My wife Jan this Sunday told me in the kitchen that she think she was having a stroke, and the next thing she was fitting and I called 999 and she was rushed to hospital.
Jan spent 3 days in ICU and she is now in the stroke ward.
I have been told it was a severe bleed on the brain, and the extent of the damage will not be fully understood until the swelling goes down.
I spoke to her for the first time yesterday via a 'virtual visit' as our area is in lockdown and I cannot access the hospital - the image I saw on the screen was so different to my wife I have known for over 30 years.She had trouble recognising me, could not speak, etc and it was harrowing to try to comminicate with Jan.
It all seems so unfair - she is 54, leads a healthy lifestyle and no previous indication of any problems - now we face an uncertain future, no idea of what her quality of like will be like, an unknown timescale to what level of recovery - and a lot of what, if's and it depends.
I am normally the strong , get things done sort of person - but for the first time in my life I dont have the answers or the ability to control the futute.
If anyone has been in a similar position, or can offer some advice I would be very grateful to hear from you.
Hi there, I'm very sorry to hear about your wife's stroke...you must still be in a huge state of shock and that will take a while to come to terms with. With so many unknowns, I think it is completely understandable to feel how you do, and with the virus restrictions still in place...it makes it all even harder. Feeling helpless and angry is a natural reaction, especially if you are used to being strong and able to 'fix things'...because this is something that you can't automatically make better, or control. I understand that feeling very well.
Our 81 year old Mum had her stroke back in April, and with no warning our life was turned upside down in the blink of an eye. And like you - we had no understanding or knowledge of stroke, or the impact it could / would have. So we googled and gathered as much information as we could - most of it coming from the Stroke Association website - so that we could be in a better position to cope with the changes that were happening. When speaking with the hospital over the phone, we would write everything down and take lots of notes - so that we could process what we were being told, and think about any questions we wanted to ask.
It's very easy to get drawn into thinking about how the future will unfold, but my advice would be to take it one day at a time....or one hour at a time if that's what it takes to get you through. Focus on the present day, until you have a better picture of how things will develop.
I'm relatively new to this site, but have already learnt so much from the stroke survivors, carers and family members on here, who are all so generous with their support and advice. So keep posting and I'm sure they will be able to offer lots of guidance and understanding.
So sorry to hear about your wife's stroke. I can totally relate to your shock as my husband went through the same when I had my stroke. I was older than your wife at 65 but like so many stroke victims, including your wife, I was a very healthy, active, 3 times a week at the gym, not overweight, non smoking, non drinking person. Strokes are unfair because they do not discriminate who they hit. Many of the survivors on here are young 20's and 30's people with no health problems.
Try to take each day as it comes, difficult I know but it's the only way to get through this. Once the swelling goes down, the hospital will be able to start to assess her situation and plan for her recovery. Hopefully, when the local lockdowns are lifted (We are also in local lockdown) you may be able to visit. Just you being there and holding her hand will make her feel so much better.
Many thanks for your comments / feedback - I take on board your comments on focusing on the here and now and not trying to plan for the future when there are so many uncertaintities.
From your experience does the patient improve as time progresses?
It helps to realise that I am not alone in this situation, and reading the messages time and patience seem to be a key factor in coping with this horrible and unexpected condition
If you dont mind me asking how long did it take before you saw improvement?
Hi Graham - I don't mind you asking at all. Mine was a different stroke to your wife's though in that mine was a blood clot on the right side of the brain rather than a bleed. My left side was affected and I couldn't walk or feed myself for the first week in hospital. I was told I could go home when I could walk up the stairs at the hospital. I was in a wheelchair for the first few days but determination soon kicks in and I made it up the mandatory flight of stairs by the beginning of the 2nd week. I had a very bad limp for 3 months and improvement was slow. It is now 3 yrs since my stroke and I would say I'm 90% back to the person I was. The first year was hardwork but improvement does come with time. They say the first 3 months are the hardest because this is when your brain is working flat out trying to re-wire itself and that comes with chronic fatigue but eventually it does get better.
My advice would be to take as much help from family and friends that is offered because you will need it in the first few weeks. Try and stay positive and eat well. If your wife is like me, I was more worried about how my husband would cope without me. He's never used the washing machine Eek! He has since said the hardest part is not knowing what to expect. He couldn't really do anything other than just being there.
Hi, First of all can I say how sorry I am to hear about this. I had a stroke in November 2018 and it was a bleed as well. I was sat on the toilet at the time so not very dignified! I know it was a shock for my family as like your wife I was fit and healthy. I think you have done exactly the right thing in reaching out to the stroke community as we can all support you even if only virtually. I am sure you have looked at services available in your area for when you wife is eventually allowed home.
Hi Graham, my wife uses this forum and has shown me your post. My wife had a stroke in February 2017 and like yourself a complete shock.what I'd like to say to you is had we been told at the beginning what could be achieved with hard work a determination ,our journey over the past 3 years would have been easier.My wife can now walk with a stick but still doesn't have a lot of movement in her left arm.Dispite this we manage to go shopping,eat out regularly and we have travelled abroad,so please keep your spirits up all is not lost ,your lives like our will change but not necessarily for the worse ,slowly you will regain control of your lives. Not a journey we would have chosen,so please keep your chin up and stay positive. By the way my wife was 57 when she had her stroke.
Hi Graham, I think the key word you have used there is 'time', and another will of course be patience. Both of which are needed in large amounts as you deal with these changes. With our Mum, there has certainly been improvement since she was discharged from hospital in April. But I won't lie - it is very, very hard at times.
She has started to return to normal eating, after being on a puree diet and thickened liquids, due to her swallow being affected. She is also able to walk around a little with the aid of a frame, and has even taken a few steps without. She has been able to get halfway up our staircase, and out into the garden as well. All of which comes after the doctor told us they didn't think they would be able to get her back on her feet, and also without any physio or rehab, because of the virus restrictions.
Today she was able to hold and drink from a beaker with her affected left hand, for the first time. Her speech has been a little affected but she has still been able to talk to friends on the phone, who have no problems understanding her.
It is very much a rollercoaster ride, and can feel as if you are moving three steps forward...and then two steps back. She can be very, very anxious at times, very fatigued (which I've learnt is common after stroke) and very emotional. That is why it has helped so much to read up on the various effects and symptoms a stroke can bring, and to understand that it is all normal. It can make it just that little bit easier to cope with.
Please remember as well, that the shock of what has happened will take some time to come out, and can affect you physically, mentally and emotionally. So it is important that you try to look after yourself as best you can. This is something we are working on...but could be better at. It's very easy to find you've skipped lunch a couple of days in a row, or not had dinner until 10pm !
Your comments and insight in these dark days are very much appreciated
I have learned over the years preparation is key - and listening to yours and other comments will hopefully stand me in good stead - I am bracing myself for the challenges ahead!
I am very grateful for people's insight who have already been down this horrid path and explained how even at its darkest moment(which is where I am currently are) - there is some light at the end of the tunnel, but only after a lot of hard work and setbacks.
I dearly wished this had never happened - but I need to deal with it and make the most of the situation
I would like to update eveyone who has spared the time to view my previous message posted last week.
It is now a week since my wife Jan (54) suferred a severe bleed on the brain.
She spent several days in ICU and has now been transferred to the Stroke Ward.
As per my previous post - local lockdown means I get to see & talk to Jan via 'virtual visits'.
The first couple of visits were heartbraking - she did not recognise me and was unable to speak - however in the last couple of days she seems to recognise me as the days progress and we are able to have basic interaction - mainly Yes & No to my questions,Is this good progress after a week?
Jan is still Nil By Mouth and all food/medicine is administered via a tube inserted in her throat.She has been assesed but at he moment is unable to swallow - is this normal and will this basic function return?
I notice they still supply a small amount of oxygen to her - I am told this is all normal? Has anyone any experience of this and why ?
I have learned via the advice of this forum to take 'baby steps' with Jans progress and measure each sucess as a positive (i.e. recognition,communication) - the good news is that every time we talk she tells me how bored she is!
I will worry about the future (caring,downsizing etc,etc..) later on - each day is to be appreciated as I nearly lost her a week ago!
It's good news she now recognises you, can communicate with you, knows where she is and that she is 'bored'. They will be asking her constantly if she knows where she is. They did me - it's a good sign if she does. As you say 'baby steps' but positive ones in the right direction. I would think they will probably give her oxygen to keep her comfortable whilst the tube is still in place but I've no experience of this I'm afraid but maybe someone else on here may know..? Definitely put the worry about downsizing etc on the back burner for now as you say and take each day as it comes. Hopefully after next week, our area lockdown will finish and you can visit her. Fingers crossed.Take care.
I hope your wife is continuing to progress. Cannot imagine how hard it must be especially just now. I suffered a subarachnoid haemorrhage last April and as others have said everything is baby steps. I did feel quite anxious once home even though I had never been an anxious person previously but by taking time that did recede slowly. One thing I would say is once I was home my poor husband had a habit of telling me how lucky I had been to survive but because my life was not the same as before I didn't feel lucky as all I wanted was to have my old life back . Best wishes to you both x
Hi Graham - just to echo what others have already said really. Progress may seem slow just now, but I kept a simple diary when my husband had his stroke, in August 2017. At first nothing seemed to happen, but gradually I was recording more and more activity - just noting anything that was happening, and I have returned to that diary on numerous occasions, to reassure myself that he was making progress. Through this forum, I also learned that sometimes it might seem as though nothing new is happening, instead of worrying, I came to realise that the brain needs time to rewire and repair - it can only do this when the person has sufficient rest, and even though externally you might not see any changes, internally the brain is working it's way around the problems!! You can only go day-by-day, and I would suggest that you don't make any drastic changes just yet. In my head I started making all kinds of plans, and as it turned out, I needn't have bothered! I know that stroke is different for everyone, but you will see progress, your support and understanding for Jan will be invaluable. Support for yourself will definitely come from the wonderful people on this site - so never be afraid to ask anything, share anything or just have a rant if necessary - no-one judges here!!!
Very best wishes to you both, keep posting as we all love to hear how stroke survivors are doing.
you are doing the right things.
I have seen feeding tubes and oxygen on fellow patients but not experienced them myself.
What i have experienced is being unable to communicate, and I took three to six months to overcome the worst of that difficulty. As there was weekly improvements, this was not a big deal. Initially, when people spoke to me it was a blast of unwelcome noise. I had to chop that noise into words, then decipher what those words meant, then work out my reply , assemble my words in to order and finally convince my tongue and mouth to speak. I very soon asked my wife to not chat, so she read a book, went for coffee etc. i soon worked out that the staff spoke concisely and slowly. Then they kept quiet whilst i attempted my reply.
Visiting time was just a horrid nightmare. All those visitors chatting and i wanted them to stop.
I think that my brain was so busy rewiring itself that it priortized what matters. So speech didnt matter.My physical recovery was miraculous the aphasia wasnt that bad and the cognitive stuff dragged on for three years.
Every stroke is different. We share a number of issues.
So i venture to suggest that your wife is doing ok on the speech front. I believe the medical term is aphasia. In fact she is doing better than I did. And i dont think the stroke that got me was too bad.
It's often said that all strokes are different and all recoveries are different too. This is largely because it depends upon the location of the clot or bleed in the brain and the extent of the brain injury. I too had a stroke a relatively young age (I was 43) and can relate to much of this.
If Jan is able to speak "Yes" and "No" rather than simply nodding or shaking her head, that is excellent progress.
I was Nil by mouth for three to four weeks until I was assessed as being ready for thickened foods and drinks. From then on, my recovery was fairly rapid, I was allowed normal foods after another four weeks and now, ten years' later, I only have issues with foods such as shelled peanuts, where the fine red skins of the peanut are harder to swallow. I know at least one stroke survivor who did not recover his swallow and is instead fed via a canister and tube going from his hip into his stomach. He is otherwise very able and it would be hard to identify him as someone who suffered a stroke.
I was given oxygen at various stages but it was always because of a stated reason - I had a pulmonary embolism at one point and developed pneumonia from trying to drink water while still Nil by mouth.
You sound to have a positive outlook which will help you through these darker days. Stroke, fortunately, is a progressive condition where survivors are generally always recovering, as opposed to conditions such as Multiple Sclerosis or Dementia where those with the condition worsen.
I too was in generally good health at the time of my stroke (I thought), and have been broadly healthy in the ten years following it. It is difficult for you now only being able to virtually visit but that will not be the case forever and in time you will see Jan slowly return to her old self. As you've already noted, she could be dead now. Younger survivors do have generally better recoveries. With commitment and good support she can make an excellent recovery.