I realize that it has been a long time since I added a blog. Now that I am back to work, I have so much more on my plate that sometimes I just do not have the energy to blog.
As the hospice nurse might say, the disease is progressing. We had a care meeting for my mom in her room last week. I was not convinced that involving her in the meeting was a good thing as I felt it would scare her. I have to admit that in retrospect, I was wrong. I think my mom really needed the opportunity to talk, to share her thoughts and to ask questions.
Right now she goes from being lucid to having trouble sometimes remembering even simple words. But, for the most part she is still very lucid. She was able to ask for a couple of things – mostly she wanted to be able to go outside at least a couple of times a week and she wanted to make sure that she was not being moved out of her room.
It was very hard for me to watch her during the meeting. Her regression is very evident and sometimes painful to watch. She sat in a chair with a stuffed animal in her arm acting more like a little girl than a grown woman.
She started to talk about being tired and losing her will to fight. She asked us all to promise that before we close the lid on her coffin to make sure she was really dead as she is claustrophobic. She asked the hospice nurse what dying would feel like – I really had a hard time with that one. But it was obvious that she wanted to talk about dying and it gave her an opportunity to do that with all of us in her room.
She asked for a special lunch on Saturday – an open face hot turkey sandwich with mashed potatoes, gravy and extra cranberry sauce. We set up the lunch in a small dining room and after that I took her outside and we sat for quite some time and chatted.
I’ve also noticed how quickly anything tires out my mother, now. I remember when I would be with her, she sometimes seemed to talk incessently. She would recount even the smallest details of her day. Now it seems like talking is a drain for her, and she shows little interest in carrying on any long conversations.
She is sleeping a lot now – and the nurses tell me that is common. I keep asking her if she has any pain, and she says no. But she is starting to say that she sometimes gets tired of fighting, and today she even said to me that she thinks that loss of interest in fighting is normal when someone is dying.
Sometimes I feel I am in daze, moving around in a situation that changes by day and by minute and just waiting for something to happen – but what that something is, I really don’t know. If the roller coaster tires me out, I can only imagine how it makes her feel.
Next week I am supposed to attend a conference in Seattle. I am still planning on going, but I have now way of knowing what will happen and when. It almost feel like something is constantly hanging over my head and can drop at any time and there is no way I can protect myself from it. That must sound selfish – I can’t begin to imagine what is going on in mom’s mind.
So, we move on – day to day – taking things as they come. What I try and focus on is being grateful to still have her- because I have to say, I still can’t imagine and don’t want to imagine what life would be without her.