Help for Dad

[Loopy9]

Hi I wonder if someone could give me some advice. DD 75, has parkinsons (15 yrs) incontinence (awaiting assessment) is wetting the bed everyday and can’t do his laundry every day as he is frail and too tired. My sister goes round every other day and shops, does laundry, Drs appt, admin, cooks etc. We’ve bought every gadget to help his life, special cups, walking aids, assisted chair, bed etc. I call every morning and dinner (I live 250 miles away) time to ensure he’s taken his tablets.
We have asked SS to do an Adult care assessment (still waiting 2 wks later) as we are tired and we feel he needs more care that we can’t give him (we both work full time & have 3 kids each!). Sometimes he has missed lunch or dinner or missed the meds and paramedics have been to help him. I think he needs a care home but my sister thinks assisted living, how do you know which type of help he will get? Before the adult care assessment should we stop the visits and calls so SS see how he is really coping? He will be wrecked if we do as he needs those meds. He has a house which can be sold. I don’t really know the next steps, so if anyone can share any advice or what they went through that would be really helpful. Thanks

I would expect that social services will be keen to facilitate him staying at home as long as possible as care homes are so expensive but a lot will depend on (a) what he wants, assuming he still has capacity (the days of being 'put into a home' against your will are long gone, thankfully) and/or what you and your sister as his family want and (b) his financial situation and whether he will be paying for his own care or whether it will be LA funded. If he's paying himself that gives you a lot more flexibility as theoretically even if the social workers don't think he needs a home, he can go anyway so long as that's what he wants and the care home are prepared to have him (and it's rare for them to turn down someone because they need a lower level of care than they can provide ). But obviously the local authority won't pay for residential care if they assess him as being able to stay at home...

The options really are (a) for him to stay at home with regular visits from carers and also help from family (b) move to sheltered accommodation again with help from carers and family or (c) a care home. As I say SS will be in favour of (a) or (b) usually. Do you think if he had 3 or 4 visits a day from carers (so about 1-2 hours of support daily, plus whatever you and sister can do) he'd cope? If he can afford it you could also supplement this with extra carer visits paid for him, and/or things like a regular cleaner, meal service, laundry service etc? It seems a bit mad for your sister to be spending hours doing shopping and cooking meals for him, as a minimum I'd get him onto regular food deliveries with (healthy) ready meals to cut down on that a bit - obviously he'll still need help putting shopping away and reheating meals but turns it into a quick job at least, if she shops, cleans and cooks for him daily it must be taking her at least an hour a day, that's a lot?

I think either way you and your sister need to get onto the same page and be very, very clear with SS exactly how much support you are able to offer and importantly what you can't do. SS are cash-strapped and will tend to pressurize family into 'filling in the gaps'. So particularly if you think he needs residential care, but even if you want to give home-living with carers a go you need to have firm boundaries - potentially with your Dad too, elderly people often have an expectation particularly with daughters that family will drop everything and do all the caring and are reluctant to accept/pay for outside help, sometimes this is framed as 'protecting your inheritance' or sometimes it's guilt trips about 'strangers' in the house but the last thing you want is you saying to SS that he needs XYZ help and your Dad saying 'it's fine, my daughters will do it'!

Good luck!

Meant to say I wouldn't stop reminding him about his meds just so SS can see him at his worst, as personally I wouldn't want your dad potentially suffering/falling as a result, but I would be really clear about his needs (as I say, your Dad potentially may be inclined to minimise), how much you have been doing and how much you are able to do in future. Make sure you and/or your sister are part of the asessment so you get a chance to explain it all to them, be robust if you need to...

Please dont stop the visits if you can still make them and his meds, he will be in a terrible state if ne cannot have his medication. Could you call his doctor or the parkinsons nurse to explain the situation and see if they can arrange for a carer or nurse to give him his medication or at least review it . If his mobility is very poor and he cannot get to the door does he have a keysafe they could use.

@maxelly thank you so much, great advice

Thanks @FleasInMyKnees don’t worry we know key meds are. I’ll email the Parkinsons nurse as she doesn’t seem to do anything but maybe the info she’s had has been minimised.. although she does get the Dr reports

Please don't do anything which may make him forget his meds as if parkinson's patients miss them it's horrible for them.

Call Parkinsons UK helpline for advice.

www.parkinsons.org.uk/information-and-support/helpline-and-local-advisers

Under no circumstances stop his PD meds!

SS do need to do a care needs assessment, this will include a financial assessment and should include recommendations for next steps e.g. finding carers to come in.

Does he qualify for Attendance Allowance and consequently Carer's Allowance?

Meds are key! See above, hence we call twice a day to ensure they’re taken!!!

@LIZS thanks I’ll check this out as I’m not sure

Remember a need that is met is still a need, and this is accepted in SS assessment. So you don’t need to stop anything to prove it’s necessary. You do need to remember every little thing you do for him, and every adaptation he’s made for himself, all the aids you’ve bought him, and make sure all the underlying needs are documented