I woke up feeling as though a ton of bricks had landed on my chest last night. There is a hollow feeling that I can’t shake off. Inhaling feels like the oxygen that fills my lungs struggles to find a way around my crushed insides in order to find its way around. The thought that mom is so ill that Dr. Noyes’ best recommendation is to let her aspirate herself to death doesn’t match the version of mom that is still independent, strong-willed, feisty and so alive. There has to be more that can be done.
Apparently the muscles in mom’s throat no longer do the work that they were intended to do—-amongst other things, they don’t protect her windpipe from letting food or water into her lungs. Each time that mom eats or drinks she is potentially filling her lungs with impurities that brew bacteria. Her own saliva works against her now.
I understand that it is a question about quality of life, and about letting the patient (mum) die on her own terms. But is mum really there? The option is on the table, but in my mind it isn’t for someone who just last weekend was smiling, laughing and strong on our trip to Spokane. I am afraid that the doctors have taken all hope away from her, and that she feels that she must resign herself. Dr. Martin–the hospice Doctor said that it is probably a matter of months before she succumbs to an aspiration episode.
I am not ready. Since she got home a day and a half ago, I move around her telling my self that whatever she is doing “it is the last time that ____.” I feel like I have to capture every moment on video or sound to remember her. All the insignificant moments of her life have suddenly become meaningful. EVERYTHING about her I want to capture.
The last night of her most recent hospital stay she became aggressive with the nurses thinking that they were keeping her from me. She was confused and became certain that someone had kidnapped me and was hurting me. I could hear the anger in her voice towards them while I talked to the doctor who called to ask me to come back to help calm her down. Now that she is home, she doesn’t want to go back to THAT hospital. I understand that it is her Dementia so do I let her make the decision to NOT go back to the hospital (it is the only hospital in town) based on her skewed reality? Or do I decide for her what she would do if she didn’t suffer from Dementia, and continue to treat her? To put it in Dr. Martin’s terms, do I continue to “squeeze one more hour out of her”?
I feel an urgency to get to the things that she has asked me for some time now. They are:
- a cruise–somewhere, it doesn’t matter
- a garden
- “take me to te movies.” she has said
- wood floor–get rid of the carpet
- a softer bed
- her wooden houses that have been in the garage for three years
- “temple trips”
- spend time with me
I feel like there is not enough time. I am not ready for this.
When I wrote this, I was listening to this:
As far back as I can remember I have always been afraid of the day when mom would pass. I remember getting out of my bed and coming to lay next to mom in hers because I feard that she would pass in her sleep. I did this even in my late teenage years and sometimes as an adult. This “hymn” was her favorite and she would play it for me to comfort me. I feel sad.