Waking up to another day caring for 2 parents

[W_1901]

So hard waking up to another day 3 years in carong for 2 parents with several complex medical issues.
I dont lnow where to start one wanting to stay in his home one in care home. Who do i go to when they are both reliant on me and struggling. Care home cant provide enough due to her complex needs
Dad fighting to live treatment daily
Alive against the ofds hospice patient. My life in tatters no one seems bothered no one to talk to family had enough; one brother totally disinterested no one to share or talk to. What a cruel situation for people to find themselves in. I have lost my identity,sense of worth and sense of humour since landing this enormous impossible task. Yet you cannot show weakness or dispair for fear of cared for feeling a burden.its so hard getting harder

[bowlingbun]

You cannot go on like this, here, we understand what you are going through. We should be able to make life easier for you.

Let's deal with the care home first. What is needed that the home are failing to provide?

The parent still at home should be getting lots of outside help. When did Social Services last do a Needs Assessment for that parent, and a Carers Assessment for you?

With complex needs, there is something called NHS Continuing Healthcare which the GP should be arranging.

If you could tell us a bit more about their ages, and illness and disability, it would help.
Are they paying for all their care themselves, or are Social Services contributing?
Are they claiming Attendance Allowance?

Would you like to tell us a bit more about yourself?

[W_1901]

Hi Thank you for responding
I have multiple support teams in place. I am prettey much an expert
Now with everything.i am having dads 4th NHS Continued Heathcare assessment this week and mums 2nd.
My local Social Services are pretty much diabolical when 1st faced with all this 3 yrs ago when my father went into kidney failure and mum declined rapidly with severe Vascular dementia. Their response was dad is independent and i go in through choice. Our story would take all day to explain. The issues are the enormity of managing all the multidiciplinary teams the constant deterioation in health as dad nears end of life. Mum
Is mobile as enough awareness to
Make everything challenging as she wants to do things her self.but causing so much disruption and work behing her. The home is great but I have to support to enable she can function at her best. She has other medical Problems too so its not straight forward as i said. Blind in one eye, osteoplorosis morphine patch depression, high blood pressure, eating disorder. Bipolar Endless. Dad even worse renal dialysis patient heart failure, dvt, eye problem, deaf in one ear. Divirticulosis, hepatomas, macular degeneration
Heart failure; treble bypass 5 stents, 2 knee replacements, low blood pressure. Poor mobility wheelchair user, diabetic, gout, absess on base spine 7 months, skin complaints and few more things but as dad said you need to be dead to get NHS continued nursing support. The money has dwindled away with mums care SS would not count what dad paid to mums home in his financial assessment ridiculous. He pays £253 to council a week as apparently private pension too high and i only go through them as they get a cheaper rate from Agency they contribute £129 a month only since July 2018 Just so a carer in morning and last thing for 30 mins really just peace of mind for me so hes not lying on the floor. Hes a miracle wants to live he has stitched in lines threads for dialysis as his main dialysis lines rotted in his chest. He is deemed as too risky wit 2 cancelled procedures for fistula. He knows hes on borfowed time. I gave up my career may 2017 as what could i do i was diagnosed with high blood pressure and stress i have not been back to GP i lnow what the trigger is but what can i do.
This is not your normal situation I kniw 2 at same time with severe medical problems not elderly frsil caring which is equally very hards on carers. Can I add 25 yrs in the Care Sector at senior level but nothing prepared me for this. I need to go now as dads dog is at the groomer this morning plus i need to help dad get prepared for doalysis then on to mum then back to dad later.
I have a home too and a dog and a family but they have to be last on list. Its sad and overwhelming but as I said not having anyone to share with who understands is hardest part. I lost my mum my best friend to Vascular Dementia
I have crsated a new lovely little life for her and my poor dad wants to crack jokes and i sm never in the mood as i am cleaning the toilet while the car engine is running to take him to see mum on days off treatment. While trying to walk his dog and think ahead sandwich for dialysis next day, supper, order pads it goes on and on and on.
I need 4 of me and that would answer all my problem.every job every phone call every arrow points back to me. Even the span he pays for guess what they ring me. Even paid for his own wet room too. Funnily I feel better already just posting this. Thank you and sorry for going on and on with only a fraction of what is going on but you did ask

[W_1901]

Apologies for typos I will check in future

[W_1901]

Ps they are 84 and 83

I did a carers assessmet last July
I asked recently what happened to it I was told. Thats the help
I got was them contributing £30 a week for the care and organising a package. In actual fact they dont do anything! when I ring upset or tell them of a relapse etc no empathy at all. If dad wants or needs extra he will have to oay???
Excuse me he pays his assessed charge that should be it.
They never ask how he is or contact him or me. I use prepay portal to pay Agency manage the payments and accounts deal with the agency re timesheets schedules carers etc. Its poor Im ok im a doer with strong nature but I do worry for others in this situation.

[Denise _1812]

Hello
Sounds like you are doing a great job under difficult circumstances.
Always here for a chat.

[Karen Dee]

Hi W and welcome to the forum.
You have ever such a lot to cope with. Please don't make yourself ill through the stress of it all. There have been people on this forum (in their 50's and 60's) who have suffered terribly through the stress of relentless caring. Your mum and dad would not want you to put your own health at risk x

[bowlingbun]

When you say "I did a Carers Assessment" did anyone actually come out and see you? I refuse to do it online.

[W_1901]

Denise, Rhona & Bowling Bun
Thank you for your supportive posts.


The case worker for dad sent it with
Some data protection forms to sign.
I completed it myself and sent it back in the post and heard no more.
I asked recently 6 months later
While struggling a bit and the response I got was what i said earlier. We have paid Council tax to out same local Authority my family and dad and mum separately for 25 yrs + yet despite his severe complex needs and palitive care needs he gets v little support once he goes home.

On another topic Something I would dearly love to know and love to alert people to is; why do we pay a percentage out of our Council tax to Social Services and our elderly parents get nothing in return or just a tiny amount towards your care; also if you are deemed to have a private pension you also fail to meet the criteria.
We all know about having savings; owning a property so when we got down to less than amount allowed
We were flabbergasted to hear you still get no support if you have a private pension. Penalised again for working hard; saving a few quid then to add insult to injury your pension is too high. People need to be made aware of this.
So fortunate mum moved 2 miles out of Borough and different set of rules caring Case Manager. Extremely helpful. When i had trouble getting dad in car to see mum the only reason for him having dialysis & living. My Borough again said no help with Community transport despite his problems.
As her home was out of Borough by 2 miles.
Option
£80 for 30min round trip if I hired a special vehicle its a Postcode lottery.
NHS nursing care assesment is geared for you to fail the assessment paperwork tool questionaires are not there to support but to avoid you getting fair scores. You have to have a end of life date usually to be successful.
Dad is terminal but noone knows when his organs are going to give up so his paliative care nurse cannot get him through even the first hurdle. He wants to remain in his home but tbh we cant afford to put him in a nursing home as mum
Is in one. We are doing ok considering. On whole NHS medical support excellent just the lack of resourses for supporting with everything else and the lack of support for carers is abysmal
I wish there was more support when it happens to both parents at the same time one at home one in care. Carers should not have to choose or divide time going from one to the other so they get a rushed and half baked effort, by family doing their best.

[Chris From The Gulag]

NHS nursing care assesment is geared for you to fail the assessment paperwork tool questionaires are not there to support but to avoid you getting fair scores. You have to have a end of life date usually to be successful.
Dad is terminal but noone knows when his organs are going to give up so his paliative care nurse cannot get him through even the first hurdle.

Screams one thing at me ... FAST TRACK NHS CONTINUING HEALTHCARE ( NOT JUST FOR END OF LIFE ! )

An initial rejection of a CHC / NHS Continuing Healthcare / NHS Nursing Fuunded Care is NOT for life !

Main thread ... now colour coded for easy of use :

https://www.carersuk.org/forum/support- ... here-35998

Sections :

FAST TRACK NHS CONTINUING HEALTHCARE ( NOT JUST FOR END OF LIFE ! )

POINTON CASE : CARE AT HOME

CHC: APPLIED FOR BUT REFUSED ?


From your posting , all three have a bearing on the immediate future.

There are Advocates out there that will help you through the process ... AT A PRICE !

Internet search ... CHC ADVOCATES ... a whole tombstone of them will be revealed.

So might Palliative Care ... :

https://www.nhs.uk/conditions/end-of-li ... it-starts/

I'll leave that aspect to other forum members with direct experience.