experiences of progress in rehab

[pozza40]

So my husband has arrived at a specialist rehab unit yesterday, I was allowed an hour with him today and the unit seems very nice,he has a nice room overlooking the gardens and it is very peaceful there compared to the hospital ward he has been in previously.

He is 5 months post aneurysm surgery that caused a stroke and he has had 2 craniotomies and a shunt fitted after developing hydrocephalus. He has gotten very thin in the arms and legs,has no feeling or movement in his left side and can only tolerate 1/2 hour in a chair.

Does anyone have any experience of starting rehab this long after the brain injury or give me any idea what to expect, i know we probably have a long road ahead of us but the not knowing what is ahead of us is torturing me.

thanks for your time and i hope everyone is keeping as well as they can in these scary times x

[New_beginning]

Have you seen his care plan, when speech and language, physiotherapist seeing to your husband like a timetable. His physical appearance will improve. You can take homemade food in, his favourite, but with covid they may not handle or warm up (thats if speech and language says he has good swallowing mind).

Keep talking about the past, put photos of your family in room with info on back to help carers have discussion. However my husband would get heightened behaviour when i mentioned the children, (didnt acknowledge our 2yr old for 4 weeks, but pick her up 6wk home ).

Dont let these 5mths think hes not going to progress. My husband is mobile, but with fatigue his whole left side goes, i dont panick as much now, its become our norm.

Rehab takes 2yrs until they actually know what will be permanent, where only just starting to see things develop my end, still on weekly visits from hospital, neuro surgeon next month.

Stay positive, i know how hard that can be though. X

[Charlie90]

Hello I spent 6 months in inpatient rehab and actually enjoyed my time there after the hell initially of the stroke, me rehab worked as follows it was ran by a rehab consultant who went on ward rounds once weekly and I was given a time table of therapies such as physio, occupational therapy, speech& language therapy & psychology, depending on what my deficits where following the stroke the whole experience focused on me to regaining some level of Independence, also as time went on they used to encourage me to go on home leave at weekends I was discharged in March due to covid, and I am still in outpatient rehab at the moment(with a long way to go still) it is not a short process, but it is worth it.

I would fully encourage him to attend every session he is offered including groups as this is where he will meet others who have experienced similar and thst I feel Is one of the most important parts

Sending my love to you both and I wish him all the best with his recovery you are more than welcome to ask me any other questions if you want to

Take care

[GlamondoDC in reply to Charlie90]

Hello Charlie90 👋🏾👋🏾

Your rehab experience sounds very positive. Which one did you attend?

[Charlie90 in reply to GlamondoDC]

First the Walton centre then a small Rehab in a local hospital in Merseyside I thoroughly enjoyed my rehab so I am very lucky

[GlamondoDC in reply to Charlie90]

Wow! Such positivity.

My mum had a crappy old time. and regressed and declined in so many ways.

It was in part due to COVID and lockdown, which struck 4 weeks into her treatment.

Awful times for everyone.

[Charlie90 in reply to GlamondoDC]

Yes I got discharged early due to covid or thrown out as I say!!(but looking back best thing that happened to me as I had no choice but to cope and functionally improved massively Your mum sounds like she has not had the most positive experience is she having our patient rehab now?!

[GlamondoDC in reply to Charlie90]

We thought she was going to Neuro Rehab but it turned out to just be a Stroke Rehab unit. She was there for six weeks and discharged from rehab with 'no ongoing need for additional therapy' and, reluctantly, referred to Headway. It took months for Headway to make contact and physically visit to assess her. In that time, we had to pay for private Physio, three times a week.

I fought to have mum referred to community Speech and Language therapy, because she has receptive and expressive aphasia. I had to chase up a few times, but again, it's just been a phone call and some leaflets sent to us in the post.

The only rehab mum received in those six weeks at MU was sedating her because they couldn't handle her 'behaviour'. She really was just left to deteriorate. We could hear her cognition and mental health declining rapidly on the phone but it was blamed on encephalitis. MU promised to transfer her to a specialist neuro rehab unit, but instead, she was referred as an outpatient and discharged.

Mum had gone from hospital to rehab and I now believe she was over-medicated (in hospital) with anti-seizure medication as she began to develop severe psychiatric episodes on her last day in hospital.

Even now, her GP puts every change down to encephalitis and refuse to investigate further.

I believe mum is being discriminated against due to her age. It's a complete shambles.

We had the Neuro Psych phone consult last week (4 months after leaving rehab) and it was very positive! The doctor was very thorough. He said: "Tell me about mum's life. I want to understand her. Where was she born? How did she come to be where she is now?". He plans to review all her medication, refer her to a neurologist, perform more scans and tests etc.

We're all looking forward to the next chapter.

[Lynd]

My Husband was lucky and got into rehab early on and was in for four months. Looking back he was still very confused on discharge as to where he was and would not accept that his beloved family members had passed away a long time ago so its hard to say what real benefit the rehab was apart from keeping him in a safe place and his general medical condition well cared for.

Two years later he is doing OK and some of his best improvements have been only recently.

I really have worked hard with him to make these improvements but you will not know really how long things will take,each person is different.

Stay hopeful and get as much support as you can.

Headway have very useful reading material and I would advise taking advantage of it.

Good luck to you both.