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I feel lost now - Carers UK Forum

I feel lost now

For anyone who is bereaved or no longer providing care.
When my father died 12 years ago I moved back in with my mother, I promised my Dad that I would
look after her.
She was fine for a few years, still driving and getting about on her own. Then she slowly started to
get 'old'.
Trouble walking, so used a scooter and just general wear and tear.
5 years ago she went blind in one eye overnight. Then just over 18 months ago she went blind in the
other eye, overnight again. They were both burst blood vessels.
She is diabetic and that is what they think caused them
She has had a mini-stroke and recovered.
Diabetic, arthritis, kidney failure (12% function), and lots of other little things that were being controlled.
Last Boxing Day she had to go to hospital for 10 days, violent chest infection and delirium, came home
and 2 days later started having carers twice a day (council supplied), this cut down to once a day, then
it ran out so I paid for a carer to wash and dress her every morning, 7 days a week.
A few weeks ago she started to say some odd things, including that she could see. The vision was
hallucinations caused by Charles Bonnet Syndrome.
Then she started a cough.
Over about 3 weeks she had a fall and spent overnight in hospital, had 2 violent panic attacks needing
paramedics, had 2 heart failure sessions and spent overnight in hospital twice. One of the nurses
recognised us we were there so often!
One Friday night it got so bad that I called the out of hours doctor, he arrived at 2am Saturday, and
was useless (they were last time too!)
4am I had to call an ambulance as she was trying to stand up and couldn't.
Spent 10 days in hospital, violent chest infection and delirious.
Came out just over 2 weeks ago, straight into a care home.
She is physically much better now, can't stand up without help, but when she is upright she can walk a
few steps using her frame.
I visit most days, unless someone else is going.
Every visit she asks me to kill her, or help her kill herself.
I have found a knife in the basket on her frame.
The staff there are all wonderful, every one is so nice when I talk to them, and when they talk to her.
She has only been there for just over 2 weeks so not settled in yet but I have told them everything she
says and does and they do keep an eye on her. They keep talking to her, and she has made a friend who
is also visually impaired and they talk to each other a lot.
Last night I told her that it was unlikely she could ever come home again, and she got upset. But I hope
she understands.
I am on my own, no family help (another very long story), working full time also. Had a month leave of
absence, and 6 weeks off with stress so far this year, plus many random days when she needed some help.

I feel so guilty about not being able to look after her at home any more, but she is in the right place for her
welfare, the decision wasn't mine or hers, it just had to be done.

I cry when I leave the home, and am now while I type this at work. I will blame hay fever for my eyes being red.
I am in my 50's, male, well over 6' tall and 20+ stone.

I just needed to get it all written down and off my chest.

I know some people have it worse, I am not complaining, just very tired, emotionally and physically.
Yes, you are indeed emotionally and physically exhausted - and I'm not in the LEAST surprised!

You've been carrying a very, very heavy 'burden' (I don't mean your mum IS the burden, I mean her CARE NEEDS are the burden!) for many years, that has got heavier and heavier.

And now, finally, it has been lifted off you.

Many of us find that we have been just about 'living on adrenaline' (or emergency reserves perhaps) and then when the 'burden' is lifted, we actually collapse with a king of total fatigue of the body and mind - and spirit too.

Please take it VERY easy on yourself. Accept that you, too, will be on a huge amount of 'adaptation' that is required. Of course you hoped and hoped - as do we all - that we could 'see them out' in their own home.

I hoped this with my MIL. Until she was 89 she was robustly independently, a couple of mini-strokes maybe, but resolutely living on her own and enjoying life. Had she had a fatal stroke then how much more blessed would it have been for her. Alas, she didn't, and then the dreaded D word set in - Dementia - and now, five long, horrible years later she is sitting in a permanent padded wheelchair in a nursing home, unable to speak or talk or understand, and hardly recognising anyone. It's ghastly to see and she has simply 'outlived her life'.

The one mercy she has is that with dementia, she does not know this.

Your mum, sadly, does, hence her pleas. She KNOWS she is 'nearing the end now' but cannot have the comfort of knowing she is in her own home. But yes, she IS in the best place, indeed, the ONLY place she can be now....

I would say, though, that one of the things that is often recommended on this forum is what we call 'kind lies'. For example, instead of telling her that she can never go home, you could say, 'Mum, when you're stronger, we can talk about getting you back home..'

You know, and probably, too, she knows, that can't happen, but letting her think that - hope that - can be a comfort. I know that goes against the grain in many ways, but where is the harm of it? Forcing her to face a brute reality that is hurtful to her is not kind, is it?

Remember, above all, you have done your VERY best for her - and had her illnesses not been SO great as they are, you would have been able to 'see her out' at home. It is NOT your fault she is as weak and frail and incapitated as she is. It is, sadly, the result of her living 'beyond her health'.....

Please take comfort from that - ie, not to feel guilt, only sad that it should have come to this.
Hello David

On this forum we have a mission - to replace the word 'guilt' with the word 'sad'.

A lot of us came here feeling 'guilty' that we didn't or couldn't do enough for the ones we loved and cared for and they had to, eventually, move into residential/nursing care. But as Jenny says we shouldn't feel 'guilty' - they're infirmities are/were not of our making. It's sad that they are not as fit and well as they were but we had/have all done the very best we could for them but there does come a point where out "best" is not sustainable - the point where our loved ones need more care than we alone can/could provide.
She has only been there for just over 2 weeks so not settled in yet
yes, it will take a little while for her to settle in (it's very good that she has already found a friend) so I think it would be a good idea for you to not visit everyday, maybe cut it back to every other day to give her time to get used to living without you on 24/7 call.

Personally I, too, had the "guilt monster" in my head when my Mum finally moved into residential care (she had Alzheimer's) and then for quite some time after she died I'd find myself thinking "she'd still be alive if I had cared for her longer". But the truth was that I was emotionally and physically exhausted and had no more "care" left to give - I was at the point where my own health (especially my mental health) was being seriously compromised.

So as difficult as it is you need to begin to pick up the threads of your own life. At 50 you're still relatively young and still have many years ahead of you. If your Mum was fit and well she would not want you 'giving up'.
Dear David, You are obviously a loving and caring son, you have kept your promise to your father, and looked after your mother for a very long time. You are still going to be caring for her, but in a different way. I agree with Jenny & think visiting every other day would help you both. To be honest if you have still managed to work full time, and gone through all that you have with your mother, I think that is amazing. Two weeks is no time at all for your mother to settle in really, and it's lovely she has made a friend already.
I hope you know that you have done a wonderful & very hard job.
Best wishes for the future
I'll only add on thing to all the good advice and sentiments above, and that is to start filling the time gap left by Mums move into residential with something good and positive for you! It's common to feel a bit of a spare wheel as there is so little now for you to do, so treat yourself to some nice hobby or pastime, or maybe even a social life for you. It will help ease you into this 'new normal'

Things have improved a little bit since I wrote that.

I saw her last night and she was asking for some things to be brought in for her so it looks like
she might have accepted the situation a little more. I had a more relaxing night afterwards.

I don't go every day, if somebody else is going then I don't.
Monday somebody went, yesterday somebody else went (they didn't tell me though!), and today
somebody else is going.
I'm seeing here about 5 times a week on average at the moment.

Had an invoice from them today, with only the option to pay by cheque!
Neither of us have a cheque book so will have to contact them for other ways to pay.

Who has a cheque book any more, nobody I know seems to??
DON'T pay ANY invoice by any method until you are fully and totally sure what is to be paid for and by who.
If Mum went into Home from hospital there is usually a 'free' period of enablement before any fees kick in. Even then fees depend on her income and savings NOT yours. If her needs are medical then CHC might kick in too.
Read the loads of threads on here about fees and I'm sure there's a whole thread somewhere . Many Homes and Social services depts are economical with the truth or just 'omit' to give the full picture and let everyone assume relatives pay. THEY DON'T

David, unless you personally signed a form for mum to go into the home, you are not liable. Neither is mum!
I reclaimed £8,000 from the local authority after mum went into residential care!
Whoever arranged for mum to go to the home is financially responsible, at least in the short term.
Does mum have over £23,000 in savings, NOT including the value of her house? Was she living alone? With you? How old are you?
Don't pay a penny. The LA should have done a needs assessment and a financial assessment. This can take a while. As others have said, you are not responsible (unless you've signed to the contrary).
David, I'm sorry to hear that mum has passed away, but she is now at peace, no longer suffering.

This is a forum for former carers, as well as current carers. If there is anything you want to share, or you would like help with, you only have to ask.

I have lost many relatives, parents, brother, and husband. It takes a long time to adjust to the loss of a loved one. Until I lost someone close to me, I always thought that the Victorians dressing in black mourning clothes for a year was ridiculous. Now I understand. If you are having a really "down" day, be kind to yourself. If you are enjoying yourself, please don't feel guilty, mum would want you to be happy.

The period between death and a funeral can be difficult. Just concentrate on getting everything that must be done before the funeral, and tell anything else it can wait.