Mum had a stroke - how to deal with the unknown

Hi,

I thought I would try this out to see if anyone is able to signpost me useful resources that might make me and my family feel a bit less lost as we navigate the early days of my mums recovery post stroke.

Mum (66) had a left-sided ischemic stroke one week ago and is in hospital. Currently she has no movement in her right arm or leg. Her speech and cognition are pretty good - she seems a bit confused/jumbled occasionally but this could be linked to fatigue. She is having problems with swallowing and has very little appetite so is not eating much. She has also developed a bit of a cough which she says is putting her off eating and drinking. We are worried about her nutrition.

Between us my dad and I visit every day. One thing (amongst many other things) that we are struggling with is not knowing what timeline to expect or how to know if she is making good progress. I know it would be different for everyone but is there any guidance we can get on this? Being a typically stretched NHS hospital, we get very limited time to speak to the therapists or consultants (although when we have spoken with them they have been very helpful). There have been small positives like she can push downwards with her leg during physio.

We are also considering private rehab but feel that the right time for this would be after she is signed off as medically fit for discharge - does anyone have any views or advice on this?

Thank you!

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Hi @Kiwimama & welcome to the community. Sorry to hear with your mum’s stroke. I hope that you find the community a useful place to be and that you get some advice and support that will help you. As you have already mentioned stroke recovery is different for everybody and depends greatly on what has been affected in the first place and how determine the individual is to recover and how hard they work towards that recovery. One thing most of us do find though is that recovery takes longer than we would hope it would.

I foundmy stroke affected my appetite and as a consequence I lost a significant amount of weight. If at all possible you need to try and get your mum to eat better. failing that try adding some supplements into her diet for example complan or ensure Plus. You could also try adding things like Marvel milk powder into her drinks to give her those extra calories that she might need.

The rehabilitation offered after someone is discharged from hospital can vary depending on your Hospital trust and a lot of us find that it is a bit of a postcode lottery. Going private is an option if it is something that you can afford but you need to make sure you get the right type of physio for someone who has had a stroke.

You could try calling the stroke Association helpline 0303 3033 100 for advice on what to expect and where you can go to get additional support. They also have many leaflets that might be worth you having a read of.

https://www.stroke.org.uk/our-publications

Others will be along to offer their advice & suggestions soon.

Best wishes

Ann

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You are right that fatigue is a consideration. Your mother has suffered a major trauma which is a huge shock to her system. This is also a shock to you and your father. No one can tell you how long recovery will take. If you do get time with the therapists ask if there is anything you can do to help . Time with therapists is limited so it may help if you can repeat the exercises.

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Thank you for your responses.

We will keep exploring options with mum for nutritional food that she is more comfortable eating in this early stage. She thought the dietician had said to her they want her to put on weight and was a bit upset by this as she has worked hard in recent years to maintain a healthy weight through diet and exercise. But I assume it is more likely that they just don’t want her to be losing weight.

“Longer than we’d hoped” is helpful to hear. We would all hope to have seen more progress by now but it’s a useful reminder that just because we haven’t seen too much yet doesn’t mean we won’t.

If anyone has any experience with swallowing issues and how to help build confidence with this that would be helpful to hear.

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Get yourself a copy of a book called Had a stroke? What now? by Tom Balchin. It’ll help understand what’s happened and what to expect.

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Just to be aware, the body very commonly loses minerals (electrolytes and trace elements) after a stroke. This is a recognized and significant clinical issue that can hinder recovery and lead to complications.

Neuroendocrine “Stress Response”:

  • The brain injury triggers a massive release of stress hormones (cortisol, catecholamines like adrenaline).
  • This hormonal surge directly increases the renal excretion of magnesium, potassium, zinc, and phosphate . It also disrupts calcium regulation.
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Hi @Kiwimama

Welcome to the community, I’m sorry to hear about your mums stroke. This will be a difficult time for all the family, so please make sure yourself and your dad are taking care of yourselves too during this time.

With regards to recovery time, as other have said it’s a frustrating thing that no one can really answer as all strokes are different and there are lots of different factors to consider with this.

It looks like you’ve already had some good advice and I would echo giving our helpline a call. They have a wealth of knowledge and can point you in the right direction for what should be happening with your mums care at this stage.

You’ve mentioned about swallowing issues, I’m sure there will be some of our members along soon to chat about this but in the meantime, we have lots of information on our website about stroke recovery, I’ve found some information on swallowing problems after a stroke which you may find helpful to have a read of.

Wishing your mum all the best with her recovery, I hope you’ll find this community helpful whilst you all navigate through this difficult time. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

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@Kiwimama I am a stroke survivor and stroke takes a long time to recover from, if you ever do, but you can always improve, but it is slow. Don’t expect miracles, take each day as it comes and embrace any progress. Sometimes you move forward and sometimes you takes steps back, its about keeping on going that’s important and it seems you mum has a lot of love around her from her family, so that is such s good strong point. I wish you well. Look at what Mum has achieved and build on that. Please do not look at what she cannot do yet.

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Hi @Kiwimama and welcome to the forum. So sorry to hear of your mum’s stroke, this is not the easiest time of you being on the outside looking in. I’ll be brutally honest with you here, it takes years and then some! But it can and can get a whole lot better over that time!

It’s just going to take a lot of patience from all of you, recovery requires a lot of rehabilitation and cannot be rushed no matter how hard we try to speed it up. We’ve all had to learn that lesson the hard way here. Fortunately your mum has a loving and supportive family to take this journey with her and that will be a boon for her :people_hugging:

I had swallowing issues and little appetite too, everything just tasted like carboard and I lost nearly 3stone I couldn’t afford to lose. She will be losing weight, muscle mass is shrinking due to her immobility and that lose will make her feel weaker and tire her out quicker. Hence the importance for getting her to eat well. Particularly high proteins because that is food for the brain, its nectar, vitally important to the brain’s recovery. So highly recommend @Mrs5K suggestion of using additional supplements in her diet for the first few months.

I coughed a spluttered a lot taking in food and drinks but just battled my own way through it in small bites and sips. Being in lockdown at the time and non-verbal as a result of the stroke it was tricky to get such issues across to anyone that could have helped at the time. But I was always well aware of the importance of eating healthy and what I needed to get better, or rather to avoid any other health issues or ailments as a result. And from what you say about your mum’s healthy regime I’d imagine she will soon start working harder to eat, it’s only been a week yet. And she may very well have misunderstood what the dietician was saying. And besides, we all know how vile hospital food is, I couldn’t wait to get home to get something descent inside me…even though it still tasted like carboard :zany_face: I think all that side of things gradually righted itself over the first year post stroke though. Patience, Persistence and Perseverance are the keys to all things in post stroke recovery :face_with_diagonal_mouth:

There are no miracles or quick fixes to strokes! The first 6mths is all about the healing/repair and mop up in the brain after the stroke, assessing the extent of the damage and getting what it can up and running again. And aside from the visible physical disabilities, all the things such as sensation or feeling, distorted taste and smell, struggle with balance, vision, speech, memory, attention span, emotion, etc, etc, etc, they can all be impacted in some way too. So it could take some weeks to even realise she even has any of those issues.

Just because you don’t see it, doesn’t mean she hasn’t done the equivalent of a full day’s hard graft. Because her brain has! It’s currently working double time without a break because it still has to maintain all current functionality too. It’s really working phenomenally hard even as she sleeps, time has no meaning for it at the moment. She could find she’s asleep most of the day and find herself awake all night. And that’s what the fatigue is about. And she will progress at her own pace set by her brain.

So even though rehabilitation is of vital importance from day one, it’s not going to be to the level or extent you might imagine. This can be measured in minutes, an hour at the most, because everything is quickly draining. Everything is rehabilitation/physio/therapy for her, just waking up and taking her meds can be draining, eating a meal, just laying there talking, it’s all a major exercise for her just now.

Nothing is linear and every day will be different and it doesn’t stop at the 6mth mark, it just slows down. It can be a bit of a rollercoaster ride at times, 2 steps forward, 1 step back. But progress is always being made, it’s just some of it you won’t necessarily notice because it’s all going on on the inside. And it takes years, not months, to recover what can be recovered.

So for the moment the brain is only running the most vital of emergency services while it does that mop up and repair. It just can’t cope well with lots of activity, people, talking, crowds, loud noise, for at least the next 6mths. I’m afraid it’s going to be a very simple, quiet life for the time being, depending on the extent of her stroke damage. All activities should be kept to minimum, small bites. Even just being a passenger is a car is fatiguing; that’s because just looking out the window the brain is taking in a lot of data to process.

I won’t lie, her old self and old life are gone! But this is a new chapter in the making. She had a stroke and lived to tell the tale and she has the rest of her life to live and celebrate :people_hugging:

I’m 63yrs and 5yrs post stroke. I can drive, I can drive people round the bend :face_with_hand_over_mouth: I attend fitness classes every day, I can garden, I can party (as exhausting as it can be), cook, clean and do pretty much everything I want to do. But I do have to pace myself! I can still get fatigued but I believe I manage it very well. And I can rabbit on and on here while I figure out how to stop long enough to give someone else a turn :sweat_smile: So I think I’ll shut up now :grin:

Lorraine

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Thank you so much. It is so helpful to hear from stroke survivors and especially heartening @EmeraldEyes to hear about your life post stroke.

Mum has done a little better with food today but was extremely tired. So important for us all to remember how hard her brain is working. I am starting to think we should maybe reduce our hospital visits to give her more time to rest. My dad thinks that a constant stream of visitors (only me, dad, my brother and a very close friend of hers so far) is the best thing for her to make sure she feels supported and can keep her morale up. But I worry now that we are keeping her from vital rest - I will try to get her perspective on this next time I visit.

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When I was in hospital after my stroke I wasn’t allowed visitors due to Covid restrictions. I was a bit miffed initially but it soon became apparent that I couldn’t have coped with many visitors as I found conversation exhausting. I would have liked some but not many and not for long probably. It may be worth considering reducing visitors but definitely check with your mum first. For some people those visits are a lifeline.

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As others have said, Mum’s brain has had a big trauma and is only in the early stages of dealing with it. The swallowing reflex is one of the most complex things the brain organises and, rightly so, something stoke teams and doctors look at managing. I haven’t read in detail the thread of messages but is Mum (and also you) getting and support with eating/drinking/swallowing?

One thing that I think is really important is that you and the family are looked after too. Strokes directly affect loved ones, family and friends as well and can be difficult to come to terms with. Remember none of you are alone in this, we’ve all had different “journeys” and want to support each other - plenty will have more direct experience of the things you are experiencing and will be happy to help as much a they can.

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Hello @Kiwimama - Welcome to the community which I am sure you will find very helpful.

I note you have had some excellent advice already and I expect you may need some time to digest it all. I echo everything that has been said because I know this community is very good at welcoming new members and giving them the support and advice they require in the difficult journey they have just embarked on.

Feel free to ask any questions you have and rest assured someone will reply.

We did something similar by shielding Mum from too many visitors, keeping to very tight to immediate family and very close friends. Our reason for doing was that we didn’t want well meaning people saying things that Mum might not appreciate. Mum is a positive person and her glass is always half full, so we didn’t want people coming feeling sorry for her etc.

Any visitors that were allowed, were given strict instructions to keep positive and also to talk to Mum and engage with Mum. Mum’s ability to communicate was affected by the stroke and we noticed some people were unable to deal with this and so they would end up talking amongst themselves or talking to us and Mum did not like that. She knew they were there, and they were there to visit her, yet they were effectively ignoring her and she let them know by interrupting them by making noises (she is non-verbal).

That’s pretty much all I want to add as everything else has already been covered.

Wishing you and your Mum and your family all the best.

Namaste|
:pray:

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She has (I think) had short sessions with the speech & language therapist every weekday while in hospital but I haven’t been there for them. I asked her today if she’s been given any advice or exercises to help improve the swallowing but she said no. The swallowing problems are such a big thing for all of us as I can see how mealtimes loom over her and even taking a sip of water is something she has to psych herself up for.

I’ve read the stroke association booklet which had some helpful advice.

And yes, I’m becoming more and more aware of the impact on us as her family. We are looking after each other as much as possible.

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My swallowing was OK but I recall several in hospital had differing levels of need. To make drinks (mostly water I think) easier to swallow there was a thickening agent that could be used to make the water more swallowable (is that a word :slight_smile: ) I think it also helped retraining the swallow reflex but does make water taste a bit odd.

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@Anna_Moderator I wondered if you could point me in the direction of any positive Stroke recovery stories either on this forum or on the Stroke Association website?

At this early stage in my mums recovery I really want to help her to believe things can improve. Her response when I suggest that she, for example, could walk again is “no one here has told me that” ie none of the therapists, doctors, nurses etc have said this could happen. I’m hoping we might get more talk of aims and objectives in the coming week - aware that we really are early on in her stroke recovery journey.

I have ordered the book recommended by @pamelai1

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I just reread this response - unfortunately my mum also has a condition which means her adrenal gland does not produce sufficient cortisol so she is dependent on steroids. Definitely adds an extra layer of complication as getting the steroid dose right during this time where her brain/body is working overtime to support her recovery will be tricky

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Hi, just wanted to wish every success in recovery for your mother. I don’t have any practical advice at this time but can confirm it’s a long process with many obstacles. My Mum has now faced 8 weeks in hospital (but hers was a haemorrhagic stroke complicated by a pulmonary embolism) and only been making significant improvements for the past fortnight as before she wasn’t conscious enough for much rehab. So frankly I’m impressed with your Mum’s progress and all that you are doing to help her cope.

Also thanks to everyone for all the advice above.

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@Kiwimama Visitors are fabulous at aiding your recovery. You could make your visit a little shorter if mum feels she needs to rest. Ask Your Mum she will answer honestly. My Chiropractor stated to me he has met stroke survivors who have fully recovered. Keep on going. Good luck :four_leaf_clover: If you met me you would not even realise I had had a stoke. You cannot see my issues.

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Hi @Kiwimama

You’ll be able to find lots of positive stories on this forum. The first place you could look is in the Milestones category. This is where members share lots of positive things they have achieved during their recovery. Some people may have also share positive updates in the Share Your Story category.

You could also sign up to Stroke News as we sometimes share peoples stories in there too.

I hope this helps.

Anna

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