Monday, May 7, 2012

Beginning to Adapt


I told my extended family by email what has befallen us. (The immediate family, of course, has been kept in the picture all along.)  This reply came from a cousin I’ve always felt close to, whose husband — now deceased — got Alzheimer’s decades ago, when she was much younger than I am now:

Hi dear coz,
I think we have all been expecting this, and altho I am so sorry for you both, I can say from experience that it is going to benefit you both.
By the time I moved P into care I had ruined my immune system and had no enjoyment in his company.
Once we both settled down the stress levels decreased and we could enjoy the best parts of the relationship without as much distress. Of course it is heartbreaking and it still upsets me ....but I felt that I could be my best for him once I wasn't the prime carer.
It still hurts me to hear discussions about the Altzheimer's disease and I have recently had to leave a philosophy class in tears because of their total ignorance of my background.
I am so glad you are close by, as I was 66 kms away and couldn't stop myself visiting after work and at week-ends. The worst part was that P's closest long- term friends couldn't handle it, and he kept asking....where are the others?"
I am sure you will get wonderful support from all your friends....and I send my deepest love to you both.

Everyone tells me I have done the right thing. It seems that friends have felt for some time I was taking on too much. And when I look back realistically, or read things I wrote over recent months, I see why they thought so. 

But both he and I are now looking back to the good bits, as one does. I realise we want what was, which had already declined. Instead we must try to find what is good in the now.  When I am able to bring him home for visits, that will surely help.

At first I tried to recreate home at the nursing home, but it didn’t work. For instance, we can’t watch our favourite TV shows without lots of surrounding noise, and interruptions by nurses giving him his medication; it’s hardly worth it. We have both decided to give up on these endeavours. So we talk, sit and read our respective books, have meals together sometimes. But there is a lot of food in the fridge at home, meant for us both, which I can’t let spoil, so sometimes I just have coffee while he eats. (Preparing meals at home, often I still automatically pull out two plates.)

He is nicer to me now, bless him. His pain is being better managed by the professionals than I could. Also I visit in the mornings when he is at his most lucid and therefore most agreeable. It wasn’t that he was not sweet and lovely before — much of the time he was indeed, but there were also those other times when pain and confusion made him frustrated and grumpy. I’m nicer to him as well: my own unremitting stresses already abating.

He is beginning to adapt, although he still longs to come home. The day before yesterday, he remarked, ‘This is quite a nice room.’ Yesterday he said of the nursing home as a whole, ‘This is a very nice little place’. 

He doesn’t remember falling, doesn’t understand why home is dangerous for him now. I explained yesterday that it’s not just our unit, it is also his body — the collapsing legs, and my inability to cope with that. I also told him that I had realised how tired I’d become. He went silent, digesting that. (He never wants me to suffer, and one thing he thinks is that he should be at home looking after me. He used to try to, but I had to discourage him for the last year, because he simply couldn’t manage such thing as cooking or doing dishes any more, either physically or mentally.)

After a while he said, ‘Maybe I could come home for a little while some nights and watch a bit of TV.’  It broke my heart of course. Back home, I sobbed most of the evening. But when I did myself watch a bit of TV, I had vivid recollections of recent times. Him sitting in his armchair, me noticing he didn’t have his hearing aids in, getting them, inserting them, turning them up or down for him when he complained about the volume level. His limited grasp of what was going on, even in old favourite shows. Him deciding to go to bed at 7.30 or 8.30 and me watching on (if there was something to see) alone.

These last months, when he was here, there were times I longed for aloneness and freedom. If he were away for a short holiday, I’d be ecstatic now. It’s the permanence that causes the ache. However, we are in early days. He WILL come home for visits, even overnight stays later on, so I’ll try to look forward to that and have him do so too.

I suppose I too am beginning to adapt.

2 comments:

  1. I'm sure it is a sad adaptation none the less. My mother-in-law had Parkinson's disease and the dementia associated with it. She could no longer be taken care of at home so went into assisted living; her husband went with her, he didn't need the care but wanted to be with her. Every morning he would wake up to her taking the pictures off the wall of the family that had been put up on the wall, saying she was packing them to go home. Every morning he had to remind her where they were was her new home. The family had decided she probably wouldn't even be able to come home to visit her house (long story but hubby and me moved into it) because she wouldn't have wanted to leave it. It is such a cruel disease to be robbed of one's memory; affects so many, not just the one that it happens to but surrounding family and friends.

    betty

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  2. Yes, I am afraid to bring him home too soon, in case it will be too, too hard for him to return to the nursing home.

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