My father had a hemorrhagic stroke on 14th February of this year. He is still paralysed on his left side and unable to stand. He spent around five weeks in hospital and has since been in a stroke rehab centre. We don’t feel he has made as much progress as he should have done in the centre. He has missed several PT and OT sessions, and has rarely been dressed even when we have arrived at 2pm. We have found this so upsetting as it feels as though he is being overlooked, especially as everyone else we saw had been dressed.
He is due to be discharged in a few weeks and we are unsure of the next steps. We had hoped he would return home but the physios say he will not be able to be left inbetween carer visits and the equipment to help him stand is not available. I understand that those who are discharged should also be drinking water to keep sufficiently hydrated, without too much encouragement, and be able to swallow safely.
My main question is this: do you know of any stroke patients who have returned home and bought/hired/borrowed equipment to help them stand? If so, how have they done it?
My other question is: have you/any stroke patients you know of gone on to develop dementia? I understand that this can happen and we are worried that he is showing signs. However, it is very difficult to tell the difference between the damage caused by the stroke and the symptoms of dementia.
It has been an extremely tough time, as I am sure you can all understand. We have so many unanswered questions and feel so lost. Any advice or pointers would be hugely appreciated, thank you!
Hi Susie. I think it all depends on different hospitals. I had a brain bleed over 2 years ago. When i left hospital after 5 weeks the hospital occupational therapist met my husband at oir home to assess the equipment I would need and arranged for it to be put in place. This consisted of handrails in the shower a rail to help me up from the loo a wheelchair 2 perching stools a Sarahsteady which I stood on so that my husband could wheel me around the house and I also had rails put up in the garden to help me down steps to the lawn. The Community Physios came for around 8 moths to help get me mobile. After that it was up to us to pay for physio which we have done and is still in progress. Im afraid its a very long and slow process to get mobile after a stroke. Good luck and keep in touch
Hello Susie @Susie2 and welcome to this community where we hope you will get the help and support you seek to help you and your father on the journey to recover from his stroke.
You are looking to have or your father has expressed a desire to be cared for at home but as things are there is a possibility this might not happen due to the home not being equipped to support the care needs of your father.
There is no one cap fits all answer to this, but I note that Jean @Apple has given a very good summary of how they dealt with this scenario. You/your father may be able to do something similar and the starting point would be to discuss this with the care team looking after your father right now and the team who is preparing him for discharge from the hospital.
You already have seen how the team works and how they respond to you/your fathers needs and from that you might be able to guess the sort of support you might get as you move towards the the discharge.
At this point, I should like to refer to your concerns about his current situation and how he is being cared for/supported in the rehab unit.
Have you discussed this or raised any concerns about this with anyone in the hospital, for example the ward sister or the consultant looking after your father?
Specifically have you asked anyone or raised the concerns about:
Lack of progress
Missed PT/OT sessions
Why he is not dressed even at 2pm in the afternoon?
If you find it upsetting to see your father like this, you and he are entitled to know why he [appears] not to be getting the same level of care and attention as other patients appear to be getting. There may well be good reasons why this is happening, but unless you ask you will not know and nothing will be done. I know for example, some patients may be able to help themselves or they may have relatives or fiends coming in to help them. All patients will have different levels of dependencies.
Also, how well is your father able to communicate with the staff? For example, can he call the nurse and ask for any help that he might need?
Next, I would like to look at the discharge preparation. Who is involved in this and how are the care needs being assessed and documented?
Have you/your father been asked about where father should be cared for? If you have been asked and you have said home is where you want to be then home has to be assessed for suitability and any adaptations that might be needed should be identified - Jean mentioned handrails, perching stools and Sarasteady, but that was for her. Your father will have his own support needs.
Being cared for at home might not be straightforward. Importantly, there is the safety element. If your father needs support who will provide that?
I don’t know enough about your father’s care needs and so cannot comment further, but if the PT/OT are suggesting your father cannot be discharged to the home, you have to find out why and what would need to be done to facilitate a home charge and then it may come down to costs and who will pay for it i.e. is it affordable?
His dietary needs - can he feed himself, keep himself hydrated, take any medication that may be needed etc.
Your other question about dementia.
I can’t comment too much on this because again I don’t know enough about your father, but dementia comes on with age, lack of mental stimulus and certainly having a stroke will not help. That said, there are things that can be done to try and help combat this, but whilst the brain is recovering from stroke it may be difficult to know what’s what. I will leave this for others on this forum to comment on as they will know much more than I do.
Yes, it has been tough and there is a way to go, but if you remain focused, be ready to ask questions and get answers, stand your ground where you need to etc. things should become easier with time. Time is the biggest factor here and there is no set time that can be flagged as a signpost or milestone of achievement. People recover at different rates and take months or years and depending on the complexities, could carry on recovering for the rest of their lives. But that said, there is no reason why they cannot improve the quality of their lives and stroke should not necessarily hold them back.
You are right, there are questions and there are answers too.
Wishing you and your father all the best.
If I was in your position, I would speak with discharge team and say Father wishes to be cared for at home, what do we need to do?
They will then tell you what needs to be done and if it can’t you can ask them why it cannot be done.
So that you know and in case it helps, this is how we kind of did it …
My mother had a stroke that destroyed two thirds or more of her brain. She spent just under four months in hospital.
First month she lay in bed on a IV drip (no food or water by mouth). She survived on the drip and only after the family asked why she was not being fed (what do we know?) was she then given her feed supplements by an NLG tube. This was in use for about a month but she did not get fed everyday as the NLG has to be “safely” in place before feed can be given and several times a week it wasn’t and this led to delays on the feed as she had to go for an x-ray etc.
Once the feed started and she started to get stronger, OT/PT would do cursory visits but with Mum being weak, tired and on medications on most occasions being woken up and expected to respond to questions etc. wasn’t going to work.
Based in initial assessments, OT/PT/SaLT etc. all gave Mum little to no chance of any meaningful recovery and so they didn’t do any exercises etc. because Mum was not able to respond at this moment in time.
All the time, they were preparing to discharge Mum and were telling us she would need double up care (2 people) to support her due to heavy immobility and next to no communications and we should look for a care home. We had a look and there was none that met our (Mum’s care needs). Besides, we had already known in the event of Mum needing care be it in her old age or through illness, this would be at home. So we pushed for a home discharge and we got push backs saying it will be too hard and not the best place for Mum etc. We stood our ground and the hospital relented.
However, they did not go out of their way to make it a “good” discharge and “tricked” us into taking Mum home before all the things she would need being in place. So they gave her a bed, a riser recliner chair, a trolley and hoist and sling and slide sheets to transfer and move her. The care plan came with double up carers (two carers, four times a day).
But, this was only possible because we the family were going to give 24/7 care and the outside care was to support us to look after Mum. Without the family being here, there was no way the hospital would have allowed Mum to cared for at home.
Also, as noted earlier they didn’t have much expectations of recovery and so they did the minimum. As a result, Mum did “suffer” a little as she was effectively stuck in her room which was not ideal.
We chipped away and kept asking for more support, equipment, assessments. referrals etc. and with time she got her room redecorated and made more comfortable, she got a wheel chair etc.
It all started over six years ago and whilst she was a “bed bound” patient and not expected to be here (sorry to say that, but that is how it was), she through her own determination and will power has kept going and she continues to amaze anyone and everyone who cares to take an interest.
She has had very little support in real times but she has made incredible improvements (relatively speaking) and today she spends the day sitting out in the chair and takes visitors when she can and keeps us and herself amused and always she keeps us on our toes as she is incredibly demanding
In the end, there are know certainties, but you can take us as an example of what might be possible.
@Susie2 hi & welcome to the community. Sorry to hear of your fathers stroke.
As others have suggested you need to start by asking for an assessment of his care needs ,& whether it would actually be safe for him to be discharged home. It may be that he would be better off moving to a different care facility in the short term until he improves more. An occupational therapist or adult social services is a good starting point for an assessment.
It is probably too early to say if your father is showing signs of dementia. There is plenty of time for improvement yet.
You could try ringing the Stroke Association helpline 0303 3033 100 too as they will be able to advise on places you can reach out to to help as if will be different depending on where he lives.
Above all, if you feel a home discharge is the wrong thing for him right now then you must say so & stand your ground. The position may change in a few weeks/ months so anything you put in place now need only be temporary.
Welcome to the community, I’m sorry to hear about your fathers stroke. It’s extremely difficult for the whole family when these things happen. I hope you’ll find the help and support you need in this community.
I would agree with @Mrs5K about calling our stroke support helpline. They have such a wealth of knowledge and will be able to let you know what should and shouldn’t be happening and also to signpost to other services which may be helpful for you.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
