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First time posting - because I need advice, and quick!

Posted: Sat Mar 03, 2018 8:25 pm
by Frankie
Last June I gave up my full-time job to move in with my 93 year old mother. I was happy enough to do this as I immediately got another job which I absolutely love, but which isn't 9 -5. Basically i work from home and am just called out for a few hours a day when I'm needed. Fine in theory and it did work well at first. At the time my mum had a morning and evening visit from care agency staff (who were fairly rubbish to put it mildly, but my sister, brother-in-law and I coped). My sister was able to carry on with her extremely demanding job, he worked part-time and I even managed to have the very occasional night or day out with friends.

My mum at that time had mobility problems, urinary incontinence, congestive heart failure, a massive inoperable ovarian cyst, too many TIA's to count and had been given a diagnosis of vascular dementia. She was also starting to have swallowing difficulties - she aspirates quite frequently after eating causing massive coughing, spluttering and choking fits which sometimes cause vomiting. She also constantly complains of pain in her back and shoulder although no-one has ever been able to identify what's causing it. She also has very little short term memory. She has frequent recurring UTI's. She was admitted to hospital in September with a chest infection, but in the weeks before she went in her behaviour had become very challenging. She became quite nasty, attention-seeking and very selfish and wouldn't let me go out of the room to cook, have a shower or do my hair and makeup. She was resentful if I got called out to work or went to the shops or took the dog for a walk. Even if I was in the room within 3 feet of her working on my laptop or reading she would ring my mobile to get my attention. She'd also become very very restless at night and I was getting hardly any sleep. After the initial hospital admission she was in an acute ward for a few weeks, then a step-down ward in a different hospital for a couple of months (where she got pressure sores which she'd never had before),then just before she was due to come home she got flu and pneumonia and was admitted to an acute bed again. She got fantastic care, was put on a proper turning regime so the pressure sores went, all the swelling in her ankles and legs disappeared, and although she was impacting and needed a lot of enemas and also going into urinary retention so had to be catheterised they have managed to get her fit for discharge and she's due home again. Now the problem is this - although she's been assessed as not qualifying for CHC they have said she needs 24 hour care. When she was very ill something miraculous happened with her personality. She turned into nice mum again, a bit vaguely confused but a pleasure to visit and be with. But... as she's recovered her strength all the nasty, attention-seeking behaviour has returned and the nurses have to sit one to one with her or have the bed rails up because she's so wilful and such a high falls risk. So I have 2 questions. Firstly, has anyone ever come across this before - elderly parent behaving horribly when physically recovered from illness but lovely when really ill? And also we've agreed to carers coming in 4 times a day but I'm now thinking that maybe a personal assistant might be better as otherwise it's going to massively impact on mine and my brother-in-law's ability to work. And I so love my job even though it's part-time. If anyone has any experience of employing a PA for care I'd really appreciate some advice.

Re: First time posting - because I need advice, and quick!

Posted: Sat Mar 03, 2018 8:35 pm
by bowlingbun
Google NHS Continuing Healthcare. Frankly, your mum should be in a home for the elderly mentally infirm, EMI. Sending her home isn't the answer, it won't work long term. Mum is, sadly, only going to get even worse.

Re: First time posting - because I need advice, and quick!

Posted: Sat Mar 03, 2018 8:58 pm
by Frankie
Thank you Bowlingbun. Unfortunately we've already researched Continuing NHS health care to within an inch of our lives. Apparently to get it you have to be so half-dead you're indistinguishable from a corpse as far as we can work out. Mum's been assessed as not having a primary health need. The same thing happened to our friend's mum who has advanced Parkinsons and a broken hip. They caved in and are paying over £1000 per week for a care home but they're a very wealthy family. Which sadly we're not. We have wondered if it's worth challenging, but on the other hand mum seems to want to be at home so we thought we'd give it one last try and see how we go. The other complication is that I've now rented my flat out and there's no way on earth we could pay care home fees without selling my mum's very modest house - where I'm now living - so if we did that before my tenants leave I'd be homeless. Oh, and the other thing I forgot to mention is they now suspect she has a malignancy but won't do any tests to confirm it because of her age and frailty. This elderly care thing is a living nightmare and my sister and I are now so stressed my sister thinks she'll outlive us. Also, we've had to really fight for a hospital bed because now that she's been treated they said she has no risk of pressure sores. Yet she's still on an air mattress on the ward??? Mad, hey!.

Re: First time posting - because I need advice, and quick!

Posted: Sat Mar 03, 2018 9:09 pm
by bowlingbun
Even if she moved into a home you would not have to sell it immediately, or until she diedYou can stay there and the council can put a charge on the house. The first 12 weeks have a property capital disregard anyhow. What is her prognosis, with regard to the malignancy?

Re: First time posting - because I need advice, and quick!

Posted: Sat Mar 03, 2018 9:16 pm
by Frankie
There isn't a prognosis because they just suspect it's likely. But the 12 week disregard information is very interesting, thank you. I had no idea about that. If you have time please let me know how that works. And also, if you have experience of Continuing NHS care do you think it's worth challenging? I think it may be the area we live in. I believe that although it's supposed to be equal across the board throughout the country it can be very dependent on how your CCG interprets the descriptors.Have to go offline for a bit now but if you could answer those 2 questions I'd much appreciate it.

Re: First time posting - because I need advice, and quick!

Posted: Sat Mar 03, 2018 11:02 pm
by bowlingbun
Where you live has everything to do with CHC. In Hampshire where I live it's very difficult, but in other ares the rate is 800% , yes, 800! higher. Getting mum sorted in a forever home is the only option left. I can't remember the new name for all the relevant regulations, but if you google "Charging for residential care" you will find more, and our CUK helpline will know, send them an email. Does anyone have power of attorney?
You can make a retrospective claim for CHC but it will take ages, concentrate now on getting a place in the right home. Ask the hospital, IF mum moved into a nursing home, what sort of home should you be looking for? Have the hospital done a checklist assessment, had a meeting involving you? Is mum receiving Attendance Allowance? In any case,mum should be entitled to Funded Nursing care, just ovef £100 when my mum had it.
Find all the financial records you can, add up all the savings etc.
Then work out weekly income, including Funded Nursing care, Attendance Allowance, and all pensions.

Working on fees of £1,000 a week, take away the total weekly income from the weekly fees, and thag is the amount you need to take from her savings, if any?

Would you be paying rent or entitled to Housing Benefit to officially rent her place until you move back to your flat?

Re: First time posting - because I need advice, and quick!

Posted: Sat Mar 03, 2018 11:59 pm
by Greta
It is always worth challenging the CHC decision - who decided she has no 'primary health need'? As BB says, it may be difficult in your area, but you should try. In our case social services and the NHS representative too were both convinced my brother should get it despite being rejected, and the second form-filling session was conducted by a different team and was successful.

Re: First time posting - because I need advice, and quick!

Posted: Sun Mar 04, 2018 1:03 am
by jenny lucas
Being cynical, and very possibly quite unfair, one could surmise that she is being 'nice' when in hospital and really ill, because she knows how dependent she is on others, whereas when she is home she can take you more for granted?

But that may well be unfair. Maybe being in hospital is frightening, and so 'cows' her, whereas at home she feels 'safer' again?

I know residential care or permanent care-workers are expensive but it might come down, alas, to just how long she is likely to live now. That really is going to be the 'big question' as to what you all decide to do, to struggle on, or throw in the towel on family-caring.

I know it's horrible, but for that reason finding out whether she does or doesn't have a malignancy is critical to that end. Would it be worth having her diagnosed privately?

One of the brutal 'rules' about family caring is that what we can do for the short term is not what we can sustain (and keep our sanity etc) over the long term, hence my saying it really all does boil down to her life expectancy now, alas.

(Whatever the reason she became 'nice' in hospital, it's good that she still can be, and you know that the 'real mum' is 'somewhere inside'. It's so distressing when their personalities change and deteriorate, and hard to remember it's the illness making them like that, not the 'real' person we know and love....)

Re: First time posting - because I need advice, and quick!

Posted: Mon Mar 05, 2018 1:31 am
by AY_1802
Hi there

If your mum has been given something to ease the constant pain she complains of, that would explain her slightly confused state and being very nice. Normally prescribed on the ward to ease any pain to help the patient relax prior to any procedure. Taken off immediately after, and if she is in severe pain, it will feel a lot worse after experiencing a pain free period, as the meds wear off. Maybe she is trying to get your attention by using slightly unorthodox methods, if she believes she is not being listened to, and in pain. I may be wrong, but you can easily contact the hospitals where she had been staying where they will have her meds charts whilst under their care. Nothing to lose.

If you are considering approaching the Local Authorities for a PA your mum will need to explain in detail how and why she feels a PA will be beneficial to her future goals, for her Social Worker can prepare a Support Plan to meet your needs. This will then be reviewed at management level where they make their decision. Can take up to 8 weeks, and even then, if there are amendments to be made, a further review will follow.

Not meaning to sound harsh, but if you are intent with carrying out your mums wishes, by her staying in her own home, and not put her into a suitable facility, then you and whoever else is caring for her, have to make some major decisions on how you intend to undertake this monumental task. Your mother really should be in a suitable environment who's soul purpose is your mothers health and wellbeing, especially now you have dementia added to the equation.

Re: First time posting - because I need advice, and quick!

Posted: Mon Mar 05, 2018 10:33 pm
by Rosemary_1706
Can't offer any real advice but just a comment. Why when they suspect malignancy do they not do tests to confirm and offer treatment options?

My "frail" 95 year old mum has had multiple scans and biopsy to diagnose a cancerous mass. Admittedly the team has not yet told us what they propose in way of treatment, but to suspect malignancy and not follow up citing age seems wrong.