Another day, another post - this is really a labyrinth of a system
So, my mum, 77, is due to be discharged home following a massive stroke 4 months ago, and being rejected from intensive rehab as she can’t tolerate the pace. However, she has weeks of energy and determination when she improves with physio and SALT. Yet, the system is spitting her out with no other options for rehab.
I’ve been putting my journalism skills to good use and doing the research - I’ve discovered there’s such as thing called slow stream rehab which hasn’t been sidscussed with us as an option which is so bad.
I’ve also found out that mum can be referred by the family to a nearby rehab unit when she’s ready.
I’m pretty disgusted at the lack of information and transparency of the stroke ward - they’re just not interested in helping us beyond their own pathways. Why aren’t these pathways easier to find? Why put families through the ringer on top of the existing trauma of large strokes by withholding such information? At least give us the info so we can investigate ourselves.
Anyway, I could rant for days about the way family members are being treated if their loved one can’t get into intensive rehab.
Has anyone been referred to and got into slow stream rehab after improving at home for a few months?
My mum can currently transfer with one person using the sara stedy, sensation recently came back to her weak side, and her weight bearing is improving. The hospital OT says there’s little hope of further improvement so they’ve stopped investing in her progress which makes no sense as we’re seeing mum improve in front of our eyes (feels like we’re being constantly gaslit).
@EMG72
I am around the same age as your mum. Three years since stroke now.
I came home pretty much as your mother.
Since then there has been slow but definite continuous improvement.
I would say that most of the advances are due to my own efforts. My age and lack of ability to produce quick results mean that I have had to struggle on alone.
There has been some help but only in a limited form.
Don’t give up on your mum, you will see her get more mobile and more involved. It is a slow ongoing process.
It makes me so cross when I hear of so called professionals saying there’s no hope of further recovery. It’s wrong! And cruel of them. I believe there’s always potential for recovery. Yes, it takes a long time and progress is slow. But forwards is forwards.
I was told my recovery would take 6 months to a year however as I am to understand personally recovery never stops as long as you are pushing forward. It may slow but never stops. It’s alot like living. We learn new things all the time and we inadvertently teach new things all the time. If life did not progress, if we did not progress then how did we stop being cavemen and women?
I have my hopes and thoughts positive for you EMG72 and your mum.
We know exactly how you feel. It’s a challenge all round. Good that mum has you.
Try and get help from your council e.g. a social worker to come and assess her before she comes home. The physio team should have done that at least. From that she can get carers and physio for at least 6 months, depending on her financial situation.
Ignore the doom merchants and keep going forward.
There’s useful info on this site and by people here.
All best wishes.
I’m 10 months post stroke and 60. Hoping to start back at work part time.
The recovery road is long and bumpy sometimes.
Try and keep positive.
Update…after I raised the option of future rehab referral to a day rehab unit for mum today, the OT offered to refer her! But last Friday in our MDT review meeting, they agreed that this very same place wouldn’t be suitable. WTH? So confusing
To a degree we measure our lives by our successes. When we aim for the stars we do well to realise that there might be disappointment. When we are able to deal with disappointment we could well find a path that leads to success.
Dissatisfaction is what drives us on. There will always be ups and downs, something else to deal with. The future beckons. Living in hope is no bad thing, but enjoying life in the present is not to be missed.
Remember, keep digging and you end up in a hole. Avoid digging holes, you are much better moving free.
All the best.
I am in the US so perhaps things are more different there than I realize, however… Speak with absolutely everyone you can, about the progress your mum has shown so far…make a list and keep updating it, as they may not even be noticing. Ask as many questions as you can. In other words, be a bit of a pain in the tail, albiet politely, so they suspect you won’t give up until they find a suitable answer. I wouldn’t expect miracles, however, many people will go the extra mile to help, and to get proper answers for you. We have no idea what goes on behind the scenes, but often others will pull for your case once they have been made aware, even if it is not their particular job. I know, as I have benefitted from that. I am still in this life because of them, when others were ready to give up.
She definitely should be assessed before coming home, and her home will need to be assessed too as to what her needs will be for access and mobility, grab rails, toiletting, bathing/showering etc etc etc. I had all that even when I had my hip replaced and was supplied with rail around toilets, grab rails to get in/out of the house, 2 types walking frames, one with a tray, perching stool etc. Your mum will need a heck of a lot more when she comes home.
I note there has been much response to your post and I hope this has been helpful to you. If I may, I would just like to say that you may find many obstacles in your way as you work with your Mum on the journey to recovery from her stroke.
I should like to strat by saying based our experience the help you receive varies hugely depending on your personal financial situation and also where you live. We live in London and even in neighbouring London Boroughs, the help available to Stroke survivors is hugely different. So you should not be surprised if this happens to you - your local health care providors and social services etc. will likely have their own budgets and their own views on how they will manage that. It is like “a post code lottery”.
This is now our experience - I myself am a Carer and my mother had a very severe stroke and we experienced pretty much the same as you and possibly worse - my Mum was 89 at the time of the stroke and you can imagine that the feedback from the professionals was “don’t expect to much”. She hardly got any physio and within a week of her (very severe stroke) they had already decided there was not much that could be done for her and had started plans to discharge her.
To cut a long story short, the planned discharges got delayed 3/4 times as she picked up infections and had to be kept in. Despite all this, NO proper assessment of the needs at time had been done and NO improvements were made to the home e.g. ramp for wheel chair, rails etc. The assessment had been made early on and it was deemed she would more or less be bed bound. We (family) did not agree with this view and always said she had scope to improve and kept pushing for help, often getting immediate push backs on the grounds Mum was too old to benefit from the physio etc. etc.
We never gave up and over time with the patchy help we got we managed to help Mum improve. Five years later, she is NOT bed bound though she still needs much help from 2 carers, but she is incredibly healthy for her age and what she has gone through.
We are always having to “fight” for help and having to argue she should not and must not be discriminated on grounds of age. We have to point out her condition and how well she is, all considered.
It’s an uphill struggle but she has kept going and she continues to fight for her existence.
I am sorry of this this is a “ramble” but I just want to try to encourage you and your Mum that it is possible despite barriers you may face.
Be strong and keep going - always ask for referrals or second opinions and NEVER give up.
Thank you - your mum’s story is extraordinary. Then again, I’ve now read or been told of so many stories of older people improving for years after their stroke that I’m wondering if these aren’t the exceptions but are actually fairly common.
I believe it depends on a person’s mindset - some people just don’t want to fight for lots of reasons, or I guess some families don’t have the capacity to fight with and for them.
We have a rather large family but I’m the only child living in the same town - the others are scattered 70-100 miles away. So they need to contribute financially where they are able.
We’re yet to start applying for benefits for my mum and step-dad but we’re hopeful. If they get benefits in addition to state pensions, it would change the game in terms of the support we can get in.
Appreciate you taking the time to respond - I’ve been worried sick about the transition from hospital to home so your post came at a good time.
UPDATE:
My mum’s hospital OT is referring her to an non-residential rehab unit. I did my own research, spoke to clinical leads at local NHS rehab units, and mentioned to the OT that my mum is actually suitable for one of them and I’ve been encouraged to refer her.
Without any hesitation the OT said she’d refer mum! I was utterly baffled as the team had put us through all of the stress of trying to get mum fit enough to get into intensive residential rehab in recent weeks. Anyway, the key thing is that we have hope of ongoing rehab.
The rehab pathways seem to be very defined, but then you come across the odd blurred line. Then the door swings wide open. It’s ridiculous.
