I feel really out of my depth

Hello, my name is Jo. I joined this group as my partner Paul has recently had a stroke. His initial diagnosis was endocarditis, but the infection in his heart went to his brain and ontop of this he has had a stroke. He has use of his limbs and doesnt appear to have any affect to his speech, but his recent short term memory is affected, and he also appears to be seeing things that aren't there. Is this a common effect of a stroke? He's a 59 year old ex firefighter who has never been ill in the 14 years we've been together so im really scared and feel out of my depth on this, but im commited to doing my very best for him. We are currently in Spain, so the language barrier is making it difficult to get any real answers as to if the hallucinations are a common thing. Thanks for listening. Don't think I've ever been this scared.

Sorry to hear about all your problems, there are so many ways in which a stroke can affect the person, short term memory is one of them, not too sure about the hallucinations, but I am sure someone on this site will be able to answer that for you. It must be so hard for you being in Spain, do you have anyone out there that can help and  support you? I know it is difficult, but try not to get too scared, although in your situation I know that is difficult, but things will get better, it might not seem so at the moment but they will improve. Please feel free to post anytime you feel down and at a loss. We all know how difficult it is for the Stroke Survivor, but I think people forget how hard it is for the Partners as well, they bear the brunt of a lot of things. Try to keep your chin up, am thinking of you.

Jane.

Hello Jo, sorry to read about the stroke Paul has had and lm sure he is feeling very confused by the speed it has occurred. I wanted to reassure you that his short term memory loss will improve but it takes a long time. I had a stroke 3 years ago in February and also developed short term memory loss. I also have strange pains in my hands which I'm told are caused by the stroke and have made me quite clumsy at times and appears to happen more often now for some reason. 
The memory loss has greatly improved but I still have trouble retaining some things / conversations  but it's usually when I'm not paying attention fully and I think I've just got used to it. I write things down that I need to remember- simple but it helps. I was an avid reader before the stroke and have started reading again ( newspapers and books). I do jigsaw puzzles and games on my iPad which I think has helped me to think and to concentrate.
I don't know much about seeing things that aren't there but in the early days following the stroke when I looked in a mirror I sometimes felt that I looked different somehow, usually this happened when I was tired and couldn't think straight. Encourage Paul to rest as much as he can in these early days and to try to sleep well at night, he doesn't want to overdo things too soon in his recovery because he'll make his short term memory worse.

I presume Paul is on medication now which should prevent another stroke. This should reassure you both and in time you'll both feel a little more safe. 
 

Best wishes to you both

Ann

 

Hello Jo

I just saw your post and wanted to say hallucinations / seeing things after a stroke is something that sometimes happens. My lovely husband had a Carotid Artery Dissection that lead to a massive stroke so he needed life saving surgery -thrombectomy followed by a Craniectomy the next day. When he came round after surgery over the following days he told me there were various animals on the ward eg dogs & kangaroos. He was also convinced that the Liverpool football team had been in to see him in the middle of the night!

The Stroke nurse told me not to worry and this can happen in the early weeks/months after Stroke. It did go on for a few weeks but gradually stopped.

I really feel for you especially with the language issue as I know how tough it is for you right now.
Use this forum and maybe contact the Stroke Association in the UK for additional support.

The best bit of advice I was given very early on was to take One Day At A Time - if you look too far ahead it is just so overwhelming for you right now. With ongoing Rehab and daily exercises you will be amazed at how the brain can relearn how to do things. 

Take care and keeping you in my prayers tonight

Clare

 

Hello Jo

being scared is something I think all of us have been through.  A stroke doesn't just affect the victim it affects the whole family.  When my husband had his stroke, it was as if someone had taken my life as I knew it away.  I knew nothing would ever be quite the same.  I was terrified.  Gradually bits and pieces of life come together again and you learn to make the best of it.  There is no instant quick fix, it is a very graduAl slow process.  A process that only a partner of a stroke survivor can truly understAnd.  It won't be easy and only you can decide what you can cope with and what you cannot.  All made doubly difficult with Covid on top.  You will need, and are entitled to, as much support as the stroke survivor.  I think I was in shock for a while but I was very lucky to have a supportive daughter and son, without whom I don't think I would have survived.  Neither of us are quite the same people we were before the stroke and I recently had a TIA of my own, luckily with no lasting effects but it has affected my health.  Now we are both survivors and carers and life has subtly changed again.  Keep posting your concerns. And issues, this is a very supportive group, they will help you.  Marylin

Hallucinations are not common, but do happen. I am one of the minority who got full blown hallucinations. Once i grasped what was happening, i loved the hallucinations. So i had pretty coloured ceilings and a great game of fathoming whos head was on whos body. The visions eased away. I also had horrific dreams and night terrors. They are now reasonable and "normal" for me.

Memory loss is more common. It took me ages to realize that some memory had been completely wiped. Mostly the year leading up to stroke. I keep a diary and have filled in the missing bits. Then we come to short term memory. For me, i would start to speak then not know where i was with what i wanted to say. Five years forward and i have overcome enough to have some quality of life.

We do not go back to pre stroke levels. We achieve a new normal. A phrase recently nicked to describe the pandemic.

To illustrate....i am an FCA. But i now can barely do my own tax return. So i started to volunteer to make coffee and wait on tables, at the local church hall. After many months i could do the task. Now i can manage a very small admin task. Perhaps five hours a month.

so dont be scared. Paul is starting a long journey to uncover the new Paul. He might be old enough to have old age dementia tacking on a few issues, but maybe not.

Recovery is likely to be substantial for, perhaps, two years then small changes for perhaps a further two years.

maybe Paul will be developing new abilities. Speaking Spanish ? Or poetry or music or art. 
 

generally the brainwill close down functions whilst it self repairs. Whilst this happens colossal tiredness will occur. Dont fight it, you want the repairs done.

colin

 

Hi Jo, I didn't have hallucinations straight after my stroke, but did have a really vivid dream that I was being brought up Brith Queen Victoria's children. However, when I cam home Late at night I kept hearing conversations coming from downstairs. I did not mention this to my partner, but one night, foolishly, I went downstairs to look. There was no one there of course. You can, however, get really bad hallucinations if you have too much calcium in your blood. An old friend of mine had a really bad bout due to this.

Worth a chat to your gp perhaps?

Hi there Jane, 

Thank you so much for your reply. Unfortunately there is no one else here in Spain with us. Pauls two adult sons were coming to be with their Dad, but Covid hit the UK hard and Spain banned UK travellers so they cant get out here yet.

Paul is waiting for heart surgery here too. The endocarditis badly damaged a valve in his heart so he has to have it replaced and hes also on IV antibiotics for another 3 weeks to kill the endocarditis infection.

In Spain, even in hospital, it is the culture that family stay 24/7 with poorly loved ones. As I am the only family he has here, it is down to me to care for him. I am also incharge of his Physio. Im a chef, so Physio is not one of talents, but Im doing my best. 

Hopefully after his heart op, after he his built up a bit of strength, we will be coming back to the UK and we will have a little support from family and various organisations in the UK.

Thank you so much for taking the time to reply to me, and I hope you are keeping well.

Warmest regards, Jo.x

Hi Colin,

Thank you for replying to me. Your experience sounds very similar to what Paul is explaining to me. He also is suffering from horrific dreams too.

Some days he seems to be doing great and I see glimses of the "old Paul", other days he struggles, but I understand that is normal at this stage. Whatever he needs, I will make sure he gets it, and will help the "new Paul".

I really do appreciate you taking the time to reply to me and I hope you are doing well.

Kindest Regards,

Jo.x

Hi Jo. I don't know if this helps but I have had psychoses as well as having had a stroke. A psychosis is in the brain and is like a waking dream. You can experience some pretty bizarre things. I think it is all part and parcel of what the brain can get up to when it is damaged. Best wishes Hilary

Hi Jo, you are really going' through the mill aren't you!!' This is all so difficult for you  (as well as Paul ). Lets hope after the Op, which doen,t take too long, you can get back to England and have more support. You will get great support from The Stroke Association and varius other networks, do they not have anything like that in Spain?

Try to stay positive ( I know that is difficult at this time ) and anytime you want to chat we are all here for you.

Take care, and look after yourself as well as Paul.

Jane.

It is important for us SS to get good sleep. The nightmares make this harder, but i would urge Paul to work hard at getting a level of regular sleep. It took me months to achieve, but has paid good dividends.

i also get horrific dreams that carry on once i wake up. I call these night terrors. They eased away and now I dont get them.

yes i was in a foul mood when the night terrors were plagueing me.

In May i had an AVR (aortic valve replacement) and it reduced my fatigue for a while. I dont think this was in any way related to stroke. But it certainly took my mind off stroke recovery.

Stroke recovery does indeed feature a good day followed by a bad one. I keep a diary and by reading the diary it shows me that recovery was happening, but so slow it was hard to notice.

i took yoga classes, specific yoga for disabled people, eg low level stuff.

it was magic. Helped me so much. i did have a very good yogi.

do ask anything. We are are here to support.

say hello to Paul from me

Colin
 

 

 

 

Hi Jo,

Sorry to hear about your partner's stroke. I had a subarachnoid hemorrhage (burst aneurysm) in April 2019, I did have hallucinations, I apparently told my husband that there was a monkey in my room - it was the blood pressure monitor and stand, I told my family I wanted to watch TV -it was the monitor screen! They just went along with it at the time although I have no recollection of any of these conversations. I hope Paul is feeling a lot better soon, good luck with his recovery.

Katy x