Stroke questions

Hi, apologies in advance for the long post.

My SIL had a stroke in August this year, she was found in her home in a confused state, no one knew how long before she was found she’d had the stroke. She was taken to hospital by ambulance and was on a stroke ward from 17th August to 28th September. It was difficult to find out her situation exactly but we did manage to find one doctor who said that she’d had a major stroke which had affected 2/3rds of one side of her brain. She is paralysed down her left side, doubly incontinent and she has short term memory loss.
She was moved to a care home without reference to either of the three of her remaining relatives ( her husband, our brother, died in 2021 and they have no children. ) Her own brother and his wife are in their 90’s and were not taking any of the situation well. That leaves myself, my sister and her niece trying to deal with things. None of us has had much experience with care homes.
She has been assessed for CHC, and has been awarded £199 nursing contribution. Due to the memory loss, we can’t tell if the answers to our questions are right or not, but the home do not appear to try to get her out of bed, and we have been told that physio didn’t work because she “wasn’t there”. She calls out during the night, but she is catheterised and has disposable bed sheets for the faecal incontinence.
We have just arranged for an LPA for financial and health, but it will not be effective until registration takes place some time in the new year.
How much information are we allowed to find out before we get the LPA’s registered? Is there the possibility that the paralysis and memory loss will improve of its own accord without physio?

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@Perdusys so sorry to hear about your SIL. I believe until the LPA is registered decisions will probably be made by her Advocate/social worker and they’ll probably not involve you, try contacting Ciizens Advice or if you used a solicitor to register the LPA he/she may be able to answer what, if any, info they will share with you until it’s registered or Age Concern here may be able to answer your questions.

As to your question about improvements, it’s difficult to say, which is not helpful I know, the brain is remarkable, when you visit, talk to her, ask the nursing staff if you can do anything that will stimulate her, every little helps.

It’s a heartbreaking position to be in.

Your all in my thoughts, take care

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@Perdusys welcome to our forum and I’m so sorry this has happened to your sister in law.

I agree with everything @Mahoney has said I cannot say any more to try and support you.

It’s dreadful the situation you are in. I wish you lots of luck and best wishes and hopefully some recovery for your sister in law.

Best regards thinking of you loraine

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@Perdusys welcome but sorry to hear about your sister in law. A very difficult situation to be in. I would hope the care home would talk to a nominated person if the next of kin isn’t about or not able to dedl with.

In relation to any financial & other things you will probably have to wait for the LPA. A friend of mine is having a massive battle with this for her mum & dad at the minute & even though she is their only relative none of the companies will talk to her until the LPA is in place. I understand why they won’t but it is very unhelpful.

With regards to recovery just try stimulating her the best you can when you’re there. Are you able to get her put of bed when you visit? You could try some simple physio with her & see how it goes. Check first what might be suitable.

Wishing you all all the best.

Ann x

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I’m so sorry to hear about the traumatic situation you’re all in @Perdusys. I’m sure you’ve thought of this, but did your SIL draw up a ‘Living Will’, stating how she wants to be cared for in situations like this? It’s odd she was just moved straight to a Care Home. Just my opinion … but maybe gently massage your SIL’s hands or just hold them…human touch is so important. Also talk with her as much as possible, read to her, try and look (gently!) into her eyes. Play her favourite music if you know it, bring Family photos in? I agree … definitely contact The CAB, also of course the Stroke Association Helpline, Age UK, Carers UK. It’s great that you’re doing the LPA, good on you for doing that. Really wishing you well, and I’d be interested to hear how the LPA went. Sending lots of positive thoughts :sparkles:Anne​:sparkles:

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Thanks for the responses, we do know that we can’t do anything financial until the LPA’s are registered. Fortunately, SIL is able to sign cheques so we can at least function until then. It’s more the not knowing the prognosis, or what we should expect from the care home that is difficult. The staff are very nice, but they don’t seem to be willing to get her out of bed, mostly because she finds the hoist uncomfortable and cannot sit safely in a chair.
She is reasonably happy, but nothing seems to be happening to improve her physical symptoms and we don’t know if we should be doing more. She thinks she can get out of bed and walk, but she is paralysed down her left side with no use of her left arm or leg, so obviously not!!!

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And obviously, the short term memory loss is very difficult as she doesn’t remember things from one day to the next. She will “remember” when prompted, but I think it’s more that she’s agreeing without remembering

Hi @Perdusys …. Have you contacted the PALS Dept at your hospital? Perhaps your SIL hasn’t been discharged properly ie correct support put in place, has she a Social Worker who can assess her needs? Stress that it’s urgent or you’ll be waiting for ever. If your SIL can use her hands, maybe buy some puzzles, sensory ‘toys’, plasticine to strengthen the muscles in her hands … maybe the chair could be replaced to a riser recliner? Then she could adjust the position to suit herself, if dual motor electric. Is there an alternative to the hoist? I’m not an expert by the way … just sharing some thoughts. I just feel that once you’re in a care home, sometimes you’re just left to it … even though parts of your body can still function. Maybe try and get an occupational therapy assessment from your local council … you might be able to get a free adjustable bed.

Sending positive thoughts to you :sparkles::sparkling_heart::sparkles:

Ps @Perdusys has your SIL had a physio plan put in place by her consultant. Did she ever see a Neurologist, or Neurophysiologist? I feel it’s important to get a definite prognosis, and diagnosis … enabling you to put a plan in place. These things, as far as I’m aware you can do before an LPA re Health and Care … again just suggestions.

Best wishes, Anne :sparkles::sparkles:


@ZX1 good luck today best wishes Loraine

Hi Welcome to this forum. So sorry to hear of the situation you find yourselves in.

Just a word regarding LPA. I had to sort that for my mum a few years ago and didn’t realise at the time that there are 2 types of LPA, one for Finance and Property and one for Health. We only had Finance and Property and consequently I had no say in her treatment and care, despite being her next of kin. Therefore I would strongly advise that you apply for both.

Fortunately it worked out well for us, Mum was in a lovely care home who worked with us right up to her passing in August but things could have been very difficult.

Regards Sue

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Hi @Loshy …. Doh :upside_down_face: … my appointment is NEXT Thursday :face_with_spiral_eyes: it was Rheumatology this week…got all brain foggy :dotted_line_face: but thankyou for the good luck wishes x

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@Perdusys i wonder if your SIL is in the right sort of care home? Should it be more of a rehab place? In my experience care homes just don’t have the time to give the individual attention that your SIL probably needs. This often results in patients being left in bed etc.
We used to use a turn around table (not sure thats the right name) to get my dad out of bed. Much less painful than a hoist. Not sure if its a suitable option for your SIL though.

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We have applied for both types of LPA on the solicitors advice. She didn’t have a living will We just don’t know what happened at the hospital except that she was moved after about a month into a different sort of ward that focussed more on rehab, and I know she was getting speech therapy though speech seemed fine to us. There was no consultation on the home she was moved to, the hospital phoned her brother and told him where she had been put.
Since being sent to the home we don’t seem to be having too much information from medical sources, the home has a GP who visits regularly but we don’t get told anything.
As far as we know she needs nursing care so rehab may not be the right place? She cannot move her left side at all, is doubly incontinent and is only allowed soft/ mushed up food due to swallowing issues. She also has memory loss.

If she has a social worker, we haven’t been contacted. She owns her own house so is self funding. A prognosis and diagnosis would help, we need to plan but we don’t really know what we are dealing with.

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It is a very difficult situation to be in. Could you find out when the GP is likely to be visiting her & then get someone to be there at the same time? You could then ask them your questions & hopefully get some answers.
Just throwing a thought out there. Don’t know if it’s possible or not.

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Hi @Perdusys … ring your local Council and ask for Adult Social Care. Ask for an ‘Assessment of your SIL’s needs’ urgently. They can also clarify if a Social Worker is in place yet or not. :sparkling_heart: Anne

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Agree Anne they should be able to help @Perdusys regarding her SILs social worker situation as the hospital should have appointed her one and then handed that side of it over to the local authority on discharge. This has brought back so many bad memories from 2 years ago. I can’t believe hospitals are still doing this. She should have had a Best Interests meeting to decide her way forward. Solicitors may be able to push the LPAs and depending on your SILs needs the Health Authority may pay for all healthcare if she applies and is awarded Continuing Health Care. It’s a soul destroying process I will admit as it’s not guaranteed and the CCGs play the criteria in their favour. If she’s struggling with swallowing the home need to ensure she doesn’t aspirate. If she can hear you and you say she can sign her name the GP and the home may have a disclosure form she can sign for you to be given information as a “carer” for her in the interim. It’s not easy. Thinking of you all at this difficult time - Marie

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@Perdusys does the home have a special tilt chair with extra support that she could safely sit in? I don’t know the correct name for it but her occupational therapist may be able to recommend the right one. Unfortunately in this day and age if they don’t have one you will likely have to purchase one yourselves. If you are able to visit her take moisturisers for her hands, arms and legs. It’s a good way to do some massage and exercise her limbs at the same time. If she sees a physiotherapist they should be able to give the home and you some exercise sheets that you can do with her. Just trying to remember what I tried 2 years ago but as that was during lockdown and the pandemic I had a hole raft of different issues. Marie

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Hi @Maz, you’re right … it does seem like the Hospital possibly didn’t discharge @Perdusys SIL properly. It’s happened to me and the next deluxe (not) holiday I had in Hospital I knew what to fight for if not provided … and not telling any close relatives? Very odd. I really hope @Perdusys you can resolve this, even before the LPA. When you ring the Council I’d suggest you tell them it’s extremely urgent and you need the duty Social Worker to go and visit your SIL immediately, when you’re there, as potentially your SIL has been ‘put at risk’ by not receiving relevant care. I’m not a lawyer/professional…just my own experience and ideas.

Wishing you well :sparkling_heart: Anne​:sparkles:

Thanks for all your help and advice, I will find out who to contact in adult social services. I’m sure that when the CHC assessment was done at the home ( without anyone apart from the home staff present, because we weren’t notified un the day and we were unable to attend. Maybe in hindsight we should have asked for it to be rescheduled but we have no experience for this), we were told that social services would be in touch after the decision. I’m assuming the refusal of funding is correct, there were no severe issues, 4 B’s and 7 C’s.
We already have to provide incontinence pads for her bed, and E45 cream for skin integrity, but she also has her own moisturisers and creams.
I’m not sure that social workers will be able to give details of the prognosis, and from all I’ve heard, each person reacts differently to a stroke. She wants to go home, but living on her own and the necessity for there to be 2 carers due to the incontinence and paralysis makes that impossible. We just have no idea what to expect, we’d eventually have to sell her house to pay her care fees, knowing if there is any chance of mobility issues changing would help with decisions when we are able to act financially. If you ask her, she’s been able to get up and walk!!!
Thanks for all the helpful advice

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