Hi there, first time posting on here and after reading some of the threads I’m hoping someone out there might have some advice…
My mum (75yrs) is coming to the end of her third week in hospital after suffering a stroke caused by a bleed on the brain, at the start of November. Because of covid she wasn’t allowed any visitors for the first 2 weeks and only in this past week has my Dad been able to visit her - she can have 2 x 1hr visits a week now.
In all this time we’ve have very limited information from the hospital about her condition, how she’s responding to treatment and what the long term plan for her rehab will be. When we ring the ward it’s a bit pot luck as to whether we get to speak to one of the nurses who is caring for her. The hospital does have a Relatives Line set up where you can get a bit more clinical information but again depending on who is relaying that to you, it doesn’t help all that much as it’s medical jargon.
A few friends/relatives have mentioned that we should be having a family meeting with her doctor at some point. Is that the case? And if so is this something we need to push for or will they ask to arrange that with us in due course?
We know she has a very long road to recovery ahead of her and she may well not make a full recovery at all but it would be good to know if she’s making steps in the right direction and what we might be facing long term. Any advice would be greatly appreciated, thank you.
Hi there, first time posting on here and after reading some of the threads I’m hoping someone out there might have some advice…
Hi Jen, I’m sorry that you are having such a hard time getting information in an already hard time. My hubby had a stroke on Friday, so I’m very new here, but just wanted to send some wishes your way. Take care, Andrea
Hi Jen. My stroke was also caused by a bleed on the brain when I was 72. Fortunately, this was pre Covid and my partner could visit every day and ask questions from the ward sister in charge that day. At the moment, your mum will still be in the early stages of recovery and staff will be seeing that she has the correct medication and physiotherapy. It took me a full month to start to recover.
Six years on and after lots of hard work I have had made a reasonable recovery. I think what I’m saying is that after only three weeks, there will be no clear view of what sort of recovery your mum will have. It is worth asking,however, if you could have a meeting or phone call with one of the medical staff about her progress to date.
Three weeks after my stroke I was still pretty out of it so there might be little to report. I hope your mum, like me, will have the commitment and determination to improve. Recovery is slow and the effort will need to continue after her release from hospital.
Recovery, however, is often slow, so the important thing is to encourage mum all you can. They will, however, not have a clear idea at the moment of what progress your mum has made to indicate future care needs. They will certainly call you to a meeting when a clearer picture emerges. I hope this helps,
Hi Jenny @JenP if you are getting nowhere with contacting the Ward for information try contacting the hospital’s PALS (Patient Advice & Liaison Service) they may be able to assist you.
That said, your mum, as John @John_Jeff_Maynard mentions, is still in the early stages of recovery especially if she is still in hospital, perhaps your father can speak to the staff on the ward when he visits your mum. He could always write the medical jargon down for you to investigate online when he gets back home.
Wishing your mum all the best in her rehabilitation, take care yourself your strength and support will be needed
Sorry to hear of mums stroke.
I am six years post stroke and still recovering.
The hospital staff will not tell you much, because every stroke is different and they dare not give a view that is too positive or too negative.
Six years ago the staff were positive, but I note how negative they are lately.
On discharge they will give her GP an exact diagnosis and mum will have a
Copy of that. Might be some time yet.
John Jeff is wise and worth studying in detail what he has written.
You don’t say whether Mum can talk yet.
A huge step forward is when mum can transfer. Ie out of bed and on to a chair or chair to toilet.
The lack of visiting does have a plus side. I recall how the chatter of visitors was unbearable. My brain was trying to cope with so much. Also, visitors would pester the staff for info and it was better that the staff worked on patients, not visitors.
If you can read the stroke association booklets it would give you an insight.
I know how very difficult this must be for you.
A long path lies ahead.
Hello Jenny (@JenP), is there a stroke consultant at your hospital that has a day clinic? If so, appointments should be able to be made where they can go through the details of your mum’s stroke and show the MRI et cetera. Otherwise, all the hospital information does go to her GP, so that may very well be the next port of call. On a side note, the Stroke Association has just put together a document called “About Your Stroke” which they want to get into every hospital, and make part of the discharge process. This document will need to be filled out by the hospital staff and given to the survivor. I think they’ve just recently submitted it to the health boards, I know it doesn’t help with your mum’s situation but at least people are aware that this is something needed within the health care system.
Sorry to hear about your mum. I’m 7 years post-stroke and agree with what the others have said. My husband found it very difficult to process what was happening when I was in hospital and there was very little helpful input by staff. It is a very confusing time for the patient and family alike. There is a very useful book called ‘Had a Stroke, Now What?’, by Tom Balchin (who is a stroke survivor and now runs a charity called ARNI) which contains tons of useful information which I wish had been in print when I’d had my stroke. Good luck!
Thank you Andrea. It’s all quite scary and overwhelming isn’t it? I hope your husband is doing well. Sending you both warm wishes too xx
Thanks to all who have taken the time to reply, it’s really appreciated.
@John_Jeff_Maynard glad to hear that you’re doing so well 6 years on, that gives me some hope for Mum. She’s quite a strong willed lady and up to now has never needed to spend time in hospital - not since I was born 45yrs ago! So I’m hoping she’ll have the strength to keep at the rehab in the weeks, months, years to come. We just worry that the visiting restrictions means that we can’t be there to encourage her to keep going. But as @Colin has said, too much visiting at this stage would possibly be too much for her to deal with anyway.
I had wondered if it was still too early to be making any rash assumptions about how this might pan out. I totally appreciate that every patient is different and reading some of the experiences in other threads really does highlight that.
@Mahoney one of the doctors my Dad spoke to a couple of days after she was admitted suggested PALS to him as he really wasn’t pleased with how things had been handled. To start with it took nearly 3hrs for the ambulance to arrive despite him stating she’d had a stroke - even mum was able to say that at the time! Then there were other examples of bad/mis-communication which I won’t go into. I’ll look into them.
@Colin I’ve read many of your responses on other threads and found your advice to be very encouraging and supportive so thanks again for responding here. A week after being admitted we had a virtual visit with her and she was speaking, albeit slow and a little slurred at times & she was fully aware of where she was and what had happened. Then they put her on codeine because she was complaining of back pain (been an ongoing problem for a couple of years now) and the next 2 virtual visits were heart breaking, she was just drowsy the whole time and didn’t speak. They’ve since taken her off the codeine & reduced the seizure meds she was on and thankfully Dad went to see her on Saturday and she’s able to speak again. Still slow and takes her a bit of time to get her words out but he spent 2hrs with her and she spoke quite a bit. They’ve also been getting her out of bed and into a chair but as far as I’m aware she hasn’t regained any use of her left side as yet.
@Rups I’m not aware about a day clinic with a stroke consultant but I’ll look into it, thank you.
@MinnieB thank you. I’ve seen that book mentioned a few times on here and I’ve ordered a copy!
Sorry for the long post but I wanted to acknowledge all of your responses. I may well have other questions as our journey continues and I’m hugely grateful I found this forum, it’s such a useful insight. Thank you all, Jenny xx
I am relatively new to this blog thing so apologies if this response turns out not to be what it should be, but here goes …
There may be a dedicated consultant who looks after your Mum and it may be possible to speak with him/her to get the information you require.
When my Mum was in hospital (pre-Covid) there was a team responsible for various elements of care relating to their specialist areas. With Covid it will likely be a lot different.
If your Mum is able to communicate, it would be worth trying to find out from her what she would like to happen. My Mum was not able to communicate and so a lot of care was based on “generic” understanding of what she might be saying.
I would advise you try and get as much help whilst she is in hospital, especially around physiotherapy as this in my opinion is a key element to reecovery. Each case is different and each person will respond in different ways.
We missed out on the physiotherapy because Mum was always sleeping or tired when she was scheduled for the physio. This was a huge shame as, inmy opinion, the lack of timely physio has had a signiifcant impact on her recovery. Matters were not helped when we then went into Covid lock down soon after leaving the hospital and so visits from physios were non-existent.
I think you have had some good responses from others and I hope this might be of help. Our main finding was that it is not unusual for lack of information - someone mentioned earlier, they don’t like to “raise your hopes” and so will always err on side of caution and you really do have to push hard to get useful information. Main thing is you need to keep plugging away.
Wishing your Mum a speedy recovery.
Thank you @JenP , I hope your mum continues to improve
I’ve hit the can’t get information stage, and it is so frustrating.
Take care x
So sorry about your mother and the difficulties you are experiencing. Both my husband and I have had strokes, my husbands was more. Serious than mine but we were able to access information. Once my husband came home the Cornwall stroke Team became involved in his rehabilitation with specialist nurse visiting, speech therapists giving him therapy, in my case the specialist nurse was very supportive and an occupational therapist was involved in assisting me to recover the Use of my left wrist and hand. This iiintense home support lasted for 6 weeks. I don’t know if every county has such a team but I do still call. On them. for advice and support. Your family aand you have suffered a terrific shock and it does take time to adjust. My advice would be to be prepared for the amount of support your parents will need in the future, in our case this meant selling our B and B and moving to a bungalow. Starting a new life with the person my husband had become and allowing myself to grieve for the person I had lost. My daughter has been invaluable in giving me breaks from my husband’s Care needs. Keep in touch with us. Marylin
Hi Jen - I could have written this post myself. My Mum (aged 75) collapsed with a stroke 3.5 weeks ago and is currently in hospital. We also weren’t allowed visitors for first 2.5 weeks but are now allowed to book half-hour slots.
It’s been very frustrating not to be able to see medical staff while I’m there as you would normally expect to when visiting - I get random, sporadic calls from therapy and doctors but have had roughly one from each every 10 days.
My world has been blown apart. My Dad is also being assessed for dementia, so I’m spending my time driving to hospital for any visit I can get (I live an hour away), spending nights at my parents’ to check my Dad is OK, trying to spend time with my family (I have a 6 year old) and working I am utterly exhausted.
I’ve had concerns about my Mum’s care too to be honest- she only gets therapy 3 times a week, which in my opinion (and that of my friend who is a neuro physio), it’s not enough. I’ve raised my concerns with PALS and waiting to hear back… but that’s another story…
Anyway Jen, hope you’re OK and happy to chat if you need support. No one seems to understand what I’m going through and I’m trying to stay “strong” for everyone but inside I feel like I’m collapsing.
Hi Joanne, oh my it does sound like we’re living through pretty much the same thing!
We haven’t spoken to anyone from the therapy team as yet and I haven’t spoken to a doctor in nearly 2 weeks. We keep checking in every day either by ringing the ward or the hospital has this relatives line but the main response tends to be ‘she’s just ongoing for all rehab’. No idea how often therapy is coming, I might check on that one.
So far only Dad has done the in-person visits. He’s had 3 and on the last one on Monday we set up a video call at the same time which was good. She’s doing ok all things considered but we’ve still no idea if she’s making good progress. My Dad was told the other day on the phone that we should be having a family meeting this week or next but heard nothing so far, I’m thinking I’m going to have to push for it now. Mum says she’s really bored so with the lack of visiting I’m worried what all this is having on her mental health as well as physical as she seems quite aware of what’s going on.
I totally understand what you’re going through. I’m utterly exhausted too. I have a 12yr old and a 4yr old and have attempted to go back to work this week (was working from home) but now the 4yr old is sick so I’m back at home! No siblings either to share the load and I’d been worried that my Dad might be showing early signs of dementia too before all this happened so keeping a close eye on him. Luckily they don’t live too far away.
I’m slowly starting to realise that this is it now. My life going forward is going to be all about caring for my parents at the same time as trying raise my own family. And I absolutely will do all I can for my mum and dad. I guess I just always thought it would be a bit further down the line before I would need to as up to this point they’ve been pretty fit & well.
Ditto about being happy to chat xx
I’ll drop you a PM too then
Yes. I’ve come to the same realisation - but equally I can’t be a full-time carer in the end as I live 45 minutes from my parents and the past few weeks have shown how stressful it is to try and stretch myself in so many different directions. On the plus side, I’ve finally lost that extra stone! Work I could do without but being away from my son for days on end is not sustainable. I also thought this would all happen further down the line - and if it was going to happen to anyone I thought it would be my dad (who has had previous TIAs), not to my Mum, who was 100% independent and active. I’m definitely still in shock.
I do at least have a brother who lives more locally to my parents to share the load a bit and he has been popping over to see my Dad during the day too.
I’ll be interested to know when you hear from the hospital. We can book half-hourly visits pretty much any day (if we can get a slot) but my Dad hasn’t been in yet as Mum has wanted to see me (extra pressure on me!) and Dad wouldn’t get there on his own during the week without becoming very stressed as there is totally inadequate parking (I got a ticket yesterday…!) I’ve booked him in to go and see her on Sunday though and I’m going a couple of times before then too.
I did worry about my Mum’s mental health suffering too with the lack of visits - I’ve taken in her phone, iPad (with radio app and headphones), Kindle, audiobooks, books, colouring, drinks, etc - everything I can think of to try and occupy her but I know depression is very common after a stroke anyway and a lot of the time I think she is just too tired to bother with any of it. Plus not being able to move her left arm means that she struggles to use some of it very well.
I did speak to a lovely lady on the Stroke Association helpline yesterday who reassured me when I was in floods of tears. I’m going to put the number in my Mum’s phone too so she can call if she wants to.
Take care of yourself x
Yes please do drop me a PM - not sure how you do that?
I also thought something would happen to Dad first. He’s had a triple heart bypass but that was nearly 20yrs ago so never been too worried about that but he’s always seemed to have more medical interventions than Mum. She’s also been 100% independent and active. She’s the one who cares for everyone else, including her 92yr old aunt, so I just assumed she’d still be the same into her 90s too! All a massive shock and shows you just can’t take anything in life for granted.
I’ve just had someone from the care team on the phone asking for lots of background info about Mum and what she was capable of before the stroke. I asked about physio & they aim to see patients 5 days out of 7, I’m hoping that’s pretty good? She said they usually do the family meeting quite early on so suggested I ring the ward & requested one if we don’t want to wait for them to contact us. That’s the next job for me then.
Take care xx
I’ve looked at messaging but don’t seem to be able to - maybe because we are both new here.
Physio 5 times a week is good - it is what NICE guidelines recommend. At Mum’s hospital they have told me they “aim for 3 times a week” and it’s really not enough. Frustrating that if she was at home I could supplement it with private physio sessions, but I can’t do anything while she is in hospital. And then the doctors tell me how critical the first 3 months are for recovery and I worry we are already nearly a month down.
On the plus side I went to see her today and she seemed brighter than yesterday. I have bought the book someone recommended earlier and also downloaded it to her Kindle app while I was there today so she can read it on her iPad (as she struggles to hold a book open with only one hand). I think the book will be just as useful for me though to understand what she might be going through.
Glad you got some info from the hospital today. x
Hi, this is my first time posting but I just wanted to say firstly, how sorry I am to hear of both of your mums strokes @JenP & @Joanne99 but secondly, share a little of my own experience in the hopes it may be of some help. I suffered a massive stroke at the end of January this year (I’m 43 years old) and as we were still in the midst of another lockdown, it meant I was unable to have any visitors at all (so unable to see my husband and our 4 children). However, the morning after I was admitted the stroke consultant I was under came to see me and then she contacted my husband for an update. In the following days I started to see numerous therapists (physio, speech, occupational etc) all of whom then completed their own assessments of me. I was fortunate enough to be fully aware of what was going on, however, not fully able to process it all. But, within that same week I started to receive therapy every day. It was all very surreal and extremely overwhelming but I was so grateful to have the therapists as they could give me a clearer idea of what was happening and answer any questions I had. At around 4 weeks (from memory) I had a “planning meeting” with the stroke consultant, rehab team/therapists, my assigned nurse and my husband albeit he was on video call. This is where they discussed with both of us what had happened, what my care plan was and what the plan would be for my recovery going forward. We were also able to feedback our thoughts/feelings on everything and ask any questions we had. (For these meetings you can invite any family member and/or friend/carer/support worker you wish to too). I was in hospital for two months in total and had two of these planning meetings. Sorry if this is longwinded but hopefully, knowing the process I went through may help. And I really hope that you and your families will have a meeting soon.
Hi @PocketD welcome to the forum. I’m sorry to hear you’ve suffered a stroke but hope your rehabilitation is going well
Hi @PocketD, thanks for taking the time to post. I’ve asked again twice this week about a family meeting and been told both times that it should have happened by now! Today the Ward Manager emailed the consultant whilst I was on the phone so hopefully we’ll get an appointment soon. I hope your recovery is going well. I’m finding that there’s lots of useful and interesting threads on this forum so I hope it helps you connect with others in a similar situation to yours xx