Practice Notes: Nursing Home Residents & EOL Doula Care
I will always remember the first time I was asked to visit a skilled nursing facility to provide doula care for a resident. Talia was still lively but fading, and mostly untroubled beyond kvetching over the usual complaints of nursing home patients, every one was always rushing her and the food sucked. Her daughter visited a few times a week but wondered how her mom might benefit from a different weekly visitor. Would she be more inclined to voice her personal needs and wishes to someone she had less concern about burdening? Would a fresh face, a gentle hand massage, and a person who has not already heard all of her stories offer some needed social stimulation? Because, as we should be reminded often, until last breath we are engaged in the labors of living.
Let's face it, visiting a nursing home is hard even when it is not your own person in residence. It is the place most folks hope and pray never to end up. Walking through the door triggers an internal recoil even before the air hits your senses. Memories of other visits to skilled nursing facilities rush in with all sorts of complicated feelings in tow. Before I leave my car to enter a skilled nursing facility I take a moment to ground myself, because it helps to remember that it's ok not to be ok.
I waded through all of that, signed in at the reception desk, and found Talia's room. Her daughter had let her know I'd be by and she welcomed me with good cheer. She knew that my visit was a gift and an experiment, I was a person who would come every week for an hour or two, depending on her wishes.
“Hi Talia, I'm Dina. Ellen says she mentioned I'd be coming to visit.”
Talia was sitting in her chair, she was a tiny lady with a barely tamed mane of salt and pepper curls. Her hands shook as she pushed her glasses up from her nose and looked me over. She pointed to a chair across the room and said, “Pull that over so we can sit and get to know each other a little.” I moved the chair close so we'd be knee to knee, her daughter had alerted me that she'd been hard of hearing since her 50's and had an easier time if she could also read your lips. Then I asked the first question, “How's it going Talia?”
And so began a conversation that brought comfort in the last few weeks of Talia's life. Because I was not her family member and did not work for or live in the facility, our visits gave her time to just be. While we visited Talia did not need to behave herself to be well cared for or heard. Because I was not responsible for her nutrition we could laugh about how much she hated the thickening agent that the aides and her daughter put in her liquids. She could talk about her sense that she'd be dying soon without my offering any reassurance otherwise.
In end-of-life work we learn to recognize the fatigue terminally ill people contend with from having to manage many relationships with different carers in order to get their needs adequately met. Whether a dying person is receiving family care at home, in a residential hospice, a skilled nursing facility, or a regular hospital room, if they are conscious they are working on getting their needs met. A person in the bed who apologizes for needing your help in the first place is trying to make sure you will come back when they need it the next time, even if all they can manage to communicate with is a friendly wave of their hand. Most of the carers tending to the needs of a dying person in the last weeks of life approach with tasks, purposes, and body chores, and the agenda implied by that impossible to answer question, “are you ok?”.
What can an end-of-life doula offer in this situation that is different? Time! When I enter the room in a nursing home, unlike all the staff, no one else is waiting for me in the next room. The person who lives in that space can have my undivided attention. I can adjust pillows, give a hand or foot massage, fetch an eyebrow pencil from a purse. I can write postcards to grandchildren for them to sign. I can read the sports page or jot down a recipe they wanted to remember for that nurse who'd asked but had no time. Unlike a family member I do not need to be reassured that they are ok, and because we have no personal history there are no touchy subjects to avoid. That funny dream about an old taboo crush is safe with me.
And there is time for questions like, “What will dying feel like?” or “Is it ok that I don't know how to say goodbye?” Or a conversation like the one I had w