08 Sep He Needs My Hugs
Last week, I met with Janis, a care partner, who moved her husband, Richard, to a
memory care facility in January and hasn’t been able to hold his hand since
March. The staff recently told Janis that Richard has declined so much that he
now qualifies for hospice care. This is a scenario playing out in our care
communities with more residents than we realize. It makes me wonder if anyone
writes “loneliness and isolation” as the cause of death on a death certificate?
With some Covid-19 restrictions lifting, Janis is grateful for the recent ability to
visit with Richard outside, once a week for 30 minutes, six feet apart, and garbed
with approved personal protective equipment. Richard “stares at my eyes as if
he knows he should recognize me, but he doesn’t anymore,” Janis explained. “I
wish he could see my face.” Janis is going to wear a clear mask, bring a couple old
pictures, and play some of Richard’s favorite music on a portable CD player for
their next visit. We’re hopeful that the visit could create joy instead of frustration
for both Janis and Richard. Better, but still heart-breaking.
I also visited my friend, Diane, a spouse care partner for the past 8 years. Her
husband, Jim, recently returned home from a 2 month respite stay in a memory
care community this summer. Jim was already in hospice care and lives with
contentment and well-being. The hospice nurse was able to visit Jim in memory
care during Diane’s respite which gave Diane comfort since she could not go
inside the building. Diane shared, “If it weren’t for Covid-19, I might have let Jim
stay in memory care.” As a former certified nursing assistant, Diane knows most
care workers are doing the best they can. Every. Single. Day. “The staff loved Jim.
They were so good to him.” I asked Diane why she chose to bring Jim home. She
replied, “Watch.”
Diane approached Jim from the front due to his blindness in one eye and
dementia-related shrinking vision in the other eye. She gestured with arms wide
open and said, “Hey J, I could use a hug.” Jim instinctively wrapped Diane in his
arms and closed his eyes as she kissed his cheek and said, “I love you.” Despite
Jim’s declining language skills, Jim whispered back with clarity and confidence
that he’s retained due to Diane’s approach, “I love you, too.” When Jim walked away,
Diane looked at me and said, “That’s why…If I let Jim go to a care community now,
I can’t hug him anymore. I might never be able to hug him again. He needs my hugs.”
Dementia Together is all about finding joy on the dementia journey. These stories
are not about criticism or condemnation. They’re about considering, individually
and societally, the ethical dilemmas that have been revealed in the struggle of
balancing the threat of corona virus with the threat of social isolation. Thankfully,
in Northern Colorado, we have senior care professionals who are leading the way,
advocating for safe, meaningful connection for the most vulnerable among us. I
hope we let these stories remind us to thank and encourage them as they strive
to care well. I also hope these stories remind us to offer support to family care
partners making difficult decisions in challenging times.
Dementia Together offers tangible support through our weekly themed virtual
memory cafes for care community staff and residents inside buildings to socially
engage with us and their families outside the buildings. We share laughter,
singing, and reminiscing together. We are also providing our monthly meal
drops, care partner support and education, and virtual memory cafes for family
care partners and their loved ones still living at home. Someday, when it is deemed safe to
do so, we will be offering our memory cafes in-person again too…with great
enthusiasm, joy, and maybe even some hugs. Click here to learn more.
Cyndy Hunt Luzinski
