It’s been a while

[Adidrive]

It’s been a while since I’ve posted anything and I’m not sure why. I’ve had battles with the rehab unit in Homerton, lack of communication from them because they still couldn’t get my phone number right, nursing staff not following OT guidelines for orientation, meetings going ahead without me because I wasn’t told about them and worst of all, Jess being discharged with a purpose built arm splint strapped to her leg and the purpose built leg splint left behind.

I’ve also battled Social Services who are disputing the CHC decision not to give full funding and they want to do their own assessments. Despite Homerton referring Jess to a needs, age and location placement near to home Social Services said it was too far away (only a half hour drive so clearly it was all about the money) and they tried to put her into old people’s home for 6 weeks. As soon as I threatened to raise a safeguarding they backed down and Jess is now in an amazing Leonard Cheshire home near Colchester with specially trained staff, with residents of her own age and near to home. Technically this is only for 6 weeks but it will be impossible to put her somewhere else.

Her progress is very very slow and is hampered by a trephined where the skin has sunk too low and is touching her brain and causing chronic head and jaw pain. At the moment we are waiting for Queens at Romford to get a plate made so she can have surgery.

Her cognitive skills are still restricted but since she has been at Seven Rivers she is beginning to orientate herself more, with the help of the staff, something that wasn’t happening at Homerton.

She is walking more and has had a lot of physio input. This is still early days but the hope is still that she will get to a point where she can come home.

I am now on my own at home as her daughter has moved out and her son, unfortunately, has had to go to foster care. Some may raise eyebrows but the situation was untenable even though we had done our best and we just felt that he needed more support than we could give, fortunately he agreed, as did children’s social services, and we are all still going to be taking home to see his mum and having him back home as often as we can.

I honestly still don’t know what the future holds but all I can do is hope beyond hope......and gain hope from what I read on here

[cat3]

What an massive challenge it is getting to grips with all the technical/medical jargon and taking on so many different areas of officialdom. It's comparable to being thrown into the midst of a new & demanding career for which you're neither trained nor qualified.

But you're doing a fantastic 'juggling' exercise Adi in a highly demanding and stressful role, so no raised eyebrows from me. And you're obviously accepting the idea of Jess's 'comeback' being a lengthy process. I hope it won't be TOO long before she's ready for home so you can share in the next stages of her progress.

It'll be so comforting for her sharing normal routine, thoughts and humour with her loved one in a familiar place ; a place where she can be encouraged to keep developing & improving, but can also rest whenever the fatigue takes over.

Keep on hoping Adi, and keep conveying that hope to your dear lady. There's a way still to go, but you've already come such a long way !

Cat x

[Kavib]

Oh this sounds so challenging for you. It must be so difficult to make the decisions you have made and heartbreaking. You are very strong and once you can manage then maybe you can have your family back together again. Maybe you need this time to focus on your partner right now. Good luck and stay strong x