It's not easy being cruel to be kind.....

[Bekx]

It's been 20 days since my husband's BI and 8 days out of the induced coma. For each of those 8 days he has got stronger and has surprised us all that he remembers how to get into his mobile phone (with the pin) and who to ring and ring and ring. He still needs rehabilitation for his speech, spelling, understanding social boundary's etc which he is finding extremely frustrating and so keeps attempting to abscond from hospital. He's rang me sobbing his heart out with frustration, he's got annoyed with visitors when we tell him he needs to stay as he still isn't fully better yet. But each day I visit he is sat there with a bag full of his belongings waiting for me to take him home. It's heart breaking to see him like this, I'm told he won't remember due to P.T.A, but when I ask him who visited him the day before he will nod or shake his head. he must be bored ridged as he has always been very active.

His mates took him a T.V as there is nothing in the hospital to occupy him. Each visit is heart wrenching, but I know he is too vulnerable at the moment to come home. He's like a grown up toddler, learning what's right and wrong, who he can and can't trust which is going to take time. I hate leaving him there, in the hospital with little stimulation it's not easy being cruel to be kind. I'm hopeful a place in a nearer more suitable rehabilitation hospital will be available soon, for his sanity and my peace of mind.

xx

[Hidden]

Hi Bekx,

You are right, it is so hard but you know that you are doing the right thing. He needs more recovery time yet before he is ready for a move. Have you made sure he has plenty of things to amuse him - music, photos, puzzles etc. Can you arrange a rota of people to visit and/or phone him so that he never goes more than a few hours without some sort of contact? Do realise that this phase shouldn't last too long, he has made remarkable recovery so far and he will still be improving for many months to come.

Don't forget to make sure you get plenty of rest, you are going to need all your strength when he comes home.

Jan

[Kirk5w7]

I was lucky, we had TVs at every bed and my husband bought me a small DVD player with screen that I could put on als, unfortunately I could never remember how to use it and the TV too, so drove the nurses mad asking for help, and the endless repetitions of my pulp fiction DVD, but it did get me through.

Same again at rehab where I only got 20 mins of physiology dail, but learned how to propel myself in a wheelchair and to walk eventually.

Once in the rehab unit I was allowed to go home at weekends, no doctors or physios on a weekend, but it was great to have the break.

I eventually signed myself out of there, it was difficult for me to get visitors, and I progressed quicker at home once able to walk.

He will understand it was necessary I did but it wasn't easy I must admit.

Tell him to hang on in there, the support will soon disappear once he leaves.

Janet x

[moo196]

Hi,

Shortish answer as v tired today.

Are there any hobbies he enjoyed that he could still "keep up with" ....even if only through short snippets from a newspaper or magazine? I also used talking books ( could rewind and listen to bits I had forgotten). Adult colouring books were suggested too late ....but may be another idea ( no right or wrong?)

Could he sort stamps? Books? Lists? Photos ?

Good luck

[moo196]

I also wonder if you could leave him with a small ( one paragraph ?) note pinned to his table or something to remind him that he is unwell, you WILL come back, you love him. Maybe leave something of yours with him to remind him ( a scarf /watch ?) ...

[paxo05]

Hi.

I have asked my wife about this as I thought it would be a better perspective than I could give.

Basically being " kind " and bringing him home would be no kindness at all.

I apparently signed myself out of hospital and proceeded to cause havoc at home as people tried to help and be kind to me.

It took years to sort me out and get seen by people who could help.

So to be blunt. Be kind and keep him where he can be helped. Yes it will be tough but not as tough as trying to fix things at home.

Pax

[Bekx]

Thank you all for your responses, ideas and suggestions. He had a complete meltdown yesterday evening, sobbing his heart out wanting to go. The nurse and I managed to calm him down and reminded him that he is still recovering and he will get home once he is better.

This evening was a different story, he was happy to see his mates and son, even had a good laugh with them. But I was in his bad books even before i got to the hospital. He'd removed his wedding ring and threw it into his ruck sac and kept demanding I go into the garden or office so he could give me a telling off.

Because of his speech I had no clue what, in his mind I had done, therefore found it difficult to reason with him. He then demanded I write my telephone number, name and address and date on a post it note then took a photo of it on his mobile. Maybe it's to document my visits. Hopefully he has a better day tomorrow.

(sorry about the font, not sure how it changed)

x

[Elkay_1954]

Theses are very difficult times... I remember them well. My son kept trying to escape the hospital as soon as he could walk again and had to be tagged (alarmed) so the nurses knew where he had gone. He pleaded one evening to me, "please let me come back with you - I'll sleep on the garage floor". Heartbreaking at the time - but funnier now we are three years down the line... Mind you, for nine months he wasn't always sure who I was and would ask "when is my mum going to come and see me?" - despite the fact that I was by his side 24/7. Very difficult times. Stay strong for him. He's in the safest place for now. X

[Venus2000]

My hubby was just like that when he was in acute care and one night called me at midnight to say that he had escaped. Fortunately he had stopped to talk to security on the ground floor. He had to be transferred to neuro rehab after acute care. It was heartbreaking when he begged me to let him out. He still constantly packed pillowcases to escape

He came home believing he could return to work as a CEO which was not going to happen. He went on to a second in patient programme for a month to help with return to work.

During this time reality started to set in (as much as it does post BI). His CEO role was made redundant and he acknowledged (though didn't understand why) he wouldn't be driving for some time and his beloved company car was returned.

Six months after his happened he hit a depression like I have never witnessed before, so deep, he was like the living dead. It almost finished us

He finally agreed to in patient treatment for depression.

I have no idea what happened but that week bought out the survivor in him and he was determined to find some purpose as he felt he had nothing

To cut a long story short, he took up cycling in spite of poor balance and vowed to enter a sponsored cycle ride. We also took a day at a time so he knew that he had something to do each day, planned but not over planned as fatigue was a big issue

Two years later he successfully completed a sponsored 50 mile bike ride raising £500. I was petrified but he did it

He also gained a companion who made him smile for the first time in 2 years, a real smile not the sort with dead eyes. That companion was a Spaniel, his little life saver.

It has not been easy and he is often frustrated and sometimes gets down, which we both fear.

We had to get to know how to live with the new us. We moved away from all we knew and have little social life but we have each other.

There are times when we both struggle and almost 5 years on we still grieve for the old us sometimes

But we work hard to move forward

My hubby continued with cycle rides but I could see it was no longer giving him the purpose they once had. So at Christmas (2016), I suggested he takes a year out to do something that would give him purpose

He has held an ambition for over 50 years to circumnavigate the globe. He applied to be a crew member of the Clipper Round The World Yacht Race and against the odds he was accepted, he sets sail in August and the race will take 11 months

I can't really put into words the journey we have been through, the frustrations we have both had, the grief we have both felt. The change on our relationship in so many ways, the loss of friends who didn't understand the changes in us, the isolation, the anger, the loss, physical and emotional changes for both of us, the fight for any sort of support, the fear of the return of depression, the total lack of understanding from many including GPs who believe everything looks normal from the outside so everything is fixed

It will never be fixed and we will never stop hurting but somehow we make it through. Our children have been fabulous but even close family outside of them just don't get it. But I gave up apologising and focussed on us

As a partner I feel there is little help for me so try to cope with my stuff alone whilst helping with others stuff

I am so proud of my man and wish him well on his Round the World Race. He gave a presentation to our grandchildrens school about his adventure last week. I never thought he would give a presentation again as his confidence was destroyed, I know he lost sleep over it and dreaded it, dodgy memory and all. But I put a presentation together and he did it. Something that was once second nature to him was a mega mountain to climb. Very proud of him

Living with BI isn't easy but

You can live again if you make changes, acknowledge life won't be the same and work to find the new you.

We have had some good times, we love our new life by the sea, we adore our dogs which we could not have had if we were still working, together we renovated our house, we learnt to talk to each other about feelings "almost" without guilt

We are self sufficient and enjoy simple things

You can find happiness again but it is a long path and neuro rehab is only the start it is far from the end.

You are feeling so bad for your hubby right now but don't forget to think about you too you are starting out on the most traumatic journey of your life. You are also suffering one of the biggest losses of your life, the person you knew has gone yet there is a person looking just like him staring back at you each day.

It honestly isn't all bad and I love most of my new life now that I have adapted to it but it takes work

I would give up everything I have to give my hubby back his brain, his smile, his emotion, his confidence, his company, his old normal, his hope etc

But it isn't going to happen so I do everything I can to help us take each day at a time and to enjoy it. On the occasional day I am rewarded by seeing my hubby smile in his eyes a real smile. That makes me smile too

I am going to miss my man for the year that the race takes but hey for a year I will be looking after me and my loyal little boys, after 5 years me time. But boy will I be glad when he is back in one piece. He has by the way already raised over £1k for Headway as part of his journey in the hope of helping others like yourself and your hubby to live with BI

Sorry that was longer than intended

I hope that you get the rehab that you deserve soon and that your hubby recovers as best as he can. You must take time to recover too and get support for you.

Be brave but be ready for a long journey. It is ok to get angry but it is ok to laugh too. It will get better but it takes a lot of work.

My thoughts are with you both

Xxx