Advice please newbie to this

Hi, my uncle had a major stroke 3 weeks ago. Very fit and able 80 year old up to that point. He has regained speech and swallow reflex but is paralysed down left side. We thought he was doing well. Hospital is now talking about discharge, he won't get any better etc taking age into account etc. Seems to early for us. We were thinking of months of rehab. He was the main carer for his wife so situation very difficult. Are there such things as rehab centres on NHS where he can go and be given a chance to recover. We are still in shock and very lost. Can anyone out there give some practical advice. Thanks. Ps Corona virus not helping as obviously no visiting allowed. 

Hello and welcome to the Forum,

Most of us here on the forum are carers and survivors, not medical professionals but we can give you the benefit of our knowledge and experiences.

I's almost ten years since I had my stroke at the age of 43 but your uncle should be under the care of a multidisciplinary team (MDT) that should include Occupational Therapy, Physical Therapy and Social services. These will work together on his rehabilitation and home transfer and care arrangements.

The NHS has different types of rehabilitation facilities: some exist on Stroke wards, some are specialist rehabilitation wards and there are some specialist rehabilitation facilities. During my rehabilitation I was fortunate to be supported by all three before I was discharged four months after my stroke. The rehabilitation facility was targeted at younger patients but I had excellent care and rehabilitation in all of them.

This is obviously a very challenging time for your Uncle and family. If you are in the UK, I recommend you get in touch with the Stroke Association and ask to talk with the community team. When I had my stroke, they made more sense of the situation than almost anything else. It is bewildering trying to make sense of everything but work with the professionals, stay calm and bear in mind that there will be multiple professionals trying to find a solution for your Uncle and Aunt.

Take care, all of you,

Damian 

 

 

Agree with Damian, and would also add, that you may have to be fairly assertive to get things done for your uncle.  I thought I was being quite pushy at the time of my husband's stroke, but I realise now, that I just didn't know what to ask for, and how to be persistent and focussed with my requests.  

With the Covid situation it's not going to be easy, and yes the hospital will want to send patients home asap, but this might not be best for the patient.  Even a fit 80 year old will need a good balance of rest and rehab, he will need a team around him to plan a suitable programme.  He will not be able to care for anyone else!  He needs to be focussed on his own recovery - that will take all his energy reserves and must be protected.  

You will get good advice from this site, follow Damian's suggestions.

Very best of luck and good wishes to your uncle xx  ?

Thanks Damian. We will know more tomorrow. Family call with the experts. What you say is kind of what I expected but they seem to have made up their minds after just 3 weeks that my uncle will be bedridden for the rest of his life. If they were telling us this 4-6 months down the road I might find it easier to accept. 
I have never done a blog before. Find it all a bit scary. 
Will let you know if we make progress tomorrow. I am a firm believer in hope. If you take that away from someone then what do they have left. 
 

Hope you have recovered well and thank you for your advice. 

Thank you. Is your husband ok now? I will do my best to fight our corner. Shouldn't feel like a battle. Bad things happen, it is how we deal with them and the support we get that makes the difference. Thanks for answering. Ann 

Hi Ann. I'm afraid health authorities vary in their support. I had my stroke four years ago on holiday. I spent two weeks in hospital in Plymouth then was brought back to Worcestershire, where I live, and had a month on a rehab ward. During this period I had a lot of physio. I was taken on a home visit before being discharged to establish what aids I needed to cope with being at home. I then had six weeks physio at home and then another 9 months of weekly physio at my old rehab hospital.

I would  talk to his medical team about what his support package will be. If that fails, speak to his gp. The Stroke Association helpline will also support you. Please ring them as well. Four years on, I have improved a lot from being paralysed on my left side. A lot will depend on his determination and family support. I wish him well.

Hello again, 

The early prognoses and recommendations are hard to come to terms with when you are all dealing with the enormity of it all.

I was told I might never walk again, my left hand would be useless for life and that I would have to spend the rest of my life in a nursing home.

It seems understandable now since I was completely bed-bound at the time but none of those predictions were true.

I hear what you are saying about this possibly being too early but the professionals have to weigh up their experience and need to keep people safe. Many people have a good life after having a Stroke but unfortunately some do not bounce back. If your Uncle is made of the right stuff, he may be able to have a great recovery but you must all weigh up together what is best for both him and your Aunt.

I will close by saying that early predictions can be very wrong but you and  the professionals must balance what you all want with keeping two people safe and well: it's a fine balancing act. I was desperate to recover but I could have undone everything by falling and breaking my neck. I truly hated my wheelchair but it was a necessary evil for six months.

Take care all of you and know that you're doing the right thing: with good support your Uncle can have many happy years ahead of him.

Damian

 

 

 

 

 

 

Damian, thank you so much. Just what I wanted to hear. We have been told my uncle will never walk again and face bed baths and commodes for the rest of his life. Choice now is can he come home and the house gets a major change around or go into a nursing home. My aunt has more or less had a breakdown and can not cope with either decision. I am realistic and know maybe the professionals are right in their prognosis but my uncle like you is made of sterner stuff and will try his best to be as good as he can. Thanks for sharing your journey. Ann