, odd sleeping patterns, physical immobility, mental confusion.. I could go on. Please reconsider giving up work. When Social Services AND the NHS hear that there will be somebody in the family providing care, they usually offer much less help and support, if any. Finances suffer terribly and hard though it is, you really need to try and think ahead. Would it not be better for mum to be supported within the home with careworkers coming in and you seeing her regularly, when you aren't exhausted - or trying to cope with her needs constantly and being absolutely worn down?

Guilt is always with us but we have to look at the bigger picture. Elderly parents continue to age and become more infirm, and that's without other issues. Add medical problems into the mix and you are talking about a scenario that could go on for years with you as full time Carer finding it harder to cope.

Please have a think about it before you come to a decision. It is vital that mum isn't discharged before suitable arrangements are in place, careworkers, district nurse visits, etc. NHS will often try heavy handed tactics and send the elderly home if they know that a family member will do the caring, regardless of if they are really well enough to go home.
My own mum was discharged and re-admitted 7 times in the last 7 months of her life and it was heartbreaking. I remember breaking down in tears when trying to get mum to the commode and she just could not stand, take her own weight. I couldn't carry her, couldn't lift her enough to move her - and seeing her face when she couldn't hold it any longer. She was spotless, kept an immaculate house and was wetting her carpet and chair. These are the realities of caring. If you want to go ahead, please make sure you have support in place, for everybody's sake.

Thank you , your post makes a lot of sense.

I know what you mean about the NHS sending people home......when we were at A&E Thursday night after mums bad fall and with a head wound from which she had lost quite a lot of blood, they said she could go home if one of us could stay with her......then they removed the hematoma from the wound, resulting in fresh blood pouring.....I then approached the Doctor and said we would be happier if she stayed in....."not a problem I'll book the bed now" was the reply!!
Just as well we made that decision as things went down hill after!
Hi Karen, You are going through a horrible time and you and your sister love your Mum dearly and want to surround her with that love and keep her safe. But consider this, you have a duty (born of love)to provide the best possible care for your Mum, which isn't necessarily you. Are you really willing to give up your job (it'll happen), be on duty for 24 hours a day, struggle with coping when you are exhausted, frustrated, trapped and frantic?
Could it possibly be better to put your energies into finding Mum the nicest, homeliest, most caring Home in your area that you can, before it all gets far too much and she's placed just anywhere? Where she has professional help, equipment needed, kind carers and a pleasant room? Yes, you and your sister might would be the very, very, best carers for Mum - if only you could be calm, happy, contented, rested, fully trained in Care and with a social and work life of your own as well. This does not happen.
Ok let's be blunt. How long might Mum have? 6 months and you'd probably manage. 6 years and you and your sister could really resent each other, your situation and the burden Mum has become. If you could find somewhere where you are confident Mum would be well looked after you will still be seeing her every day maybe, have a mother daughter relationship, have fun together. How do you think Mum would react? If there's any chance you think Mum would be happy in a Home then I would arrange it now.
I'm coming from the situation where, with some care in place, I'm looking after my 99 year old Mum and have been for years. She hasn't got the problems your Mum has, but has no mobility, very little sight, is displaying dementia like symptoms and her needs are increasing daily. Every day there's some new problem, whether with her health, her carers, her bungalow, her medication etc etc. Why isn't she in a Home? Because she has made me promise not to ask her to go , but my life consists of mum, mum, mum, mum ,mum. I'm going to have to break that promise sooner or later, before I collapse completely. At the moment I have most of the evening at my home (care in place) but I can see this will end soon and I cannot do any more.
When I took over Mum's care, she was 90, and I knew in my head that it would be hard. The reality for me is much harder than I imagined, and compared to many I have it easy. Consider very carefully.
All the best.
Try to hold onto your job if you can, even if this means reducing your hours a little. You will find it useful to maintain a life away from caring and, when you are no longer a carer, will have something to go back to. Be open with your boss and colleagues about your situation though. There will be times when you need their support and understanding.
I was working 4 days a week when I started caring for Dad. I went down to 3 days a week as I was finding it difficult to cope. It wasn't easy balancing the two but it meant that I had a life away from him with things to do and people to talk to. Along with various people going into his house to clean, garden, care, deliver meals and as 'befrienders', Dad went to Age UK once a week. This meant that he had a life away from me too, at home and later when he went into a care home.
Remember too that an elderly parent is going to become more dependent and you won't know how long this will be for.
Don't do it! I know that sounds harsh, but please please please take on board what the others are saying - basically it boils down to this:

What we can cope with for six months/a year, is NOT what we can cope for year after year after year while our own lives go TOTALLY on hold. And I do mean TOTALLY.

No matter what one thinks about how long someone may live (or rather, how not-long they may live), it is very, very unpredictable. Your mum might possibly last for years, and you will be ENTIRELY dedicated to her needs. And yes, those needs can only get more, and more, and more intense as time goes by and her condition weakens.

I do appreciate the guilt is telling you 'She's my mum, I MUST look after her, I can't bear not to!' but this is an incredibly dangerous thing to feel, because it does NOT take into account the long-term factors.

'Caring is wearing' ....it wears you down, and down, and down, as you watch your own life drain away....(no holidays, no weekends to yourself, no evenings out, no friends - they fade away! - no relationships, no time for anyone else at all, let along you!)

What I would suggest is that a good, cheerful, kindly care home will give you and your mum the 'weekday' care, a great base for your mum. Then, have her to stay with you when you want her to be with you. I did this with my MIL - she was in an Abbeyfield, and that took the nightmare pressure off my back, and then, twice a week she'd come and stay the night with me and we'd have a nice afternoon out, back to my house, watching TV, having supper, helping her to bed, a nice breakfast together, and then back to the Abbeyfield for lunch (or dinner evening.)

So she was a sort of 'weekly boarder' at the Abbeyfield, and that, I felt, was a good compromise. She didn't feel so 'abandoned' and I didn't feel my life was being 'taken over' by caring for her non-stop.

If you absolutely feel you MUST look after her yourself, then at least, please, create some kind of 'granny annexe' for her, so that you can get back to your own space when you have carers in for her (and you MUST have carers in - no matter what your mum says or wants!), which will enable you to have time to yourself, have friends over, etc etc etc.

I know this sounds negative, but please, never for a single moment underestimate how gruelling it is to care for someone 24x7, however much you love them.....

Kind regards, Jenny
Thank you everyone, I have taken on board what each of you have said.
You are all right, I could not be a fulltime carer.

I think, if it comes to it, part time care is all I could manage as, have you all quite rightly said, I need to have the life/work/carer balance.

Mum is still in the community hospital, which is 17 miles from us, and visiting and working etc., is already beginning to take its toll.

Thank you all so much for your support and guidance.
I'm glad we've had a positive effect on you!

I do appreciate the 'urge' to rush off and take on your mum's care full time - it's very natural, and very understandable, and if it were only for a short period and then you could get 'back to normal' then maybe it would be fine.

But caring for the elderly is seldom a sprint, and often a marathon, which is why 'pacing' is essential, right from the off.

Remember, if her condition worsens such that she becomes 'terminal' in that her life expectancy is no more than six months, then you can always go 'full time' then.

All the best, Jenny