World Turned Upside Down By My Wife's Unexpected Stroke

Hi Graham,

Im not a stroke survivor or a carer. However i work for the Stroke Association in Stroke Recovery Services. Ive recently started to pop in here now and again on a voluntary basis. 

Take faith from the answers here. In my experience the first few weeks are the hardest and youll be hard pressed to find solid answers to the questions you have. Time will unlock the answers.

Progress will come. Celebrate each step..

Ive known some stroke survivors since my 1st few weeks on the job.  12 plus years on and they are still improving.

Never underestimate the brains ability to adjust and heal because it can and will. Always reach out for help as and when you need it. Help is available in various formats and youve made a sterling start by talking to the community on here :)

Regards,

Jason

Hi Katy

It is good to hear from people who understand what I am going through.

Many thanks for your comments - and the two main things I am begining 

to understand are :

Take each day at a time - baby steps (dont try to plan too far ahead)

Adapting to a new 'normal' whatever that may be

 

Best Regards

Graham

 

Hi Nic

Your very kind words and comments are very much appreciated at this time

You are so right - it has only been a week but I am learning to manage a day at a time and stop fretting about how the future will look and concentrate on Jans improvement every day.I speak to the hospital constantly (and see my wife virtually at least once every day) to try to understand whats being done to aid recovery and how she interact with me.I have started keeping a note of any changes/improvement in recognition/speech/etc and as you say this gives me a benchmark for the future.

I will keep everyone up to date with Jans progress and continie to as 'daft' questions.

Very best regards

Graham

Hi Colin

Your comments mean a lot to me - especially as you have articulated the frustations that you feel from a stroke victims point of view.Your point concerning the oppurtunity to be given time to absorb what has been said to you so that you are able to process the information and formulate a respone has been taken on board when I speak to Jan - thanks.

I feel somewhat cheated that currently I have to rely on 'virtual vistits' as a result of local lockdown - but at least there is less distraction for Jan and it means when I speak to her via my laptop at least it is one to one and no other vistors distracting/confusing her?

I have learned to take each day at a time , and start adapting to the new 'normal'

 

Best Regards

Graham

It's Brenda!

Hi Damian

I thank you from the bottom of my heart for your insight into the condition, positive feedback and advice.

I am sorry to hear that you were a stroke victim at only 43- but pleased to hear of your recovery.It heartens me to read description like this of stroke survivors and progress made - with a health warning that the key is time, support & commitment.

Your comments on Yes No are very uplifting as today she has extended her vocabulary by a few more words!

Can I ask - while you were Nil By Mouth, I assume you were in hospital all that time? (daft question but I just dont know)

Being a 'young' survivor fills me with hope , with the caveat that I will need to adapt to the new 'normal' whatever that may turn out to be

I will keep everyone updated on the progess of Jan over the coming weeks/months

Thanks Again

Graham

Thanks Brenda

There is no such thing as a 'daft' question on here. I didn't know what a stroke really was until I had one and I was 65 when I had mine. We had no history of strokes in our family and I didn't know anyone who'd had one so nothing to really go by. Like millions of others in the world, I thought strokes only happened to frail people over 80 and not fit and healthy people!  How wrong I was!

I agree

Dear Graham

Yes indeed, no visitors could well help Jan. I had my wife visit for several hours each day but visitors were a big distraction.

I could use the hospital bedside phone OK. It was easier than talking face to face. I was in Colchester hospital approaching christmas 2015. I was 90% paralysed. Couldnt even turn over in bed. But within days I got up and walked. Quite literally, I woke up, decided I would get out of bed, and then five physios came to my bedside and I walked out the ward. I was the lucky one on that score. Not many have that sort of recovery, but I did so its quite doable.

I can look after myself OK. Rosemary would go on short trips to stay with family and I could do the odd few days all right. The first trip was at three months and that was a bit too soon. I struggled a lot. But after say nine months I could manage much better. 

It took me years before I could attend anything without breaking down in tears. Then I suddenly thought that the problem was that my brain had not learnt how to deal with an echo. So any microphone system was hopeless. Once I sorted out the issue, then I began to resolve the problem.

I was discharged into the care of my wife, with a whole team of medical people who visited each week day for six weeks. This was called an early discharge team. I live in an ideal bungalow. No steps, toilet right by my bedroom. Wide doorways. Warm. So I was home quickly. I have a second home in Harrow. But I have not managed to go there to this day. Travel is very distressing. Yet other SS travel with ease. We are all different.

I now know that my memory from about May 2015 to the stroke on 13/12/2015 is wiped. I only know about that time because I keep a diary and I read about what I had done that year. 

Getting home was not very good. It was very distressing, and I needed the care of a professional nurse, but I didnt get that. I slept with the light on for several months. Horrific nightmares and night terrors. But that eased.

Jan will not be the same person she was. But  a lot of her will be there. I am a chartered accountant, but I cant even do my own tax return ! So I do other things, especially gardenning and growing vegetables. I dont miss the accountancy.

Last point for today: Jan would be wise to keep a stroke diary. You might need to start that going for the first few weeks. Page one should be a copy of the discharge letter that the hospital will write to her GP. That will show what the Doctors really think.

Look after yourself. Jan will need you and you need to keep fit, well and sane.

Ask anything. There are good people on this forum and we exchange our experiences. 

Colin

Hi Graham, so sorry to hear about the stroke Jan has had, it must have turned both your worlds upside down. I had a stroke over 2 years ago and it was a complete shock to both myself and my husband and came completely out of the blue.  It took me a long time to accept what had happened but it was something I had to do for myself and accepting it was a big turning point for me. 

Its good that Jan understands your questions and can answer simply, she even realises she is bored, her brain will be working hard to rewire so all she needs at the moment is simple news about family and friends that she can just listen to and give you the odd answer. Not too many questions if that makes sense, I'm sure she'll just be glad to see you. I can remember searching for answers to simple questions and finding it really hard to answer.

I'm sure you will realise from others replies that recovery is a slow process but a good recovery is possible. Some people keep a diary noting down changes and improvements, maybe this is something you could keep for her until she can take over, it will show how well she's doing. I've kept one on and off when I remember, it's a good moral boost.

I send my best wishes to Jan and to you.

Ann


 

Morning Colin 

Yet again many thanks for your thoughtful insight.

I am already keeping notes of discussions with medical staff and when I speak to Jan via the laptop - I will tidy these up and structure them over the next couple of days.

I honestly dont know the extent of the stroke on Jans left hand side at the moment - I know she can use her right arm (she waves a lot!), she gets cramp (a good sign?) and they daily unceremoniously lift her into a chair for a couple of hours (to sit her up I guess?).I suppose I will have to be patient to understand if and when and how much she will regain the use of her left hand side.

As I have said before I was initially thinking too far ahead, but I noted your comments on your bugalow - we currently have a very large 4 bed house and I worry if this will be too much (I have already learned what a challenge it is to clean), time will tell and no decisions need to be made yet.

I read your comments on hiloday/change of scenery and did some reading too - I understand (depending on how Jan improves) the meaasge is not too much too soon, baby steps again! - but a short break is something to look forward to for us all?

I will continue to be strong and eat proper meals and manage day to day.

For your information I am a CIMA account working in industry, off at the moment - but my current thinking is to try to work part time (i.e.mornings only) to be able to balance caring for Jan and still work in the future - is that a sensible idea or not practical(I appreciate it is dependant on those majic words again - 'it depends')?

Thanks again for your feedback and I will keep you updated

Very best Regards

Graham & Jan

Hi Ann

Many thanks for your king comments.

I appreciate your comments on keepeing the questions relatively simple - as I have a tendancy to ask lots of questions!

It is really helpful for someone who has experienced what Jan is going through to explain to me what it means they are trying to understand/cope with.

I will take your advice on board, when I have my next 'virtual visit' with Jan at 1.15pm today.

I have come to understand it is all about being as supportive as I can and being there for her - something I intend to devote myself to.

Someone recently desribed the process of recovery as a marathon and not a sprint - I understand it will take time, patience and adapting to a new Jan.

As you have commented I have started to keep a few notes every day of discussions with medical staff and observations on Jan on our virtual visits - I will make an effort this week to tidy them up into a more formal diary so we can look back (hopefully) and note improvement.

Thanks again for you kind wishes and I will update everyone regularly on this forum

Graham

It is a good sign that Jan can sit up. My back muscles were paralysed it was several weeks occlusion before I could sit u supported. You don't know when Jan will come home or how she will be. However you might want to consider whether it will be possible for her to sleep downstairs if necessary. Also Jan may need to use a wheelchair for distance (if so hopefully only short-term). Could you get a wheelchair in your car?

Whatever happens you will need a support network. Accept any help offered, even if is someone sitting with Jan for an hour while you go out.

Dear Graham

My stroke diary simply said "walked twenty yards. Slept for three hours. Got over the threshhold" and so on. It is hard to describe an SS symptoms. And it will be for Jan soon. So she will do things her way.

I made a firm decision to get out of bed every day. Like most SS i had some dreadful days and it was tempting to retreat to bed. But it was better to do the best i could, which always meant  getting out of bed. I think it is a good thing that the staff get her up. It took a few days before i was allowed out of bed. In fact they secured me with bars to stop me getting up !

Being wise after the act, i now realize that stroking is just a few hours. Then stabilizing medically is just a few days. Then the rehab is years. Jan will have, probably, the oddity of being cleared medically but kept in hospital until she can manage some basics.

I was in the excellent Colchester stroke unit. They are geared to seemlessly get you medically fit and ensure you can do the basics. They had me shaving, showering, walking up some stairs, and preparing breakfast. they let me home provided that my better half would ensure my safety. We are vulnerable for a month or so.
 

It was always been me who needs to do the recovery. Others might support, but its only me that can do the recovery.
 

Jan sounds to be recovering well. She will undoubtedly recover a lot more, possibly over as much as two years. She will not want to be an invalid  so i woulnt start planning a change to your employment. By all means consider all eventualities, but i would want to keep my earnings going.

My left side recovered ok. It is a bit weak, but it doesnt really hold me back.

colin

 


 

 

 

  

 

 

Hi Janet 

Many thanks for your comments

You are correct I do not how long Jan will be in hospital and what her limitations will be when she arrives home.All that I know is that I will take ot day by day (as so many people have advised me) and be there for here so that we can try and manage our way through this horrible condition.

I /We will have to face each challenges as it arrives and deal with it accordingly

I will keep eveyone on this forum up to date with Jans progress (hopefully)

Best Regards

Graham

Hi Jason

Previous to this I have always found solutions to problems - HOWEVER this situation is something that even me and my 'can do' approach to life is struggling to come to terms with.For that reason I am grateful to all the posts I have recieved on this forum offering support , advice and experience of being in a similar situation - i.e. I am not alone and I thank everyone from the bottom of my heart (you see how I am changing - I previously have not been known for such outflowings of such emotion!)

I am taking everything a day at a time , and each positive is a small victory.

The good news is that it has been just over a week but she recognises me,can answer simple question & even managed to remind me that we have an online shopping due on 20th month!

There are setbacks - today the hospital informed me this morning she had a 'vacant episode' for 2 mins & when I spoke to Jan she was worried she would be back in ICU

But as I say I will continue to be optimistic and supportive and keep updating this forum of Jans progress and all feedback is appreciated and taken on board

Best Regards

Graham

 

Dear Colin

You make a valid point the recovery is down to the stroke survivor - but as her husband it is my wish to be there for her and be as supportive as I can.It must seems so scary from her point of view?

From what I hear and the conversation I have with the Calderdale stroke unit they all go the extra mile to provide observation and the start of rehabilition so that Jan can start to put her life back together.

My frustration is not knowing how long she will be in hospital for, however I understand she cannot be released until she has made sufficient progress and is sufficiently recovered (at this moment in time she cant swallow, has a tube to feed her and adminster medication,oxygen etc..)

My other frustration (nobodys fault) is the impact of Covid 19 and lockdown preventing me from being there - but at least virtual visting gives me the ability to speak to her and see each other.

It is still early days and her body is still getting over the shock of the stroke and trying to heal - someone commented how amazing the brain is at 're -wiring' itself.

Thanks again for you advice

Best Regards

Graham

Hello Eveyone Again

First I would like to thank everyone who has responded to my posts - I have learned so much from the advice you have kindly provided, and your kind supporting comments.

They say 'No news is good news' - and how right they are.The stroke ward rang me earlier today to advise me that Jan had a 'vacant episode' for a couple of minutes this morning.Now I am sure the medical proffesional see this as a normal post bleed side effect - but to someone like me who until a week or so ago new nothing of siezures/strokes it all seems a little scary and at times overwhelming.

When I spoke to her on our virtual visit around lunchtime she managed to express to me how worried she was that she was going back into ICU.I am trying to understand is this a 'normal' side effect of the stroke, can it occur again, is it something Jan will have to manage? (I know a lot of questions)

Jan was to be moved to the Rehab word, but as I understand it she will remain for the time being on the high dependency ward so that they can monitor this additional complication.

I continue to stay strong, remain supportive (as best you can 'virtually').

This is a marathon, I am sure there will be days where it does not go well - as well as the days that show improvement - take each day at a time and I try to remain positive for both of us.

Thanks again for listening to me, and again any advice/comments are appreciated

Very Best Regards

Graham

Hi Graham,

You and your wife are really going through it. Seizures are more likely to happen to people afetr a stroke caused by a bleed. As I have found out through research they can occur within the first month or so and then they seem to happen, if they are going to around 6 months. There is quite a lot on information about them on the Stroke Association website. Having said that post-stroke seizures don't happen to everyone.

I had my first one on a plane going to Canada about 5 months after my stroke (I had been cleared to fly). I didn't know what it was so pretty scary! I've a few since then and am on anti-epilepsy medication for the rest of my life. It is about finding the right dosage. My last one was in April so I am coming up to the longest between seizures I've had. 

All the very best.

Jackie