Celebration of Life – Humility

Within one week, loved ones of two people from our Alzheimer’s support group passed away. One’s mother in her 70’s on January 12. While we were still digesting this sad news, Mike’s wife Suzy passed away in the early morning of January 16. She was 62 and she had been diagnosed about 8 years ago.

During our Alzheimer’s support meeting in the evening of January 16, Mike stopped by and spoke for few minutes. Mike was well composed and described the last few days of Suzy’s life. Suzy had stopped eating and drinking. She would just drink few drops of water. Hospice nurse had given morphine (not that Suzy was in pain, but I learned that in such situations, it is a protocol to give morphine). On January 15, Mike went to sleep around 11:30 pm and woke up 3 hours later to check on Suzy. Suzy at that time was taking her final breadths and as soon as she saw Mike, she stopped breathing as if she was waiting for Mike to come to say goodbye.

Next day, On January 17, I shared the following email with the support group.

Dear all:

Yesterday was one of the most difficult day for our group and for me. First, we learned passing away of one person’s mother and while we were still digesting this sad news, we were hit by Suzy’s passing away. I never met both but felt so close to them from how their loved ones used to tell stories about them and describe their daily trials and tribulations.

Kudos to Mike for taking time to come to the meeting and being so composed in telling about what transpired in the last days of Suzy’s life.

All these 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 happen to Sumi. I don’t want my mind to go there but I can’t help. The power of visualization is a positive force that allows to achieve great things, but it also can create negative thoughts / forces. On days when sometimes Sumi does not eat well or refuses to drink, my mind races forward thinking: Is this the beginning of a new phase?

With Linda and Suzy as backdrops, my mind visualizes the scenarios of Sumi's end of life. Would I be able to continue to keep her at home? Would she be in the Nursing Home? In the Hospice? My children who are in Los Angeles - how will they be involved? There are no answers to all these, and I know that 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 Desmomd Funeral Home in Troy, Michigan. She looked calm and in eternal peace.

Whenever I have gone to the Desmond funeral home, visitors are normally seated in the rows of chair facing the casket in the cove in the front. Immediate 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 passed away.

Today, at the funeral home, the atmosphere was not somber. The ambience felt like Celebration of Suzy’s Life. The visitation was from 1:00 pm to 7:00 pm. People were coming and going during this period. Visitors were standing wall-to-wall and mingling and talking in a small group of 3 to 5 throughout the room. If it was not a funeral home, one would think they just walked into a (no-drinks) graduation party.

Mike was his usual - well composed, equanimous and talking one-on-one with the visitors. He told me that he is not sure how he will be the next week when everyone leaves. There were lot of photos of Suzy with family and friends. Photos were spread across the room on the tables and easels. As people came in the room, they walked toward her casket by themselves and paid their last respects, one-on-one.

One way to see 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 the thousand cuts. Carepartners grieve throughout the journey. So, when the final moments come, carepartner’s grieving tank must be almost empty with a sense of relief that the on-going sufferings on everyone’s part has ceased and make a resolve to transcend these emotions into the Celebration of Life.

At home, I found solace in the poem #39 from the book The Caregiver’s TAO TE CHING.

Here is the poem with its narration:
 
EVERY YEAR WE WATCH the cycle of living, dyeing, 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.