Apprehensive

[ored13]

So I am going for the 1st visit to the hospital tomorrow morning before taking my kids on Wednesday.

I saw my husband on Friday for a very last minute neurology appointment about a medication which they want to try. Turns out that he would have had to stay in hospital longer if they started him on this medication, which was being pushed pretty hard last week. And my husband had been led to believe that he would only be able to be discharged of he took it. Also been led to believe that this would be his magic cure. Seeing him walk on Friday was really hard. I'm so apprehensive about this week. I feel fairly stressed about everything. There is also a chance that he may be home in 2 weeks. Yet another thing to chase up with the hospital😞😞😞😞

[New_beginning]

You have been your husbands voice from the start and to get this to this point is a miracle. It's going to take months with adjusting, adapting but It's the unknown that causes this; our brains thinking of different angles, different scenarios, different strategies, how the family will adjust. You will be on auto pilot, apparently 13months later I'm just coming out of it psychologically, the practical elements totally firmly in place.

I'm so happy your at this stage, but I also acknowledge the physical and emotional impact it will have becoming your husbands carer. He may also feel nervous coming home too.

Could get the kids to think about topics they will bring up during visit, especially if first time children; can become quiet on visit, its alot to take in, in person. My son seen husband on life support, then picking him up coming home, he was very tearful and overwhelmed. Headway couldn't provide outreach with covid at that time, but school nurse was great, so at least Wednesday visit helps with transitioning which is positive. On headway website they have section for children, could let there teacher aware too about visit to monitor how they are at school if it will help reassuring you.

I've just discovered my local Headway do family outreach, this could be method of support for the beginning now covid restrictions easing for all of you.

I feel I got no answers really, as when the time comes your natural instinct will kick in. But I feel your husband will progress massively more being at home being with you and children as rehabilitation continues but more real life situations for daily tasks.

You got this x

[ored13 in reply to New_beginning]

Thanks so much. It went ok today. Time flew by and I was in mother hen mode most of the time. He's potentially coming home on the 5th of May😳🎉😳😳😳

[New_beginning in reply to ored13]

Your a natural x

[New_beginning in reply to New_beginning]

All the best for you all tomorrow with children visiting x

[ored13 in reply to New_beginning]

Thanks NB. Husband wants to go for a walk with them (he would be in his chair). There is a park just next to the hospital but not sure they would be up for him going there. However it is basically in the grounds on the other side of a fence. Either way he is keen to not be stuck on the ward with them visiting. So will ask in the morning. If they agree, it will have to be crazy raining or high winds for us to stay indoors.

How are you doing?

[New_beginning in reply to ored13]

Hope your weather been better than here, raining all day. Hope all better than anticipated with visit, and children gave there Dad big hugs x

Im just holding on for GP Friday my mood so low I feel suffocated now . After two days analysing on BI OT approach on home visit monday, i phoned this morning to complain, basically waiting for return call. Positive news my work has agreed to reduce my hours for 6 weeks starting next week and my husband cooked tee.

[ored13 in reply to New_beginning]

Those positives are great. It can be hard to look at the positives when feeling low. Could I ask what BI OT is? Is that brain injury occupational therapist? Today was good but I'm shattered and it was only an hour. We went out...it was cold so brought him some extra layers. Just as well as he came out in a long sleeved t-shirt, thin lounge trousers and his thick hoodie. But this is someone who hasn't been outside for more that 5 or 10 minutes for nearly 5 months (unless is was very warm and sunny, but don't think this has happened). So he finally accepted my gloves and fleece to cover his legs. Also put on my leopard print scarf (he will never live that down) and a jacket and hat. Then it blew a gale and Rai ed a bit and then heavy hail. But we his under a tree and he the kids climbed some. He also got to touch a dog for the 1st time in so long. Because we were hiding with a woman and her 3 dogs. I won't lie, pushing a man of 13/14 stone up a hill is a KILLER I won't have to bother with feeling guilty for not excercising ever again I don't think...so a good day. He must have been so so tired afterwards. Being in the hospital would not have been the best with the kids.

[New_beginning in reply to ored13]

I read post again and although visit went to plan bonus he touched dog kids climbed tree ,again it's one of those scenarios you couldnt make up with the planning you intended , and in time I hope it's something in the near future you can think back and do a little chuckle to yourself. X

[ored13 in reply to New_beginning]

So what was it that went wrong on your home visit? Right to complain, regardless!

[New_beginning in reply to ored13]

She didnt read his notes, she tried fitting him in box he cant fit in, as the tasks she stated we completed was done 8months ago. She also asked what he was like this time last year (it was PTA stage, didnt know kids, no visits for 10wks from discharge,he didnt know colours, I was refusing residential and still refusing weeks again. She made the assumptions carers in, and stopped in her tracks just me. Telling me I shouldn't do this, need to be by certain time etc I'm getting him to complete tasks to much, so much more but she came in blind not knowing, she came totally unprepared and rude after 4mths of home visits cancelled

[ored13 in reply to New_beginning]

What exactly did she expect you to do. Sit back and twiddle your thumbs for the past few months? I wish someone would just admit to certain things being a shambles over the past year. All these small things. I've heard so many stories from people with various conditions etc who were just dropped because of COVID and now find themselves in a very bad position as a result.

[Pairofboots]

Hi ored, start jotting down all the things that pop into your head you think you need to ask/arrange. Many things will fall in place, but just for peace of mind to cross the t's and dot the i's.

[ored13 in reply to Pairofboots]

Thanks Boots. I spent the hour in grooming mode. They wet shaved him over the weekend (bit of a mess, lots of cuts). So did his hair, reshaved where I could and gave his face a scrub and a moisturise. I was the 1st visitor in. It was an awkward moment considering how many waves weve been making in that place🤐😆

[Pairofboots in reply to ored13]

I really hope they didn't use an NHS issue razor, I never used one on a patient. We were lucky in having a stock of confiscated razors to draw on.

I did however attempt to use one on myself the day after my hiccup. The consultants words were, "you will have to learn to shave better than that when we start the rat poison (warfarin)!". Never cut myself as much since learning to use a cutthroat razor. 😨

Does your husband usually wet shave? If he does or doesn't, perhaps give them his usual razor.

I can honestly say I never cut a patient, even when combative.

Everyone who shaves think they can shave someone else, but there is a knack to it, everyone's hair grows in different directions.

No, I didn't know that, until a good old fashioned barber taught me. He never used scissors, just a cutthroat to cut hair and shave. Scared the heck out of me the first time, but he never even as much as nicked me in eight years. He used to say that the cut and shave would be free if he drew blood. Never got a free cut 😉

I shouldn't worry about making waves, it goes with the territory, and a professional team don't mind, and should treat you with respect.

[ored13 in reply to Pairofboots]

Heh! Yes he does usually wet shave. But we have given him an electric razor. No idea why they didn't use it. I think he had forgotten that there was one there. He shaved himself the last time.

[Pairofboots in reply to ored13]

Just let the ward staff know for future reference 😊

[ored13 in reply to Pairofboots]

I tjinkt his next shave will be at home 🤞

[Pairofboots in reply to ored13]

Have you got a discharge date? X