Grandma had a stroke... what next?

[Spod]

I'm after some advice... my dh's grandma (86) had a stroke yesterday and we're not sure what's going on in terms of likely treatment and care. At the moment we are waiting for her to have a CT scan at some point (they dont seem to be in a hurry to get this done...why not?) in order to assess damage. In the meantime she is nil by mouth until they decide whether she can swallow (they do some test for this also...why hasnt this been done 36hrs after admission?). She is awake but unable to speak, she is 95% deaf too so communicating is impossible. at first she couldnt move her right side, but this is improving. its very frustrating because nothing seems to be happening... is this just what happens after someone has a stroke? also, we cant see how she can go back to live alone in her own home (she received care in the home before) so what happens? care home? can care homes provide high level of care? anyone with knowledge or experience of this?
tia.

hi clairabelle... grandma only has me and dh, so its just us dealing with the hospital. dh met with the consultant yesterday and she has promised to chase things for us. no physio has even been mentioned and they arent really discussing stroke unit at all. basically she is just being left in a bed. when we 'have words', minor actions are taken but thats about it.... yesterday we were told that the scanning dept. receives a schedule 2 days ahead and she was not on it yet.... that will be 6 days without a sip of water.... this cant be right... she is much more alret and trying to speak, moving her limbs a little and is eagerly reading messages that we write down for her.... i turned her hearing aid up for her and she could hear me. she definately recognises us. we just feel so fobbed off. when we mention things to nursing staff, i.e about her extreme deafness, or the fact that she recently broke her arm and it is still painful, they couldnt look less concerned, they dont write it in her notes and dont pass informaion on to other staff... we end up telling staff again and againa and again. in my mind grandma is showing really positive signs of improvement and now is te time to get on with rehab so that she can have some quality of life.... if she has to spend the rest of her days like this it will be torture for her. we have said to staff that we know her chances are being hindered by a lack of attention now, and they just keep fobbing us off. in the end she will be discharged into a nursing home simply because they havent given her any chance to rehabilitate ..... if she was 56 and not 86 this wouldnt be happening.

Hi Spod. It's good to hear that your dh's gran is improving so much, but sad that you don't feel the nursing staff are doing enough to assist her. All I can suggest is to keep on plugging away and being a nuisance! If the consultant is on the case that should help things considerably. Does your dh's gran already have a social worker - could you try speaking to the hospital social work staff otherwise?

Spod my 85 year old stepfather had a similar sounding stroke recently. We have found it deeply frustrating as well, though I think he had a scan pretty quickly on the assessment unit and was moved to the stroke unit.

They woudn't do the swallow test on him for ages, basically until he was pretty with it and could really understand what was going on an co-operate.

I would suggest that you request a meeting with the Consultant and whoever is in charge of his nursing care. Write down a list of your concerns when you go in and demand a plan of action. Just because your gran is 86 does not mean that she should suffer a loss of dignity and a lesser standard of care than a younger person - unfortunately it is rather a question of he who shouts loudest etc. in the NHS IME.

Re the care - she will at some point be moved to a nursing home with full time medical care, unless she is too sick in which case she will remain in hospital (unlikely). If she lives on her own and owns a house they will make her sell it and put the proceeds towards her care after all her savings are used up. If she has no savings and no care, the state will provide the nursing home place. This is another issue to bring up at the meeting - what are her chances of going home and having full time home care, if not which homes should you be looking at, as you need to get her name down on waiting lists for the good ones.

HTH and I hope she is soon treated with a little more respect.

Spod, I'm sorry to hear your grandma still isn't getting optimal care. That's tantamount to neglect, imo. I agree, you do have to shout the loudest to get anything done. As your gran is obviously improving, it surely must be worth while getting her into the Stroke Unit, she could make a lot of progress there.

Latest on mil is that she's scheduled for a scan today. Her notes say she's to be discharged today but the Ward Sister says that's unlikely to happen, thank goodness. MIL has either a Social Worker or an Occupational Therapist so I hope that will help the situation.

we spoke to her social worker and he says that he has already had a referral from the ward saying that grandma needs nursing home care.... which since she hasnt had tests/scans/therapy yet reads to us as 'lets get her out of here, shes old and we've limited resources'. he says that he is going to request that she is kept on a care for the elderly ward (where she has been on a previous stay in hospital) so that attempts at rehab are made. but still no-one is offering stroke unit. In terms of care, she did have three daily visits a day, and apprently thats about all there is on offer, so she will need to be in some kind of care home. As for paying for it?... well she has some savings but not much... after that, well, she co-owns her home, so do you know if she can be made to sell if she doesnt own it outright? we are assumning that she will be placed by social services as she is likely to need considerable care which i doubt is offered by old folks homes? i don't know?

The standard of care you are describing for your gran is not acceptable. Full stop. I think as I said earlier you should make an appointment to see the ward sister as soon as possible. I am a senior nursing sister myself and was thinking about this at work last night, I would be devastated to think that relatives were so upset about the level of care being given and that patients were not receiving appropriate treatment or care. She should be having physio input as I said yesterday for her own benefit and from the point of veiw of long term care she will need an assessment of her needs, mobility etc. I do think it is very early to be thinking about a Nursing Home, as with rehab she could well improve to an extent where she may be able to go home with an intensive care package or a residential home. I certainly feel you need to discuss this with someone senior. If you don't get any joy with the sister/ward manager then I would write formally to the complaints manager then it will ahve to be investigated. Have they mentioned a makaton board for communication at all? please don't worry about the swallow test too much she will be receiving rehydration through a drip but again as I said if they feel she is not'with it'enough to preform this test there must be some consideration given to naso gastric feeding. sorry to rant on about this I just feel so strongly about care of the elderly and I feel ashamed to hear your comments. HTH

sorry suedonim...i didnt get to finish my post properly as dd woke up. i hope thhings are improving from you mil and that her scans etc are being done today. clairabelle... thanks for your suggestions. we are now seeing some action, probably because we have started stamping our feet and asking for names of ward managers, complaints managers etc.,.. grandma was given a swallow test, but just failed, they will do another. she hasnt had a scan but they are now telling us that she will be moved onto the stroke unit any time now.... i hope they mean that. the standard of care soes seem to have improved, although there isnt that much they can do for her yet as she is still nil by mouth etc. she is more alert though, but still unable to speak proper words so communication isnt easy. they have provided a communication board so hopefully that may help in a few days. her social worker is back in a week, we've dealt with him before and he is very good. thanks for your support.

I'm so glad your gran is receiving improved care, Spod, that's really good news. I hope she is moved to the Stroke unit asap. She sounds like a fighter and deseves a fair chance.

We've had good news, in that mil is much improved in herself. She had the scan yesterday but no result yet, plus they want to do a Doppler scan of her leg (she has cellulitis in it) so we think they'll keep her in until next week. That'll give my sil a chance to clean out mil's house and restore some order to it!

great news suedonim, and i know what you mean about restoring order to old folks' houses, been doing that for years. grandma is now on the stroke unit and had a scan today, may get some result 2nite.... but she isnt really improving in terms of her speech... and its difficult to tell if she is 'with us' ifkwim.

You must be delighted your gran is in the unit now, Spod. Maybe the more intensive treatment they offer there will help her speech come back and make her a bit more responsive to you. I really hope you see some progress from now on.

I think my mil will need to be in hospital for about a year if we were to restore her house to complete order again. It has to be seen to be believed - I swear the rooms are all 4ft smaller all round than when they moved in, with all the clutter - there are pathways through the house, lol. When BIL took his fiancee to meet his parents, about 15yrs ago, Grace picked up a newspaper to read and it had a headline about JFK being assassinated!!!!

It happened to my Grandma a few years ago. She was in hospital for a few weeks, then was moved to a Stroke Unit of another hospital and then went to live in a rest home. She made great improvements at the stroke unit and was probably about the same age as your DH's Grandma (can't remember exactly)
Don't know if that helps - will be thinking about you and your family, spod.

there is a stroke unit at the hospitl, but we were worried that they wouldnt bother sending her there.... we're weary of nhs attitude to the elderly i'm afraid

Don't know what to say spod good luck with it all

thanks.

I don't really know what to say apart from maybe ask for physio and speech theraphy. I think there are care homes that will take stroke patients, but fight to get her sent to stroke unit at hospital. Write to everyone in hospital from Chief Manager downwards, and talk about her by name so that they see her as a person and not a number. Tell them how independant she was beforehand. Explain if you can to her that she must try her hardest so that she will pass the assessment to get transferred to unit, I know it will be hard given her hearing.

Good luck to you all,

She needs to get into the stroke rehab unit; patients who get into these units do so much better than those who don't. Sounds really basic, but if she's nil by mouth, she is on a drip, isn't she? Dehydration can be a real problem in anybody, but particularly in elderly patients. You'd think it was really obvious but you can never be too careful...
HTH

what sort of assessments do they do for the stroke unit katie37?
eddm, she is on a drip thanks, like you say basic it may be, but we check everything anyway!

Spod - I have been in a similar position to you, but unfortunately am not able to provide a positive resolution, but more some pointers for you. I think that there is a real shortage of resources for CT scans and suspect that is why they do not appear to be hurrying to get things done; also the fact that your dh's grandmother became ill at the weekend may not have helped, as not all the scanners/departments may be running at the weekend.

My grandmother had a stroke a few years ago and died shortly afterwards (about a week later)without regaining consciousness. She had the more unusual sort of stroke, a brain haemorraghe type of stroke, rather than a stroke caused by a clot. In view of her general poor health prior to stroke (bad chest/heart) she was not a suitable candidate for neurosurgery to treat the bleed. A stroke caused by a clot IIRC has a better prognosis, and drugs can be given to break down the clots. My mum and I had to push very strongly for a CT scan for my grandmother.

I would agree with the advice to push to get her into a stroke unit if at all possible. I think the best thing would be for you/dh/family to arrange to have a meeting with one of the doctors looking after your dh's grandmother to discuss prognosis/future care etc. I think you also need to make her pre-existing deafness/communication difficulties clear to the nursing staff, and how she would typically communicate before the stroke. Could your dh's grandmother write on a pad of paper/read a magazine atm?

In terms of care homes - I am not an expert at this but there are two types of residential homes - an ordinary residential home, and a nursing home which would be specifically registered as a nursing home, and so would have to have a higher level of staff than an ordinary residential home and would be geared up to providing more intensive nursing support to elderly people requiring a high level of care. I do not know the ins and outs of funding and finding places in such a home but there may well be difficulties ahead that other mnetters could give some better advice on.

Hopefully things will start moving a lot faster with your dh's grandma tomorrow, once the weekend is over, and all the departments at the hospital will be fully functioning.

Best of luck to your dh's grandma

Spod, I just want to say I totally sympathise with you and your dh's grandma. We heard this evening that dh's mother is in hospital, having spent all night on the bedroom floor after a series of mini-strokes. It's horrible to have to deal with the problems thrown up by these illnesses - thinking of you and wishing your gran 'get well soon' wishes.

suedonim.... i'm so sorry for you and your family... its awful isnt it. we seem to be constantly visiting people (mainly grandma) in hospotal. its so draining. hope things improve for you.
At the moment grandma can't speak... is this likely to return?

Spod I'm so sorry this has happened. You do need to get her onto a stroke unit, and unfortunately you are probably going to have to fight very hard to get this, or any standard of decent care. As you say, NHS care for the elderly is far from brilliant. Just keep hassling the staff. You should also get a referal to a social worker, who can be a lifesaver if they are a good one (if she was getting care in the home she may already have one). They can help sort out care homes/supprt for when she comes out of hospital.

My Nan had a stroke 7 years ago - we really thought that was it, but she has made a remarkable recovery. She can walk again, and talk, and just has a small sag on th right hand side of her face. Do be prepared for a bit of personality change as well though - my Nan's sroke apparently knocked out teh bit of her brain that controls inhibitions, so no she has NONE -she propositions every male who comes near in some faily graphic language!

my dh phoned the hospital this morning and talked to some donkey... he asked what treatment had been decided and when her scan was likely to be.... they muttered something about limited resources etc.... and that she couldnt be moved into stroke unit till its confirmed shes had a stroke (well get on with it then, and what the hell else would it be). then said donkey said thhat they cant do a swallow test yet as shes a bit non-responsive and isnt communicating... she is totally deaf and now cant speak... but, my dh has been writing things to her which she is reading. she told nurses that she wrote to grandma that she fainted and is a bit poorly as we dont want to frighten her by telling her its a stroke... nurse said 'well now she'll be wondering why shes in her just for fainting'! apparently g'ma is trying to get out of bed so thay have put the bars up.... so what more responses to they want her to exhibit before they start doing some tests/treatment?????? we're so angry! sorry, needed a rant

blimey suedonim... you'll be there ages sorting her house out then!! grnadma recently moved house and there were similar items there! why do they keep it all!!

Spod, really sorry that this has happened. My nan had a stroke and was in hospital for nearly 4 months before eventually passing away. Hardest few months for our family. After surviving the first night in casualty (didn't think she would) she was moved to a specialist unit where she was treated with so much respect and care. She had to have part of the clot removed and was very poorly for a good few weeks in intensive care. She did start to make a good recovery and was given physio. However she was then moved back to the local hospital and the care was not as dedicated. Quite often she was left alone and my family spent all the time that we could with her to try to assist in her progress. Eventually the hospital decided that she would need to leave and the hardest decision in the world was to move her to a nursing home (she never wanted to go to one). On her day of arrival at the home, she had a bad fit and was rushed straight back to hospital and sadly each day she went down hill. The strain was enormous but at least we had the chance to say goodbye. Sorry that this isn't a positive story but I would reiterate, get your dh's nan to a specialist unit and try to keep her there as long as possible. However, it can be a long slog of visits that can wear you down at times but just keep pushing for the best treatment. Wish you loads of luck and hope she makes a good recovery.

Hi Spod
I haven't posted for a few months but was browsing today and saw your post. I work in the NHS and just wanted to try and answer a couple of your frustrations. They won't do a scan immediately as different types of strokes take different lengths of time to show up on scan. If it's done too early it can be pointless. Also if your gran's conscious level is not safe to do a swallow assessment they won't do one as this could lead to further complications. Hope this helps, if you've got any other queries let me know.HTH