A place called dignity

[alex]

Can't sleep, its 3am and there is a lot of things buzzing around in my head.

The main thing is the imminent move to yet another hospital, don't know when yet but told to expect it in the next couple of weeks.

The pity of it is that he seems so settled where he is (or maybe its me who's settled where he is), its only a 10 min drive, the new place is at least an hour each way, more in heavy traffic.

I'm told it will be much better for him and that they can offer him much better facilities, i know i should be happy about this and look forward to him moving on, but for some reason i'm not.
Maybe i feel uneasy because the last time they said that, i walked into the ward to find the person i love and respect most in this world, tied to a chair with bandages, (I could not stop the tears when i saw him) this was apparently done to keep him upright, his head was tied so tight his forehead was bruised.
I know they were trying to help but what about a persons dignity? Do they sign it away because they can't communicate or understand whats happening to them?

Maybe my uneasyness comes from another of these moves that was supposed to be better for him, when the man in the next bed barricaded the ward door and used his drip stand to smash the window and then jumped from the sixth floor window! We were told not to be too concerned about the effect this would have on my partner, as he was unlikely to remember it, even though they had to give him oxygen and sedate him as he was so distressed (maybe i should be grateful for vascular dementia after all!)

After intensive care, we were told by his team of specialists that most patients who have been so ill can die at any time for no reason, especially when they are being transfered, they said they don't know why it happens it just does, they said that maybe its because they no longer have the support of intensive care, one doctor said he has known people to die on the morning they are due to go home and they don't know the reason for it. He explained it could be worry, apprehension, or the loss of their secure surroundings but they just don't know why it happens!

I know i should be pleased about the move, but i just feel so apprehensive about it. I have heard no bad reports about the new place, infact only good ones, so maybe i'm over reacting, but what if ????????.
I'm also concerned about the effect it will have on his memory (WHAT MEMORY?)
I just worry that it will disorientate him yet again. Will this speed up the vascular dementia? Then starts the roller coaster that just never seems to end.

Sorry to sound so negative and its not that i'm not grateful for everything that the hospital have done for him because i am, but i can't help the way i'm feeling, am i over reacting or do others feel so unsettled when a move is imminent?

Regards
Alex

 

[Michael E]

Alex hi,

Have been desperately trying to think of something to help - very difficult. I can imagine how concerned you must be but I find part of the whole problem of looking after a partner with this sickness is that it preoccupies us. We think about it too much and it sort of takes over our brains.

It is impossible to protect somebody 100% of the time. People do die - it's the one certainty and I do believe that sometimes people just decide they want to let go - they let go. Not worth the struggle any more. I really do question as well the benefits of keeping people alive beyond their natural 'sell by' date.

Provided the sufferer is not being ill treated and is being looked after properly then I suspect that's it. All we can reasonably do. I do also suspect that it is very difficult for us to accept that a hospital - care home can give the same love and attention we can. And when they have left we have a big hole in our lives. Perhaps we worry too much. Sorry Alex - it's a bitch.. No easy answer except maybe try to be easy on yourself..

Michael

 

[Amy]

Hiya Alex,

to find the person i love and respect most in this world, tied to a chair with bandages,

Didn't think they were allowed to use restraints, I know in mum's NH they will not use the lapbelt on her wheelchair, even to ensure her safety.
We all get scared by changes we don't want to happen, by things that seem out of our control; changes that are going to impinge on our lives. Are you also concerned that the added distance is going to make it less easy for you to visit as often as you have been? That you may have to make some changes that you have been resisting? Are you going to have to let go a little, and you really don't want to?
What ifs? They drive us mad. My son takes his driving test today - I want him to pass, but if he does he will be out there on the roads on his own, and what if...?
When we love, we want to keep people close, protect them, not lose them - but we cannot do that, because they have their own journey to make, their own risks to take and their own mistakes to make. And by allowing them to do that, we open ourselves to more pain, but we let them live their life. So, if this new place is considered to be the place where your husband will receive the best care for his condition, then it is the next step of his journey, you have to support him, smile whilst your heart sinks and trust that he will be OK.
Take care Alex. You will be OK.
Love Amy

 

[Margarita]

Don’t know what to say, because I have not been in your position, but when I read

we were told by his team of specialists that most patients who have been so ill can die at any time for no reason, especially when they are being transfered, they said they don't know why it happens it just does, they said that maybe its because they no longer have the support of intensive care, one doctor said he has known people to die on the morning they are due to go home and they don't know the reason for it.

I can understand your worry , my mind who be ticking two to the dozen as well , Hopefully with your support & love for your husband all will be fine with the move, I’m sure it will be let us know how you get on .

 

[Áine]

oh Alex! this sounds just awful. i can identify with that dreadful sense of not knowing how things are going to be at a new place and feeling I have to do what's best, but having absolutely no b****y idea what IS for the best. I've not experienced anything so horrific as you describe in the hospital though. I don't know the whole story, maybe i missed it on another thread ...... but however awful that place was it sounds like you were able to get him out of there and to the place he's at now where it feels more settled. Maybe that can give some hope for the future? if it DOES prove to be awful (in spite of your having heard good reports of it) you could get him out of there?

let us know how it goes?

hugs

Áine

 

[Amy]

I can breathe again, he failed. Resitting again in a month's time. He's quite philosophical about it, accepts he made some daft mistakes (plus a tough tester!)
Amy

 

[alex]

Thanks everyone

Thanks to everyone for the messages
Had a bad day (and night) just needed a good moan.

Amy
In answer to your question, the physio checked with the ward sister and she said that she agreed it could not be classed as restraint as they were not doing it to stop him from doing anything (He could not move a muscle at that time) they were doing it to stretch the muscles in his neck and arms due to the spasticity. I still took them off!

I smiled when i read your first post, your good! and maybe the visiting does have something to do with it. Am i that easy to read?
Slight difference in the comparrisons though! Hope he has better luck next time. Then starts the expense (car, petrol, tax, insurance) its known as the joys of parenthood! been there, seen it, done it!

Kind regards to everyone
Alex

 

[Amy]

Morning Alex,
Yes, there was a difference in comparisons; I think though there are some of us who are born worriers. We always think of the what ifs....Hope you had a better day and night yesterday.
No not easy to read, but I put myself in your position, and I know what I would be thinking!
Take care. Love
Amy