Update On My Wife & Thoughts Of The Future

[HubbyOfSeriousInjury]

It looks like it's a long time since I posted an update about my wife's condition. In fact it looks like it was 7 months ago I posted this (if links work): healthunlocked.com/headway/...

In short it's getting on for 10 and a half months since she sustained traumatic brain and other injuries in a terrible accident. Very roughly she spent close to a month in ITU, 7 months in Acute Rehab Trauma Unit in hospital and has been in a Neuro Rehab facility for the last three months. She has come a long way after first not being expected to make it through the first night and then not being expected to regain consciousness.

She has made good progress physically and can now transfer from bed to chair with some assistance and also walk a few steps though one of her arms was very badly broken so she will never regain much use of it.

She does have significant neurological problems though with serious cognitive, confusion and communication issues. She's also speaking both English and her native language. When she first started to regain her speech she was mixing the languages (along with a good proportion of sounds that didn't really correspond to one language or the other). Now she is mainly speaking one language or the other not mixing them and, if I ask her to switch to English she either will or she'll just say no. Along with this she has aphasia. All of this combined is making it difficult for the psychologists to do a meaningful neurological assessment as it's hard to 'unpick' cognitive/communication/language/aphasia effects.

Along with this she has considerable memory loss but does know who I am (and that we're married) who the kids are and various other family members.

She is still making progress and will stay in the neuro rehab facility for at least another 12 week block of treatment/care. She seems happy there and I am happy she is getting good care while there.

I have obviously had some thoughts of the future along the way but as her condition has changed so the possible future options have changed too. Mainly though I have been focussing on the day-to-day, planning visits to see her and dealing with immediate priorities. So far I haven't engaged with anyone formally about what might happen in the medium/long term. I know what I want in an ideal world - a miraculous recovery and for her to return home to live as normal a life as possible but I do realise that is unrealistically optimistic.

Blimey - sorry for the long post (I've just seen how much I've already typed) and I haven't really got to the point yet...

I guess I'm asking where I can turn to to get a view about what the next steps might be? I know that at some point her time in the rehab facility will come to an end as I assume the funding will stop as/when her progress slows/stops. What I don't know is what will happen after that. I spoke with someone from Headway in the very early days and got some good advice about the situation at the time but I've not spoken to them since. I guess they would be a good place to start but if anyone else has any advice on who else I should speak to I'd appreciate it. I don't even know right now who will make the decision on where she will go when she leaves rehab.

[JULIETstevens]

Hi there. I am the one who had a brain haemorrhage. My husband is my carer now. I had psychological issues just after I got home, including psychosis, denial and anger . With time, love, support from my husband and children I have come back to myself again so hang in there, get your own support from headway and tell your wife that she's not alone and she can get through this. Stay strong xxx Juliet

[Jowood29]

Hi, I’m 6 years on after brain surgery , in my experience, the first 2 years were slow in gaining my language back, i had speech and language therapy for 2 and half years, and this can still be affected by sensory overload and fatigue. Language is the first thing to deplete if I’ve done too much and need rest. If your wife is getting neuro rehabilitation , then she’s getting the best help, but I’m sorry to say it’s still very much early days for her in recovery. In my experience the first 3 years were the hardest and I was ok to be at home. It’s the last 2 years out of 6 years I’ve made the most recovery and can now be more independent. Im sure this is very difficult for you all and I would reach out to headway again and also get some regular support for yourself, mentally this is exhausting for you both. The answers you are looking for are certainly not straight forward with a brain injury. Everyone is different in their recovery. But I can tell you, slowly you can make progress, life is different, you can adapt and there’s still much fun to be had. I would say my marriage is really good despite my brain injury, I have some limitations and have to live differently. There has been some very dark and difficult days though, it’s been tough. I got neuro psychological help and our expectations of me returning to my old self went, it was much easier to realise that I couldn’t do our usual busy life.

So there’s hope, but it’s slow. You cannot work out the future, take help that is offered. Have no expectations. Celebrate the little achievements. Hang on in there, you’re doing much better than you think you both are. Look how far you’ve come. There is still possibilities, give yourself time. From a wife’s point of view, you feel a disappointment to your husband and the anxiety of the situation weighs heavy, just getting dressed and moving can all that consumes you, it’s not that you don’t love or care for your spouse , your brain doesn’t have any capacity to even process that properly, as you get better, you are so thankful and your love deepens of how they stood by you and supported you.

Best wishes x

[philbou]

Hi buddy

Hope your ok

Have the rehab place started talking about discharge yet

They won’t just discharge her into your care

There’s a pathway to follow before any discharge

But one thing is to start to prepare your home for what you’ll need

It’s hard to plan for and there is help available

The ot s are the ones to talk too

They will visit your house and see what stuff you need

One thing I learnt though

Never ever allow a discharge until your totally ready and sure

Once you are off the books it’s someone’s else’s problem

You may have to bump heads with them at times to get what you want

But make sure everything is in place

Your wife will have a social worker assigned

Also look at any benefits she’s entitled too

There will be help to do that

The council is also good at helping

They have ot s and community liaisons that will help you

It’s hard and if you can think of any specific things and question

I’m sure I’ll remember how we went

Best wishes buddy

[Dogsabighelp]

hey,your situation resonates with me totally.how do you plan when you dont know or understand what obstacles you will face?i assume your wife is in a nuero rehab facility?these placements are usually only for 6 months the idea being to provide the best possible assessment for future placement/care.i am happy to talk with you further should you like to.its a long road but if i can help you in any way feel free to contact me

[HubbyOfSeriousInjury in reply to Dogsabighelp]

Yes - she's in a Neuro Rehab Facility. The funding is in blocks of 12 weeks and the 2nd 12 week block was agreed and has just started. I really have been living day-to-day since the accident but need to start taking a longer view. I have a multi-disciplinary team meeting there at the start of Sep and have a follow on meeting specifically about 'what happens next'.

And thanks for the offer to share your experience/knowledge - I may well take you up on that once I have more understanding of the overall process.

[philbou]

Nuero rehab places are as long as you are improving and hitting targets

There’s not really any specific time

I went every day and took part helped with her classes

Learnt lots from physio

And Slt

It’s best to arm yourself with every bit of knowledge you can

No one including the doctors or therapist will know how things will pan out

It’s a very very long road

And it’s ongoing

You have to learn how to cope

The physical side is easy to plan

Imagine yourself with your partner’s deficits and try to do things round the house with that in mind

I spent out life savings on an extension to make a downstairs wetroom

But rather than have a downstairs bedroom

If transfers can be done it’s no different transferring onto a stairlift But you will end up arguing that point

Flat floors no rugs better no carpet so a wood floor that way transfer equipment will move easily

Wide door ways so a wheelchair can go through

Think about eating where are you going to eat

Heating a internet thermostat

So you can control the heating easily

Cameras and also a call system

Are you going to finish work

Or do you still need the income

There’s a thousand things to plan for

My extension took 11 months to build partly because Covid started 3 months into build and everything stopped

It a lot to think about

I’m here anytime to help

[HubbyOfSeriousInjury in reply to philbou]

Thanks

My own (completely unqualified) view is there is a significant gap between her capability to return home and the adaptability of our house (which was built in 1875 and has a staircase that would be illegal if built today - quite apart from the fact that our bedroom is in the attic up another narrow flight of stairs)

In an ideal world I'd love her to return home and sit in her garden and tell me everything that needs doing after 10 months of neglect. But I fear that if she does return to a home setting it won't be this home.

[Dogsabighelp]

oh love,i get this so much,read my bio when you get chance.your situation is really very similar in respect of your thoughts/confusion for future.of course,all you can do is act day to day as you have been.your lady still has some time yet in neuro placement,be assured that they will bring her to the optimum whilst in their care,its what they do even if we dont understand it?what happens next is quite complicated,and it seems to me that,unfortunatley it depends on where you live in this country.nuero rehab do their work,after that its down to c.c.g/social services to find the next placement.of course,a lot of factors need to be taken into account.this is where you are going to have to take some control.you mention your wife had accident?can i assume you have a legal team?if so,ask for their care co-ordinator to assist you for future,these are people that have a medical background and understand the processes involved.if there is anything further i could help you with,i am always happy to help if i can,feel free to msg me,i will reply.best wishes dxx

[pozza40]

Hi hubby, I can remember feeling how you do right now and still do to a certain extent. We are 2 years 3 months since my husband had a massive stroke following surgery for an aneurysm. He was in neuro rehab for just over 6 months, in total he was away from home for a year.During his last 12 week block,the ot there started the process of assessing our home.ours is also an old Victorian build ,narrow doorways,bedroom in attic with narrow twisting staircase.

Our only option was to chop our through lounge into two and making one half a bedroom for my husband. We have been supplied with hospital bed,hoist and wheelchair. Even now we are still waiting for the process of making adaptations so that he can have a wet room.its been over a year he has been home and no shower. He is pretty much bedbound and is just in his room all the time.its not really much of a life but he is with us and gets to see his children grow up.

It does seem to me that each persons experience is different,I think a lot depends on how good the services are where you live. And if you are lucky enough to get a good ot,social worker and whether you are able to fund any of it yourselves.

Good luck ,best wishes