Dad dementia pneumonia reenablement

[Daddylonglegs1965]

Elderly DF has vascular dementia which has gradually worsened. He is getting more and more confused, is definitely incontinent with wee at night and has been wearing pants for this at night for awhile and more often during the day. The day he was admitted to hospital he lost control of his bowels several times and he has had this problem whilst on the ward more than a couple of times. My mum found this very hard to deal with as anyone would.
He keeps getting repeat chest infections/pneumonia and UTI’s and has had more antibiotics than anything. He won’t drink enough fluids as he’s frightened he wees himself. DM also elderly has understandably had enough and is struggling physically and mentally. He’s still in hospital but we found out today he will be released and sent home with a re enablement/care package this week which I had read was free for 6 weeks but we were told today this has now been changed to only being free for two weeks?
We have had several rushed phone calls today from a stressed out not properly informed hospital social worker. I am not convinced she knows what she’s doing, what she is talking about and whether proper support will be put in place she keeps back tracking and changing her mind about how to access support, what the support consists of and how much the support will cost if needed after the two week period. They have agreed the maximum 4 visits a day but we don’t know how long each visit is supposed to last and they have talked about setting up a falls monitor, bed sensor and responder (not sure what the responder is) but given dad still lives with my mum who is still ok unless it’s to clean up if dad has bowel continence at night? I did ask but just got dismissed and she repeated responder I explained that I was new to all this and could she explain what the responder service was (but she didn’t).
I contacted the memory team today and they are going to phone next week and arrange to see DF at home soon.
All any advice appreciated thanks.

Thanks Caterpillar. I have absolutely no idea how much they have in savings and receive in pensions. I would think they might just qualify for funding but I really don’t know. My mum sold my dads car a year ago it was about a year old but just a well looked Fiesta and I think they still have some inheritance left from my gf but I would doubt it equates to that amount but I am unsure how they class their pensions (my mums is just a state pension) but my dads is an employers pension.

The visits last 15-30 minutes so assume if we had two visits that would equate to 2 x £10 and they wouldn’t charge 2 x £20 (for 2 visits both lasting under half an hour)?

Yes that’s right, you r parents should only be charged for 30 mins.

Also bare in mind that weekends and bank holidays when the carers are on a higher rate, the service users will also be charged a higher rate.

Before the visit at the weekend, make sure your mum understands that she has to talk about the worst days, not the better days! So DF needs assistance every morning and evening for personal care, dm is unable to manage this as she is not strong enough. DF is unable to walk up and down stairs unaided. DF is incontinent in the night and dm is not able to manage this without assistance. DF is a fall risk, dm is unable to prevent this.
Ensure they claim as much financial support as possible. Some support is not dependent on income or savings. Speak to the social worker about this.
If your DF does not have capacity to make decisions for himself, then you or your dm can do this on his behalf. My MIl was discharged from respite care against our wishes as she was deemed to have capacity. She then fell, on her first day back home, got concussion and had to be readmitted to hospital. It was then agreed that she didn't have capacity any more, and in the end didn't ever return home but went back into care.
It's a horrible situation to be in and can seem so frustrating. We had to deal with a change of social worker every time she was readmitted!
I wish you well 🌺

Thanks all I will prime my mum before the appointment x

Do reapply for attendance allowance- ask carers uk or age uk to help complete forms. Order paper forms as then the claim will be from that date. Can help a bit financially

Be there for any meetings if you can. We had this with our DM and quickly realised that without us she would spend her time sitting in a soiled chair waiting for her 4 visits a day which may or may not happen and in no time would have another bad fall.

SS should be doing what is in his best interest but they will do what is cheapest and easiest for them. You have to tell it like every day is a bad day. If they think your mum can cope with the basics most of the time they’ll leave her to it. The level at which they’re deemed ok to be independent is shockingly low.

she could maybe manage Don't let her say that! That's your absolute fall back position, not your start point for negotiation.

My experience was: the carers documented each day how long they had visited for and how many minutes they had spent actually "caring", and they used this as evidence for reducing the number of visits. Furthermore, they produced a signature from my father saying he didn't need care ... I asked him at the meeting what he thought he'd signed, and he said he had signed to say that a carer had visited, so I made sure that this was documented, and a note to this effect added to his signature. Moral: don't take anything at face value, be prepared to ask questions.

Keep firmly in your mind the phrase "a need that is met is still a need" - in other words, when discussing your father's needs, start form the basis of what he would need if he had no help (not even your mum). Perfectly fine for your mum to fulfil some of those needs if she is willing and able, but they are still needs.

Have a talk with your mum and work out what she can do 24/7 365 days of the year, and what she can do if she's got a cold or had a bad night's sleep or is otherwise under the weather; and what would happen if she had a doctor's appointment and had to be away over lunchtime, for example, or whether the level of caring she is offering will enable her to maintain the support network that she will need if your father pre-deceases her or goes into residential care.

Excellent advice above.

Long term a lot is going to depend on whether they have savings so they pay for their own care or no savings so qualify for council care. You need to get this clear as soon as possible - do you have financial power of attorney for your dad and/or mum? Is you mum on top of the financial position?

Also definitely get that attendance allowance sorted - Citizens Advice or your local Age UK will help you with that.

Thanks all excellent advice, yes that was my mum saying to me I wouldn’t say that to them & have told her not to mention it either. Have Phoned up about a new attendance form today and contacted Age Uk to help us complete it.

It’s such a bloody crap time and you really have to be aware of all the pit falls and have your wits about you.

Turns out mum is saying they have got more than 46K in the bank which I was really surprised about so they will have to pay for Carers.
Now we have to decide whether to source our own private Carers or let the enablement team refer us to a social worker and go down that route.
Does anyone know if we are paying for Carers anyway is it better to source or own carers or ask enablement to refer us to a social worker and go down the social care route?

It’s worth getting social worker involved- they may be able to recommend care companies. Do you know anyone locally who uses care?
Two franchise organisations who have good reputation here and in some other places are home instead and bluebird care.
You may get some free care initially as it can take a while to set up.
Good luck

We use home instead for my mil in West Sussex and are pleased with the service from both the carers and the office. Just in case that helps at all.

Thanks both if we get social worker involved do we have to use the companies they suggest? I have put an anonymous post on a local FB page for my area asking about care agency recommendations locally.

Re night time carer:

www.communitycare.co.uk/2020/01/17/council-breached-care-act-setting-arbitrary-upper-limit-womans-live-care/

The criticisms of this case show SS can provide night time carers for elderly people, as in a live in carer in this case.

When we got care, SS put out a contract and invited tenders and chose the company, so from our point of view it felt the same as in the old days when SS employed their own carers. If I remember rightly, we were charged £15 ph - I was surprised how reasonable it was. We also had a period while they were setting this up when the NHS re-enablement team continued, and so we didn't pay anything.

If you go for SS, they will be scrutinising what the carers actually do, and will cut down on visits if they don't think they're needed. Private care won't care whetehr they're actually doing anything, they'll come for the period you've paid them for. You may also be able to select the times better (no ridiculously late rising and early bedtimes), and you can hire someone just to come and give a bit of company, if that's something you think your mother needs.

In our area the social worker advised I found a care company myself rather than using the social services appointed one. I asked her if she could recommend one and she said no, she wasn’t allowed. As she was leaving though she gave me the name of one ‘I might like to consider’. I also asked some of the council carers who were coming if they knew of any which came recommended/which was should avoid. I also asked a friend who works with older people for a charity role. The same care company kept coming up as one to recommend. I got them out and we went through everything together. I really rate them too. They are much better than either the council provided or hospital provided carers. Unfortunately though it is expensive (Think we pay £17 for each half hour visit)