Sunday, January 19, 2020—6:15 pm 21˚F (-6˚C)—Partly cloudy
Within one week, two people from my Alzheimer’s support group had their loved ones pass away. On January 12, one person lost her mother, who had been in her 70s. While the group was still digesting this sad news, Mike’s wife, Suzy, passed away in the early morning on January 16. Suzy was 62 and had been diagnosed about eight years ago.
That day, during our evening Alzheimer’s support meeting, Mike stopped by and spoke for a few minutes. He was well composed and described the last days of Suzy’s life. Suzy had stopped eating and would only drink a few drops of water.
The hospice nurse administered morphine (not that Suzy was in pain, but I learned it is a protocol to give morphine in such situations). On January 15, Mike went to sleep around 11:30 pm and woke three hours later to check on Suzy. At that time, Suzy was taking her final breaths. As soon as she saw Mike she stopped breathing. It was as if she was waiting for him to come and say goodbye.
The next day, January 17, I shared the following email with the support group.Dear All:
Yesterday was one of the most difficult days for our group and for me. First, we learned of the passing away of one person’s mother. And while we were still digesting this sad news, we were hit by Suzy’s passing. I never met either of them but felt so close to them from hearing their loved one’s stories and descriptions of their daily trials and tribulations. Kudos to Mike for taking the time to come to the meeting and being so composed when telling us about what transpired in the last days of Suzy’s life.
The following thoughts have been swirling and weighing on my mind.
Sumi is 65 and in the 7th year of her disease.
I know what happens in the late, late stage and what could, eventually, happen to Sumi. I don’t want my mind to go there but I can’t help it. The power of visualization is a positive force that allows me to achieve great things. But it also can create negative thoughts/forces. On days when Sumi sometimes does not eat well or refuses to drink, my mind races forward: Is this the beginning of a new phase?
With Linda and Suzy as backdrops, my mind visualizes scenarios about the end of Sumi’s life. Would I be able to continue to keep her at home? Would she be in a Nursing Home?
In Hospice? My children live in Los Angeles— how will they be involved? There are no answers to these questions. I know I should stay in the present and take one day at a time. But this is the struggle—anticipatory grief vs. living in the present—we all face during our journey. All I can do is love Sumi even more!
Warmly, KC
Today, on January 19, I paid my last respects to Suzy at the AJ Desmond Funeral Home in Troy, Michigan. She looked calm and in eternal peace.
Whenever I have gone to the Desmond funeral home, visitors would sit in rows of chairs facing the casket, which is place in the cove at the front. Immediately family members stand near the casket and visitors form a line to pay their last respects. After that, family and friends give speeches and tributes to the person who has passed away.
Today, at the funeral home, the atmosphere was not somber. The ambiance felt like The Celebration of Suzy’s Life. The visitation was from 1:00pm to 7:00pm. People came and went during this period. Visitors stood wall-to-wall and mingled and talked in small groups of three to five throughout the room. If it wasn’t a funeral home someone would think they had just walked into a (no drinking) graduation party.
Mike was his usual well-composed, equanimous self. He talked one-on-one with visitors. But he told me he wasn’t sure how he would be next week after everyone left. There were lots of photos of Suzy with family and friends. The photos were spread across the room on tables and easels. As people entered the room, they walked toward her casket by themselves and paid their last respects, one-on-one.
One way to view today’s event and the atmosphere in the room is that our loved ones with Alzheimer’s are dying a slow death every day, like dying from a thousand cuts. Care partners grieve throughout their Journey. So, when the final moments come, a care partner’s grieving tank must be almost empty. With a sense of relief that the ongoing sufferings, on everyone’s part, have ceased, they make a resolve to transcend these emotions into the Celebration of Life.
At home, I found solace in poem #39 from the book The Caregiver’s Tao Te Ching by William and Nancy Martin. Here is the poem with its narration:
Humility
Despite our seeming maturity,
we know that we are little children,
Utterly dependent on the Tao and helpless without it.
So we care for others with humility. We do not act as if we are virtuous or possessors of a special power
but as if we know how fragile and precious life is.
How can we help but be kind?
EVERY YEAR WE WATCH the cycle of living, dying, stillness, and rebirth in the turning of the seasons. The leaves of the fall trees blaze in the glorious colors. They gradually fade and fall. When the gray of winter ebbs, the ends of the branches will show the tiny green fringe of new leaves budding. It is soothing to know that our lives are unfolding in the same ageless rhythm. Life is fragile and transient, and this makes it rich and vibrant.
Understanding this can add layers of wonders to our caregiving. Those in our care know that this hold on life and health is tentative. They become our guide, taking time to really taste a bite of cinnamon roll. They patiently watch the play of wind in the branches of a tree.
This fall, we know we may never share another change in the seasons. There is one leaf left on the maple tree outside, and rain is starting to fall. We grow still, sitting next to each other. Today we will just watch in case we get to see that last leaf float gently on the ground.