This is real.
I have been told by my Doctor that I have to walk away from caring for my Dad I am totally exhausted and in a complete mental breakdown
I have cared for my Dad totally since my Mum died that’s 41 years
I have tried to keep my own life running as well, but as he care needs have grown vastly I am buckled under it all have no life, I am totally absorbed with my Dad
My children albeit grown up now, and my new husband of 6 years (my first husband died after two heart attacks Carer for him at the time as well as Dad) they are all on the back burner
I had to collapse before in order to just get some sort of care package in place, he said he could manage he only managed because I do all his thinking and needs
They agreed he could have carers three times a day
Slight relief for me but I still did all the tablet ordering, washing, cleaning, sorting out meals, shopping, I was his 24/7 on call person he did not pull the cord he called me
I will explain he is 94 with a sharp brain and I love him very much
He is registered blind
He is very very deaf
He has an aortic aneurysm which is very big and could pop at any time ( it will end his life)
He has permanent Atrial Fibrillation ( causes concern each time we call an ambulance when he falls)
He has a massive bi ingual hernia which is now so large it is causing him to walk bent
His heart is enlarged
He now has a permanent catheter fitted which often leaks or blocks as he’s bleeding from the bladder they think he may have bladder cancer but the test is horrible and won’t change the outcome so they are not pursuing it
He does not have control of his bowels
When he had the catheter fitted the main objective was to get him out of the hospital bed as fast as possible so they sent him home, with no medical help back to the three times a day carers who are mainly only there about 10 minutes each visit as they have so many clients to get through
Managed to get district nurse to come out because his catheter was leaking, meaning I was washing sheets and bedding every day, and his bowels meant I was washing his bottom when he had an accident which didn’t coincide with carers visits bearing in mind he is my DAD
District nurse said it’s the hospitals responsibility, it’s very nice to meet you both sorry I cannot help you.
The next day Dad was in pain and leaking even when sat in chair phoned doctor but they said go to A and E
Get to A and E doctor says it’s district nurse responsibility, but when they saw the catheter they knew none of them could do it so eventually admitted
Urologist didn’t come round until late in the evening he found the catheter totally blocked, Dad had a nasty infection and he was severely dehydrated
They treated him and then wanted to send him straight back to the same situation, I refused
They have put him into an assessment centre attached to the hospital which runs like a care home
Social services came last week to get him reassessed I want him in a care home he wants to go in a care home
She saw him shuffle with a tri walker to the dining room and eat his dinner therefore he can cope and she refused point blank for an NHS CHC plan she said he doesn’t fit the criteria she didn’t realise he was blind she didn’t have any notification of all his other illnesses
She told me I need to get a catheter care plan in place and I need to get a GP report of all his conditions,
I said you are putting everything back on me I ran out crying, and left her with my son trying to continue to argue our case
He said to her ok so you send him back home carers already been he’s pooed what is the process, leave him in a state until the next Carer comes open to infection skin sores etc
She said incontinence is no reason to receive CHC he does not fit the criteria
She said I should not be washing his bottom and it’s a Behavioral problem between me and my Dad
She was going to tell him he wasn’t allowed to call me
I am a kind warm hearted person who could never pass by anyone who’s in trouble let alone my poor Dad so yes perhaps my Behaviour is wrong but I love him and want him safe
He’s had multiple falls this year ambulances called, sometimes taken to A and E sometimes left at home, which the ambulance crew are stuck sitting with us for hours until they can get someone to sign them off
So they are still adamant they are going to send him home with 4 times a day carers, the place he is in says he can manage, but they are escorting him to the toilet every time and he sat and pooed at the dining tablet the day that social worker was there, how I wished I had the strength to make her go and clean it up and see how well she got on with he can manage
When I got home, I just sat and cried and cried, I want to sit in a corner and bang my head, I want to run away. I am exhausted, spent, numb, dead inside, this is not how my Dad wanted to end his life he just wanted to pass away in his sleep but he’s ending up with pain and lurching from one crisis to the next
My husband doesn’t know how to help me, and my son got me a doctors appointment as an emergency
My doctor said I am exhausted physically and mentally it is a totally intolerable and untenable situation that I cannot physically or mentally sustain she said my Dad has replaced my Mum with me.
She said I have to walk away for my own sanity and SS will have to treat him without a Jenny who has given up all her life to care for him she said enough now I need to live my life doing things I want to do because I’m already a pensioner and the rest of my life is slipping away from my grasp
She said if I was at work she would have signed me off for at least three weeks
She said I need to heal and find my own headspace
So here I am, I have cancelled the Carers allowance no amount of money would be enough to pay for what I’m going through
I feel like an awful cow who has abandoned her father at his worst hours of need, but SS would force me to carry on if they had any financial hold over me.
I’m trying to get my headspace back it’s very very difficult, where does this amount of tears come from
I haven’t visited him since Thursday and I dare not, my son and daughter have told him I am ill they haven’t said why so he wishes me better soon
I will be going to Sweden when I get old (I’m 64 I don’t even get my pension I had to give up work for Dad) I wouldn’t wish this end on my worst enemy
Do you have your own home?
Does dad own his home?
If so, then do NOT go and see dad regularly at the hospital, the more concerned about him, the more they will try to bully you. I was in a very similar situation to you.
Realistically, dad is nearing the end of his life, and his needs are only going to get higher and higher until he passes away.
I remember driving back from mum’s house one day, and a little voice in my head said “I just CANNOT do this any more”. I done too much for too many for far too long.
Please, please don’t feel guilty, you have nothing to feel guilty of. Feel PROUD of what you have done for dad. He now NEEDS a team of carers 24/7 which you cannot do.
.
Jennifer,
I agree wholeheartedly with what Honeybadger says, you are not a cow!! You are exhausted and at risk of total breakdown yourself. Social care are not seeing the whole picture.
It is not the social worker’s decision to make re whether he will qualify for CHC, there is protocol to follow and the assessment involves more than one person.
It is not up to you to sort out a catheter plan and to get the GP to sort out all his conditions!!
Get your son to look at the link Coming out of hospital | Carers UK so he is well informed and can fight on his Grandad’s rights.
I also strongly advice him contacting Age Uk to get an advocate for your Dad, to push for his wishes.
Melly1
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It is not the social worker’s decision to make re whether he will qualify for CHC, there is protocol to follow and the assessment involves more than one person.
Love it !
Last posting on the main CHC / NHS Continuing Healthcare thread :
As a refresher , the section colour coded will not go amiss ?
CHC : WHAT IS IT / QUALIFICATION / ASSESSMENTS / VIDEO ( PROFESSOR LUKE CLEMENTS )