ALS: Deeper Connections

When I hear friends and family members say they plan to travel to Europe or Africa, or put on a dinner party, or sail their boat, I long for the days when I had that freedom. Acceptance of my life of sitting in the same spot on our living room couch is not coming easily. But feeling connected to others whether they reply to my weekly post or not gives me another way of deepening my connections to others.

My mother lived to 100 and though she had dementia in the last 8 years, she continued to play her grand piano. My father died at 76 with cancer in his bones and he got to enjoy his favorite meal of pork roast and applesauce and one last piece of my mother’s blueberry pie. When Kathleen and I met 29 years ago and discovered we both loved the same Chinese paper maple tree in the Arnold Arboretum, we still had so many trips in front of us, staying at Captain Jack’s in P-town, trekking to different corners of Wisconsin for family reunions, celebrating one Christmas in Johannesburg, South Africa, with my family who dreamed up separate skits by the siblings, and the in-laws who made us all laugh seeing my mother tasting a green bean for freshness before purchasing any at the Fruit Center in Hingham.

So now how do I get over my sadness? No River Cruises, Safaris, explorations of settings for a novel to follow-up Burnt Umber. No trips to museums, or even walks up the hill. I must pursue this way to deepen connections to others: writing about a territory of experience involving Hospice and approaching the end of my life which some may wish not to even read.

I have met such an interesting group of people on this journey. Johanna, my Palliative Care NP cut out the deer’s head that graces our front door. Meg, my physical therapist, has helped me to laugh, seeing there are so many unsolved challenges from the neck brace to breathing problems. Michael, my respiratory therapist measured me to get a vibrating vest to help me breathe better if my insurance allows it.

One 24-hour period constituted my introduction to Good Shepherd Hospice. One night nurse Martin came at 8PM with Matthew who brought q big suitcase with several Oxygen machines. I connected to it with a cannula for my nostrils. The first two hours helped, but then I got back into wheezing and mucus blocked breathing. Now the comfort kit was supposed to arrive at midnight, but we had a number to call and found out it would arrive first things in the morning.

The next day my nurse Camille and social worker Vignie met with us to go over all the medications allowed for constipation from low-dose morphine. I tried it, a tiny amount that was put between my bottom lip and my gums. Nothing dramatic happened. I tolerated it. It occurred t o me to donate my book Burnt Umber to Good Shpherd’s library because I am not only a ptient with ALS now. But in 2019, I participated in a Bereavement Group at Good Shepherd after my mom died of dementia.

Now we have to learn how to treat my shortness of breath with the low-dose morphine which I had my fictional character Lucca in my book turn down.

I am learning that as a Bulbar patient, I don’t fit into Hopsice as neatly as do those with cancer and dementia. My next time of trying the low-dose morphine was at night when the gurgling and wheezing returned at 2:00am. I feel I am drowning in liquid when the meds are put in my mouth, so I need to have the dose put in my feeding tube.

I am also going to have three referrals—for massage, someone with whom I can share music, and spiritual talk.

My healing conundrum is this: trust myself. No one else knows what is going on in my throat, and I need to keep describing it as best I can.