The patient I’ve been visiting for the past 5 months, “Elaine,” has extremely advanced vascular dementia. During my visits, I usually try to talk or read to her. Since she’s hard of hearing, I’ll get really close to her face and touch her arm. The touch will almost “wake” her up for a few seconds and she’ll look at me. Her speaking ranges from a non-comprehending silence to a short sentence. Most of the time when she’s by herself, she’s lying in bed – one eye half closed. Occasionally, it’s as if someone deep inside wakes from a deep sleep, for just the briefest moment to open her hand or adjust her glasses, but then can’t help but fall back into slumber mid-movement.
Every week I visit, I wonder if she recognizes me. Every question I ask, I wonder if I’m reaching her.
Eating for Elaine is a major concern. Rather than forgetting to eat, it’s more like she doesn’t know how to remember to eat. Feeding herself is out of the question, but with a busy hospice staff, there’s no time to make sure she has enough calories when she frequently refuses to open her mouth. It doesn’t help that she will only eat what she likes: fish no other meat, mashed potatoes only with gravy, vegetables with a little bit of salt, or Rice Krispy cereal with milkshake not milk. Even with food in her mouth, sometimes she forgets to chew and swallow. So she only weighs about 70 pounds. Even if she could remember to walk, there are no muscles to support her weight. She’s all skin and bones. So perhaps it’s a blessing she doesn’t realize she has probably been in the same bed for the past year. If it weren’t for “Michael,” her husband of several decades, who visits every single day to feed her at least one meal, Elaine would probably starve.
Dementia is ugly and people like Elaine are often unlovable … but Michael’s enduring love for her helps me see beauty within the ugliness.
Elaine wears diapers. She has to – she can’t get up and walk to the bathroom, so she simply just goes in her bed. Once I accidentally walked in on Michael changing her, and he asked if I wanted to help as if it was the most natural thing in the world. Changing her exposed absolutely everything from the waist down. She was like a sleeping baby – closed eyes, peacefully oblivious to any shame throughout it all. During this process, Michael liberally applied baby powder all over, and matter-of-factly explained why it is better than the diaper cream that the nurses use. I felt incredibly awkward, but Michael was obviously used to this; it was normal, and natural and of course Elaine should need help. There was nothing wrong with Elaine needing help and us giving it; and it is Michael’s love for her that makes it possible.
At the same time there is no romanticizing this; Elaine’s condition isn’t pretty. Her life is incomparable to a “normal” life. She’s not exactly physically dying, but is mentally degenerating very slowly. Yet there’s no question that she is alive. But, because Michael loves her, and because we have compassion for her, we can take any of the ugliness and learn to redefine the ordinary as beautiful.
Being with Elaine I have learned to take every moment and comb it for gold. Since she responds so little, I am always hyper-alert for any half phrase, any twitch, any glance, and any furrowed eyebrow that can tell me how she’s feeling and whether or not her mind has surfaced to be Elaine again. You would be surprised at how much I’ve learned about her: that touch is comforting to her, that she worries she’s a burden, and that she always misses Michael. And when she smiles … that is like striking the jackpot. Her whole face transforms: the wrinkles on her forehead smooth out and she looks at you with clear eyes like she is truly seeing you, and she is happy. Then it fades, but there’s an after-image of joy that I’ve grown to love and chase after. She is like a newborn baby – fed, changed, and made to smile. Even when she can’t do anything “normal,” she is loved – and that is enough for joy.