He's not a priority

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https://www.sefton.gov.uk/social-care-and-health/adult-social-care/

xx

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Thank you everyone for your kind and supportive messages. They are scheduling another meeting for some time next week when we can talk further. My husband is telling me the aim is for him to be walking by the end of October so I’m so confused, and he expects to be able to manage a few stairs so I mustn’t sell the camping car. I guess there will be a load more questions to be asked about where he got all this information.

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How are you doing to day Mrs Southport Stroke Warrior?!

Has he expanded?!?!

Oh and did you get anything in writing?!?

K xx

:wink: :polar_bear:

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Hi Kieran,
They have agreed to a report in writing :call_me_hand:. I haven’t a clue where the timeframe came from, but we are supposed to be having a family meeting late next week, and they are going to arrange for me to attend some physio sessions with him. I think I’m going to have to camp in the car park :smile_cat:.

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Wow. You are so so strong.

I am in awe.

keep going and get a proper tent and sleeping bag at least!!!

K xx

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Hah!, not that strong, we do have a camping-car, all set up with a bed, shower, cooker and fridge.
In truth , it’s not me who has to get better so I have, sometimes, to pretend to be strong. In fact if one pretends long enough it becomes the truth anyway. Having a northern sense of humour helps too.
Most people on this forum seem to have suffered from having a stroke, so it has to be a lot worse for them, being on the receiving end. In a personal sense I’m a lot better off because I’m not cross for myself, but for my husband.

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:two_hearts: :rofl:

I love you

That’s not true Shelagh

You are the people who keep us going and we could not do this without you. and many others on here are carers. toghether we are stroke warriors - I couldn’t do without my JP @j.p.mac

It’s a two way street - you help us and we depend on you. we both suffer - but actually you have it worse - I am in a world of my own and I shout and rant and do stupid things and you have to put up with that - I don’t want to or mean it but so what - my brain says I’ve been a normal person…

You are 79 and so amazing. Are you still at the hospital?

Kieran xxxx

Oh sorry of course a picture of a polar bear caring for another polar bear

Polar bears hug[3]- Chinadaily.com.cn

can you come pick me up?

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And chocolate and cake and biscuits :grin:

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I know exactly what you’re going through, I went through the exact same thing with my husband, @SimonInEdinburgh, three years ago. It was so hard in the beginning when he was in hospital, trying to get information and what resources were available to us. It’s a case of being persistent.
For us carers, being stoic and strong does take it’s toll.
The feeling of guilt is almost palpable and that really doesn’t help us to remain strong.
I spoke to an organisation that I was referred to by my GP, and talked about what I was going through.
There was a light bulb moment when I was told that I shouldn’t feel guilty and that it was perfectly all right to take time out for myself, and not worry about the fact that the laundry hadn’t been done, or I hadn’t dusted or hoovered!
To take time for myself, because my mental health was important in my ability to support Simon. I had been given permission not to be guilty and it was a huge weight lifted off my shoulders.
And we also found laughter was a great resource too.
I hope you get the help and resources you need and we are here for you offering support and a place for you to talk.

You are not alone

Lea
PS have a flamboyance of flamingos x

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@Shelbo

Shelagh HAPPY 80th BIRTHDAY!!!

:heart_eyes: :champagne: :champagne: :birthday: :birthday: :gift: :gift: :clinking_glasses: :partying_face: :polar_bear: :polar_bear:

Hope you’re doing something fun!!!

Lots of kove Kieran

Oldest polar bear in the U.S. celebrates 37th birthday at the Philadelphia Zoo

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Hello KGB :grinning:. Thank you for the birthday wishes. We had some tiramisu instead of a cake as a little celebration. That way he could have some too.
He may be home in a fortnight, then the fun will start, but the physios are being very nice and are letting me attend some sessions. I’m going to have to learn all the right tricks to using stuff.
I hope you are feeling more cheerful now. I finished up by telling the specialist I wasn’t sorry for what I said, but I was for the way I said it. I could have been more polite!
Do take care of yourself,

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I just think you are so amazing and so positive and really inspire me and also others so as @bobbi would say keep on keepin on and as I would say stay as cool as you are grrrr :polar_bear: :wink:

I love tirmisu and so glad he could have some.

I am and today I have had a smile on my face because I was hoping you had a good birthday and sounds like it was ok!!!

I take my hat off to you! (well my West Ham cap anyway :roll_eyes: :wink:)

Kieran

Polar Bear Party Stock Photos and Images - 123RF

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Oh now I’ll take tiramisu any day over traditional birthday cake…I know what I’m going to have at my next birthday :yum: :smile:

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Hi @Shelbo ,

I have only just picked up your post as I have been away for some time. I have read all the responses and see you have had lots of feedback and support. I am pleased you got the support to help you get through this and sympathise with you for all the troubles you have had. We had similar issues and my Mum (89 at the time she had the stroke experienced pretty much what your hasband did in terms of prioitisation etc. If anything it may even have been worse as Mum’s stroke was so severe she was mostly in bed. The consultants did not have much hope for her in terms of making a recovery though of course they never said it like that and so she got the minimal of everything. I won’t bore you witht the details as I have covered them in other posts in this forum.

I am sending you this note because unless I have missed something, your post ends abruptly i.e. you were about to have a discharge meeting but that’s where it ends way back in mid-October.

I hope that it all worked out for you and you got home and your husband is making a good recovery.

Best wishes to you and your husband.

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Thank you so much for this. Yes my posts stopped as my husband came home. He is so much happier now, and has a positive attitude, although still suffering from exhaustion, so sometimes not much gets done by way of therapy.
He was left in bed a lot in hospital so his legs are like sticks and his tendons are very shortened, so walking will be long in the future but never say never. He’s not staying in bed now and we’re trying to get life as normal as possible apart from a wheelchair and downstairs living.
I’m very grateful for the support I got, and do look at the forum a lot, but often can’t add to what other folk have already said.
Certainly I can say that life is not as bad as I expected -yet - and hope that it never will be. I often used to say that if you smiled a lot you made others happy, and very often cheered yourself up as well. Keep smiling.
Regards
Shelagh

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So sad, but so true. You really do find out who your friends are at times like this. Family can also be the same. It’s not nice, but as you say people often find ways to cope. Sorry your Mum lost her mind - it’s not easy caring for a loved one.
Wishing you all the best.

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HI @KivetonGuy - it’s a tricky one, political or not. I find myself sympathising when I hear the hours they work. Not sure if there is a lack of skilled Stroke consultants, but we have also found that most are “clueless” and not at all caring. We found that once the clot buster had been administered and failed, that was it. It’s amlost as if they are a one-trick pony. Even if the clot buster is successful, the post-care and support for stroke survivors is extremely poor and that is across the board from hospital to home.

It seems the best help is self-help!!

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@Shelbo so glad to hear that your husband is home & things are going well. Being home is definitely so much better than being in hospital & that’s when the true recovery can begin.

Hope all continues to go well.

Ann x

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Hi Shelagh @Shelbo ,

I am so pleased that your husband is back home and is making good progress. I think with your positive attitude and the energy and fight you have shown you will soon have life as normal as possible.

Well done to you both and I can definitely say your story has made me smile a lot :smiley:

Peace and love. :pray: :hearts:

ManjiB

PS I think your positivity can rub off on others and so whilst you say you often can’t add to what other folk have said, by just adding a “Hello” and something like “I agree with xyz” would give further encouragement to the poster. But please do as you feel comfortable doing.

Once again, thank you for sharing your wonderful inspirational story.

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Hi @SimonInEdinburgh ,

I can only speak from our own experiences and I have to say we have no confidence in the consultants and the wider team - this is despite, and unless I am mistaken, doing exactly what I think you seem to be saying which is being our own recovery directors. I believe I am exactly that in my role as Carer and Advocate for my Mum who is a stroke survivor and as the title of this original post by @Shelbo says “He’s not a priority”, I repeatedly find that my Mum is always “Not a priority”. I can give you many examples but I ask you just take my word for it. Just recently she was denied an operation to replace her PEG tube which is now what they class as a “buried bumper”. The only reason why she has been denied this is because of her age and because the consultant probably feels it is not worth spending mony or effort on Mum in favour of someone younger.

This makes me very angry, but anger gets you nowhere. I can safeky say that if I was the one who had a buried bumper instead of my Mum, that same consultant would readily have done the proecedure to replace it. Btw, ALL other experts who saw Mum during this consultant were of the opinion that replacement of the PEG tube was the best option. It was ONLY the consultant who would have carried out the procedure who refused AND he gave NO valid explanation as to why he would not do it other than some wooly excuse about it be a high risk.

I don’t want to say any more on this as it is quite an emotional issue - the PEG is how my Mum gets ALL her feed, liquids and medication as the consultants never signed off her nil-by-mouth post-stroke condition… this is now coming up to 5 years!

So in summary, certainkly for us even being our own Directors has got us nowhere. It is our belief that Mum is where she is today through her own strong will power and “self-help”.

Stay safe and stay well.

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