My lovely Dad

My strong dependable dad was diagnosed on Fri 6th October with an Infarct Stroke which we think happened two days previously. Dad is lucky he has full physical strength but very little cognitive skills and appears to be very confused and is displaying paranoia. Like most people on the forum I'm trying to seek some positivity and understand if there are any patients who can share their story. It's very early days and we are in shock. It's heart breaking as the dad I know is lost and very vulnerable. He is receiving excellent treatment and we are taking one day at a time. I'm inspired by some of your stories and would love to hear from other families or patients who may have experience similar challenges. Thank you in advance.

Hi

I'm so sorry to hear of your dad's stroke.

Two days is very early on still, even a week (as it is now) is early. Have the medical professionals explained yet that the brain is very flexible and will attempt to rewire around the part that is affected, and set up replacement functions in other areas of the brain?

It takes time to do this, and the care your dad is receiving might include some mental exercises to regain some of the cognitive skills (maybe ask the team if he isn't?). There is hope for improvement, though this will take weeks and months.

I hope it all goes well, so you let us know how things develop?

Best wishes
Kevin

Dear Nok
So sorry to learn of Dads stroke.
I had very fast physical recovery but slow cognitive recovery. What I regret is that I continually worked on the cognitive and left the physical. I would have been better to deal with all issues together. They interact in ways that few, if any, understand.
Dad is at the very beginning of a long journey of recovery.
Those survivors who are positive and cheerful seem to be those that recover best, my mantra is smile. Be positive. It is amazing how beneficial a few smiles can be.
Although you have lost the Dad you had before stroke, you will in time win a Dad who will have many of the old features. And some of the changes might well be good changes. It is a long and slow recovery.
Do give Dad my best wishes
Colin

Hi Colin

Apologies for not responding sooner it's been a stressful time. I hope you're keeping well?

Dad is now home and we are realising that we have a long road ahead to support dad getting better. Whilst he is less tearful at home his mood is very unpredictable, he's angry and confused and very irritable and frightened I think. It's hard on Mum as she was so independent and out and about most days so we are all going through a period of adjustment. Selfishly I want to wave a wand and put him back together - one thing I'm interested in understanding is how does it feel for him? What went through your head in thecearly days? Did you realise something serious had happened to you? I feel so helpless when I see the look on his face and just try to reassure him. You are such a support for people on this site you really are so inspirational.

Thank you
Nicola

Dear Nok
Thank you for the nice comments. Flattery will get you everywhere.
To answer your question.
From day 1 yes I realized something very serious had happened to me. I was unable to move so I couldn't think otherwise. I then wanted to "get better" and would do anything the medical people told me. I did the physio stuff three times over.
I thought how lucky I was to survive when most strokes kill. I thought about why I was saved.

Something that I did the right way was to tell my wife that she must take two hours a day away from me. She likes shopping, so that was often her time away. Or Guild or coffee at a friends. Anything to stop her being chained to me.
Within a few months she was taking three day breaks away from me. At first this was hard, but pretty soon I found these days alone helped me sort my head out.

No one can get me better. I have to do this myself.
Support is great, but its me that needs to effect recovery.

I had daily visits from an NHS team. An early discharge team. They had so much information. I wish I had taken on board a bit more of their knowledge, once the six weeks were up, I was on my own.

I was tearful (I don't cry, huh) for a while I was alarmed, and I was always tired, but there was no anger and no irritability for many many months.

I wrote down the phasing of the tiredness (it came on in waves) and adapted. I was doing 30 minute deep resting, often sleeping, every two hours.
I wrote down every new bit of capability. The joy of feeling through my feet, the first walk without the crutch, the first night when I didn't have nightmares. So many little landmarks that meant everything to me.
I wrote down my "goals", then the important bit, I wrote down how I was going to achieve those goals. nb How I was going to achieve, not who was going to do it for me.
I monitored every wave of depression that attacked me (just about daily) and I determined it was not going to get me.
I sat and forced a smile several times a day. I thought about what I had recovered. What I could do.

Hope this might just help a fraction. There is so much to come for Dad. So much to learn.

Ask on here and the lovely folk will likely answer.

Please say hello to Dad from me. Only another SS understands what he is going through.

Bless you all
Colin

Colin, your post mirrors my experience, but with some variations. I knew something serious had happened, but was very ‘out of it’. People’s worried faces made me worry. I knew I had to work hard to get well and also repeated my exercises. I wanted to go home, but the first night back I was quite fearful. I had the same advice for my partner as you gave your wife, but we do go on breaks together. I never cried once, but had flashes of rage. Then I learnt to laugh at myself and still do. My first visit to a supermarket exhausted me. I found group conversation exhausting early on. I hated being helped and still do. I did write a poem every day to log my thoughts and feelings. Did this for a year. I still rest in the afternoon, but sleep better at night if I stay up late. Most importantly, I came to realise progress is slow, but things do get better.

Thanks John
I like your posts that you make. We are very similar in many ways,
Colin

Nicola, You have made me re-think my initial response to finding I had a stroke. I didn't really think of anything except myself, how I could improve my walking, talking and hand movement. My entire day was wrapped up in me. I was home after three days because the hospital was virtually shutting down for Xmas and all the experts were either away or just about to go. Since I was in no danger to anyone and was doing all the right things I was allowed home.
There was another angle to all this, I was just recovering from an operation to remove my spleen and that meant my immune system was susceptible to germs and a Hospital is full of them!
I was home for a short time before I realised how much I was dependent on my wife. Fortunately, being retired, she had no obligations except her social life and I was her total commitment. I decided that I should play my part and took over the washing up again. This was quite disastrous initially but we both persevered. I then decided that she should get back to picking up her social life once more. She was terrified of leaving me but mobile phones are a marvellous lifeline and she was even allowed to keep hers on when playing in quizzes.
Every person's responses are quite different. I recognised my responsibilities fairly quickly but I don't expect every one else would be the same. So I really havn't eased your worries, have I ? Anyway, I've answered your question as honestly as I could.
Deigh

Good morning Deigh

Thank you for your reply, your determination and perseverance come across very clear in your story. Thank you for sharing your experiences, I'm beginning to realise that this is a jigsaw puzzle without a picture and as a family we have to work together and help dad to get into a position where he feels comfortable. I've realised, through this forum, that the Dad that I knew is in the past but we must look forward to the new person he now is and will become. He always was a stubborn person and that it still coming through - he is not accepting help right now and that is hard for us as we can see him struggling and there is a balance between maintaining his dignity but also guiding him through this situation. You seem to have worked out an arrangement with your wife that is working for you both, well done for having the courage to be independent and also allow your wife to have some time for herself. I am really amazed at you and Colin who seem to be doing a great job of propping us all up while we work out what's going on - I'm ashamed to admit that I knew nothing about Strokes up until three weeks ago - what I'm discovering is that it is a complex and wide ranging illness and I have an insatiable appetite to keep reading and reading as much as I can about the subject. I'm really looking for something that doesn't exist and that is that there is a magic potion that will undo what has happened - Dad is so vulnerable and startled that I can't bear to see him like this. He was such an independent, strong minded, fit and active man, but my family and I are committed to helping him as much as we can. I am arranging for him to do a little light gardening with me tomorrow, just helping to pick up a few leaves and mainly to make him feel that life goes on and he is still a big part of my life - I don't want him to feel 'different' . Thank you Deigh for all your wise words and have a lovely day.
Kind regards
Nicola

Nicola, Thanks for that reply. You must accept that I like Colin and John, knew nothing about strokes until we found ourselves in the maelstrom. All three of us now know the despair and confusion they bring and having accepted help from others in our early stages are now trying to assist new victims in their difficult times.
Your questions made me think out my early days and I hadn't realised that after the initial shock and despair I had dropped into a survival mode and just thought about myself.
I was fortunate that my wife was well, surrounded by friends and family in a secure environment and able to drive, so she could be counted out of the problems I had to face!
Please keep in touch.
Deigh

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