I am caring for my Dad, 86, who had a very large stroke in Feb’ 23. He is now paralysed and unable to communicate.
I wonder if anyone has experience and can advise me.
So far, I’ve been unable to get the care and support needed for Dad since his discharge 2 months ago. This has resulted in three readmissions to hospital.
It seems to me, they have written him off. The last discharge was to a nursing home who simply left him in bed staring at the ceiling apart from pad changes and kept forgetting to thicken his drinks or sit him up to drink them. He wasn’t seen by anyone other than carers and first saw the GP two weeks after arrival. They wouldn’t even give him paracetamol claiming they weren’t allowed until seen by the doctor. Due to lack of repositioning he has now got grade three pressure sores.
After the first discharge he came home with care from 2 carers 4 x day, but these carers do not have the ability or patience to look after or meet his health care needs.
I did try to work with them but they don’t want to listen to me. After each call, Dad was stressed out and exhausted from crying in pain and begging them to stop pulling him about. They had very little English and were very hard to understand. They were rough when handling him and reminded me of someone cleaning a car.
There is no desire on their part to try and involve him in his care or encourage him. All they seem to want to do is finish as quickly as possible…
It’s so distressing to see “professionals” unable or unwilling to provide the sort of care that my Dad so deserves and needs.
So I’m finishing this whilst waiting, yet again, in A and E after calling an ambulance to the nursing home as Dad is very ill. Suspected aspiration Pneumonia. I just hope he survives this one.
@Chispa1 welcome to the forum. Really sorry to hear of the difficulties you’re having. I hope your dad gets the care he needs right now & that he starts improving very soon.
I think i would complain about the carers. It doesn’t sound acceptable to me. I know it is difficult to get good carers sometimes but that’s no excuse. I’d also do the same about the home.
Whilst he is back in hospital it is a good opportunity to try and get the things he needs put in place properly. Refuse to let them send him out until things are in place.
Have you tried adult social services? Maybe try PALs at the hospital and see if they can help. They generally deal with hospital issues but sounds like some of the issues stem from there.
Really hope your dad is on the mend very soon.
Hi firstly welcome to this forum, so sorry to hear that your dad is suffering in this way. Such a worrying time for you and your family. I would definitely start by complaining to whoever supplies the carers, such appalling treatment is definitely not acceptable. I would also speak to the manager at the care home.
I would also contact Adult social care and they might be able to advise you on his care going forward. I hope you get some help and guidance soon and hope your Dad will soon be on the mend.
Thanks for replying. I have already been through the process of complaining to the care agency, social services, the care home, district nurses, GP, county council safeguarding and more but I don’t get anything done. I’m told that’s the maximum help available unless he has money. I’ve researched the Care Act 2014 and asked social services to comply with their duty of care but get fobbed off. They tell me there is no more money in the pot. I’ve begged for a CHC checklist to be completed but I’m told “He will never get it”. The carers are sourced from an hour away as apparently there aren’t any close by. They tell me I cannot have what they haven’t got and the only option is to pay. We would do that but haven’t the funds.
This is so difficult have you got social services involved and all the charities for your own sanity I don’t know what to say I know so many people whose parents have been failed because they can’t cope in the nhs and all sectors look at council charities and help speak to the locaI gp I wish you every success
Thank you for your reply. Yes I’ve done those things and spoken to t he e GP who cannot help further.
@Chispa1 the emoji should be a care one not a like but the system doesn’t seem to give alternatives. I can empathise with you as I was in a similar situation 3 years ago when my husband was left severely paralysed, catheterised and peg fed after his stroke. I also had lockdown to contend with. Unfortunately stroke patients do not seem to have the support that cancer patients do as there are no.specialist stroke nursing homes whereas there are hospices. Care at home is limited to twice a day unless you can supplement it privately. Even if we could have paid for it getting a team of 24/7 carers would have been impossible and the house would have needed renovation. We had to go down the nursing home route and it is very expensive. He was constantly in and out of hospital, blue lighted with asphyxiation pneumonia. He needed 24/7 care. CHC (Continuing Health Care) funding is extremely difficult to get but not impossible. I too had the “don’t apply he’ll never get it” answers given time after time. It is a lengthy and complex matrix / set of questions that you go through in an assessment. I had to speak for my Husband as he couldn’t talk and it was the most gruelling 2 1/2 hour phone assessment (due to COVID they couldn’t visit Jim in the nursing home) that I’ve ever been through. You have to prove eligibility and the system is designed to fail you at every turn. I researched it so much before the assessment and even got the nursing home on board but still failed it. It seems it’s designed so they award it to so few people. Sorry if I’m wrong but that’s my (and others) perception. I complained to the CCG about the assessment (so much went wrong on the phone call from their side) and was granted an appeal for a follow up assessment. Sadly he died before the date for this could be arranged. It had been rescheduled twice due to him being re-admitted to hospital with asphyxia. I got a call from the nursing home a few days after he died saying the assessment decision had been overturned and awarded to him post death. I feel if he’d had it sooner I could have paid to get additional support by way of therapists and not left him for 3 months lying on his back staring at a ceiling he didn’t recognise. The assessment process is exhausting and belittling but persevere with it and appeal if you don’t get through the first time. The system does need to change to help those facing life changing strokes. My thoughts and prayers go with you. I also wish I’d known about this forum before he died. I may have had people on here that could help guide me rather than feel isolated. You too need support through this. Kind regards Marie.