Advice - recovery from Anoxic brain injury/stroke has gone backwards since going to nursing home

[AAG3]

Any ideas - I'm at a loss as to what to do. My mother had a contained aneurism in August which resulted and anoxic brain injury and minor stroke. She was discharged into a nursing home last week. Prior to leaving hospital she had managed to maintain daytime continence, walk 10m or so with a frame with 2 staff, sit unsupported, come across as coherent apart from the odd far out comment. We chose a care home with physio and OT in the hope that she would maintain the mobility she had gained as minimum. Since going into the home she has gone backwards, seeming very confused, falling out of her chair (something she hadn't done for 5 or so weeks), using the call bell every 5 minutes, they wont entertain the idea of her using a frame (which I suspect gave her hope - they say she's not strong enough) and put her back into a tilting chair rather than a normal chair which she moved into a few weeks ago. She is anxious, bored but unable to focus, has said she feels she is going backwards, and is more confused. The hospital warned that some homes would prefer she stays as immobile as possible. The hospital said it was time to move on as it would offer a better routine and more stimulation but this doesn't seem to be the case. I know it's early days and it's a big change from hospital where she was for 3 months, but I need to think about what next as a back up plan. I'm seriously wondering whether we have mad a mistake if the home wont help her maintain what she's gained, although the person they see is far different to the one that left hospital. Is it too much to expect any home to do that much? Wonder if there would be benefit to moving her to a cheaper home (in her town) and paying for a physio or ? to go in 3 times a week where she would get 1 or 2 friends visiting regularly. She's capable of good conversation and her sense of humour is returning and it's hard finding somewhere where there are residents able to converse. I'm guessing she's unlikely to improve significantly now, but the hospital wrote off any further recovery 3 weeks ago, then changed their mind, then wrote her off again - consultant said peaks and troughs. So feel whilst she is keen to try it's worth persevering, even if it just gives her focus and hope. Just don't know if we're expecting too much from home or how long we give it (it's at the pricer end but we thought it might be worth it for another month or 2 if the repetition of walking process etc was maintained for strength and mental wellbeing). Anyone got any thoughts, advice? TIA

[AndrewT]

Dear AAG3,

This IS a ,Very Difficult, 'Post' to answer- however I shall try, my best.

Firstly, since you know your Mum best, you, Might well see' Things' Differently, to the Care Home. Let me explain...You see, your mum, Apparently 'Unattended, by the Staff. They may, Very Well, see an Old lady, who seems 'Unresponsive' to their Efforts. Add, to that, that she could have both Wet, and Soiled, herself three times that day....Do you see what I'm Getting at? Don't get me wrong...I'M NOT making excuses, for them- or any neglect- I'm just trying, to offer some Alternative explanations. I, used to Holiday- just outside Nottingham, at a place, that did/ could offer Personal Care. I had arranged, to meet, a friend there- a girl that I had know for some years. One Morning, about half way through the holiday, Sophie said to me "The Staff seem a bit 'Off' this morning". I happened, to know, that not one but TWO People had had Major Accidents- in bed- that night. Do you see what I'm 'Getting at'.

Can I also offer, an Alternative explanation, to the Apparent Lack of Physio? It could, ridiculously enough, be simply 'Arranging it'.....Now please DON'T Bite My Head Off! When I was first in Hospital, over 22 years ago now, a meeting had to be Convened- to arrange MY 'Care Package'. I was to have 24 hour care, but only for a few weeks, so, all the 'Agencies' concerned with my care, had to Officially 'Meet'. All was arranged, a Time set, and....Then the 'Local' Social Workers DIDN'T show up!🙄

So you see, with ALL the 'Best Will' in the World- and I'm being 'Generous' here- Sometimes 'Things' CAN just Go wrong. I think, that you, need to Talk To, the Care Home....'Talk to' them please Don't- despite the temptation- 'Shout at' the Care Staff. You, just might, find out 'information' that you didn't know.

I KNOW that 'Things' can, be/ appear, Frustrating and Yes, there COULD be a 'Problem' with the actual 'Home' but don't just Assume that. It could well be, that your Mum has 'Regressed' a little- since leaving the Hospital. It CAN happen, particularly with Older People.

I hope, that this, makes- at least some- sense to you AAG3. If I were you I would...One Speak to the home, as I suggested already. Two... Actually Ask YOUR MUM, what she Thinks and Three....Give this situation Time, no really. (Unless, of course, you suspect, any actual Abuse- which you DEFINITELY Haven't indicated anywhere.)

Can I Finally send you My, indeed All our, Heartfelt Love. Please Do contact us again- if you need to- AAG3. If you want a more 'Personal' Chat, then please PM me. (Click On, my profile, then Click 'Compose'- or 'Write.')

Our Thoughts are, with you

AndrewT

[AAG3 in reply to AndrewT]

thank you - really helpful - I'm trying to look at it from both sides to see whether I'm expecting too much or not. I've tried talking to the home but they keep fobbing me off - I'm going to take a walking frame in so it's there and my mum will ask to practice, although I doubt they will entertain the idea. She has definitely regressed physically and mentally, which is upsetting for both of us when the rehab ward put in so much time and she's very aware of going backwards. She doesn't like the place because she doesn't think it's worth the money or the staff, particularly she doesn't like one of the nurses because of the way she speaks to her. No abuse, just little things like the way one nurse talks to her (well no one gets on with everyone) and she tells me she's not been washed after having an accident which they did in hospital (which is probably just slackness). Some of the issues with staff I guess relate to missing the familiarity of the staff she got to know well in hospital and there's lots of agency and regular staff so not as easy, and they don't seem to introduce themselves. There's rarely residents to talk to/able to respond so less stimulating than hospital. If we give up on the mobility - they have got her a new chair which she cannot 'escape' from, and seem unwilling to help to maintain mobility then maybe there are other options. Just not sure how long to give it before we give up.

[AndrewT in reply to AAG3]

Dear AAG3,

I'm glad, that you, appreciated my thoughts. You say that you 'Spoke To' the Home but they 'Fobbed You Off'. Whilst that, very clearly, ISN'T the attitude that you want...Can I ask exactly 'Who', in the Home you spoke to? Was it someone 'In Charge', IE a Senior Staff Member, or the Nurses 'On Duty'? Even if you have 'Spoken' to the Senior Management, maybe- bite the Bullet, Swallow Your Pride and ask for a Formal Meeting. Ask for Social Services, any Social Workers who are involved in your Mum's Care to be present too...Along with your Mother- this they may not want, but Insist.

Once they are ALL present ask your questions, to the Management, then listen to any- and all- answers they give. By all means let, your Mum, ask questions too. That way You, your Mum, Social Services and Mum's Social Worker ALL hear the same information. The Home may well, not guaranteed though, offer some 'alternative' explanation(s) for some, of their, behaviour. Don't, be afraid, to Push Issues If need be....You Employ Them, not the other way around. If you, or your Mother, are NOT Satisfied with the Answers you are being given....Say So, there and then- in Front Of the Social Worker(s). Hopefully 'All', will end, amicably with ALL Issues/ Mis- understandings resolved.

One slight such 'Issue' occurred when my Grandfather- my Mother's Father- had to be found a 'Home'. After a few weeks, my Mum, went to visit- ALL his Biscuits, cakes etc. had been eaten. "Have you been Hungry Dad" ask my Mother "Yes" he replied "They don't give me enough Food". My Mum had a 'Word'...."Oh, we had no idea" the Staff informed her and then, with a big smile, replied "he should simply have 'Said', the silly man". On her next visit, my Grandfather, informed her that the food was 'Glorious'. So it CAN be just, a lack, of Communication/ Understanding.

If, after all this, you are Still not satisfied then you Can ask the Care Quality Commission , to Intervene....but, I think that I'd just 'Find' an Alternative Home, at that stage. Personally and, I know that I'm Sticking My Neck Out here, I'm sure ALL this CAN be Sorted Out, in a Friendly way. A little 'Give and Take', coupled with a mutual 'Desire' to Resolve 'Things'.

Love, to you all, as Always

AndrewT

[Jduv]

My sister had a stroke 4 years ago. Far worse outcome than your mum She was only 55 at the time , and they gave dreadful prognosis initially

We have her at home with a care package of 2 carers , 4 times a day

She has total right sided weakness , so can only transfer with a hoist , and her speech is affected , though she can talk and make herself understood , she struggles to find the words she wants sometimes, particularly under stress

No residential setting is suitable for your mum ( it my sister ) if you want continuity of care and them to be be familiar and safe with those caring for them

My sister has a suprapubic catheter, and we have achieved bowel continence ( with very rare accidents ) by making sure she sits on commode at each carers visit

She uses an electric wheelchair , goes to daycentre 3 days a week, which she enjoys

She has been in hospital 10 days now with sepsis from a UTI ( she also has renal transplant) and nursing care she had received has been appalling; not giving her fortisips( she’s not eating at the moment, though usually does) not getting her out of bed to use commode , not supply airflow mattress that she has at home etc etc

They seem quite happy to shove a bedpan under her or for her to soil, rather than use the hoist to keep to some sort of routine that she had at home

I suppose what I’m saying is residential care is never going to be like what can be provided at home , that us more under your control , and in surroundings that your mum is familiar with. Changes really affect those with brain injury, make them confused etc. In our experience that’s not permanent , settles when she is settled and feels safe again

If it’s at all possible think about her being at home with care, alarm system , district nurses etc etc

Request Neuro rehab team do intense 10 weeks at home

If home not an option I would choose a small and friendly Care home , with fewer staff that get to know her well

You can bring in the physio and other therapy she needs

The whole care system is broken. I feel so sad and angry for those who don’t have family to fight for them

[1949liz]

Dear AAG3 Without a shadow of doubt I would move your mum, she needs motivation, care, love, positivity. NOT just sitting vegetating and that will happen if you leave her where she is so please for your mums sake and for your own mentality MOVE her. Don’t be fobbed of by the nurses being too busy, or for them not using her frame. She must have two nurses or physio by her side while she walks every day three times four a day. It so important for her to walk and move otherwise she will get bedsores and then septics. I used to be a nurse, now retired I had a TBI and other things so stop 🛑 and think how you would want to be cared for. I do often I would NOT put up with the things your poor dear mum is coping with. It’s finally up to you God Bless Liz x🙏🌹

[Hayl0]

Dear AAG3,

My father seemed to be going backwards (he is severely brain damaged after being run over)

He became unresponsive, unnaturally fatigued to the point he didnt have the energy to give a thumbs up. I called a meeting with all his docs/therapists and explained my concerns and examples of how dramatically he has declined. I think they were giving him the wrong meds dosage. He has since begun to improve more like he was before.

I dont allow what the hospital "wants" be put before my dads "needs"

There is something called DOLS -depravation of liberty safeguards. This is an agency who come and assess whether the person is being given enough freedom and not being restrained. The tilt chair sounds like a restraint so she cant move. If she is well enough for a frame she should not be restrained. I would be concerned if a home didnt encourage physio/rehab. Sounds like they just want an easy life.

They dont love ur mum, u do. U should speak with DOLS they are an NHS agenc

I would move her as liz says!

[AAG3]

thank you - they say she is not strong enough for a frame, yet hospital managed practising it daily for the 3 weeks before she left and predicted she could get down to one person plus frame. So it's more the practising she needs rather than letting her get on with it. The chair is to minimise her falling - she hadn't slipped out of the chair for at least 5 weeks in the hospital, yet 6 times within the first few days of being in this home. Combination of her anxiety and confusion levels massively increasing and absence of staff. So it's for her safety and their legal protection! I suspect I will have a battle on getting them to help her with the frame - if I'd known she wouldn't be moved to the home with one I'd have got one sooner. Every home I asked was fairly elusive about how they could help her maintain things. Will pester them again and see how things go next week and make a decision.