My Mum

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Happy New Year to you all. I’m Dawn, my Mum had a massive stroke 3 weeks ago, unfortunately she was on the floor for at least 36 hours before she was found. She’s 80 and her name is Pat. The stroke was in the left had side of her brain and has affected her right hand side. She has no movement down her right side and cannot talk. I have a feeling that it may have affected the sight in her right eye too. She was only classed as medically fit yesterday, so now begins intensive physio and decisions about where moves to for her rehabilitation. The stroke was caused by a blood clot. It also appears to have affected her taste buds as she will only eat sweet things and even then is eating barely anything. I don’t know what support you can all offer me, but i wanted to be part of a support group where people are experiencing similar situations as me. As of today, due to the Covid restrictions I can no longer visit her. I’m finding the whole situation heartbreaking. It’s been a difficult year for me for one reason and another so I’m struggling a bit! Thanks all.

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Hi Dawn. Stroke is devastating, but worse close to Christmas and with a pandemic still going on. My stroke led to left side weakness, but I do know that when the right side is affected it causes problems with speech, memory and eating. These are very early days and your mums rehab will take time. Hopefully, she will have the determination to do all the rehab team ask of her. It took me a couple of years to make much progress, but after 6 years I’m in a better place, although partly disabled. Try to stay strong for her sake.

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Hi Dawn, like you my Mum was 81 when she had a big right side ischaemic stroke in April 2020 - which affected the left side of her body. She was able to be treated with thrombolysis as she got to the hospital within two hours. This broke up the clot and aided her recovery somewhat, although she has been left with a fair amount of weakness.

This was just at the beginning of the first lockdown so we were not allowed to go with her in the ambulance - and couldn’t visit whilst she was in hospital, so I understand how difficult this time is. She was discharged as medically fit after just ten days with no rehab or physio - as all resources had been redirected to Covid. The information we had from the hospital was ‘limited’…but at one point they said it was unlikely they would get her on her feet again.

As you say - the situation feels heartbreaking as there is so little you can do personally for her at this time. The thing that helped me the most was the Stroke Association website and various articles…being able to read up and learn as much as I could…as quickly as I could. It gave me a purpose and I felt I was at least doing my best to prepare for the future help she would need.

She came home with a catheter, very poor swallow function (so food had to be pureed and liquids had to be thickened), barely able to walk and with little mobility in her left arm and hand. Community rehab was delayed by six months because of lockdown, so we were very much left to deal with things on our own.

So the positive for your Mum is that she is receiving the treatment she needs and will hopefully benefit from the rehab she will get. It is very early days and there will be a long road ahead - the phrase ‘a marathon rather than a sprint’ is very appropriate. Also bear in mind that at 80 years of age - there may be other medical issues that could impact her level of recovery. My Mum already had arthritis, osteoporosis and a torn rotator cuff in her right shoulder, so her recovery has been dictated by these conditions as well as the stroke.

We are eighteen months on and Mum is now able to walk around the house unaided (albeit a little unsteady). She has to sleep downstairs - although she is able to climb the stairs every now and then. The catheter is gone and she is able to eat normal food (as long as it is chopped up small), but her appetite has never returned fully - and she has protein supplements to help with this. She is able to speak although her voice is a lot quieter than before. She is able to get into the car so we can take her out, and we have recently been to a local garden centre. She is able to walk round with a rollator and we stopped for a coffee whilst there.

None of this would have seemed remotely possible when Mum first had her stroke. So the key thing is to never give up hope. Yes there will need to be changes and adaptations - life will potentially be very different - but the brain is a wonderful thing and it learns to adapt and change too. So improvement and recovery is always possible.

We provide all of her personal care…her memory has been affected and she has been left with a lot of emotionality, anxiety and post stroke fatigue. So a lot of patience is required. My Sister and I are learning as we go - sometimes we get it right…sometimes we don’t ! It’s a process - a journey we are all on together.

Sorry for the long reply - I wish you and your Mum well and send strength and courage for the future.

Best Wishes
Karen

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Thank you so much for your reply. Hearing others stories gives me hope. I’m starting to do some research and will use the stroke association website too, as you say it helps to prepare yourself doesn’t it. I hope your Mum continues to make good progress. X

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Hello,you have come to the right place this site is a mine of information and help,sorry about your mum,she will need a while to come to terms with everything but hopefully therapy,care,medicine etc,it will all be in place for her.she might not communicate much anyway at first,when I had my stroke I didn’t want to or rather I couldn’t be bothered to, too much stuff going on around me too much to process all at once,sand i was only 51 ,so don’t worry too much,keep yourself well and keep asking anybody you can if you need questions answered or help.just take one day at a time and stay safe.best wishes and love.Bernadette :heart:

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Thank you Jane, it’s so good to hear first hand experience of how you felt. Mum isn’t able
To communicate at all, but I suspect she may have been feeling like you did. I will make the most of the bit of time out. I’ve not felt well today, but I expect it’s the anxiety of everything. Take care xx

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Thank you Bernadette for your kind words. It’s a tough time for Mum, she’s a fighter though, 36 hours on the floor could have been fatal, but she hung in there. Take care of
Yourself, you’ll probably all hear from
Me again as the weeks go on xx

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Thank you Jane, it’s so good to hear first hand experience of how you felt. Mum isn’t able
To communicate at all, but I suspect she may have been feeling like you did. I will make the most of the bit of time out. I’ve not felt well today, but I expect it’s the anxiety of everything. Take care xx

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Thanks John, the women in our family are strong and fighters so we’ll keep going on. I feel better after you’ve all said it’s still very early days, so thank you xx

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Thank you for your support and encouragement x

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I had my stroke at 83 years of age and just like your mum’s just in time to spoil everyone’s Xmas arrangements. Mine was also a left side one and affected m right arm, leg, hearing and if it hadn’t ben through having cataracts also the right eye. It didnt affect my sight but was very painful to the touch especially when I daily tried to poke it out with my toothbrush while cleaning my teeth.

Being right handed I believe that it was better than having the left side dead because It meant that I had to work hard to recover strength and dexterity with the left hand temporarily taking over day to day exercises till I could get things working again. If it had been the left side dead then it would have been simple to say that it wasn’t essential.
I’m in my eighth year of recovery now and have managed to get back to playing guitar and keyboards (Though not a patch on previous skills), drive, and do most of the things I used to do, but rather badly!
Full strength will not return and I’ve got used to working around extreme tiredness. My speaking ability is pretty awful and Covid restrictions on personal contacts have done nothing to improve the situation.
The point I want to make is that it isn’t the end of the world, even though in early days at times it seemed so. and all the help is there if required. I wish you both the best of fortune for the future.
Deigh

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Hello Deigh, thank you so much for taking the time to reply. It’s fab to hear from someone who has been in my Mums situation. I’m hopeful that Mum has the determination that you so clearly had and still have. It sounds like you’ve not let this hold you back in any way and it’s great to see that you’ve not lost your sense of humour. Take care Xx

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Hi Dawn - so sorry to hear about your Mum’s very traumatic stroke. But as people have already said, it is early days yet and she will improve. I had a similar right side stroke 16 months ago, aged 70, and could not put any weight on my leg for 4 weeks. But gradually I began to walk very slowly, and when I came home my wife followed with a wheelchair. Now I routinely pop out to the shops alone. Arms and hands take longer but some use does come back. I can open a bottle of wine if you don’t mind waiting! Keep asking for advice and suggestions - there are all sorts of aids and gadgets appropriate at different stages, but it can be a matter of luck if you find out. Some areas have a disability living centre where you can get advice and try things. Good luck and best wishes, Bruce

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Yes she is a fighter and she has you but you must look after yourself too and keep well so you are there when she needs you .stay safe x

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Dear Dawn,

We are about three weeks ahead of you. My husband who is only 64 had a serious stroke in November and after two weeks still had no speech and no use of his right side. It was a huge shock as he had no risk factors, never been on any medication or in hospital before and had been working that day.
So now at seven weeks he is able to transfer from bed to chair with the help of one person and no hoist and is starting to have a few phrases. He understands us but with very restricted visiting his speech is quite limited when it comes to telling us his thoughts or needs. I think he also has changed tastebuds and initially couldn’t see to the right but that has probably improved now.
I feel very encouraged that he is making progress even though it is slow but it is hard not to know where he will be when he finally comes home. I don’t know whether to plan for a wheelchair or a lift and I know that getting a suitable car or shower room will probably take longer.
So I suppose I want to say if there is one thing I have learned it is to be patient but not to be too pessimistic, whilst at the same time being grateful for each small improvement.
Thank you to the other contributors who have helped me to have hope and not expect too much too soon and to realise just how many good recoveries there are.

Stretton

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Hello Stratton, thank you so much for
Your lovely message. I’m so sorry to hear about your husband, the shock is so hard to deal with isn’t it. It’s interesting to hear that your husband has similar side effects from his stroke. Mum is having lots of physio but I’m told is still struggling with her speech and swallowing. She isn’t eating or drinking so is suffering from the side effects of that. It’s so hard not being able to see her. I took some Ella’s Kitchen baby food and rusks up to the hospital today as it’s been suggested she might eat those. Fingers crossed. Her potassium levels are too low so she is being treated for that now. I’m not sure where Mum will end up next, I think it will be some time before we can even consider a return home. That’s hard to think about. It would be lovely to stay in touch and hear how things are going for you as our stories are so similar. I hope you are getting plenty of support, it must be so hard not having your husband with you. Xxxx

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Hi Dawn
How horrendous. It is devastating to life, to carer schedules to all sorts.
My husband had his stroke just before Christmas 2018. It was his second major one and kayoed him further obviously. So now he is completely dependent on me though we have carers help twice a day usually.
Your mum must be devastated too as 80 is not nowadays regarded as old and out of action. No longer being able to visit is even worse! At least she is getting intensive physio. My husband did not get it at all, or barely any as the OT and Physiotherapist were absent over the 6 weeks he was in the rehab hospital; so he didn’t get rehabilitation at all and it wasted those 6 weeks. We gained a weekly visit for 6 weeks or so subsequently and an OT really did help a lot in helping us learn how to get Colin out in a manual wheelchair and in a car. That has not however improved his willingness to go anywhere as the eyesight issues [hemianopeia = half of both eyes does not work] incurred mean that it is what another person on this forum labelled sensory overload. He gets vertigo.
Let’s hope your mum’s physio and rehab really works a lot better though she seems to have some worse effects than my husband. At least he can use both arms; just both legs don’t want to work as he has Cerebral Palsy in the left leg and Stroke on the right!
As for eating, I can only suggest that you suggest to the ward food services that they aim to give her something little and often, especially drinks. If her tongue is affected it may mean swallowing is difficult and that was awful for Colin- thickened tea , even though normalised after a while, put him off tea for the past 3 years!
We sympathise with you on this forum, and just spouting off to us here helps. I rejoined it recently. Sometimes tips are offered. Try them out. It is difficult. Have you any other family members around you to help relieve the burdens sometimes? I haven’t. I do have church family around me as I am very involved there.