Caring for my Dad again

Tell us a bit about yourself here.
Hi there, just needing someone to talk to really. My Dad suffered a massive stroke 10 years ago, it left him with brain damage, speech difficulties and completely lost the use of his right arm, also he had to learn to walk again with the help of a leg splint and a quad walking stick. It was such hard work looking after him 24/7, he wouldn't accept the carers so I had to do absolutely everything for him. Now this year at the beginning of January my Dad was rushed into hospital, I had a doctor out, she didn't know what was wrong with him, he had literally lost control of his bowel and bladder motions, so he was covered in blood and poo, it was disgusting. He had been sick everywhere, all over himself, all over the bed and floor. Ambulance took 4 and half hours to get to us. Turned out he had kidney failure, collitus and diviticular disease. He spent 3 months in hospital, infection after infection, on dialysis, blood transfusions etc. Dad came home in April, my god was it hard, he hadn't been home in the door 5 minutes and suffered a mini stroke but he was adamant he wasn't going back into hospital. His kidney function was at 12% when discharged. He has no control over his bowels so is now incontinent. He has also lost the use of his legs and can no longer walk at all. Now he doesn't want any hospital appointments, he doesn't want his bloods taken to check kidney function. I have carers come in in the morning to get him washed and partly dressed then again at bedtime to freshen him up before bed time. I travel there and back every single day and am on 24/7 call. I have to take care of all the incontince issues, change him when it needs doing, it really isn't a pleasant job but he can't do it. I do all his washing and housework. He isn't capable of getting out of bed on his own. I do all the cooking, the shopping etc. Basically now I have two houses to run his and my own. I do try and take my Dad out for walks in his wheelchair just to help him with a change of scenery as he does get very bored and angry when he is stuck indoors. His speech has gone downhill since this year's illness. Well thank you for listening x
HHi Claire. I aam absolutely amazed at all what you have to do!!! Your poor dad has really suffered. He has had a long list of serious health problems. Has your dad considered going into a Nursing home? This would certainly make life a lot easier for you and he would get specialist care.
I'm sure you will get lots more info and help from other members on this site who know much more than I do.
Claire, dad is not in control now, YOU are.

You don't HAVE to do anything at all, you can't be forced to care for him. Personally, I draw the line at poo, wee, and blood. I think it's inappropriate for a daughter to have to clean up her dad.

Now a few quick questions, as it's late.
Does dad own his house?
Does he have over £23,000 in savings?
Do you live with him full time?
Who is currently paying his carers?
Are you aware of NHS Continuing Healthcare? Dad should have had an assessment, involving you, before discharge.
Hi Claire , I did try to reply to you yesterday but my computer keeps scrambling everything I type and according to Norton I don't have a virus. Probably time for a new laptop.
Anyway, I felt I should reply as I recognise much of what you are going through, I cared for my dad for 10 years following a major stroke , similar issues with speach and mobility. That was followaing a burst stomach ulcer and major bleed so I get the messy bit- undescribable. Four or five years on a afall down the stairs and 3 months rehab after broken leg tryimgn to walk again.In more recent years , end stage kidney failure, sepsis, endless UTIs , fractured spine, Atrial Fibrilation, Cataracts, and Vascular Dementia after more mini strokes. Just wanted you to know you are understood as much as anything.
I also dealt with the double incontinence and towards the end I had input from specialist incontinence nurse for convenes and increased the home care to 4 times a day during the really rough patches. The last 3 weeks I placed Dad in residential care for "respite only" and he passed away in care but it was so much easier at that stage having given it my all , throughout the whole time so don't rule that out as an option when the time comes.
In the meanwhile shout when you need help, to care agencies and district nurses and to us on here- it will get you through.
It does sound as though your dad is reaching the last stages which isn't what you want to hear but may just keep you going knowing there is light at the end of the tunnel. Hope that doesn't sound callous but I have bbeen there and got the t shirt so to speak so don't say it lightly.
Hi Claire,

Welcome to the Forum. Your caring load is huge. Your comment about running two houses also struck a chord with me as I was doing that when I looked after my mum. I came to a point when mum's needs were greater than I could satisfy and eventually she too needed nursing care in a home. Do not rule that out. The home would have all specialist facilities to make dad as comfortable as possible, you would be able to spend as much time with him as possible and go back to your own home.

If you do want to continue to care for dad yourself, it may be worth contacting the Carers UK Adviceline for confidential advice to ensure that dad is getitng all the benefits he can. I used mum's attendance allowance, for example, to have cleaners and a gardener to free up some of my time.

Also, as a minimum, please ask Social Services about the possibility of respite care so that you can get a regular break.

Thinking of you in these very difficult circumstances,
" he wouldn't accept the carers so I had to do absolutely everything for him"

Claire, your dad lost my sympathy vote when you wrote the above!

Sorry ,but that was a disgracefully selfish thing of him to have insisted on! And for that reason he has NO sympathy vote now from me either.

A 'good father' thinks of his children, and does NOT want to be a burden to them - and that means accepting outside care! Of course we'd all like to be looked after by our children, but that is JUST not fair on them when it takes the kind of toll on our children that your dad's care is taking on you!

I think it's vital to look back and ask yourself 'what kind of dad has he been all my life'? If he was always kind and loving, supportive and affectionate, etc etc, ie a 'good dad' then yes, there is a case for you now being a 'good daughter' (but still not to the extent that you are right now!).

But if he was a dad who was NOT the above, then not! How did he treat your mum by the way? Did she wait on him hand and foot?

What I'm getting at is that 'just because' he's your father, does not mean he automatically gets to take over your life like this.

And, as I said at the top, IF he were a 'good dad' he would not WANT you to do all this for him - he would accept that the time has come, sadly, for him to be in a care home, where his daily needs will be taken care of.

He's angry because he's infirm - but that is NOT your fault. He can't take it out on you. And, although you don't give his age, the bottom line is, sadly, that if we want to 'stay fit' then we have to 'die young' - if you see what I mean! ie, he's infirm BECAUSE he is old, and his infirmity is the 'price he's paying' for that old age. Not everyone gets to grow old. He might have died himself ten years ago had the stroke been worse. He's had those ten 'extra' years, yes, with substantial and horrid infirmity, but he has had them all the same. Not everyone gets that privilege. My husband died of cancer in his 50s, he never got a chance to make it to old age, infirm or not.

As BB is saying, it's now time for YOU to 'take charge' and accept that the time has come when his care needs are so high, his medical problems so great, that ONLY in the 24x7 care environment of a residential home can he continue.
Post superseceded
Dear Claire

I am guessing you are reluctant to place you're dad in residential care.

Can understand this, but if you are going try this (say try rather do as sceptical will work but that's an aside) you need get more care in. Twice a day simply isn't sufficient for your dad's needs now. He might not like carers coming in, that is understandable but, sadly, unavoidable if he wishes to stay at home.

To give you an idea, my mum is mobile (ambulant disabled) although suffers from incontinence. Receives morning and evening call, it's my opinion now needs bedtime call. Your dad has many more health issues and needs correspondingly more.