Dementia Journal, February 2, 2020 in Daydreaming on the Porch

Mom is at rest now, her more than decade-long struggle with dementia and diabetes is over. She passed away in a deep sleep early this past Tuesday. It surprised me, and yet it didn’t. All I could do— along with the Hospice nurses, the caregivers who were with us until near the end, and my sister and brother — was keep her as comfortable as possible until her frail body, that mortal vessel, released her immortal soul. And what a beautiful soul it is. Mom’s radiant smile, and her love for everyone were beacons of hope and life for those who came to know and love her. She often asked me, “Where is God?” Now she knows the answer.

Our minister was with us early in the evening before Mom died, reading from the Psalms and praying, telling her, after we had all told her how much we loved her, that it was okay to rest. I firmly believe Mom heard and recognized my voice as I told her everything was going to be okay and that I loved her so much.

By this time my emotions were deeply buried as I struggled to comprehend and cope with the reality of what I was experiencing. I will never forget the stunned shock and silence when I came into the room at 2:30 am, and discovered Mom had departed, probably only moments before. Amazingly, my sister who was upstairs, and my brother who was at his house ten miles away, both said they, too, had woken at 2:30.

The next few hours were like some surreal dream, only it was real. I tried to keep calm and maintain my composure, but that didn’t last too long.

Here is what I wrote in a text to our minister that evening:

“The waves of grief come when I have images of Mom from yesterday. I can’t even adequately describe it. It’s a deep-down feeling of sudden grief and shock. But we are strengthened by adversity. I will be stronger, but I won’t ever fully recover from the loss of my mother. My whole life was centered around caring for her.”

The rest of the week I tried to keep as busy as possible. I wrote and delivered the obituary to the newspaper. I spent a good part of Wednesday and Thursday afternoon on the phone calling relatives and friends. I was astonished at all I managed to do with seeming clear-headed efficiency and thoroughness. Someone told me I was operating on adrenaline, and I guess that was true. Now it’s 4:30 on a Sunday morning. I want to sleep but I can’t. There’s too much to process in this totally different life I’m living now. And more than anything I feel compelled to write this final Dementia Journal entry. I want to describe the experience as faithfully as I can, but at the same time I don’t want to say too much. Believe me, I could go on writing for hours.

As I mentioned before, it’s a new life now. Almost literally everything is different. Mom had been in this house for 25 years. For the past ten years, I took care of her after leaving my apartment and moving in. I couldn’t have done it without our six part-time caregivers, four of whom were with us for six years or more. You can imagine how well I got to know them. They became like family. One of them was here Saturday, two days before Mom passed. She was strong and upbeat, laughed at my feeble jokes, and was absolutely wonderful with Mom. I often told her that when she was there, I felt unlimited optimism and that I could do almost anything to help Mom.

Needless to say, the caregivers were companions for not only Mom over the years, but for me, too. Now they are gone, except for the live-in caregiver/boarder. It feels very quiet and lonely at times. I keep looking at my watch, waiting on caregivers to come and go, or fixing a meal at set times if a caregiver has not arrived to do so. If I’m out shopping or walking I keep thinking I have to rush home by a certain time. It’s all very strange and disorienting. For the first time in ten years I have freedom and can live a somewhat “normal” life, whatever that is. Today, fully cognizant that I could work on my numerous projects, I read and browsed the Internet at my leisure and for as long as I wanted. Amazing!

This is a time when I’m deeply grateful for the good friends who’ve shown their concern, support and love for Mom and me over the years. One friend has sent Mom beautiful cards every month for years, including holidays. She is a dear friend of my mother’s late sister. Mom would always acknowledge each card with happiness and delight. A true friend if ever there was one.

Another friend from the church has visited faithfully every month for more then two years. This is what she wrote in an email:

“I have seen Sarah decline these past two years, and it has pained me. She, however, gave me an unbelievably glorious gift the last time I visited. She was awake most of the time, was cognizant, commented on and admired your beautiful pictures, and gave me her famous smile many times. I will keep that last visit close to my heart forever - what a gift!”

That visit was only a few weeks ago.

Determined writer that I am, and not knowing when we’d have a memorial service, I wrote a piece to read, a celebration of Sarah and what she loved.

It saddens me whenever I go in Mom’s room. It seems bereft and empty, yet there is a palpable sense of Mom’s presence. We’ve already cleared out supplies and items that reminded us of her infirmity and final decline. The hospital bed and oxygen machine were removed the afternoon following her passing. I’ve tended to much that had to be done the past few days. I haven’t let myself succumb to the grief I know may come over me soon with an unbearable heaviness. This, however, may not happen at all. I am at peace knowing Mom is in a much better place and state of being. Her soul lives on.

Our dear friend from church sent me a card and inside on a separate piece of paper were these words:

“Do not stand at my grave and weep
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond’s glint on snow.
I am the sunlight on ripened grain.
I am the gentle Autumn’s rain.
When I awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry.
I am not there. I did not die.”

To all of you who came here and read of my mother’s journey through the long tunnel of dementia and into the light these past seven years, my deepest gratitude. For your supportive prayers, thoughts and shared experiences of your own, I am more thankful than you can know. You helped keep me going. You lifted me up.