Stroke Club?

Lakeland used to have these B9 but think you are looking at a specialist kitchen shop now or alternatively Amazon or Ebay.

Just had a look. There are lots of different ones on these sites.

Where did she get the bottle cap, FranP ?

My MIL had parkinsons, not a stroke, but she had a stand for her kettle to allow her to tip it up so she could make a hot drink for herself. And an old fashioned bottle cap to limit the amount of milk poured

Goodness you do have ongoing problems. The watch sounds a great invention. DH's bleed was caused by high blood pressure, completely without warning, it had been normal the day before. He doesn't have AF, but what he did have was central stroke pain, intense unremitting pain caused by messages going astray. It was truly awful to spend day after day watching him writhing in agony and being unable to relieve it. Finally Pregabalin proved to be a game changer, and once the pain was gone, he could start to do physio.

I keep a plastic urine bottle with lid in the bag on the back of his wheelchair, and there have been quite a few occasions when he has been using this in the car with a coat thrown over it as people walk past!

My DH can use the toilet but because he moves so slowly it is difficult when we are out to get to a public toilet on time. I therefore use incontinence pants when out and about. At night he uses disposable urine bottles, he can get to the bathroom but in the night I am scared of him falling, which has happened with a trip to A&E in the wee hours and another subdural bleed resulting in neuro surgery.
One thing that has been a game changer has been a smart watch which notifies him and me by looking at his phone if he goes into atrial fibrillation, which is still happening despite heart surgery which simply sealed the left appendage to stop clots escaping.
I can then administer a beta blocker. But the watch also monitors vitals, blood oxygen levels and his respiratory rate as well as his sleep patterns.

I managed to find a gadget (on Amazon I think) that looks like a cup with a handle attached to a long tube which leads into a large urine bottle. This he can manage completely one handed, which means that I can leave him for an hour or so, it makes such a difference. I just have to empty it on my return.

I purchased a flask 2.5 ltrs for his black coffee, It has a lever and keeps hot for 24 hours, handy if I go out shopping etc.
I also put soap dispenser(usb charge) in the bathroom so he can do the soap himself having use of 1 arm only.
A trolley on wheels that can lift up at an angle to support his tablet.
Diabetic socks from Amazon that doesn't cut into his legs if they swell.
Trousers that have poppers down the side of the legs.

Disposable folding urine bottles for going out long distances.
Electric hand to exercise the numb hand(from Germany)

Thanks B9exchange. Strokes can be so different, affecting sufferers in a multitude of ways, and it isn’t just us oldies, there were much younger stroke victims on my DH’s ward, which is tragic. I remember feeling downcast at the stroke patients who seemed to be able to walk, talk, eat and go to the toilet a few days after a stroke whilst my DH was lying unconscious in a bed hooked up to all kinds of equipment with oxygen and fed by a tube, thankfully we kept him out of critical care where he would have to be ventilated and the outlook would be much worse. But there were also several patients on his ward who died, so two ends of the same spectrum.

Fallingstar I feel for you, losing use of limbs is tough enough, and speech going, but after the first few months we have not had so much of the memory loss, although some things I do have to keep reminding him, such as the time the carer is coming in the morning. He is very good at reminding me to put the bins out and lock the back door!

My DH was taken to hospital pretty quickly and thrombolysed, he suffered a cluster of clots, an infarc on the frontal left lobe was the most damaging but he had clots on the brain stem and elsewhere that were not as bad, however he suffered a bleed on the brain as well after being thrombolysed.
Due to the infarc being on the left side his right side is affected, he is very weak on this side but goes for physio at the hospital for ongoing problems with this. He can walk a little after months of being bed bound or in a wheelchair, but his balance has been impacted by the clot on his brain stem so he needs assistance when walking and suffers falls very easily. The bleed affected his eyesight though this hasn’t yet been confirmed, he is still undergoing investigations into this. His heart needed an operation to prevent further clots being produced due to atrial fibrillation, this has been done successfully.
He can talk but has no filter so often says inappropriate things or can say odd things that make no sense, but can also hold reasonable conversations at times. His memory is terrible, he often forgets what day it is or what he ate or did a few hours before and regularly forgets his address and what year it is etc., he is not improving very much with this. I tend to use post it notes to remind him of things.
He gets very depressed, anxious, and agitated at times, and will repeat the same worry over and over again. Repetition is an issue in general.

We had a similar experience to you Primrose, big brain bleed, but ambulance not quite as slow. Apparently A and E staff rang Addenbrookes for help, but they were just told to get on with it! He is also left with his non-dominant side the only one working, although he is just starting to walk. No useable finction in his hand after 13 months.

Agree with the non-stick mat, useful for DH not just for his own food, but he can also feed the cats!

We have a big double bed frame and were able to have two electric slatted bed bases fitted which made getting out of bed easier, and DH likes to sleep with his feet raised a little.

Also got him a bed ladder which he can use to pull himself up

Thisismyname1953

I was a nurse on a stroke unit for years and my top advice to someone who suspects their loved one is having a stroke is to act fast and ensure the ambulance service knows it could be a stroke .
The advertisement on TV is correct , if it is a clot, speed is essential. If diagnosed within an hour or two , clot busting drugs can be given which can stop or reduce the effects of the stroke.

Good advice IF you can get an ambulance to come urgently.
My husband had his stroke while we were having our evening meal. He had all the signs we see on the TV ad so I told my son to hold him on the chair so he wouldn’t fall and I dialled 999 immediately. Nobody could have done it faster!

I told the call handler he was definitely having a stroke. We waited 1 and a half hours for the ambulance which then took another hour and a quarter to reach the hospital because it got lost believe it or not!

It was a dreadful experience and I remain convinced that the delay caused my husband much more damage because we were well outside of the “golden hour” they say is so vital. He had a haemmorhagic stroke by the way which affected all his right side and is now in a wheelchair, has speech and memory problems, very often depression and can only use his left (non dominant) hand and arm.
We were very badly let down by the ambulance service.

A sticky mat is a really useful way of keeping things steady. My husband had a Dicem mat, available on Amazon and in lots of shops for the disabled.

I agree it is unfair that those of pension age or above are denied carer's allowance, but we are also denied motability whereas those younger can qualify for brand new cars. We still need to get out to Church, hospital appointments, even dare I suggest the odd meal out, why are we denied any help?

I was a nurse on a stroke unit for years and my top advice to someone who suspects their loved one is having a stroke is to act fast and ensure the ambulance service knows it could be a stroke .
The advertisement on TV is correct , if it is a clot, speed is essential. If diagnosed within an hour or two , clot busting drugs can be given which can stop or reduce the effects of the stroke.

I agree Primrose53 we should get some kind of carer’s allowance, just think how much it would cost the state to do what we are doing.Is 24/7. And no matter how well intentioned people are when they say you should get out and make time for yourself is just not always possible, I do try but a lot of the time end up postponing or cancelling seeing anyone. The thing is if I am not there he needs someone with him because he can get confused and upset, so I have to call on a friendly neighbour to sit with him or a member of the family, but they are not always free.

Yes, my husband gets Attendance Allowance. He also has a Blue Badge which is really useful.

I know others on here will disagree but I still think it is wrong that once you get State Pension you cannot claim Carers Allowance. I work harder now than I ever did in my working life. I have had several people telling me that I should claim Carers Allowance. when I tell them I can’t because I am over pension age they are genuinely shocked and tell me to double check that because it doesn’t sound right!

Yes. Very helpful.

* attendance allowance

Yes the clock looks good, will look on eBay 😜
Wondering if other posters have claimed ate dance allowance. My DH gets the higher rate. It really helps because I can’t drive, we just sold the car we had. Public transport here in London can be good but if is peak travelling times getting a priority seat is difficult, so it pays for taxis back and two for appointments/physio.
He is presently under three consultants, stroke, heart, and neurosurgery, so there are a lot of appointments.

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We also bought a great clock... Stupidly again bought it new but several are second hand on eBay I see now that I'm about to list this one!

My mother-in-law kept an appointments type diary and after her stroke would accidentally turn two pages quite often and then got very confused.

This gave her the confidence to work out what was wrong without having to ask for help.
It might be useful for you too fallingstar

NotSpaghetti

This is the radio that was really successful.
It only has limited choices and the volume so isgood for cognitive issues too.

This looks good, thanks for the link NotSpaghetti.

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This is the radio that was really successful.
It only has limited choices and the volume so isgood for cognitive issues too.

B9exchange

We did try a mirror box, this one uk.saebo.com/shop/saebo-mirror-box/ It is designed to fool the brain into thinking both hands are working. DH got bored with it pretty quickly, but perhaps we should persevere. He has very little voluntary movement, can lift hand from waist to mouth, with quite some effort. And he can just marginally squeeze a soft ball.

Do any of you use splints at night?

My husband uses a splint at night. He was very fed up last week and decided it was not helping so didn’t use it for several nights. Now he is using it again as apparently it DOES help.