My husband suffered a massive stroke after surgery for an aneurysm in May and has been in specialist neuro rehab for 6 weeks.
We recently had a patient review meeting via zoom and a discharge date in January is being worked towards.
I dearly would love him home but am terrified at the prospect too, he has profound left side neglect so is not processing anything on his left side. I can stand and talk to him on his left side and it is like he completely ignores me. He is having trouble maintaining sitting up and is not walking or using his left arm and is being hoisted out of bed into a chair.
His speech is getting better but his memory is all over the place and his personality is different, he is awaiting cranioplasty because half of his skull is missing and he is being peg fed.
January seems so close and i don't know what i should be doing to prepare, quite honestly i feel terrified i won't be able to take care of him.
i am taking our daughter to see him next week as he hasn't seen our children since may and i am only allowed to take one with me at a time(we have 3). She is 13 and quite anxious about it and when i told my husband i am bringing her next time ,he didn't remember who she was.
sorry for the long post, any carer advice greatly appreciated.
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pozza40
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Oh Pozza I do feel for you. After all these months of uncertainty and separation from your husband, an unreal situation has taken an all-too-real turn and naturally raised a hundred questions and doubts about his needs, and your ability to cope.
You must insist on a full care package before your man is anywhere near discharge, in writing and which satisfies your abilities and his needs. Also, get as much support onboard from any family members willing to be involved, at least for the initial settling-in period.
Be sure you have all necessary safety equipment in place and that respite terms are agreed. The hospital should be contacting Social Services to arrange an assessment which should include speaking directly with you.
Once the necessary safeguards are sorted you need to remind yourself that a 'One day at a time' strategy is the most manageable option to avoid getting ahead of yourself and imagining scenarios which might never happen. But expecting the unexpected goes without saying.
I hope, once your man is back in his familiar environment and his cranioplasty is completed, that he'll start to rally. It'll be a long process, but with constant reassurance and with family around him (plus physio/occupational therapy etc.) there's every reason to expect progress towards an acceptable quality of life.......for all of you. I truly hope so m'dear.
Please keep us updated on events, and how you're coping Pozza.
I'm so sorry that your family is going through this, your anxiety at your husband returning home is completely understandable. I imagine through everything, you're wondering how you'll be able to care for his needs and maintain a household and look after your kids (and look after yourself which carers tend to forget about). My only advice is to seek as much support as you possibly can, after a hospital discharge, it is usual for the occupational therapists to organise temporary help in the form of carers for a short period of time but I wonder if you'll be able to pay for carers in the long term because this would help you and your husband immensely.Carers can come as often as you require, usually on a morning to help wash and dress or on an evening to help with getting to bed.
Are you the one who'll be administering the peg feed? Have the nurses shown you how to do it?
I know that the OT team will also supply equipment that will make life easier up to £1000. Have you asked them about this? In the long term, quality of life may be improved by investing in a bath lift or walk in shower with a stool or a stair lift. I wish i could say that life will return to normal for you but it might not, so my advice is to just focus on the joy that comes, every small victory that he has, and I am praying for you that parts of him start to return. It's devastating he didn't remember your daughter but try not to be too upset, if you'd have asked him before the stroke I'm sure he would have been mortified at the thought of not remembering her.
In times like this, family and friends want to help so don't be afraid of accepting it. Your husbands occupational therapy team are really the best source of information for you right now to help you prepare so seek their advice.
Wishing you and your family all the best. Feel free to message me if you need anything, I'm a nurse and have worked with stroke patients a little in the past although by no means an expert.
Hi Pozza, I was a carer prior to my stroke, so believe me when I say you will be able to meet your husbands needs, with instruction and support. Please don’t let them discharge him before you’ve had the instruction and feel confidant, they may try and rush you but dig your heels in. You will need all his equipment in place, for peg feeding also profile bed hoist etc, they should call a discharge meeting with you included, they cannot just discharge him overnight, they have to be sure you are confidant to look after him. Whatever support they offer you TAKE IT, usually home carers, for help getting him up ,going to bed etc, please don’t struggle on your own, especially with young children to care for too. I wish you and your husband lots of luck for the future, hope you have a lovely Christmas and will get lots of support off here, love Alice xx
My friend had a traumatic brain injury in April 2019 and I've been helping him with things since then. You could look at the gov.uk site as I claimed for Carer's Allowance for myself and also Attendance Allowance for my friend. You might want to look at this as soon as possible as the payments don't start until the condition your husband has been for 6 months. You can apply online as I did. It's a useful benefit as my friend is using his now to have a carer come twice a week to take him shopping and help with some cleaning.
Also I contacted our Adult Social care team who came and did an assessment and also we had a social worker assigned who was very helpful. Once we were on their books we only have to contact them again if my friend has any changes. They also did a finance assessment to which tells you how much you may have to contribute if you need further care in the future.
It's been a big learning curve for me, although I was a carer for a few years. I found this site when I was really struggling to know where to turn and have found it brilliant. You could contact Headway too as they'll be experienced of people in a similar situation to yours.
I would recommend calling the Headway helpline on 0808 800 2244. They will help you with information and support. They are very knowledgeable and compassionate. I do wish you and your family all the best for the future.
That sounds very much like me although I was able to walk when I left hospital,You will need help with transfers etc so I would expect the OT should be able to give you some advice,I also had hemineglect, it didn't end well in my situation so good luck.Be very patient
I hope you don't mind me asking, how the hemineglect didn't end well for you. My husbands is quite profound, practically from straight in front of him, everything to left is not being recognised.
I didntpay any attention to my arm so it would hang down and eventually subluxed my shoulder so that has taken ages to strengthen and still not the same 2 years later. I couldnt cross the road unaided!. However it gradually got better and is fine now i think but all the strsss led to my relationship breaking down in a bad way, acrimony etc. However i am now on my own and quite content. I dont think family life and brain injury work well together. I couldnt have coped on my own but had dreamt of going to rehab in the swiss alps for a few months,that would be ideal but not within most mortals reach. Happy to chat more if you like its not easy
You will be on auto pilot, natural instincts to respond and meet everyones needs will be very difficult, 31st march my husband came home, were still adapting and facing the challenges, the emotional, physical exhaustion will make you ill, ive yet to have 2 days ive felt well from just being on demand constantly. I gave care 24/7 first 4.5 months solo with teenager and 2 year old, i now give roughly 75hours a week whilst working keeping roof over head still solo no support from agencies, family, friends. You can do this, i keep the positive responses on this forum and keep my hope that we will get through this and i believe in my husbands determination to help with recovery.
I forgot to add, around 6th month you begin to adjust and it begins to become the norm whilst noticing progress we began to laugh at learning from trial and error around that time 6th month home we still continue to juggle what works best. Dont let fear take over, your both on a mission to a new family functioning and its alot to accept for anyone at early stage x
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