Mum has had a stroke

[HappyGoSadly]

I am posting here for traffic, I'm sorry.

My beautiful, healthy mum had a stroke three and a half months ago.

She is only in her mid-sixties, and had a bleed in her brain following an (unusual) spike in blood pressure.

She is now in a rehab unit but I'm here to ask for pep talks and guidance please from people who have gone through something like this.

She can barely talk, but is trying, she has aphasia and it's mostly nonsense words but the odd word comes out.

Similarly she has lost sensation and use of one arm and leg.

She does physio three times per week but her progress is painfully slow.

Please tell me there's hope.

My grandad had a stroke and recovered well enough to run his small holding single handed for many years. Every case is different but people can make a good recovery.
I also just wanted to give you a hand hold. MIL had a suspected TIA at the weekend and it’s so stressful waiting to see what is going to happen with scans etc.
I hope your DM makes good progress.

That's good to hear - was he very bad? Many of the women on her ward in hospital had had strokes too - but could all still speak!

My mum had a severe stroke last June.

I think the best advice I can give you is, listen to the professionals, work out what best & worse case scenario is, be realistic, accept that it will never go back to how it was.

It’s tough, and unfortunately miracles don’t happen. If there is improvement, most will happen in the first three months.

How is your mum now?

The first three months have passed and she cannot walk or talk.

What will happen to her long term - a care home?

I was only a teen when it happened but I remember he could not speak and had no movement on one side when we first saw him in hospital. I don’t think they expected him to recover, otherwise myself and my brother would not have gone to see him. I remember watching him have physio and initially having to have someone move his leg for him as he could not do it himself.

Is she on a stroke rehab unit OP? Is she seeing occupational therapy and speech and language as well as physio? Have they given you and your family things to do inbetween sessions? How is she transferring currently, full hoist? Have you thought about where you want your mum discharged to, is going home an option?

When she had the stroke she couldn’t swallow, was asleep most of the time, couldn’t move.

She has swallow back now, so can eat and drink. She can talk .. but slurry (you have to get your ear in), she is paralysed in her left arm, can’t sit up unaided, has no balance (which leaves her unable to walk, although she has slight movement in her left leg), her lack of movement means that she has just use continence pads, she is transferred via a sling, and sits in a tilt chair.

Her home was assessed as unsuitable to meet her needs (quite right), so Social Serviced have put her in a care home .. where she gets 24 hour care

No sympathy thanks, she never been a nice person, and is even more horrible now, with the added guilt of care home visits.

Sorry this has happened OP.

As it’s been three months you may need to consider the possibility that she’ll need to be in care for the rest of her life. Maybe with you or in a care home. (I’d choose the care home because I think I wouldn’t cope providing 24/7 care and my children come first.)

How long will she be in a rehab unit for? It’s worth speaking to the doctors and stating whether she will have anyone to care for her or if she’ll need to be released into a care home? They’ll need to know so can plan her release. You may need to speak with the council/social services if there aren’t any finances to pay for it. They should be able to provide further information at the unit.

My auntie had a stroke in 2019 and she’s been bedridden ever since and is being cared for at home. It’s taken a huge toll on the family and caused rifts too.

OP I'm really sorry. It sounds like she's had a hemorrhagic stroke? My brother suffered the same last year but unfortunately his was not survivable.

On a more positive note, I saw a consultant neurologist for an unrelated condition and she mentioned the work she did with younger stroke victims and said that she tends to see improvement for about seven years after the event. You're very early days still so most of that time remains. The body does hugely prioritise the brain and nervous system, but timescales can be very slow.

I wish your mum, and you, all the best.

My dad had a lot of little TIAs and then a stroke which affected his arm and speech. In his mid/late 60s. The amount of help he got was minimal and his speech never really recovered. His mobility took a while but got there slowly.

I could cry in frustration about how little help he got and this was well before COVID. Please push to make sure your mum gets as much help for her speech as you can get. Not having a voice in the NHS is a disaster as people get ignored.

My mum had a haemorrhagic stroke, like yours, at 50. It was completely out of the blue. Medics also said it must have been due to a freak rise in BP but no one really knows why this happened. She was in hospital for 3 months.

That was 8 years ago now. When she first had the stroke she could barely speak, struggled swallowing and was completely paralysed down her right side. She couldn't walk and even had difficulty rolling over. she slept for most of the time and could do nothing independently. Her coordination was gone so she needed help eating etc.

Today, she still has aphasia but it is vastly improved and only really noticeable when she is tired. She still gets very, very fatigued and needs lots of rest. She had to retire, there is no way she can work like she used to, but she did volunteer on a telephone advice service for a while for 8 hours a week. She can now walk with a stick for short distances. She has some movement down her right side but a lot of spasticity, which makes that side painful. She can make herself a cup of tea and some toast, shower and toilet independently but needs help getting dressed. She can’t really do any household tasks so needs a carer (my dad).

Recovery from a stroke is so variable, everybody has individual recovery journeys and so I can only share my experience. It is a long process of recovery and you have to fight for the support, in my experience. We thought my mum might die so we are so relieved to have her. Life has completely changed for her and for us, however, we’ve learnt to adapt. Mum has a full life with friends and family, she goes on holiday, goes out with friend etc etc. there is still joy. She has made peace with adapting to her new normal, but it wasn’t easy to get there.

Advice - once the NHS discharges you it can feel scary, seek support from stroke charities, national and local. They offer great advice in resources and peer support for both you and your mum.

Get occupational health involved to help you fit the house to better enable your mum.

Look out for her mental health, it is a massive and traumatic life change. My mum really struggled once through the immediate crisis.

Think about the future; plan.

Get support yourself. My MH took a hit, it was a sad uncertain time. I was in my 20s but it is so at anytime.

Good luck, things do get better. Take each day as it comes, get support for yourself. PM me if you like.

Sorry to hear this OP.

My husband had a massive stroke in January 2023, followed by another stroke in September last year. He was 58 at the time, is 59 now.

It is absolutely not true that you get to a certain point and recovery stops. There is masses of new research showing that people can continue to improve for months and years afterwards. Contact The Stroke Association - there will be a local 'branch' in your area. They can be very helpful.

Push for as much NHS physio as you can. If there are the funds then also try to engage a private physio.

Your mum should be having input from occupational therapy. She should also be seeing a speech and language specialist. Keep talking to her. My husband wasn't understandable at all at first. He can talk fine now, albeit he does sound 'drunk'.

PM me if you want.

Also, if you are on facebook there are two UK stroke groups - one is called Stroke Recovery UK and in fairness is mostly aimed at the stroke survivors themselves. There is another group however called Families of Stroke Survivors and it is a really useful place and a safe place for carers/families to rant/be upset/frustrated.

Gosh these are sad stories, thank you for sharing.

She is currently transferred with a hoist.

Yes she is seeing an OT and I am keen to have homework to do with her.

We don't know how long they plan to keep her in the unit, it is reviwed every six weeks.

She is cheerful and happy and seems to be happy to be alive and still fighting. She has always been a fighter and a tryer and I can see she is trying her best to get well. She is frustrated that the words won't come out right. Each week brings maybe 3 new words but then it's not as simple as if she'll remember them the next day.

Is she tech-savvy? There are lots of apps that you can get on tablets/phones that can help. Lumosity is one of the best, you do have to pay to unlock some of the games/brain training exercises but it is worth it.

What were her interests? Talking to stroke survivors about their interests can often help with aphasia and dysarthria.

Music can also help. People with brain injuries and speech difficulties often find they can sing far better than they can speak. I think singing is controlled by a different area of the brain.

Ask to sit in with some sessions with salt and OT's, they should be giving you things that you can do inbetween sessions which will help with her recovery, using different sensations on her affected side, moving her affected arm, using a communication aid to help with speech etc. look up the stroke guidelines (2023) regarding recommended therapy time. Not all stories are sad, some people make an excellent recovery. It sounds like your mum is still happy to be alive, that's the main thing.

The speech being affected depends on which part of the brain the stroke occurred.
Elderly DM had a stroke in the Brocas area of her brain (language) and like your DM lost her speech, recognition of alphabet, and was paralysed on her right side and fed via PEG As she couldnt swallow. But she did have expressive aphasia so could nod, shake her head and make faces so we could follow her wishes as long as we asked her Qs which needed a yes or no answer. It took her 6 months to stabilise after her strokes but she never regained her speech. We had regular sessions with physio and SALT and then did the exercises with her twice weekly. The Stroke Association gave helpful advice too - do call them. Is she able to be at home or will she need ongoing nursing care?

DM was feisty and had a great sense of humour despite all her health issues. And although she couldn't speak she loved her music and could sing the tune to all her favourite songs!

Sorry to hear this.
My husband had a frontal lobe heamoragghic stroke a year ago at 61. He lost the use of his left arm and leg and has been left with severe incontinence. This has caused terrible delirum which is hard. He spent 9 months in a stroke rehabilitation hospital before a care plan was given. He's now been back in hospital for 6 weeks due to his delirum and constant infections.
We had a physio who came to the house once a week for 3 months then that ended as there's no more treatment they can give. Unfortunately his hand is also permanently clawed shut.
We have a personal alert alarm as he constantly throws himself off the bed and sofa at every available opportunity.

Me and the carers use a steady to transfer to the toilet , bed etc. He has a hospital bed amongst other aids.
We are waiting for the OT to visit so they can look at putting a ramp in for the front steps. That will take up to 3 years. Similar for a wet room.
In my experience, you have to really make yourself heard and push for what you want.
However, everybody is different and some come back fully, some don't. It's pretty much a waiting game.
I wish you and your Mum well and hope things improve for you. You also need time to yourself as caring is hard work. Its life changing.
Just to add, we are in Scotland so things are slightly different here as care is free.

I’ve had a stroke 15 years ago aged 45 and I made a full recovery.
To be clear I had an aneurysm and the surgery to correct that then caused me to have a stroke - the point being I had no underlying health issues that would have caused me to have a stroke (that’s what I think anyway).

I couldn’t walk. I could talk but I was slurring. I was in rehab for 6 weeks and could walk when I came out.
i went back to work after 1 year and I looked on work as further therapy as it forced me to develop strategies to get organised, plan my workday and I had to speak a lot. I was lucky that I worked for a large public sector business so my job was safe.

I just had to and wanted to get on with it and I was very motivated to get back to ‘normal’.
i was told the recovery would be 2 years but I believe I continued to recover for about 5 years.

I’m left now with a very slight left sided weakness (I can’t ski anymore) but if that’s the worst after effect I’ll take it.

There is hope but I was helped by my age (relatively young at 45). I had no underlying health issues. I’d stopped smoking 18 months previously.
i was told early in the process by my consultant that there was no reason I shouldn’t make a full recovery and that statement by a professional had a HUGE positive effect on me. Because of it I truly never thought that I wouldn’t make a full recovery so always pushed to get back to normal on every front.

I've had two strokes myself one at 24 one at 38 I still suffer from aphasia but recovered well both times It's a long slow frustrating process though Good luck to your Mum sounds like she has the right attitude

As PP mentioned, call the Stroke Association if you haven't already, they were a great help to me when my Dad had a stroke.