This posting is for all the caregivers out there, past and present. You have or are presently accompanying a family member or friend as they transition. This journey may be swift, or it may take weeks, months, years. But you were there, or you are there now. And it’s the holidays. TV commercials, store music, radio channels are all blasting jovial lyrics about “sleigh rides,” “jingle bells,” and informing you that “from now on our troubles will be miles away.” You want to stop this music, postpone the holidays just this once, because it’s another burden, another reminder that your world is not at all looking a lot like Christmas, or Hanukkah, or any other festivity taking place around you. You feel alone.
My mother tells me the story of our familia en Mexico -- how parents, aunts, cousins, comadres, compadres, all living in close quarters would help each other through elder transitioning. There were no “assisted living” housing arrangements, no social workers or nurses coming to the house. It was simply “the family” who became the network. It makes me think about the Mayan communities who have settled here in Nebraska, some of whom I’ve met. They’ve taught me how their community handles births, deaths, illness. Because many are undocumented, they don’t go to the doctor or hospital. They take care of their own. Some of the immigrants have come already with medical knowledge: either degrees from medical schools in their home country, or they are curanderas and/or doulas. They have created a strong support system. This is not to say it’s easy for them. It’s just a reminder that in this country, there are various support structures. Many cannot afford “assisted living” (or choose that option because they fear their loved one will be abused), or there are challenges with receiving outside assistance in the home, which then demands much from the one or two people helping.
With each generation, close familial networks become fragmented and disappear. And so I think of you, dear one, who is without a large, supportive network, who is overwhelmed with the work of taking care of your father, mother, or other family members or friends. I think of you who may have forgotten how tired you are, but your body reminds you: the ache in your back, your feet, your arms, the headache you get in the afternoons or late evenings.
I am thinking of you who cannot sleep well, always on the alert in case the family member with “sundowners” tries to walk out the door at 2a.m. I am thinking of you who works hard to keep the dignity intact for the loved one whose mind is shutting down (because that’s what happens first when the rest of the body is dying). I am thinking of you whose father, mother, or other loved one can no longer recognize who you are. I am thinking of you whose loved one, after many years of illness, has transitioned, and another kind of grieving begins.
A few days ago, I wrote to close friends, telling them how much I cherish their friendship, and wishing them much love. They wrote back and said: “It is a pleasure to see you, hear you, and share ideas, joy, laughter, and some pain to make it real.” That’s it in a nutshell, I thought. It is so important to share our lives, and that includes “some pain to make it real.” It’s not a friendship/relationship without what is “real.” There is much sadness, anger, fury, frustration, laughter, joy (a kind of bittersweet joy), respect, and exhaustion, in accompanying a loved one toward final transition with dignity. I’m keeping it “real” for you, dear one, who finds these words familiar. I’m keeping it real and thinking of you, sending you strong energies of calm, comfort, deep breaths, many moments of humor, and the knowledge that you are not alone. You are not alone, dear one. I am thinking of you and others are too. You, dear one, are a member of this larger familia of caregivers. Con paz y fortaleza.