Life changed dramatically 6 months ago when my wife was given days to live after a brain tumour was discovered from a routine CT & MRI scan after my wife fell and hit her head.
Now with 1 month to go until my wife returns home for the next stage of building our lives together, I have been recommended to join here to seek the support and advice of others.
My wife is returning home in early May from specialist rehabilitation around mobility and memory loss having made great improvements but will remain with some limitations in these areas.
Does anyone have any advice or experiences they can share for the first days or weeks back home after >6 months in Hospitals / Care home / rehabilitation facilities?
First thing is to make sure has had home visits. This will help identify problems that could crop up.
Don't let them discharge her to home until you have a care plan in place.
Make sure all equipment you may need is in place before discharge.
Everything is so much harder once a person is home and you can go from that secure environment to being on your own if you are not careful.
I say this from my own experience. My husband was doing home visits. He had only had one and I had an unexpected phone call asking if I would have him home. I was excited because I missed him badly and nothing was mentioned about care plans. Apart from a telephone assessment initianated by me from social services I was told it would be six months or more before a vist. Still waiting.
I can't say much about mobility but memory loss causes all sorts of problems. Even basic things like operating central heating and hot water controls becomes something that has to be re learnt and it takes a long time.
Still gets in a mess with TV control.
Wants to cook but uses wrong controls.
Money.......very little understanding in our case.
Just expect everything you do to be relearnt but you may be lucky and things will be different.
Saying all that I am glad he is home and life is not too bad once you get used to it.
Hi there, it’s going to take time but stay positive. I have done 3 videos to show hospital and recovery days after a brain injury I hope this helps , this is part 1 youtu.be/qM7qgw79k_o
I have also written a book Room 23 that describes the full recovery process you can get on amazon here : amazon.co.uk/Room-23-Surviv...
Hi - I've had my husband back home for 6 months after a traumatic brain injury- we have whiteboards reminding him he is home & other relevant information. I would say be prepared to fight for a good rehab package, just take a day at a time & be kind to yourself!
Hi thank u so much for your great advice, I have just started using the whiteboards around the house for daily routine and food meals for the week. 3days in so far and trying to start a routine and find the best way of working together.
Hi Ric and welcome. So sorry to hear about your wife's illness and its impact on both of you. Can you tell us more about your wife's abilities and issues since the surgery, as in recognition, speech, mobility etc., and her official prognosis ? Cat x
Hi cat, well my wife came home on Thursday before the bank holiday weekend, care plan in place for next 12weeks then another review. I didn't get any discharge paperwork from her rehab centre, so don't officially know what the prognosis but many reviews with treating and care team have highlighted severe memory loss less than 1% of fifty percentile range which brings with it anger, frustration and anxiety. Also have the remaining brain Tumor to manage, review for this on Thursday.
It's not so much a matter of recovery for many of us but one of managing the issues, which we learn once we're home through necessity and with the passage of time. The memory deficit is still a big problem for me, even 7 years on, but I manage it with what works for me (lists, whiteboards, computer/phone alerts etc.). I see you've started the basics so won't go far wrong.
I hope your wife will settle into a routine and a feeling of safety. You should phone her consultant's secretary (contact number from hosp.main reception) and ask for the discharge notes ; it might be an oversight but pretty unusual and remiss !
Best wishes in going forward Ric. Please stay in touch when you can.
Hi, my husband came home after being in hospital for nearly 6 months suffering a stroke (plus brain injury from falling down the stairs as a result of the stroke). He couldn’t walk, had lack of insight and they recommended that he needed 24 hour care and should be in a nursing home. We didn’t have any home visits unfortunately, We had an excellent social worker who fought hard on our behalf to get a good discharge care package - 5 visits a day plus an overnight call if we needed it and ensured all this was in place before discharge. make sure that you’re prioritised for NHS rehab treatment and don’t be ashamed of being assertive in getting your wife into the system - it took 5 weeks for us to get our first appt. me constantly calling etc and making a nuisance of myself! your local authority should be able to provide as much equipment as you need, including stand turners, handrails, ramps, beds, toilet aids, shower chairs etc., take all that’s offered, and try it, you can send back what doesn’t work for you. (Your wife’s social worker should help with this, if she hadn’t yet been allocated a social worker, now is the time to start requesting this through your wife team at the hospital). You don’t mention how old your wife is, but the sooner you start applying for any benefits she is entitled to, the better, as these can take some weeks to process, same with the blue badge. As someone else mentions, don’t be pushed into a discharge date when you aren’t fully prepared and have a plan in place....I won’t deny it’s hard and 10 months on it’s still hard but in different ways.... but so so much better than the hospital days.....still now, he can’t be left on his own for more than a couple of hours, but that’s two hours more than when he left hospital. Find the humour in things if you can, we laugh when he gets words wrong which takes the frustration out of the situation, make sure we write things down as soon as he mentions he needs something, or to do something. Diary sheets help him remember how his day is planned out. Take one day at a time, trying to look too far ahead for me personally was painful, worrying and stressful - and still is - nobody can tell you the end of the story for recovery. My husband was told he wouldn’t walk again and ten months on he is able to walk around the house and garden on a walking frame and is still improving. Be prepared for a rollercoaster journey, the downs feel devastating, but the smallest little bits of progress bring enormous joy - and finally never lose hope, I have grown so much as a person over the last 15 months, and you will at moments, feel immense pride in yourself of dealing with the most awful situation and still being able to tell the tale. Lots of people have said to me I don’t know how you cope - we don’t have a large family, those close live abroad, but you will cope, build that small network of people who will help you cope and get through those days which you feel you can’t. It’s a harsh learning curve, but embrace it as it sounds like you are doing, the start of your next chapter of your life together. All the very best.
Hi Rick sorry you,ve needed to join this group however evryone here understands what you,re living with .your story is similar to mine as my partner had a brain tumour .. other brilliant charities i have found very helpful are The Brain Tumour Charity and Brainstrust , which may be worth looking at some time . i hope things go well when your wife does get home
Make sure your friends are all there for you. Try not to let your wife's life overwhelm your every waking moment. Make a space for your self. Sent with best wishes, Weatherwitch.
Hi thank for the support, we don't really have any friends and our family's don't want to be involved with the care, any advice regarding support groups u may know off?
Brainstrust have support groups which they call meet ups .also if you,re wife is having treatment many hospitals ahve support groups .just thought Headway have proven very helpful for us as well x
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Update, just home after craniotomy 
Advice return to work 
Father discharged after burr hole surgery - worried
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The day I came home😁
