Hi everyone, this week has been just awful. Last Sunday my mum was taken in with symptoms but sent home at 1am Monday morning. They didn’t think she was having a stroke? It seems the hospitals have ‘ramped’ up ready for the second wave, so trying not to keep people in them unnecessarily. ??♀️But 6 hours later at home fell off her bed, luckily I’d stayed - called 999. Later on Monday after a scan she was diagnosed with a bleed on the brain, no sight in left eye, left arm and leg very little movement. She can still talk and communicates well, but yesterday we chatted for half an hour, today she is not in the same frame of mind at all, I just don't know what to expect. What is the first few weeks like? It's hard to get answers when u can't visit the hospital. Also this is such a problem as she is carer for my dad that has many illness’ and dementia. So I’ve had to stay with him as he needs care 24/7. I have (after a million calls) sorted out for him some respite care , he goes in on hopefully tomorrow, Monday 28/9/20 when his COVID test comes back negative. What a week it’s been ? Mum is doing ok though, she is stable, and each day we get further away from last Monday feels a little more positive. It’s gonna be a tough time ahead but I’m ready to help her any way I can. Any advice appreciated, many thanks.
Hi and welcome. Firstly, can I just say that the hospital's decision to send your Mum home at 1am is digraceful. I fully understand why they don't want people to stay in hospital when admitted because the longer they are in, the more risk there is of catching infections from other patients - covid apart but sending a vulnerable person home at that time..? Makes my blood boil! Did they scan her on admission? They should have if they didn't. Strokes can be what they call 'on-going' which means it starts with something fairly odd - mine was with the slump of an arm which then went numb. But bearing in mind the long waits to be seen, waiting for scans and getting the results mean a stroke can develop rapidly and that does warrant a stay in hospital as your Mum's did the following day. Hospitals need to realise that there are other people in need of urgent care besides Covid admissions.
That's good news and a relief for you is that you managed to get some help for your Dad. Also good news that your Mum is stable and doing OK. Before your Mum leaves hospital, she will already have seen an occupational therapist and possibly a physio too who will show her exercises to do and put in place any help she will need at home for the first few weeks. Be sure to point out that Mum is your Dad's main carer otherwise my experience of Social Services is that they expect daughters to take over where really this is their job, especially if you are working yourself.
She may need some adaptations at home like a hand rail in the bathroom etc. During the first 3 months, the brain does a lot of its 're-wiring' and repairing which means lots of rest are needed because it does take it out of you. Gradually, this will improve along the way but it's very much a case of taking each day, week at a time. There are a few people on here whose relatives, partners have had strokes during Covid and they may be able to give you some support as being unable to visit must be very hard for all.
What a sad bad week for you and your family.
Stroke recovery is slow slow slow. Think in terms of months not days.
And recovery can not be rushed.
No two strokes are the same. Thats part of why you wont get a conclusive answer from the medical staff. But us on this forum we can say whatever we like.
There are three types of stroke. TIAs which are usually brief and recovery total. Then clots which are the majority, I am a clot. Then bleeds like Mum, which are perhaps the worst type.
When I was in hospital, I found visitors were a nightmare. I just wanted to rest. So maybe its not altogether bad that Mum will get very limited visits. Also, the medics can concentrate on the patients. They will be working through the scans and tests.
The first major stage is when the doctors say she is medically fit. That can be in just a few days. Then they will need to get Mum mobile enough to be able to be released. Weeks, maybe months.
I would urge that you do not have Mum home in your own care, until she can manage.
Lots of us are here, pretty much recovered. I took three and a half years to recover.
Maybe Mum will be quicker. No two stroke are the same.
Ask anything on this forum. Someone will answer.
Bless you and your family
Colin
Colin
Hi - I'm very sorry to hear about your Mum...I know as a daughter, what a terrible shock it can be to see this happen to someone you love. And you will be in shock for a while...it takes time to come to terms with something like this, so don't worry if you experience a thousand and one different emotions whilst you process what has happened. It will probably feel very surreal, and at times you may question how you will cope with the situation and the changes it will bring. But as time goes on, you will cope - even though you won't know how...or realise that you are doing it.
Our 81 year old Mum had a stroke back in April, right in the middle of lockdown. We were not allowed to go with her, or visit while she was in hospital. We had daily updates from them and were able to speak with her on a couple of occasions, but it was very hard not to be there to provide the comfort and reassurance that she needed.
I found it helpful to make notes of each phone conversation with nurses, doctors or Mum, so that I could take time afterwards to review the information, and detail any questions I had. We were told many different things within that ten days..that she had mild weakness on the left, dense weakness on the left, that they didn't think they would be able to get her back on her feet...it seemed to change constantly depending on who we spoke with. We tried to gather as much information as we could ourselves, and the Stroke Association Website was a real help, so I'd definitely have a look there as well.
Because of lockdown...and the focus everywhere being on Covid19 - Mum was discharged after just ten days, with no physio or rehab. She was able to just about get round with a frame but could not get upstairs. It was a very scary and frightening time for us all, not knowing how we would cope with this new normal...without any real support. But we got through it, day by day - hour by hour sometimes. Just doing the best we could. Helping her with speech and language therapy, following the exercise sheet the hospital sent home, and providing as much physical and emotional support as she needed. We had carers come in for the first three weeks, and were provided with a frame, commode, perching stool and toilet frame.
Five months on and things have settled down a bit...we are adapting to a new routine and Mum is making good progress. She is finally getting some physio and this is building on the work we have done since she was discharged. She has been able to get upstairs again, and we took her out for a drive for the first time a couple of weeks ago. Neither of which did we think would be possible in the beginning.
I think two key words to remember are time and patience...this will be the start of a new journey for you all, which will feel scary and daunting - so take each day as it comes, just doing the best you can.
Sending best wishes
Karen
Hiya Karen,
You have certainly been through a lot. The Covid situation has made life so hard for everyone.
Im glad everything has settled down into a routine and ur mum has made good progress. It definitely is helping hearing others stories. I know mine won't be the same but it gives me hope and realisation as to what will happen.
Best wishes
Alie
Thanks Colin,
Thats really useful info.
Yes I've certainly gathered that there isn't just one response, one answer, it certainly is and individual situation for everyone. I think the main thing I'm coming to terms with is the time it will take. Hopefully today I will talk to the physios and get an idea of her recovery plan. But it's still early days.
I appreciate ur response as I'm soaking up all the info, like a sponge.
Take care of yourself.
Many thanks
Alie
Hiya,
Thanks for the reply.
Yes it's truly awful that she was sent home, but they just wouldn't listen to me or her that she 'wasn't right' as u, she couldnt use her hand/arm, a registrar cane to see her, but still discharged her. They rang the next evening to say a mistake was made and there will be and inquiry.
She is now off high dependency and has started with physio at this moment. So it's sounding positive, I've just got to get my head around that it's gonna take a long time.
I'm awaiting a call from the home my dad is going into, just waiting on a negative Covid test. I can then start to get my head around then next phase of arrangements and plans.
It's all overwhelming and so much to sort out, but I'm getting there.
Yes I do work so life has to get nearer normal soon, as at the moment I'm here with dad 24/7.
Phew what a week, I appreciate all the advice and knowledge I can get, as I knew nothing about strokes, I know more now.
Kindest regards
Alie
Hi there. My big stroke was a bleed, almost five years ago. The first weeks went by in a surreal way. Had my stroke on holiday in Devon. Taken to Exeter A&E, but can't remember that, then to Derriford in Playmouth. This stage felt like an out of body experience.
Four days later an ambulance took me back to Worcester Royal and from there I went to a rehab ward in Bromsgrove. Spent six weeks there before coming home. In all honesty, the first few weeks were very tiring and it was hard to connect with visitors. Sometimes I just wanted them to go. Couldn't turn over in bed or use my left leg or arm.
Five years on my partner and I have just returned from a short break in Devon. I can cook, bake and do a few household tasks, but am partly disabled. I walk with a stick, but rejoice in the fact I can walk. Long conversations tire me and I need a daily nap at noon to keep going.
I can tell you love your mum very much and will support her. My partner is the same, but I also get doses of 'tough love' to push me into doing things rather than sit and vegetate. Hope all goes well.
I fully understand your anger with the hospital. My brother was misdiagnosed 3 times with cancer during Covid despite 3 scans. At the heart of the pandemic in May, they sent him to another hospital in another city for further tests because they wanted rid of him because of Covid. After 1 scan at the other hospital which he had waited 2 months for, they confirmed cancer which by this time had spread throughout his body and he was given 3 months. He lasted 6 weeks.
I am so glad your Mum is making steady progress. Hang on in there and don't try and take it all on board yourself as you end up ill doing so. Hopefully, the test for your Dad will come through negative and you can rest better once he is being looked after.
I had a stroke on 6 June 2020 where a had a large clot and a bleed and spent several weeks in hospital. My stroke was called Alphasia which affected my speech, writing and all other problems associated with that. I have had stroke therapy for 12 weeks now and looking for further help from the group, if possible.
Dear Hilda
the stroke that got me ln late 2015 was a regulation clot. An ischemic stroke in the right lacuna. One of the issues i had was difficulty with speech, this was described as aphasia.
My speech started to improve after three months. I now have a decent quality of life with hearing and speech not too bad. Writing is not brilliant but thats due to my hand not wanting to go exactly where i want it to go. Wordprocessors replace my fountain pens.
I am aware there are cases much much worse, but i wanted to let you know that many of us recover quite well.
I had to work out that echoes were a massive problem. As soon as i realized the problem, my amazing brain worked on correcting the issue of echoes.
Love your garden.
smiling helps a lot. Being positive helps a lot.
best wishes
Colin
Hi Alie, I have found this forum so helpful - as you say, it helps to hear from others who are going through similar experiences. People are very generous with their guidance and support, so ask any questions you may have, and use it to have a vent when you need to.
Each stroke is different and so each recovery is different...but time will be the main factor. Remembering that it is likely to be a marathon, rather than a sprint.
Hopefully your Mum will be getting the rehab, physio and support she needs right from the outset - which will certainly help her. Any progress she makes - no matter how small or insignificant it may seem - is a hugely positive thing, and gives hope for the future for both her and yourself.
I hope you have been able to sort out the respite care for your Dad, and that he is settled. Don't forget to take the time to allow yourself to come to terms with what's happened as well. It's a big life event and can have an impact physically, emotionally and mentally.
Take Care, Karen
Hi there glad to see you are contacting the stroke forum for advice. I'm so sorry they didn't diagnose your mum's stroke earlier it might have prevented such a bad stroke being detected. It's always hard to be a carer with s someone you love and I guess your mum is s o frustrated with it all. I had right sided stroke 7 months ago at 78 and after being so active before felt so frustrated having to rely on the family, but thank heavens for my lovely family who have helped so much. Have persevered with constant exercise even though I keep s a lying I can't do it I know I can! Things do g e t better and I am now now a walking better albeit with stick after a few yards and driving short trips. At the beginning I thought I never would. You are a good support to your mum, keep persevering, use the physio exercises that they send. I know it's awful with covid as they can't visit but take one day at a time, every day is different. Your Mum will get there, people will say to her "are you better now" need to say not an illness it's a brain injury! I hope your dad settles in respite care. Just feel for you having to cope but know your parents appreciate it. If I can help in anyway let me know. Best wishes and wishes to your mum. She will improve just has to tell her brain to stop messing about.!
Rita