Hi, I haven’t posted on here before but I’ve dipped in and out since my Dad’s stroke in 2023.
Essentially, I am looking for any tips advice or support for family members as they “recover”.
Dad was relatively active, he drove a car looked after his grandson went on days out etc. Then his stroke changed everything. There was some hope that he would recover some form or normality when he was in hospital but when he was discharged it all went downhill. We were told he was dying, which wasn’t true, he’d actually had a bad reaction to his medication but still this period of time was incredibly traumatic. With that and having to move him to a care home and some really bizarre family issues, 2024 was awful.
Having had time to process and “get on with it” it feels like the dust has settled but actually myself, my sibling, mum and my son all seem to be pretty traumatised by everything that has happened over the past two years.
Myself and my sister often felt like we were no longer daughters but administrators for the extensive issues we had to deal with and our own mental wellbeing took a back seat.
We honestly feel bereaved - we lost our dad to a large extent. But we feel a bit lost as to what to do with our grief.
Would anyone have any tips or just want to share how stroke has affected you as a relative/carer? We often feel quite alone with our emotional experience because it often feels like this isn’t something that’s discussed often.
'lynsey D
I feel for you and your family. I had a stroke last November and my mother in in law had one in 2018. So I see things from both sides. Nothing will ever be the same and if you dwell on that you will never go forward. You will never feel like a daughter again because that has gone. If anyone states different they are lying to themselves. You just have to make the most of what you have. Life is so unkind sometimes and the wrong people are hit with the most complex issue to deal with. I wish you well for the future, good luck 
Hi @LynseyD a stroke really does affect everyone & not just the individual who had the stroke. It changes lives for everyone.
GPs often offer support for carers and it may be worth speaking to them. It is almost like you have to go through a grieving process when these things happen & that will hopefully help you find a level of acceptance. Things will probably not be the same again but that doesn’t mean they can’t be good.
The Stroke Association helpline 0303 3033 100 will be able to offer some advice to carers. Give them a call. Sometimes just talking about it helps.
Wishing you all, all the best.
Ann x
Hi @LynseyD
Welcome to the community, I’m sorry to hear about your dad’s stroke and the difficulties you’ve been facing as a family. As some of our other members have said, a stroke really does effect the whole family and not just the stroke survivor.
There are many carers and family members on here who I’m sure will be along to offer you their support and words of wisdom. I would echo what @Mrs5K has said about giving our helpline a call, they can really help you find anything available within your area that may help you.
I hope you’ll find this community helpful, if you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
Hi @ LynseyD So sorry to hear of your Dad’s stroke, just wanted to jump on and say hello. We are a merry band of stroke survivors and their carers and families and between us we have a wealth of experience and information and I’m sure other carers and families will be along soon to offer their words of wisdom.
I’m here as a stroke survivor but I know how devasted my husband and our 3 grown up children were when my stroke happened. Our life is very different now but we still find time to enjoy things together as a family and we now have 5 grand children to join in the fun.
I can see that others have already made a few suggestions and I hope you find this useful.
In my early recovery days, my husband and I joined a local Stroke Survivors Support Group and we both found this very helpful.
Sending positive thoughts and best wishes to you and your family.
Regards Sue
Hello @LynseyD - welcome to the community.
I will start by saying that this forum has a disparate membership of both carers and stroke survivors and the information and views shared are based on personal experiences. Whilst there are some similarities and commonalities with the cases and outcomes, at the end of the day we are all unique and so our stories and experiences. What works for one might not work for another even under the exact same conditions.
I, like you am a carer and having read your post, I note some similarities between your Dad and my Mum. I will tell you how we (my sister and I) have dealt with and cared for our Mum after she had her stroke over six years ago. I have posted quite a bit on the subject on this forum and as you have been dipping in and out since 2023, you may have come across some of my posts. Even if you haven’t, if after reading this you are interested, you can always look them up.
What I am saying is what we (my sister and I) feel and not everyone will agree. On some occasions we have been told our expectations are unrealistic, but we don’t believe that and so we just do what we have to.
We were told to “grieve” for our Mum after she had the stroke - a psychologist in the hospital tried to explain that we had “lost” our Mum and she will never be the same even if she survives. To us this was nonsense - why would I want to grieve for my Mum when clearly she is still alive? We knew our Mum better than anyone who was treating her and so whatever negative or unsupportive comments/information we got was challenged or ignored.
Upon discharge from hospital which was done purely to free a bed rather than because they had done everything they could for her, we knew we were going to have to go it alone. It did not help that part way through the journey COVID-19 threw another spanner in the works.
It was and still is incredibly tough looking after Mum - she has double up care needs, double incontinence, nil-by-mouth and aphasiac with cognitive difficulties etc. If I may say so, and if we are being honest, why should I not say it, caring for Mum is not for the faint hearted! I have said it before and I will say it again, looking after Mum is the hardest thing I have ever done and at the same time it is the most rewarding thing I/we have done (I must not forget my sister who has been a co-carer and key contributor).
I don’t know if you can imagine what state Mum might be in and how this might compare with your Dad, but I can tell you one thing, to us, she is still the same person she was before she had the stroke. It’s just that now, she is dependant on others for her daily needs.
We don’t feel sorry for her or for ourselves. It’s just something that has happened and we are dealing with it. Feeling sorry, worrying about it or anything like that isn’t going to change that. She needs help, a lot of help but we (the family) are the main providers of that care. The professionals have given up on her and in fact they gave up on her six years ago. What they do now is respond to our requests for help and often it is a token response.
They do not want to treat her and refuse treatments that others would get and yes, we get all sorts of bull sh** why she is not fit enough to receive the treatment etc. but it is all nonsense. The fact she is still here and still going to the hospital is proof she is deserving of treatment but it will not happen and so she is now left to look after herself and her inner beliefs and strength that keep her going.
I guess what I am trying to say Lynsey is that Mum is still Mum - the same person she always was, only now she needs some help from others. She is still loving and she is still loved very much. She rewards us everyday with her smile or little gestures and she occasionally tests us to the limit but that is nothing new - it is life. She is wearing a stroke survivor mask, but underneath it she is still the same person she always was and each day we see more and more of this coming through. Yes, the stroke stopped her in her tracks and for a while we wondered where she was but that was a very brief time. We spoke with her (one way dialogue) and we got the message she was going nowhere fast.
My tip and that of my sister is do what you can for your Dad. Accept what has happened has happened and there is nothing to be gained by looking back. Look forward to what you can do for your Dad to make him as comfortable as he can be and help him recover as much as he can.
Of course, I must make it clear at this stage that not everyone is like Mum. Mum is an incredible fighter and her willpower and desire to live is what has kept her going and is what is helping her to recover. Six years on, she has not stopped recovering and she keeps making progress. She never gives up and she demands help when she needs it and she gets it - she always gets what she wants in the end.
So, if you Dad is of the same mind i.e. he is able to ask for help so he can help himself then you, your sister, your Mum and son can all help to look after your Dad and help him recover.
Just as my Mum has never been anything other than my Mum, you Dad is still your Dad.
Sit down with your Dad, talk to him, hold his hand, give him a cuddle, tell him you love him. Do all the things you did before he had the stroke. Be patient and maybe, just like us, you might be pleasantly surprised.
Finally, listen to yourselves. Believe in yourselves. You and your family and your opinions is all that really matters. If we had listened to others, I would not be writing this here.
People think and tell us we are unrealistic and they may think we are mad or insane. Well if that is what looing after someone you love means, then so be it.
I wish you and your family all the best as you try to help your Dad.
Never give up - we haven’t. Believe me, Mum was given up on six years ago, yet today she is stronger than ever and she is in her mid-90s. Make of that what you will 
Yes, she needs round the clock care, but soon she will be independent again
Namaste|
Oh that has bought a tear to my eye. All you carers are just remarkable people. xx
Ann - I cry all the time, but my tears are of joy and happiness because we still have our Mum with us, inspiring us and teaching us lessons in life each and every day. We are so blessed