Hi. I am new to this website. I have been looking after my Father by myself for 3 years. He has had 2 Cancers and now has Dementia and brain damage from the treatments for his Cancers. Because of his mental issues he ruined my family’s finances and my Mother and I knew nothing about it until I had to deal with his finances when he was hospitalised with his second Cancer. Looking after him alone is exhausting. I used to have a career and a good life but now all I do is look after my Father and my poor Mother who is physically ill and never got over what my Father had done to their finances. My Father is incontinent and has fractures of the spine, he is blind in one eye, profoundly deaf, he is incredibly ill - physically and mentally. I have to do everything for him and I miss having a life. When I am nice and kind to him he takes me for granted. When I am more chilly he won’t eat and sulks. It is so squashing and utterly exhausting. I never go anywhere for myself ever. Apologies for the huge amount of information. I am just so exhausted.
Hi Isabel … welcome to the forum.
Extremely quiet on here as I type … I’ll provide some links to external sources in bullet type format ahead
of others extending their welcomes and providing more guidance.
A sorry state of affairs to say the very least.
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Father … needs / condition … CHC / NHS Continuing Healthcare … main thread :
Whole thread is colour coded to help readers find what they are looking for … follow the colour :
CHC : WHAT IS IT / QUALIFICATION / ASSESSMENTS / VIDEO ( PROFESSOR LUKE CLEMENTS )
FAST TRACK NHS CONTINUING HEALTHCARE ( NOT JUST FOR END OF LIFE ! )
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Mother / you … Upto date Needs / Carer Assessments through your LA ?
Needs :Getting a social care needs assessment - NHS
Carer :Carer's Assessment - Advice and help for Carers | Age UK
High time to become a care manager … and not a carer equivalent of a Swiss army knife ?
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Housing … any problems ?
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If a potential move into a care home is on the cards … assuming NO CHC funding … AGE UK for the basics ( Very extensive ) :
Care homes | Information and Advice | Age UK
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Council Tax … discount / disregard ?
https://www.entitledto.co.uk/help/council-tax-disregarded
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Benefits / allowances … EVERYTHING currently being claimed ? … father / mother / you ?
An online benefit calculation for that financial m.o.t. :
Enough from me … I trust the above will assist ?
No, you do NOT have to do all this. NO ONE can be forced to care. We can support you to choose how much you do, if anything. Firstly, have you been told about NHS Continuing Healthcare? When did Social Services last do a Needs Assessment for each of your parents, and a Carers Assessment for you?
Thank you for your words and kind comments.
The social services have been absolutely appalling to us. When my Father finally left hospital in 2016 after months of hospitalisation, Cancer treatment and treatment for pneumonia and his mental state as he was talking gibberish, he was put temporarily in a care facility until my Mother and I could get things together for looking after him at home. I also had to try and deal with the financial mess, and ask the Citizens Advice for help. The social service woman I spoke to wanted my Father immediately out of the care home and told me to my face that if I didn’t take my Father home on a specific date then he would “die on the streets”. Her exact words. I was so shocked and needless to say it made me cry when I was going through so much already. I couldn’t believe how uncaring and rude she was. Because of this I am not trusting of the social services at all.
As for NHS continuing healthcare, no I don’t know about that. I get Carer’s Allowance and Income Support but nobody checks on me as a person. I’m just my Father’s carer and not a person. It’s like I have no identity anymore.
Thank you for your comments. It’s nice to know that there are people who take an interest.
Your welcome , Isabel.
Time to explore that CHC / NHS Continuing Healthcare thread ?
Chris,
Yes thank you. It’s something I didn’t know about. The link to your thread and information is interesting. I will have to really look into that. I didn’t know there was such a thing.
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I didn’t know there was such a thing.
One of the best kept secrets out there !
( Father in hospital …not one academic or suit even bothered to mention it ? )
Chris,
Every officious type that I have had to deal with during this hell, from medical professionals, social service people, council employees, even Cancer charity people, have all been cold and unhelpful at best and sadistic and rude at worst. They have all treated me like I’m just a slave to my Father and have no feelings.
As for doctors - they seem to either have no clue about anything outside of their life and career bubble or simply don’t care what happens to patients and their families once they are no longer in front of them.
There isn’t enough help out there for people on an individual level - just officious jobsworths grouping everyone together as a whole rather than seeing people as human beings with different needs and feelings. It is horrifying.
And as you say, they hide information that may benefit people.
Yep … a very good point lost on those that write the guides of which the links are published on this forum
for the benefit of readers.
Most of the so called guides do NOT reflect the actual reality out there.
Time for our own CUK to take careful note of that in their own guides available elsewhere on this site.
In my worst nightmares I never thought that life could be like this, made infinitely worse by the lack of actual advice, help or information.
When I saw someone from the local council she actually laughed because I asked for help and told her that my Father’s brain damage and dementia had caused him to ruin the family finances. She found it funny.
And doctors know nothing about helping people beyond poking and prodding the poor patients, and bombarding them with damaging treatments.
It’s appalling.
These so called professionals laughing! My daughter and myself went to empty hubbys room in the nursing home. ( He passed away in hospital) One of the so called nurses burst into the room to offer condolences. She was actually eating a sandwich, grinning and spoke with her mouth full. DD lost it and shouted at her to get out. Its something I will never forget. Hubby’s funeral on Friday. Then something will be done. A complex nursing home and the so called nurse doesn’t even know how to give a condolence. She knew hubby and our family for over 3¾ years.
Now it’s time to turn the tables!!
I too have met some horrible social workers, but there are some good ones too.
Write to the Director of Social Services and ask him to arrange for an urgent Carers Assessment for you and mum. Also ask for an Urgent Needs Assessment for dad. Explain that ever since hospital discharge on xx/xx/xx he has very significant health needs. and you are NO LONGER able to care for him.
Send it Recorded Delivery, and staple the slip to a copy of your letter, and put it in a new file.
Just that, nothing more. Think of it as a “fishing” letter.
Then write a similar letter to your local CCCG - Clinical Care Commissioning Group, again saying you can’t look after him any more, that he needs NURSING CARE.
Again, send it Recorded Delivery.
Tell us when you get a reply.
Now tell us more about mum, age, disability etc.
Do they own their house?
pet66 -
That is utterly despicable. I am so sorry for your loss. It makes it a million times worse when these unfeeling and seemingly psychotic ‘professionals’ behave in that way. They have no empathy whatsoever and never seem to think that one day it may happen to them.
I remember when I took my Father to the A&E (which I did about 6 times before he was helped) when he was finally diagnosed with his 2nd Cancer and he was terribly incontinent with urine. I kept searching for a nurse to supply something for him to urinate in and they kept laughing because he needed one so often. And a female nurse was too busy chatting up a male nurse to bother helping. Some of them are truly evil people. My sympathies.
bowlingbun -
That is interesting. I will reread what you have said here. Thank you.
My Mother’s health has declined enormously since my Father’s 2nd Cancer and the shock of finding out about the finances. She now has high blood pressure and is taking medication which makes her feel ill. We are both so depressed that we often wonder why we keep going.
My parents own their own house. I live with them so I can be my Father’s carer and I deal with all their finances now and business matters.
The trouble is that I’m not well either. The stress has given me thyroid issues and adrenal gland problems.
If you and mum both have significant health problems, then the time has come to consider whether dad NEEDS to go into residential care, a nursing home that can deal with anything that happens until the end.
On the forum, we try to separate NEEDS from WANTS. If dad has under £23,000 in savings, then the cost of residential care would be met by Social Services (they would take most of his pension as well).
Have you looked at any nursing homes? If not, consider doing so. Ask the council for a list of homes they use.
How old are you, mum, and dad? This is more relevant that you might realise.
Please don’t be put off by my post re the nurse at my late husbands home. He was looked after well generally, my family and myself oversaw his care, and soon had any issues sorted.
His needs far outweighed the wants of the family. Your mothers and your own health are extremely important too and you cannot continue as you are.
Your father sounds like he should be entitled to CHC. His needs are not being managed. Worth mentioning in your letters of concerns / complaints.