Introduction

Hello all. I’m new here. My wife and I are caring for my mother who we live with. She has just been discharged from hospital following a massive stroke on Monday.

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Hi Everyone I’m new to this forum. I had my stroke 6 month’s ago. My name is Moira and I live in Edinburgh. My stroke affected my left side. It took me a while to get use to the fact that I’d had a stroke. I try and stay as positive as possible but I do have my down moments too. :grin:. I’m making quite good progress but still have a long way to go…

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Hi @Ingo66 ,

Thank you for the welcome.

Moira :grin:

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Hi Russ- I’m sure you’ll have many questions in the weeks to come, and your mother will too. There is a lot of experience represented here. Hope we’ll be able to help with ideas, questions, etc. :heart:Jeanne

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Hi @Russ23 and @moandreason and a warm welcome to you both. There’s a fountain of knowledge and experience to be found here from many fellow stroke survivors and carers for you both to tap into any time :smile:

@Russ23, just a few of the basic little tips about your mum when she comes home to reduce your need to worry. She will be tired a lot for many months, brain recovery does take a lot out of you, so don’t expect too much of her. Try not to over phase her with multiple questions or choices, keep it simple and keep it short. Her brain just won’t cope well to being bombarded so you don’t need to fuss too much with he, just keep it calm :wink:

Her appetite might not be up to much either, I lost over 2st I couldn’t really afford to be losing :roll_eyes: It wouldn’t hurt to start her on Complan or Meritene.
They are a nutritional supplement, in the form of shakes and they’re designed to provide extra energy and nutrients to the body. Even though she’ll be sleeping a lot and not doing much, her body is still burning up an awful lot of energy and nutrients in the healing process, so they need replenishing. These shakes are a good way of getting them into her and keeping her topped up. Hopefully her appetite should return over time.

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Welcome @Russ23 & @moandreason

I kind of forgot to sleep last night and have not completely made up for that today. That is me asking you to excuse my slow brain. It will come back tomorrow, but for today there is no advice other than sleep is very important. ; ) I just wanted to say hello and welcome. I am so glad you are looking for ways to help mom already. That is fantastic! Thoughtful and kind, because some of the things you run across would likely not occur to you even with all that love. We are all different, but many things are commonalities…like the fatigue, the frustrations, and often, the loneliness. I have found everyone here likes to help by offering their own experiences which give you some of the right questions to ask the healthcare workers and your mom, to ensure she gets the best care possible, tailored to her situation and preferences. Hugs to mom and to you both. Her life has likely been changed, and also the two of you. Some of the changes will even be for the better, but at this early stage, you likely won’t be seeing that for a while yet. There is a carer’s group here as well as survivor group. I wish I could see more of the carer group just for tips on problems my daughter might be having by helping care for me. I would certainly like to make her life easier in any way I can. I am certain most of us feel that way. Best wishes in navigating this new territory, and for a great recovery.

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Hello @Russ23 and wife
I wanted to add my welcome to those above & to endorse everything they said.
You have landed amongst the crowd of people who do actually understand what’s going on and much more importantly have the big picture in all its complexity. That’s in contrast to medical staff who often have a piece of a picture with great detail but don’t understand the whole .

A piece of That picture, I think is that carers are often overlooked. I suggest you should reach out to all the support services you can find and use them. You’ve got a long journey with many things you won’t have thought of yet. Also it will add a struggle to all things - starting & ending with relationship and expanding outwards & inwards for all concerned

Your mum would probably endorse some of the points in the following list if she knew of it and was able to. It’s here
https://forum.mystrokeguide.com/t/40-things-to-know-what-would-you-underline-add-or-delete/35110?u=simoninedinburgh

You probably have a lot of anxiety about the future at the moment. One thing that might be a source of hope is the info that she has been discharged after a week and “massive stroke” sound contradictory and short stay would suggest a stroke with less impacts. Of course I’m not medically trained and know nothing of your mother’s circumstances. Many of us here didn’t have a massive stroke and we’re in hospital for a month or more - sometimes many months, those without an extended stay generally got off lighter (?)

This forum is full of people’s journeys, specific questions with answers, plus discussions on different topics like eating sleeping toileting/grooming, noise and bright lights, medication and a myriad other things that you can find with magnifying glass at the top of the screen. This community is also full of people who are here when you want to ask, share, celebrate, clarify, rant or pretty much anything else .

I think and I’m not sure this is universal but the only certainty(?) is that it’s a long road. There will be progress every month if there is effort behind making that progress. The effort can be very hard to bring to focus and as the 40 points I shared above start to highlight need to be nurtured not forced

I wish you good luck on your journey. Continue to read and share
Ciao
Simon

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Hello @moandreason
As others have already said welcome. And as I just said in more detail - so won’t repeat here - in my previous post in this thread to Russ 23 you’ve arrived in a place that will add a great deal of support to your recovery journey if you make use of it.

Where abouts in Edinburgh are you? I’m in Danderhall! If you haven’t already discovered them there are various face-to-face and zoom online meetings. There’s one in collington run by Bob, theres one in gilmerton run by Tom there’s another in gilmanton which is chest heart and stroke Scotland & I dare say there are others. The online one’s I posted about elsewhere you can find if you search

All the opportunities to talk, either face to face, online, or here in text may help you with the down moments(?) there are also mindfulness apps and meditation etc from neuropsych support, from YouTube and from lots of places on the internet too to be used as well or instead

Ciao Simon

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Hello Moira, I’m Val and live in North East just down the map from you in lovely Edinburgh. A year ago I had multi TIAs and 2 brain bleeds. I have found this group sooooo helpful even though I sometimes think I am just having a moan. Someone will always help you here x. Val

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Thanks so much for this Simon. This is so helpful. My wife and I are aware that we have a lot to learn about caring for mom and this forum is providing fantastic support.

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Hi Simon, thank you for the lovely welcome.
I live in Murieston between Dalry & Gorgie. I haven’t seen the various on line, zoom calls etc but I will have a lookout for them.
I signed up for Different Strokes on Facebook a few months ago. It has been really useful too but I think the majority of the people on there are in England. It does seem to be quite difficult to connect with people here in Edinburgh eventhough I know there are lots of us!!
I go to an upper limb class twice a week at Longstone and I’ve meet people there. I am lucky to have a great group of friends but they obviously don’t know exactly what it is like being a stroke survivor!!
Moira :grin:

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Hi Val, lovely to connect with you. I’m sure I will find this group really useful. I’m very interested in meeting fellow stroke survivors!! I do have a great group of friends but sometimes they just don’t get it. Obviously not their fault and they do try very hard to include me and help out with shopping etc.

Chat again soon.

Moira :grin:

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Croeso to the forum @moandreason, I hope you find interacting on the forum helpful and feel free to post your concerns should you need support. We are all here to share and care.

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Hi @moandreason
Ahh so you’re more or less on the same side of town as me but your postcode qualifies you for long stone and mine is about 50 yards outside the boundary.

Between a lady called Louise and I we run an online cafe on Thursdays see here
To which Bob comes to the morning cafe pretty regularly & Tom sometimes comes to the afternoon but he’s away this month - he is taking it quietly for the whole month.¡ He’s one of the people featured in When The Words Away Went - YouTube

DS is a good community too :slight_smile: made by people like Mel Anita Alistair, Charlotte, Maggie, et al and Rosh RIP. The fact that it’s on Facebook and the policy about posting anything done by another organisation that would be useful to stroke survivors but might detract from the funds raising makes it marginally less useful in my view but I do find the discussion there has empathetic as here. Facebook’s algorithms to generate churn rather than build a repository of facts is a limiting factor. I know Sheeilagh in the office and Austin’s guidance the thinking of adding a platform to how they deliver services. It’s a pinned poll at the start of the group

:slight_smile:

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@Russ23 @moandreason i’m a little late to tye party but I’d also like to add my welcome & i hope you find this a useful place to be.

I echo what others have said so won’t repeat it but wishing you all the best & look forward to hearing more from you.

Ann x

Thanks to everyone who has welcomed me. Following on from my initial post, the hospital called to tell me that mom did have an MRI, contrary to what I was told previously. The MRI revealed that she’s had multiple strokes over the past few months, but this is by far the worst episode. She’s also had micro hemorrhaging and due to this they have stopped her taking the blood thinning medication. At present she is very poorly, hardly waking at all and struggling to communicate.

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@Russ23 sounds like your mum has been through a lot. After all that she’ll be exhausted & not surprising that she’s poorly. She’ll need lots of rest right now to give her brain chance to start its repair work. I know when I had my stroke the shortest conversation completely wore me out so can only imagine how difficult that must be for your mum.

Sounds like she has some good support in you & your wife. Hopefully she’ll start to improve over the next few weeks.

Sending my very best wishes.

Ann x
Ann x

Thank you Ann for the lovely welcome to the group. :blush:

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Hi Simon, oh that’s a shame re Longstone. I really love going to my classes there and the physios, ot’s and care people are all very friendly and helpful. In fact they are opening up a cafe, starts in Sep for anyone in the community to drop in which should be good.
The online cafe sounds like a great idea. I would be interested in it but atm I can’t do Thursday as Im at Longstone but that wont be forever. Ive replied to your comment on the DS Facebook page. I have posted comments to all the people you mentioned however I never got to know Roshan. He sounded like he was full of fun and I know he will be sadly missed. Ok must go and make something to eat. Bfn :blush:

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Hi DeAnn, thanks for the lovely welcome to the group. Im sure I will find it very useful and a good place to ask questions etc. Moira :blush:

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