Rules to live and die by

If you've ever shared a meal with me, you know that I have a certain set of rules based on how foods can interact on a plate. Food cannot touch unless it is dry-to-dry and thus easily separated; if a wet food touches a dry food or another wet food I won't eat the shared border area. Sausage/bacon lives high up on the edge of a plate and out of harm's way when syrup is around. I typically eat all of one thing before moving on to the next item on the plate, usually in a clockwise manner. Anything wedge-shaped is eaten first from the back removing any crust or outer coating, then from the side until it forms a thin strip and falls over, except for pizza. Things like casseroles don't bother me because the contents are supposed to be together. It is not unusual for friends to ask, somewhat randomly, "So how about Mexican food -- can you eat a burrito?" in sort of a culinary version of Who Would You Do. There are times I can't watch other people eat if they are alternating foods that just don't go together. This highly intricate involuntary system of food governance is getting a little less strict as I get older, but it is definitely still there.

A couple of years ago, I started volunteering with a local hospice organization to provide caregiver respite, run errands, sit vigil, straighten up a kitchen, or whatever needed done for a person in the last months of their life. Up until November, I had spent time with 4 different women who were dying. 2 of those 4 were wonderful relationships that I absolutely cherish -- one was more than a year long with a woman so tangled by arthritis that her little fingers literally ran parallel to her wrists and she needed companionship while her son was in prison; the other was a rough and tumble Bostonian woman in her 90s who needed someone to complain to and to straighten up her closet. I only spent about an hour a week with these ladies, and while driving to go see them I was often thinking of the other things I'd rather be doing, I got over myself and remembered that it was truly the least I could do. I grew immensely from being with them, from hearing their stories and even having the privilege of being with one of them on the last day of her life as I shared a glass of wine with her daughter, a stranger to me but here I was in the most intimate moments of that family's life together.

The other 2 were both women who had adult failure to thrive and dementia, meaning they were quite old and had difficulty being interested and focused enough in continuing to live to do things like eat and drink. Neither was particularly social. They didn't trust me enough to allow me to do light housework or other tasks that may have made them more comfortable, and they never really wanted to talk. They didn't want me to just sit with them, or read to them, or to go fetch foods that just sounded good. Their children or powers-of-attorney had signed them up for volunteer services -- I tried, I really did, but I came away from each encounter frustrated with myself for feeling like such a bother to these women and eager for spending that hour a week doing something that seemed to have some meaning both for another person but also for me. Selfish, I know. I told the coordinator my concerns that I was really only bugging these ladies and they had no specific needs I could help with, and to maybe try another volunteer with a peppier personality than mine.

When I was given a new assignment in November, I was disappointed to hear the details of this new person -- she was in her 90s, had adult failure to thrive, and had dementia. She did have a specific need though -- like many elderly people she was more likely to eat if someone sat with her. I was told she had several things in her nursing home room to eat, and that I should offer and encourage those things to try to get a little more in her. I figured that was no problem and felt a little more hopeful that this would be another meaningful relationship where I was useful to the person and the experience was useful to me.

The first time I went to see her, I found a tiny, tiny woman covered in blankets in her bed -- just a little wisp of a face poking out. I pulled up a chair and introduced myself. She answered with a sweet toothless smile then said something that could only have been German and pointed to her ears indicating she couldn't hear a word I was saying. Great. She has dementia, she's mostly deaf, and she seems to be speaking a mix of 70 -30 German to English. She wouldn't eat, no matter what I offered her. She was kind but kept her eyes mostly closed. Nuts. I went home feeling frustrated all over again, thinking that this would definitely be my last person I'd visit with hospice as it just had not been what I thought it would be. I could volunteer with a ton of other really cool organizations. I could feel useful.

I went back the next week -- same scenario. I went back the week after that, and to my surprise and joy she agreed to eat something. "Great! What would you like?" I see a box of graham crackers and grab those -- she smiles and takes one from me. Hurrah! She gums one for a few moments, then says something that I took to be German with a hopeful look on her face, so I ask her to say it again. "Salty." "Oh, those taste salty?" "Salty. Sardines."

I looked around the room and saw a pile of several tins of sardines in a bookcase. Okay, I think, she wants sardines, then sardines she will have. I grab a tin, find a fork, and peel back the flimsy little cover. She smiles and reaches happily for the fork, which I had used to stab at the head of one of those little oily guys. She takes the bite and grins. All is well. THEN SHE PROCEEDS TO ALTERNATE BITES OF THE SARDINES AND GRAHAM CRACKERS. Back and forth, back and forth. It was the most egregious violation of my rules that I had ever seen. She ate more than half of the tin of fish, and at least 2 sheets of graham crackers this way.

I left feeling good about the fact that she had eaten, that she had given herself a little more energy, that she seemed to relish the combination of crunch, sugar, oil, and fish that had repulsed me. And, probably most importantly, I was reminded all over again that this is so not about me. I went home and ate a wedge of cake, point first.