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.

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? It's free for "up to 6 weeks". The paperwork for ours said "If at any time in the 6 week period it becomes clear that long-term care is required, the responsibility for care will be passed to SS and will be subject to a financial assessment". So it sounds as if they've already decided your Dad needs only 2 weeks re-enablement. Would be interesting to know how they've come to that conclusion.

Our visits were 30mins; visits shouldn't be less than 15mins. They will record how long they were there, and how long they were helping. So if DF decides he doesn't want to get up at 9.30 (or if he is already up and breakfasted) they will record 0mins helping, and use this evidence that he doesn't need the early morning visit. The last visit of the day will be 8.30 or soon after and will be to help him to bed - it seems that NHS/SS carers don't work beyond 10pm.

Is the responder the call service at the end of the falls monitor? They will talk to your father, assess the situation, then call family to come and sort him out.

My only advice: decide on what you/Mum can manage in the way of support (remember this will be 24/7, 365 days a year), then reduce this by 30-50% and be absolutely adamant that you can do no more. Don't forget that on top of physical caring, you and Mum will be doing all the mental work - finding information, helping to make decisions, liaising with SS - as well as all the stuff that SS won;t cover - shopping (not just food but incontinence pads, christmas presents) so you need to accommodate this when you decide how much you can cope with.

Thanks MereDintofPandiculation - the social worker was very brusque and talked at 100 miles an hour. We did apply for Carers Allowance/Attendance Allowance back in Sept when things weren’t nearly so bad and we were honest and were refused it.

we were honest You need to make sure that honesty doesn't lead you to understate the problems. It's fundamental to remember that "a need that is met is still a need", and think about the situation if you and your Mum weren't around to help. If he were on his own, would he be able to keep himself clean or would he need to be reminded to wash, would he feed himself adequately or does he need reminding. It looks like he already needs encouraging to drink, and you can cite the UTI incidences as evidence. Keep records of every fall and near fall so you can present the risk of falls backed up with the evidence of how many falls. Is he aware of danger, or does he put himself in danger . through not appreciating risks? (eg my Dad struggled with swivelling the stairlift seat to get off at the top and was heedless of the danger of tumbling back down the stairs as he tried to shuffle off sideways).

Start thinking about all this now as you will also want to present it any time you are talking needs with either SS or the re-ablement team.

It’s a blooming minefield parents have always been proud and stubborn and resisted all help. But when my dad pooed himself 3 times at home before his admittance to hospital and my mum had to clean him up on her own. She has finally realised she now needs help to cope. Dad doesn’t have a chair lift and they do still live in a house but don’t know how he’ll cope negotiating the stairs for bed and to the toilet if he is anywhere near as unsteady on his feet as he appears in hospital on the flat. But the OT has said he can manage stairs.
Dad hasn’t had a shower or a bath for two years as he is frightened he falls so was just washing himself down in the sink. My mum has said she would pay someone to assist with this but doubt this will be covered in a 15-30 minute appointment either.

Good advice above. Also look into a swallowing assessment. Dementia can impact swallow function. It may be unrelated but repeated chest infection/pneumonia could be due to food/fluid going 'the wrong way' when he swallows (to lungs rather than stomach). It's called aspiration pneumonia. In most places it's a Speech and Language Therapist who asseses the swallow.

Thank you for that I will look into it. He is due to see respiratory later this month.

You could have a bed downstairs and a commode. Not much fun for him. Or a commode downstairs for urgent use - he may manage the stairs slowly once a day for going to bed, but not in a hurry for the toilet. Stairlifts are more affordable reconditioned, but he might find far harder than you expect to learn how to use the simple controls.

Pads may be more convenient than pants because you don't have to take trousers and shoes off to change them. They can be ordered in bulk on-line which beats going out every couple of days to pick up another dozen (and makes everyone less inclined to try to make each pad last as long as possibly ... or even worse, try to dry it on a radiator, as elders living alone are wont to do!). (I used to get them delivered to our local Boots store, as Dad couldn't be relied on to hear the doorbell, and Boots staff always carried the big boxes out to the car for me).

In my experience, SS won't be worried about shower access as long as he's getting a good wash at the sink. It's perfectly possible to stay fragrant without a shower. Older people can feel the cold more, and stepping into a shower there's always that brief cold feeling as the furthest out spray hits. Not to mention that you need the shower room much warmer than a living room to avoid a wet shoulder feeling cold and shivery. But yes, get help with washing - and SS should provide this if you explain he can't manage himself (think of things like washing hair, reaching his back, or simply reaching far enough behind to wash after defecation) and that your mother isn't able to assist.

Don't let you Mum mention payment. Get as much as you can from SS then pay to fill the gaps, rather than find you're paying for things that they would provide, and can then not afford to fill the gaps.

Get a referral to the continence team your dad will get pads on prescription. Not sure if that's how it works in your area as a postcode lottery I'm afraid

Oh and continuing health care. The sw can /should help with that or nurses on ward before discharge.
I feel for you and your family. It's bloody hard work.

First day home very hard for my mum. Dad slept a lot (Which my mam can’t get her head around and thinks he’s being lazy), confusion, his balance was bad (nearly fell a few times), he’s still coughing and still taking antibiotics, he‘s rushed to the Commode which OT provided from the hospital, not bothering to wash his hands and my mum had to help him wipe his bum after a boo he said I don't normally bother with that now. We have asked for a continence assessment and someone from the memory team to come to see him next week. The first visit at lunch time happened as they were sitting down to lunch (she came said I can see everything things ok I’ll let you get back to enjoying your lunch), the tea/dinner time visiter was nice but young and inexperienced and wasn’t sure what she was supposed to do didn’t do anything and didn’t stay long, I don’t know how the last visit went or what kind of a night they will have had. Thanks for the tips re the pads.

Get a referral to the continence team your dad will get pads on prescription. I believe that the NHS supplies at the rate of two a day. That will not be enough.

Start keeping a daily diary of what is happening and what your Mum is telling you - eg the not wiping. It sounds as if you are being brushed off - in a crisis situation only those who are not coping will get help. A diary will help you with the evidence that your mother is not coping. Too much of the caring falls on those who are old enough that you would expect them to need carers themselves.

Thank you for the tips it’s a blooming minefield. My dads had a couple more near miss falls again tonight and my mam is just shattered and living in her nerves. We supposedly have a continence assessment lined up booked by the enablement team but were told it could take weeks!!!

I've never gone through this, but a carer is entitled to a SS assessment of their needs. It looks as if you should pursue this for your mother.

Thanks so for me not being used to all this the hospital enablement team have put a care plan in place which has just over a week to go.
Alongside my contacting the Memory Team for a dementia assessment for my dad do I also contact social services or would it be adult social care to ask about this please or someone else?
Many thanks
Also anything else I we need to do.

If you can, that statement about the OT saying he can manage stairs should be challenged.. how does the OT know that? I thought these things had to be evidenced. Does your mum remember the OT doing an assessment?

The OT did the assessment in hospital. He can do the stairs with the hand rail and someone going behind him. He has a commode downstairs and upstairs now which makes the stairs less of an issue. But him standing up or walking between the kitchen and living looks scary enough.

Yes, SS or the NHS can provide care workers at night! DD had agency care workers for years, funded by SS and later the NHS. Quite a few told me how they did night care, for children with health problems like they had cerebral palsy and could not turn in the night; or they stopped breathing.

We were offered night care, but didn’t want strangers in the house 24/7. DD had a care worker from 10 am - 6 pm all day, as it was!

Daddylonglegs1965
Does your council have a 'Older People's Team'.
I've been through this with my mum. Her social worker was a nightmare but the older people's team were really good. I'm in Glasgow dont know if your council will have it. Definitely worth checking.

Last night wasn’t so bad from what I can gather I the 4 visits a day are working ok (but it’s the continuous strain and pressure on my mum when they have days my dad can’t be left on his own at all especially in the first two weeks.
Not in Scotland would this be the same as adult social care.

@Daddylonglegs1965

Not in Scotland would this be the same as adult social care.
Might be, I'm not sure.

Re-reading your pp, Do you pay for your care package in England? In Scotland you get free personal care.

We haven’t paid anything yet but have been told this package is only free for 2 weeks.

It’s pretty area dependent, but where I am a reablement package of care would be put I place and his needs would be assessed for and on going needs. If a need was identified he would be passed to social services and his funding status discussed. Whether he would be self funding or ss funded, they could still help with getting the care package set up.

It’s so area dependent though. The hospital I work in covers two counties and the provisions are very different. One has amazing support for leaving hospital and one doesn’t. It’s such a shame that it’s a post code lottery.

A person from enablement is coming to meet with my mum at the weekend to discuss support. I am going to go up for the appointment incase they try and pull the rug from under them completely.
My mum said to me it’s nice to have the Carers coming in 4 times a day (for company reassurance and help) but she feels as she can do my dads meals and medication their sometimes isn’t a lot for the carer at lunch time and tea time to do so she could maybe manage without those two visits but she really would like to definitely keep hold of the morning carer to put my dad in the shower, to help get him up, to dress him and help him downstairs and the last carer of the day to help get him ready for bed and get him upstairs especially as his balance is often especially off on an evening.
How would we be best negotiating this meeting?
I have no idea how much the two visits a day would cost to keep in place and I can’t seem to find out this information from anywhere or anyone ahead of Saturdays appointment? Also I don’t know whether or not their is maybe any scope to say extend the two weeks to six weeks support with two visits a day rather than the four?

Whether they can extend will depend on how your area does things. They should be able to help with longer term care if it’s needed. If they have less than £23,250 in savings ss can help with funding and he should be allocated a social worker to help sort this out. If they have more than that in saving if they will be classes as self funding, but the reablement team should still be able to advise you on care and how to go about setting it up.

Care will likely cost in the region of £20 per hour, but that’ll vary depending on where you live and the company you use.

It sounds like both your parents are benefiting from the care your dad is receiving. If your dad going to be ss funded make sure you stress the point that your mum cannot manage your dads personal care, if your mum mentions that she could manage at all they may jump on that and rely on her more than she can really cope with. Budgets are tight and if family say they can manage they will often go with that. Of course if he’s self funding he can have what he likes as he’s paying for it.

Good luck.