Taboo

While an overwhelming number of people in our world today love to watch sensational evening television that flashes constant images of death and gore, few want to see real life images or be anywhere near the process. It has never impacted me so strongly until the nurse sent us off with tears in her eyes today because she said she rarely had seen such support and love for a patient who was in her last days. She complimented us over and over again, but, seriously, all we did was hang out in her room, eating lunch and having friendly conversation while checking and double checking that they had gotten all her medications in hand and ready to go so that there would be no delay in managing her pain. We made sure that they had her very comfortable before she left....but these all seem like very normal and expected things...this should not be so amazing! I know that many people love their family members and express it well. I know that we are not the only family that stays close to their loved one and advocates for them, but the nurse tells me there is a growing number of people who leave the hospital completely alone and go to a facility where they die completely alone.

Until today, it has seemed proper to completely avoid the images of Mother Comfort sleeping with her mouth open and looking like she was so very close to the grave. Today, however, this was so very profound that it shook my perceptions up a bit. Remembering that Mother Comfort gave me encouragement to tell her story, a lot of thought was given to tonight's blip. This is part of her story, and the thing she did the most in life was to pass on information that might help others through it all. She hated the notion that she was 'starting to look old' but even so, when she saw my camera come out, she completely understood that artistic part of my personality that wants to capture something interesting or lovely when I see it happen. For her it was the sketch pad, for me the camera, but she understood.

In the nursing home, in the Foster Home, she would just casually continue talking while I took pictures one after another of her facial expressions or the way the light was hitting her. I had to ask myself why I felt compelled to stop sharing the images now. No one likes an unflattering photo to be shared of themselves. But even more we are uncomfortable looking at people we have grown to love when they are looking so sickly. I hope these are discreet and respectful, that is certainly my wish.

I was told by someone very near death once, that they were not able to make out actual things that people said, but they had been very aware of how people made them feel while they were talking in the room. Later, when they returned to consciousness, when someone entered the room, they could tell by the sound of their voice that they had been in the room during the experience. Mother Comfort's facial expressions tell us that it still matters to her that we are part of her life. Even though, a few days ago, she got mad because a few people had a pleasant conversation and she felt that they shouldn't laugh while she was suffering, we can chalk that up to having a very bad day. She wants us around and to the best of her ability, she wants to make us feel comfortable. It's our job to work through our uncomfortable feelings and be there.

If we have missed out on the experience of showing up when someone we love was in their last days, we still have the opportunity to be there the next time it happens. We can apply some lip balm for those very dry lips, we can wipe the crust that develops off the eyes. We can sing a song or kiss a forehead. We can ask the nurse if they look comfortable or if there is anything we might do for them. We have to start asking questions again and setting other things aside to be there. The resounding message we are getting is that people do better when there are people who love them walking through the process with them.

There have been many times when I have heard about people I have cared about who were going through this process alone. I have not always been able to be there and I know there will be many more that I will not be there for due to various circumstances. But for those I can, I will, and it is a privilege to do so. I hope that we will not be so uncommon in the future. I hope that the pendulum will swing and people will learn more about this process and step up.

Today was moving day, to Sarah's Care Home. The entire atmosphere is overflowing with peace and hominess. Family and friends are welcome anytime and encouraged to hang out and be part of the experience. Paul brought an Mp3 player with 1930's radio programs and a great deal of soothing music for her mind to wander through. We are very grateful for as near a perfect day as we could have right now. So many prayers are being answered.