New diagnosis two weeks on - what's this about?

[sammyb]

A roller coaster of a week - huge highs and equally huge lows. The good news is my husband is now eating more often in the ward's dining room along with the other patients. Sometimes he gets pushed there in a wheelchair when he is feeling particularly stroppy and says he cant walk. Other times he will walk himself into the dining room when everyone gets up to go there. Sometimes the carers feed him and sometimes he feeds himself. Only one day did he completely refuse all food including fortisips.

But what is this next bit about please? At the end of last week I was taking food in and feeding him although by Friday he'd decided he could do it for himself. I thought that was brilliant until he said 'Once I've eaten this will you go please?'. I could see a bit of anger rising in him so thought I'd better go as quickly as possible to save him any stress. (Thank you for your guidance on this matter on TP). He was happy with that. The next time I walked onto the ward he swore at me to go - I'll leave you to decide the words he used! (not something he would normally do). Clearly he doesn't want me there at the moment. He seems happy for me to drop his meals off, have just a few words with him, tell him I love him and as long as I go pretty quickly after that all is well. He doesn't get rattled. But it is clear he doesn't want to spend time with me outside meal times either so I am only seeing him for about 10 minutes a day now in 2, 5minute bursts. Strangely I am not enormously hurt by this - well not at the moment anyway - but I am struggling to unravel why my presence causes him to be anxious when what I hoped I was doing was trying to reduce his stress of not being at home.

from Sammyb

 

[Margarita]

'Once I've eaten this will you go please?'.

I don't really know the answer , I put it down to the disease , mum not seeing the logic .

As my mother can say thing to me like that '' you happy now '' ''have you got nothing to do '' its like she pushing me away . she says things like that when I am only tying to help her . So I finish helping her and move out of her way .

 

[Grannie G]

Dear Sammy,

The more we try to find reasons the more complex it becomes.

There are 101 reasons why your husband might have developed this attitude, strategy for coping, whatever you want to call it, and they may all be wrong.

That`s why its impossible to understand.

This morning when we went out, I held my husband`s hand. Normally, he would have held mine back, as usual, but today he shook it off, saying, ` I can walk by myself.`
He then walked paces behind me and I asked him to walk next to me as it hurt my neck to keep looking over my shoulder every time we spoke.
He told me he preferred to walk alone.
So we walked on in single file.
On the way home, he forgot whatever it was that had made him stroppy and held my hand.
Who knows.


There does seem to be some improvement in your husband`s condition, so try to be comforted by that.

Love xx

 

[sammyb]

Thanks Grannie G - you always come up with pearls of wisdom which are really comforting and helpful. Not that I know you to look at, but I could just visualise you walking single file down the road. My husband has always been a very determined and independent guy and I could only think that the diesease is making that all the more heightened.

from Sammyb

 

[connie]

My husband has always been a very determined and independent guy

and that is how he will still see himself.

IMHO O.K. so he accepts your bringing him in food he likes, and does not seem to want you around.

He is trying so hard to come to terms with himself, (and he may never achieve this) and you are, unfortunately, a reminder of what he has lost.

Just give him space. This is going to take a lot of patience from you, but you must always go 'with his flow'.

I do so feel for you, what you are trying to achieve, i.e. "the best for him", unfortunately his mind will not be on the same wavelength as yours.

Carry on as you are, you are doing brilliantly. You will gain that inner strength from somewhere.

 

[jenniferpa]

This is very much speculation on my part, but I wonder if there isn't a bit of association with the group going on here. That is, you come in from the "outside" and in effect intrude on the "inside". I guess I'm really saying the same as Connie: he's trying to come to terms with his current situation.

 

[elaineo2]

Dear Sammyb.The "i can do it myself" factor is a good indication that independence is back to the fore.I don't know what to say about your "dismissal" after 5 minutes.I see it all the time at work,families visit and 5 minutes after they have arrived its "you can go now" from the resident.I wonder is it that loved ones don't want us to be there for fear of us getting upset?Like i said,i don't know why,only speculating.love elainex

 

[dolly gee]

and that is how he will still see himself.

IMHO O.K. so he accepts your bringing him in food he likes, and does not seem to want you around.

He is trying so hard to come to terms with himself, (and he may never achieve this) and you are, unfortunately, a reminder of what he has lost.

Just give him space. This is going to take a lot of patience from you, but you must always go 'with his flow'.

I do so feel for you, what you are trying to achieve, i.e. "the best for him", unfortunately his mind will not be on the same wavelength as yours.

Carry on as you are, you are doing brilliantly. You will gain that inner strength from somewhere.

dear sammy i agree with connie you are coping very well and you will find that inner strengh, also you are right about one of our regular contributers granny g she always comse up with some pearls of wisdom and very wise words of encouragement best of luck take care dolly gee

 

[Margarita]

My husband has always been a very determined and independent guy

I was thinking the other day , my mother always been strong as an OX and suborn as a bull [ in the most loving way I say that ] because she always been so independent , its her way or the high way .

So do find it amazing that she still has that in her now this far into the AZ , when she gets rude to me cutting me dead in my tracts since having AZ . but one thing that glue us together is that I have always felt love by her in the past .

 

[sammyb]

I wonder if some of it is to do with 'protecting me'. In one of his outbursts at me to go he said 'It's for your own good'. I wasn't sure what this meant but, having seen on TP that AD people can become violent, I wasn't sure that he didn't mean he might whack me one if I didn't go!! He's never ever done that but I couldn't be sure that wasn't what he meant. Perhaps he did mean it was for my own good that I shouldn't stay amongst the staff and patients there because it wouldn't do me any good. Who knows?

 

[Grannie G]

That certainly is a possibility Sammy.

My husband has never been physically violent, verbally agressive and abusive at time, but nothing physical.
Yet whenever he comes out of a bad lapse, he always askes if he was violent and had he done anything to hurt me.

So yes, your husband might not want you to see what might be in his mind.

So sad.

Love xx