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Struggling in limbo - Carers UK Forum

Struggling in limbo

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I am the main carer and only family in this country for my Dad who is 83. I live with him in his house. He was diagnosed with parkinsonism two years ago has mild memory problems and had a pacemaker fitted last year. In July my Dad was admitted to hospital via A&E with dehydration and a UTI. After a week he had a failed discharge and had to go back in hospital the next day as his BP dropped very low due to being put back on BP medication too soon. After three days he was discharged again. I booked a GP appointment for my Dad as after doing well for a few days after discharge he was experiencing dizziness, weakness, swollen feet and ankles and going to toilet more. GP said his blood count iron levels were low based on the blood tests the hospital did and that he was surprised the hospital did not flag this up! Due to the change in toilet habits and low iron levels the GP did an emergency referral to the bowel clinic for further tests. He has now had a gastroscopy (which was clear) and a CT colonography scan (very stressful preparation as my Dad did not want to drink much the day before or take the prep solution) for which we are still waiting the results for. Since last week he has been having daily diarrhoea and pain, lack of appetite and tiredness. Have phoned NHS 111 for advice who just say to see the GP. My Dad’s GP does not do home visits, only telephone appointments if you cannot go for face to face appt. All the GP is saying is to treat the diarrhoea with loperamide and rehydration tablets and they will push the hospital for the results of the scan. I have had to take two weeks off work and buy incontinence products and help Dad change underwear and trousers at least 3 times a day. Almost daily cleaning, washing of bedding and trying to encourage him to drink and eat is taking its toll on my health. His six-week post hospital reablement care package finished a week ago, so we currently have no care support. Just completed the financial assessment form for funded social care. Just feel in limbo. Have contacted social services who have agreed to arrange an emergency package with carers hopefully coming in the morning and evening while they assess the finances. Feel like the hospital has been negligent, they should have seen from their tests something was wrong while my Dad was there and also dismissed that there was blood in his poo and also from my Dad’s GP who doesn’t seem to appreciate the urgency of the situation. Almost feel like I have to let my Dad get so bad that I have to call an ambulance, so he will be admitted to hospital via A&E!
Sorry for the rant but have to vent!
Hi Busybee
I know all too well how demanding all that is and I think it is important you get some help on board for at least some of the personal care needed.
Will dd be self funding? If so try and arrange for at least a morning call to help get you both going for the day. If Dad will be SS funded , then shout long and loudly at social services to get some urgent help on board. They are taking advantage of you by assuming you will plug the gap.
Ask for a full needs assessment for dad once their emergency cover has ended and a separate carers assessment for you to be done at a separate time.
You mentioned buying incontinence products, this should be available on prescription so shout long and hard for this as well to your dad's GP and district nurse , who may well ask you to fill out some forms with a written record of issues and frequency etc before a referral to inco nurse. I did all this far too late along the road fo rdad having spent a firtune on pads before I got a prescription. The lesson is shout loud and don't let them forget about you.
I also see you live in Dad's house- does dad own it? If so beware if you are under 60 of house being included in financial assessment in the future should your dad eventualy need residential care.
Hello, thanks for your advice!. The SS are putting in place an emergency package which started today with a carer coming for 30 mins in the morning and the evening which will help until they complete the financial assessment. Will have to get on to the GP about the incontinence, have been on to them a lot recently to push for the scan result as my Dad seems to be getting worse. My Dad does own the house. This has been a very stressful two weeks, exhausted.
Hi Busybee, not being nosey but are you under 60? If so you do need to be very cautious of SS who may choose to disregard the fact you live there at some point in the future if they feel residential care is needed. Sorry for sounding alarmist and negative but they will happily drip feed you with bits of help to keep you there doing all the work and if they decide it is getting too much for you they will be talking about safeguarding and forcing a move into residential. Far better to be forwarned and have a plan in place. Where would you like dad to go if things get unmanageable- good idea to look around at a few. I did about 3 years before Dad reached end of life following advice I had received on here and very useful to have some background knowledge and not make snap decisions when fire fighting later on.
Depending on dad's diagnosis, he may be eligible for CHC funding- have you heard of this ?
Yes I am under 60, I am 41. I have heard of CHC funding via this website, will go down that road depending on diagnosis. Have not looked at nursing homes yet but know the house will be used to pay for it.

Main thread ... now including a kitchen sink :

https://www.carersuk.org/forum/support- ... inks-32532
I wouldn't feel guilty for dialing 999 if your father has deteriorated or is in pain. His parkinsonism is a complicating factor in his diagnosis and treatment and is probably beyond the algorithms used by the 111 service.
OP wrote: '' Almost feel like I have to let my Dad get so bad that I have to call an ambulance, so he will be admitted to hospital via A&E! Sorry for the rant but have to vent!''

Don't be sorry. I went through the exact same thing with my own health care last winter. GP didn't realise the urgency of the situation. Specialist waiting list too long and then investigations too slow. Wound up in A and E about 16X in 9 months.

I too came to feel that I had to keep returning to A and E in order to get them to take it seriously. Yet the stress of constantly having things get that bad (ambulances, ecgs, dehydration, delirium, infections, low haem, insomnia, weight loss, severe pain), eventually drove me to start plotting suicide.

Things have slowly improved now. I did a lot of googling and used my blood test results + scans to help. Took some supplements , changed diet and got GP to change meds). I'm now just about managing to avoid A and E most months while I wait for the bevy of specialists to ''do their thing''.

Plus after the suicide plot, I got put into a day centre to play music. It's helping me to to get over all the A and E admissions and the hell of being quite ill. I now feel like I can get through most days. (Let's not get into some of the nights.....We all know how they can be.....!)

My message is......It can get better..... You/your Dad are on the same NHS merry go around that many of us are or have been travelling. Don't be afraid to be polite but pushy. It was when I started getting pushy, ordering my notes, and googling that things started to move. I've heard of the same experiences from a growing number of fellow patients.

Doesn't matter if you don't have the time/energy to go through all the notes, or chase everything up. I didn't either. Who does?! I just skimmed and did the little that I could. Simply showing them that you mean business helps a lot from what I've seen. Showing up with an A4 file of selected notes made a difference (heck, even if it's just a file of letters from the hospital, it shows you're ''on the case'' so to speak ;) I also now make notes throughout each consultation (ok, except when i forget the file because I'm doing too many things at once). The appearance of being organised and pro active is, I think, almost as important as actually being so.

P.S Expect the odd angry response from staff who hate the more informed, pro active patient though. There'll be a few of those. I see that one of them wrote ''We can't stop him googling'' on my notes recently. No, you can't......Too bad Dr J! Too bad! :lol:
Hmm, so your dad owns the house he lives in, which you don't own at all, and you are twenty years off 60!

You're in a dangerous situation alas.

I think Henrietta is very right to warn you to start taking steps NOW to safeguard your position, in case things deterioriate beyond what anyone can cope with.

The brute truth is that if your dad goes into residential care, he will be regarded as self-funding, because he owns a house (the threshold for the council kicking in to fund residential care is £23,500, so you can see how owning a house automatically makes you self-funding in their eyes!).

To me, the really dangerous word is 'safeguarding'. Obviously, at the moment, no one can 'force' your dad to go into a care home, BUT, if 'the authorities' start banging on about 'safeguarding' then he COULD be forced into a residential home, if the state thinks YOU are not coping with looking after him (see below for one option however!).

If then, your dad is FORCED to go into care (ie, on the 'safeguarding' issue!) then he will also be FORCED to use the asset value of his house to pay for that care! And beware, care home fees are AT LEAST a £100 A DAY!!!!! That is £36,500 a YEAR.

The value of a house disappears incredibly wiftly into care home fees! My MIL is reaching the end of the money that was raised by selling her flat, and before long her savings will have gone to, and she'll have hit that £23,500 limit. In the space of less than half a dozen years that's something like £150k just 'gone'!!!!!

Now, your dad will NOT be allowed to give you the house, or any assets or savings at all, to keep them safe for YOU to inherit. Councils - cash strapped as ever - now take families to court on the grounds of 'deliberate deprivation of assets' - ie, they will TAKE BACK from YOU anything your dad has gifted to you in his life time. ?

So, grimly, the question you have to consider is - IF my dad is forced to go in to residential care, am I going to end up homeless and broke?

Do you own any property in your own name, could you afford to work and earn enough to rent, or even start a mortgage of your own (ie, if your dad does go into care?)

Could your dad take out a mortgage on his existing house, to raise money to pay his care home fees, and HOPEFULLY when he dies YOU could take over paying off this mortgage, in order to keep the house, or at least sell it and get SOME of its value for yourself?

Another possibility for you is that IF the worst comes to the worst, and SS says 'time for residential care whether he likes it or not', that HE can pay for whatever 'extra care' is needed to enable him to STAY AT HOME, even if that is with you being his major carer as well?

That way he is 'only' paying for the extra 'in-house' care, which is significantly cheaper (IF you pitch in as well!) than the £100 A DAY that residential care will cost him.

The brute brute truth is this - that IF your dad lives for years and years, your hope of getting ANY inheritance from him becomes vanishingly small - all his wealth will go on his care. You can only safeguard your own inheritance if you give up most of your life to look after him, AND pay for the extra care that he needs as his health deteriorates.

But PLEASE start thinking about this NOW, and planning ahead as best as can be done.
Strongly seconded by me ... TOO many have fall foul of this issue over the years.

Also , see the latest session with David Grayson , Chairman of CUK . Henrietta's question and his answer ... of sorts :

https://www.carersuk.org/forum/social-a ... -2pm-34360
74 posts