**when I first came out of the rehabilitation hospital I was told this would happen, that would happen, all I got was a few visits to give me a 35 booklet of arm and hand exercises and a form of “ get on with it “ attitude, now mtySocial worker says she’s done all she can as helping with various things and no today my community OT says she done as regards helping us to move into suitable property, when quite frankly I’m in the same boat as I always was on day 1 of discharge…… noo change there then! I feel quite abandoned and just left to get on with it …today the hopeless feeling has set in and the aloneness, I have family but I’m on about professionals. Has anyone else ever felt this way or been in this situation?
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When the medical professionals discharge us it can feel like we have been abandoned. I certainly felt like that when my OT retired & wasn’t replaced. After a while though I started to realise that they had given me some techniques and the rest was down to me.
If there are things they said you would get & you haven’t had them then follow this up with your GP. They can also help you with things you may need now that you didn’t before etc. It is a bit of a lottery sometimes and it shouldn’t be.
Best wishes
Ann
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But that’s just it, at some point you do have to start coping on your own, if they have done all that they can that is. I remember feeling that way after my first born son. I had doctors, nurses, midwives, my husband, family, friends, etc for weeks before, during and after the birth. And then suddenly one day I’m on my own to get on with it. Ok, I still had my hubby at the end of the day.
But you can still have this same feeling after you’ve come back off holiday too. Personally, I was relieved to get rid of the experts. That just confirmed I was not at risk anymore. But also that I could really get started on my rehabbing because I felt they were hindering and holding me back. I was now free to do what I wanted when I wanted, at my own schedule 
Lorraine
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Yes been through the example you gave me as in first born 40 years ago…but nothing like that in this case ([coming home after a holiday]or the other example. I didn’t feel abondoment with my baby at all….and I know I have to improve on my own however these are for other mitigating situations relating to them knowing I can’t manage around my home as regards personal care I’ve coped on my own for over 40 years raising 2 now adult children as my hubsnd couldn’t take on responsibilities due to hi bi polar I’m independent but the promises and genuine help andsupport left once I was left in the community. But thanks for your reply@Lorraine
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Have you tried contact the like of the Stroke Association or Age UK to see what they could do to help?
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@Lorraine, yes age concern, care direct, assessable homes, who said to put in official complaint which I recently have done
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Hi Sue @Sue1958
I would definitely recommend giving our Stroke Support Helpline:0303 3033 100 a call as @EmeraldEyes has mentioned. They will be able to let you know what help you should be receiving and to help you to get that help.
Anna
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You see, hopefully you are not completely abandoned and the SA can do something to fight for your corner 
Lorraine
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Hi Sue. Just wondered if you are able to pay for private physio? I have had to do this as the brilliant Community Physios at our local hospital eventually had to stop coming as I knew they would. Private physio can be expensive but at least you would have someone to talk too and help with any problems. Worth thinking about. Good luck - Janet
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That’s how I felt. Abandoned. Fortunately I’m the sort of person who just rolls up their sleeves and gets on with it. I’ve sorted out my own physio, OT and lots of Zoom classes to do.
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Sue,
Yes, that is how a great many survivors feel, myself included. It’s therefore time to take matters into your own hands. Do your own research, and follow your instincts, intuition and trust your own intelligence - the 3 'i’s. You will feel empowered, ultimately !
Here’s my journey, taking matters into my own hands ;
https://www.youtube.com/@Start-Again-xyz
Good luck, Roland
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It’s not the physio it’s more like support in moving as in a home that doesn’t fit what I need and non Accessable bathroom so bed baths and commode really messes with my head …I’m clean don’t get me wrong but I’d love to get on an actual toilet and in an actual shower!
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Fully understand how you feel Sue! My husband has not had a bath or shower since he came home about 6 weeks ago. He cannot walk so it’s been a daily strip wash and hair wash but he says he would just love to sit in the shower. He can get to the loo with me helping. I push him in on a Sara Stedy over the raised toilet seat and frame and leave it to him. Much better than the commode.
We’ve had two tradesmen in this week to quote for removing P shaped bath and having shower tray etc put in.
Have you checked whether your local council would put you in a wet room? My late Mum owned her own home but had very little savings and just the state pension. They were really helpful and she had a lovely wet room with shower, seat, shower curtain etc. it enabled her to stay in her own home for many more years.
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edited I do tend tend to get into a huge personal pity party about this topic
I struggle with it deeply as i do with the disparity in care and local provisioning of services my local stroke unit was closed so there is no real local provisioning for strokes.
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We have one but our social housing curo won’t do it dispute all and it’s army onto them, and it’s costly to take them to court even though they are breaking disibility act 2010 an housing regulations stress didn’t help towards my stroke….its not wheelchair accessible…
I’m sorry you’re going through it too x
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Hi Sue. I referred myself exactly a year ago for a local Authority Social Worker to visit me (self referred, as I got diagnosed some time after what THEY call an Asymptomatic Stroke, just a few visits to NHS physio clinics and an OT home visit to assess me for cognitive damage to show me how to use a walking stick they provided me with, , and neater to assess me for a supportive chair,.and
The SW finally visited me last month , was very nice, and recommended some local organisations that might be able to help me, including advice to to find a local tradesman who the Council could recommend to adapt my flat. He can’t assess me until May but i am hopeful he can make adjustments, my flat is also totally unsuitable in lots of ways.
In my area there are various organisations like Care and Repair, do you have that where you are? I would expect that Citizens Advice might be a good starting point, I know it all takes energy and time to sort out and we don’t have surplus energy but if someone can help, eg Age uk ,it would take the strain off. There may be grants available ? They should be able to advise you. Try also turn2us .
We also have a an AgeUk care-at -Home scheme in this area, , not that expensive and some of the people they send are kind and capable, there are some others who I have had to say to them I don’t want them being sent here again….
It’s terribly unfair that the Councils give so little help, and it’s a postcode lottery .
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Im sorry you feel abandoned and are struggling. I was released from hospital with no information about what to do or who was going to help me, several different kinds of laxatives? on repeat Rx and I have no family nearby, just moved into the area, so no friends close by. And… my GP gave me incorrect information about one of the meds I was to take and incorrect information about one of the physical symptoms I was having. It took 6 months for my head to clear up a bit from the stroke before I realized what had happened. Don’t give up. Keep pressing for help and support.
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Hello @Sue1958 - This is quite sad to read.
You mention husband and 2 adult children. I wonder if the family can help in some way to support you. Grandchildren?
I think the loss of independence might be something to do with it. This cannot be easy - from being independent and helping others, to needing help yourself. Is it the case you don’t feel comfortable asking for help, especially to do things you would rather do yourself?
There is no reason why we should feel abandoned in this day and age.
Wish you all the best.
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No grandchildren my son and daughter are carers
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I am always getting incensed about the lack of support for vulnerable and ill persons, including we who have suffered different types of strokes, in todays world. Maybe it was always thus. But i didnt realise until recently that the way it works seems to be that a specialist makes a diagnosis, puts you on perhaps short term or long term meds and then ‘they’ think they have done their bit and you can be left to get on with it. Although looking back a few years, it was clear that was how it worked when my parents got diseases associated with older age and I realised that it was up to me and siblings to do the care, and organising, apart from basic tasks that required strength and so on. So why I am surprised now I am in the same position???
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