Looking at the clock on the kitchen wall, I check it with the digital one on the stove. They don’t agree so I look at my wristwatch and then decide the clock on my phone has to have the final say. But none of this will cause the phone call I’m waiting on to happen any sooner.
A social work friend in the Boston area had graciously agreed to visit my sister yesterday in the nursing home on my behalf. I’m eager to learn how the visit went. The facility’s name contains the word “rehabilitation,” but my sister Pat is not a candidate for that service. Her disease progression involves a continual diminishment of her mental and physical capabilities. It is we caregivers and family members that need to call on our abilities to be flexible and creative in order to connect with her and meet her needs. Since the Covid19 lockdown it’s been difficult to get trustworthy information about Pat’s wellbeing and level of functioning. My friend Cece saw her in person a year ago, (as did I) so she has a point of comparison.
This meeting had taken four weeks to arrange and had been cancelled by the facility the night before via email. The message stated that it couldn’t take place because my sister “couldn’t keep her mask on.” This refusal triggered my “Mother Bear -don’t-mess-with-my-cub” response– a several hours long search for who is the person in charge of the persons in charge. This got me to the Regional Operations Director of all the health care company’s facilities in the State of Massachusetts.Fortunately the woman who called me back quite late into the evening was a 40-year veteran professional caregiver as well as an administrator, with the compassionate values that entails. She pledged to solve the mask issue and by morning, the meeting was reinstated.
Finally the call comes and we review together Cece’s notes. She fills in the details of her experience of my sister during the ½ hour they spent together, masked and socially distancing in the lobby of the facility. “She didn’t remember me,” Cece said, “but then, I was definitely in disguise with a mask and a shield.” (My sister was wearing a shield that stayed mostly in place for the duration).
Cece’s description of my sister gave me a picture and an experience of her as she is presently. “in a comfortable puffy wheelchair… in an orange blouse and knitted cap …under a plaid fleece blanket, green, red and pink.” (This reminds me that I sent that blanket to her a few months ago.)
“She gestures with her left hand…she seems pretty lively. Described Adam, (her son) as off somewhere and she was not able to say if she’d seen him recently.
Adam had driven from Massachusetts to Michigan where his father, Pat’s first husband, was in a nursing home. He left Thursday night when hospice called to say his father was actively dying. He texted me before noon “my father passed peacefully this morning.”
“I couldn’t use rhythm instruments that I brought for she and I to play with – I was told they must be quarantined first.
Cece is a specialist in working with dementia patients. We hope she will be allowed to return in a couple of weeks. Before Covid she’d offered to volunteer at this facility to bring her skills to teach an art-based system, InterPlay, that my sister loves. We were told then, “we don’t have the staff” for that to happen.
“She talked several times with focused clear language and solid vocabulary about subjects which were vague and seemed symbolically connected to her living situation, to not really knowing what is going on and when.” (I’m wishing she knew how much company she has in these feelings.)
At one point we each pressed our hands together (as in the prayer position) and she slowly moved her hands back and forth and I followed her. She would then get quiet and seem to be lost in thought or a trance.
Hearing this I’m reminded of her years as a member of the Grail, an international organization of lay women who became pioneers in Catholic feminist theology, of how she pulled me into leadership in the Cursillo Movement, and her summers spent directing a school for migrant children in Michigan.
This week my quiet times have been filled with memories of what I know of this woman’s life –all 77 years of it, memories I would often give back to her when I was able to see her in person. A friend here in Pittsburgh listened on the phone while I shared some of the stories I hope to share with Pat’s descendants if and when that opportunity is allowed me.