One of our local caregiver support group members alerted me to a panel discussion at Stanford on January 30th. The topic was “How much should family caregivers sacrifice?” The moderator was Larissa MacFarquhar, a New Yorker writer. There were three panelists. The featured panelist was Mary Felstiner, PhD. She was the caregiver for her husband with dementia. Another panelist was Leah Eskenazi, MSW, from Family Caregiver Alliance (caregiver.org). And the other panelist was Ranak Trivedi, PhD, from Stanford Psychiatry. Nearly all of the discussion was thought-provoking. Here are my notes (re-organized by panelist).
Mary told a story at the root of the question about how much family caregivers should sacrifice. Her husband John had dementia and was living at home. He suspected that Mary was going to place him in a care facility, and he was right! He said “don’t put me away.” She blurted out the question, “why are you more important than I am?” Mary explained that normally when caregiving, we can only think about “what next?” We never really bring to the surface questions like the one she blurted out to her husband.
Mary explained that she had covered for her husband for many years so that “he wouldn’t be seen as a problem.” She hid his dementia from others and even from her husband John.
As part of caregiving, Mary stopped exercising and stopped eating well. She said that it didn’t seem reasonable to care for herself. For three years, she attended a caregiver support group for those with dementia. Group members laughed at the suggestion to “take care of yourself.”
John was placed in a care facility though she felt very conflicted about this. Their children fully supported the placement. Later, John developed “terminal restlessness” and would fall often. She was worried that the care facility would kick him out. Their kids told her that there was no way their father was moving back home. They told her that she was more important. So she left him at the facility.
Mary doesn’t like the term “caregiver burden.” She prefers “caregiver syndrome,” which she believes sounds like a medical term.
She was a caregiver to her husband for five years. At some point, a psychiatrist asked her “what do you think John needs now?” She answered, “he needs to be dead.” So she hastened his death by removing all medications and giving him morphine.
There was some discussion about care planning. Mary argued that “having a plan is not appropriate in an indefinite situation.”
There was some discussion about changing attitudes. Mary say that there’s a stigma about sub-contracting out elder care. She said that there used to be a sigma about sub-contracting out child care so that the mother could go to the office to work. She hopes the stigma for elder care goes away too.
Leah spoke about “caregiver burden.” As caregiving tasks grow, equilibrium gets out of balance. At some point, caregivers take on a “burden.” This is done for reasons of dignity (both the caregiver’s and the care recipient’s), independence, etc.
Many caregivers are on auto-pilot. Many do not go to see a doctor for their own needs. Many do not spend much time each day on their own needs.
When Larissa noted that very few caregivers make a plan to stop caregiving, Leah said that she only knew of one caregiver who had an exit plan for caregiving. She caregiver said “I will care for you for one year.” The caregiver stuck to that plan.
Caregivers begin caregiving without knowing the full depth of responsibilities. Most caregivers have no plan. They just jump in and then go a day at a time.
We are facing some new issues in caregiving. (1) People are having to care longer because people are living a lot longer. (2) Another issue is the increasing complexity of health care. People are being sent home from a hospital “sicker and quicker.” (3) More women are working. (4) Higher costs of care. (5) Women are juggling partnering, parenting, and caregiving. (6) Families are smaller.
Economic harm is done to the caregiver.
40% of caregivers are millenials.
We can’t only be altruistic to others. We must turn this on ourselves.
She has studied patient-caregiver dyads, where the patient did not have dementia. There were many reasons that people give care — duty, love, affection, and empathy. The relationship comes first, and then the caregiving.
With these dyads, she is researching how do you care for yourself, and how do you help the other person care for himself/herself?
Lots of medical procedures are being dumped on families such as wound care, giving injections, giving medications, changing batteries in a left-ventricle assist device, administering biologics. Only 10% of caregivers are trained for the tasks they are doing (such as toileting).
Our society devalues nurturing.
The partner is the defacto caregiver. Others are only invited in by the partner. In a way, the patient has no control.
Caregivers and care recipients can become isolated.
Someone in the audience asked why is this form of altriuism so much more difficult than parenting? Ranak answered that in parenting there is an exit strategy! Children will become independent. It is socially acceptable to complain about diapers with babies, but not with the elderly. It is not socially acceptable to complain about the burdens of caregiving. A complainer caregiver comes off as selfish.
Watching a loved one decline and suffer gives unique pain to the caregiver. We feel helpless.
She told the story about Megan Markle saying no one had asked how SHE was doing post-birth.
Have end-of-life conversations with your loved ones early and often.
An audience member said that it is hard to predict what is acceptable quality-of-life.