He's not a priority

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21

@Shelbo sorry i’m a bit late replying. In addition to everything that’s already been said you coukd complain to PALS at the hospital. I know they have to prioritise but what you describe is unacceptable in my opinion.

I hope you manage to get things sorted soon.

Best wishes

Ann

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22

Thank you for your reply. It turns out in Southport I have to talk to the ward manager for anything relating to in-patients, so that’s what I’ve done. In fact everyone knows now that I’m extremely unhappy, and so is my husband, though he doesn’t “do” extreme.
Shelagh

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23

Hello Tony, 15 weeks is a very long time. I guess 3 sessions is better than none, but when I try to help I’m told they are the experts and I may hurt him. I can see their point, but I wish they’d consider ours.

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24

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

xx

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25

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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26

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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27

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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28

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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29

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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30

: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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31

In my local stroke ward the discharge preferred condition is able to walk to the loo and back to bed, able to transition from bed to chair to bed unaided

Do you / do they have an objective from the meeting ? To my thinking I would use as a means to clarify goals, actions & responsibilities and time scales to achieve them as a benchmark and then ask for another in 2 weeks time to compare achievement to intention and adjust actions or intentions to be ‘more realistic’

I’ll second kieran’s observation that you’re being strong :slight_smile: Do you have support to because being strong uses a lot of battery power and you need to recuperate and recharge :slight_smile:

Caio
Simon

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32

And chocolate and cake and biscuits :grin:

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33

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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34

@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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35

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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36

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:

38

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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39

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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40

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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