Frustration

What's one of the worst things you can do to a person living with dementia?

How about changing the environment? The total living environment, unexpectedly, without any notice.

More than anything else, people with dementia in residential care need to feel safe, secure, occupied, at home and connected to their former lives."

Ms McCann said that in what for these residents is a frightening and sometimes bewildering world of much uncertainty, they need to be helped negotiate a familiar environment that is supportive, makes sense and resonates of home.

Think of it this way ... what if a giant hand were to suddenly and unexpectedly reach down into your home, pick you up and plop you down in a different home? Oh sure, the new "home" may be just as adequate to your needs on an objective basis as the old one but ... how well do you think you would cope?

I can't really blame the hospital. Much as I might like to. I mean Mom has been moved to about six different rooms in just under three months. But I know they are just doing what they need to do. And one of the moves was caused by a shift of the majority of the inpatient units from one floor to another in order to facilitate renovations.

But. This last move. Believe it or not, words fail me ...

Mom has been doing so well mentally for the past month. Quite frankly, we didn't expect her to make it through the summer. She had been losing the battle with MS (multiple sclerosis) over the past year. Struggling with the dementia. And then diagnosed with cancer this past February. She had lived with us for a little over a month in the early summer. But about a month after going into the hospital in the beginning of July, she was doing very poorly. And the doctors told us to expect maybe another week or two.

But once again she bounced back. At first it seemed like she would recover when company would come, only to crash hard each time afterwards. But for the past month, mentally, she has been doing so well.

When I was up to see her yesterday morning ... it was one of those times of really having Mom back again. I really miss my Mom, even though I see her every day. I miss her because even though I physically see her, I can't talk to her the way I use to. As my Mom. To really discuss things with her. The good. The bad. The worrisome. But yesterday, she was so right on.

Then I got a phone call in the afternoon. Mom wanted them to call and tell me that they had moved her to another room. Quite frankly, I really didn't think that much about it. Just another room move. So I wasn't planning on going up that night but when I unexpectedly found myself near the hospital that evening, I decided to drop up.

I was very glad I did. And left there very upset.

If Mom had been an 8 or 9 mentally on a scale of 1 -10 that morning, she was a 3 that evening. The move down the hall had taken that much out of her. In her former room, she was next to the window. There are two patients in each room and we are always pushing for a "window seat". Because when you are in there for the long-term, being by a window can make a huge difference. Especially if your roommate who has the window likes to keep the curtain between the two beds closed.

Well, this had been one of the better rooms Mom had had. Right by a window which looked out on a small garden set in the middle of the hospital buildings. She had a beautiful view of roses and bushes out that window. And of course, the ledge to put pictures and plants on. Plants which could actually grow. Because they were next to a window. I had bought her a beautiful cyclamen and brought in a couple of African violets she had been growing in her own little house. And they loved that window.

So. New room. Next to the door, not the window. All her stuff packed up and shoved in the closet. And Mom terribly sad and confused. I felt her frustration. It was like a physical presence. It became my frustration. And it seemed like the best, the only, thing I could find to help her was to tell her that no matter where they put her, I would always find her. That was guaranteed a small smile and she would respond "Yes, I think you're right".

I did my best to reassure her. To put some of her stuff back out. To tell that she would get use to the new room and would feel better in a few days. And hoped that I was right.

When I went back up today, she was a little better. A little. But she still had this air of sadness and confusion about her. And I wasn't there more than five minutes when she started falling asleep. Which is something she does in phases. So even though I know that it doesn't necessarily "mean" anything, it still hurts. Because it leaves me with a sense of loss, a sense that she is slipping away from me yet once again.

My brother is suppose to be back for a visit next week. And it's highly likely that she is simply "recharging her batteries" as we tell the Blue Jay. Conserving her energy until he comes. I hope so. I pray it's so.

But once again, I walked out of that hospital with some a palpable sense of frustration. Of sadness and loss. Of wanting to have someone to strangle, but no one being there.