3 YR ANNIVERSARY REFLECTION. (Typed by wifey - Christine)

3 YR ANNIVERSARY REFLECTION. (Typed by wifey – Christine. David struggles with typing.)

Age 64. Cerebellum stroke.

NO improvement and if anything get more tired more quickly. Struggle to get beyond 10am before early food and back to bed. Can look at tablet for a couple of hours and then nap for 1–2 hrs. Small bounce back after sleep, but batteries best first thing. Always awake early – as soon as I’m awake my brain starts to tick over and I can feel the energy start to drain. Have always been prone to over-thinking and this is worse – anxiety about the smallest thing can be off the scale. Have tried Mindfulness, but doesn’t work for me. Feel worse when I am not doing anything, as tend to dwell. Find accepting extremely difficult. Little non-stressful projects help. Can read Kindle for short periods and am OK watching TV – only do this in the evening. Distracting my brain seems best for me. Struggle with concentration and can only cope with one question at a time – I am slow to respond as my processing takes a lot longer. Was always quite a solitary person, but find stroke isolating – closed into small world. Have always enjoyed chatting to people and miss that. Still manage a chat to our neighbours which I enjoy, but only short bursts.

Talking an issue. Find notes best – gives me time to think through first. Can manage about 20 mins on the phone with my kids or sisters and then wiped out. If kids and/or grandkids come to visit will make every effort to keep going – usually a couple of hours and then quick food and bed (they are about 1½ hours away). Eating can be an effort if tired and best without talking. Can get own boiled or scrambled eggs for breakfast and then C organises all other food. She cuts up food as tend to eat one-handed – tried to use both hands initially, but left side too weak to raise fork for very long.

Can’t do without grab rails in en-suite and bedroom. Can get around the house myself until tiredness kicks in and then need stick. Have swapped a cheaper walker with seat for an ultra-light rollator with seat – useful for walking short distances outside. New one is much more expensive and more disabled friendly as supports you all round rather than the previous one which was all in front and potentially running away with me. Waiting for delivery of new chunkier Lugge scooter – hopefully more stable than smaller one that used to tip me off! Will go in boot with seats dropped forward – allows outings either to the river at Worcester or the local country park – the latter being the favourite for good bacon sandwiches! Cannot manage car journeys longer than 20-30 mins as can feel giddy and start to feel sick. Once out can only manage about an hour and then home to bed.

Hoping to sort out a lower non-slip shower tray soon – fixed seat, grab rails etc. Did try to find local plumber, but wanted to do some myself (builder in previous life) and hard to work this in with
someone else’s schedule. Will take a massive effort (and huge amount of help from me – C!), but will get there. Cannot exercise, but pottering in the workshop and showering is my equivalent of a workout. Have invested in lighter, smaller tools – allows me to still do bits of work, so feel that I can still achieve things – my hobby now.

Struggle to turn head sideways. Also can’t lift head without discomfort and can’t look or bend down without feeling dizzy and sicky. Have problem with painful shoulder on weak side and find supporting it on a yoga bolster when sitting is useful (these are filled with grains of some kind and are firmer than a pillow.) Have more recently started to get pain spasms up spine – can take breath away. When I start to shut down it affects my whole ability to move, talk, eat. Can’t cope with too many people, noise, busy places and when driving C has to go fairly slow and steady. Sunglasses help a bit.

THINGS I AM GRATEFUL FOR

Wife – Christine. (Gorgeous, kind, helpful :-)) Bungalow – (we had already decided we didn’t want to move again and knees were already getting creaky – C.) Morning coffee in the folly I built in our lovely garden – fresh air always seems to help and will go out there even in cold weather. (He sits so still the birds and squirrels come quite close to peer at him - C.) PIP – bit of extra cash is helpful – can be challenging process. Automatic sensor lights around the house – very useful for getting up in the night. Beard! - no more shaving though trimming can wear me out. Christine trims hair and beard when gets a bit out of hand. Stroke site is great and enjoy social side. Tablet works well for me – John Lewis refunded the VAT when I told them I need it for communicating. They didn’t quibble and needed no forms – worth asking.

POSSIBLE ADVICE?

Do not (like me) compare yourself to others – easier said than done. Can be depressing hoping for improvements that have not come. Try not to look back at things you used to be able to do and focus on what you can still do. I am still here – not bed-bound, can feed myself, shower and wash self and still do small projects. Can still enjoy my smaller world and spoilt silly by wifey. :slight_smile:

Christine footnote:-

David is getting better at asking for help. Occasionally he gets stuck on his shower stool and I have to help him out of the shower, dry him and help him dress – this is not often as he would rather struggle for ages himself rather than ask me – sigh… I am working on the endless apologies for asking for things.

He is not allowed to call himself a burden and when he says that he is laying so much stuff on me, I won’t have it, as I don’t feel like that at all. I now take the bins out and clear gutters once a year! I now wash the car, but not very often. And I now clean the outside of the windows which he used to do – again not very often. So I’m not actually doing a huge amount more. Pre-stroke he was so involved in his own world that he never noticed what I was up to and now realises how busy us girls are!

He used to worry that he was stopping me from doing things and going places. I reminded him that in the last couple of years no-one was going anywhere. And actually I no longer feel the need to be going out and doing. I am quite content with once a week shopping for food and the occasional trip to the garden centre. Pottering in the garden is always therapeutic and June and July it is always a joy to see all my roses and clematis out.

We create our lives by the way we think and the gift in our particular situation is that every day I have the opportunity to be loving and kind which is good for my soul. Not that he doesn’t still do my head in from time to time, but ‘twas ever thus!

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@David3 oh David thank you for sharing this with us all. I recognise a few of me in what you are saying. Christine thank you so much for sharing this too. You are a star. Life is short and looking back doesn’t help. Best to look forward and make the best we all can very wise words David. Thank you again. Kind regards Loraine

David and Christine - and everyone else - can you advise another Stroke Survivor Spouse on what I can do to best help my Stroke Survivor, please

My husband had a mega stroke in November 2020. He was in hospital for 7 months and was discharged paralysed down right side so cannot walk, or even stand, nor use his right (dominant) hand, is incontinent , and has largely indecipherable speech. His brain power is definitely reduced (but not sure by how much as speech so limited). He has also had 8 seizures

Thanks to having live in carers he has been home for a year, which is wonderful. He spends a lot of time listening to the radio (though not sure how much he takes in) and sleeping. Our main pleasures are having friends for morning coffee and going out in his wheel chair either to walk along the sea front or occasionally by bus into the city centre to visit an art gallery/museum.
How can I inspire him to improve? It is hard work to get him to practice any speech therapy or do any exercises. Fatigue is a major issue. Since I now do all the household tasks and admin (much of it new to me) and negotiate with health professionals etc I get too tired to take on more - but feel guilty by not doing so. I need to target my energy.
What do you think would most help him?

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Hi Carefulscot have you got a stroke support group you could attend ? The one I attend as a Stroke Survivor has meetings for carers now and again for them to chat with other carers. Hope you have support and make sure you look after yourself.

Thank you both for sharing your story so honestly. It must be very difficult to have had this experience at 61. Mine happened at 72, six years after finishing work. It is interesting that we always regret being unable to do things that we had probably stopped doing anyway. I kept regretting being unable to walk up hills until Ibremember that the last time my partner and I went hill walking we found it such a struggle that we said, that’s it and that was some years before my stroke.

I am glad you are both able to enjoy a few things whilst coping with all the disadvantages, your joint posts are a massive insight into the stroke experience and it’s after effects. Thank you both.

Hello PDS - thank you for the reminder to look for Stroke support groups - either for husband or myself. Last time I asked I was told they hadn’t started up yet.

Good evening @David3 and Christine. Thank you for posting this. Alot resonates. I appreciate your straight forwardness and seeing things for what they are. I am coming up for my first year in a couple of weeks so have also been reflecting. I suspect few of us are where we expected to be or dared to hope we would be but it is what it is and we can only plug away, and see reasons to still put a smile on not because we should but because we want to. All the best to both of you, Julia x

I’m right side paralysed with a little use returned. I now have to try to do everything with one left hand, so not natural.
. . .but !!
I bought a cheap refurbished laptop online for less than £150.
This means I can now use a keyboard to communicate, in this Forum for example.
I can take as long as I need to construct words, sentences and compose an intelligible message. It is great to be able to communicate and this is an important part of my life.
I can also do the other stuff having a PC allows one to do. I can browse, do a search, keep a diary, make notes and even take part in a Zoom session.
I would recommend such a device to anyone who has experienced stroke. In fact I would view it as a necessity rather than an accessory.

Good to hear from you @David3 (& Christine) . You (Christine) sound like a fantastic person, as is my wife. I get where your coming from when you always apologise for asking for help. As with my wife she says she would rather have me around to help than not have me around.

It can be hugely frustrating not being able to do things you could before, but probably doubly so for you as an ex builder. I fixed a hose reel on the wall today and needed help marking up the hole points but eventually did it. Something so simple completely exhausted me but it felt like an achievement.

I’m so sorry your progress has not been great but fingers crossed it will still continue.
It must be frustrating hearing from others that are in a better place (& I’m sorry if I am one of them).
It is great to chat to you on here.
Keep improving.
Mark

Loshy , thanks. Hopefully in your sunny garden. David.

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Hi ,no advice. But it really can be sooo draining. David.

Hi , They are back ! Scampering in loft. Keep Screwfix in £ with rat poison. Can’t understand the appeal of loft ? David.

Hi John, Think you have a special partner there ! Yes even me at 61 , struggled up Malvern Hills. Good, that I can at least see them, from garden. Not so good though for tv & mobile signal. :joy: . David.

Hi Julia, ( I like, a proper name & photo. ) Anniversaries strange! Celebrate or not ? Good speaking David.

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Hi Bobbi , yes would be lost without. Use Samsung tablet, not good with a keyboard & can use various disabled settings. Shopping now easy ! Poss nightmare, getting to shop , try on shirt , noise, people, questions, colour ? 5 min for brain to kick in :grin: . Home delivery, returns, favourite. Though mostly wear trackies , easy on /off . Good speaking David.

Mark , Great to hear your improvement. Like you , Christine would help with similar job. 2 hours.? Back to bed , but achievement & exercise. Good speaking David.

Thank you David. I’m not sure I could cope otherwise, despite the improvements made. Recovery from stroke is a long journey

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. . . but what else is there to do ? :stuck_out_tongue:

. . . so true, so important :smiley:

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Hi @CarefulScot ,

It seems to me your husband is getting a lot of help and doing very well considering the severity of the stroke he had. You are already doing a lot and if the constraining factor is fatigue, which as I understand is a common issue with Stroke Survivors then all you can do is perhaps get some physio therapy to build up muscles and strength.

We are doing similar with Mum to try and improve her strength so she she can remain active for longer. Her condition is similar to your husbands but she is much older - early 90s.

Not sure if it might be helpful, but we were were told Stroke Survivors are prone to getting seizure fits. Mum when she first came home had a few seizures and because of her condition she was taken to hospital for further checks. They told us it is common and they recommended anti-epileptic medication. When we saw the amount of medication and read the possible side effects we decided not to use it.

This was based on the information we were given which was they are preventative but do not guarantee you will not get seizures. So on balance the risk of side effects was too high.

Why I mention this is because were told that Mum’s sodium levels had dropped and this was likely to be a contributory factor as the electrolytes are used to send signals in the brain or something like that. So we then added salt to Mum’s diet in advice from the HEN dietician and stopped the blood pressure medication on advice from hospital consultant.

So in summary, with stopping the blood pressure reducing medication (amlodipine) and adding (a third of a teaspoon of salt in Mum’s glass of water) this has stopped Mum having any further seizures.
Mum’s last seizure was in September 2020, so that’s not that far off 2 years. We also increased her physical activity. Btw she is 92 years old and most professionals don’t want to “help” her because she is considered to fragile and at high risk from procedures. Almost every consultation we have seems to result in least resistance path i.e. we are almost always told there is not much more can be done for her and it is better to carry on as you are etc. We typically end up fighting for the help we need and which would be available to Mum is she was 20/30 years younger. Ageism is rife if you are a Stroke Survivor. But we are doing our best to get this highlighted by making complaints where we feel we have been discriminated against etc.

For us, this seems to have worked, but you might want to check with your medical advisors if this might help your husband from having any further seizures.

On a personal front @CarefulScot, you should not feel guilty about not taking on more than you can handle. You are probably doing more than most already and often carers like you go unnoticed. You should join a Carers support group if you are not already a member. You don’t want to burn yourself out as you won’t be any use to your husband if you neglect yourself.

Best wishes,

ManjiB.

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@ManjiB hi. I just want to say thanks for sharing glad your mum is still fighting the symptoms. Your a Son best wishes Loraine

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