I am pretty sure Barry is dying now…
I had a care conference about Barry today. He can barely swallow now and weighs only 135 pounds. I tried to feed him lunch earlier and there was major panic in his eyes as he held the food in his cheeks. He was constantly trying to stand up, so after two bites, I brought him back to his room and put on some music to help him relax.
You might think it would be easy to say to the staff: no more food for Barry and no more water. But it’s not that easy. It’s really hard to be the person saying those words. I understand why there are patients with feeding tubes on his floor. I finally understand why one guy spends hours
each day trying to get any morsel of food into his wife as she lingers somewhere between life and death.
No one wants to be the one to pull that imaginary plug that means life or death. In Barry’s case, I have struggled with the sickening thought that maybe I am just thinking of myself. To be perfectly honest, I can’t even imagine the relief I will feel when Barry dies. I am sick and tired of visiting him in the care center. I love all the workers there and they do a great job, but I hate, hate going there. Everyday it’s a reminder of where I do not want to end up myself someday.
I am 62 years old and eager to get on with life while I still have my health. I just hate the guilt I feel when I go on a speaking trip or on a hike. I feel guilty when I notice a handsome man in a crowd. I often wonder if I will meet someone to hang out with someday; then I feel sad for thinking that. The voice inside my head keeps telling me not to have too much fun because your husband is lying back at the care center being eaten alive by dementia. I want to tell that damn voice in my head to shut the hell up. I want to be able to concentrate again. I want to read a book and really get into it. I want to knit sweaters again and go dancing. I want adventure! I want to be free!
So who was I really thinking about at Barry’s care conference — me or what is best for Barry? That is what I struggle with as I move through each day and wait. But today, I realized after seeing the panic in his eyes at being unable to swallow, that living must be hell for him. What kind of life is it to have lost your speech and are only able to lie in bed all day? Everyone says Barry wouldn’t like to live like this. I guess that is true, although I cannot remember that we ever talked about it.
I had to stay strong at today’s care conference. It’s my job as his wife to do what’s best for Barry. So it has been decided that there will be no more food for him if he doesn’t swallow the first bite. No more nutritional supplements and no water unless he can get it down. The hospice people told me it is much more comfortable for him this way. They also told me other things to watch for. Now hospice visits will increase as we move forward.
So I stood strong and told the voice in my head to be quiet! A long time ago on this journey of ours, I accepted the fact that I am not perfect. I finally know in my heart that this is what is best for Barry.
Before I left him today, I did something that I have never done before. I whispered in his ear, “We will all be fine. No need to worry anymore. You did a good job and it’s okay to let go now.” He laid very still listening and looking straight into my eyes. I wonder if he understood.
Then I drove home dreaming of summer and hiking — and I only felt a little guilty!