Dementia Grief – A Unique Experience – From My Journal

An entry from my journal – Saturday, May 13, 2017

by Richard R. Blake

Dementia Grieving

Today I talked to a bumble bee. Well maybe not a real conversation, I talked. He buzzed. I directed him to the red colored nectar in my humming bird feeder. Never once did I see his wings stop. I wondered if he, as I do, ever experienced shortness of breath. He left me to ponder this as the sun peeked out between the clouds in an unpredictable pattern above the trees.

I continued in my reverie as I relaxed in my pre-father’s day gift, a “slider rocker” stationed on our deck enjoying the peacefulness, and the stunning back drop of trees that surrounded me.

My thoughts turned to Thelma. She is fragile now, weighing less than 100 pounds. Attentive to my gentle words of encouragement, I softly urge her to share her thoughts with me. Her smile is my reward. Her way of communicating, “I do love you, Dick.”

In the midst of my loneliness, I sense the quiet gentle whisper of the heavenly father, through the cooing of a mourning dove.  I look up in awe at the thought of His waiting, too, for me to respond, maybe with a soft smile to acknowledge my love, and the awareness of His presence.

The shrill of a redwing blackbird, at the birdfeeder, calling for his mate, became another reminder of the wonder of God’s creation, and of His desire for our fellowship. The bumble bee returned, buzzed at me, flew on by, destination unknown.

I am now addressing the bee as “honey” as I smile – contentedly alone – but not alone. Thelma and I are still sharing the miracle of life, and I want to treasure these remaining days, weeks, months, or years, one day at a time.

~~~~~~~~

Alzheimer’s research and independent studies reveal a relationship of pre-death grief in the experience of dementia caregivers. These studies address issues of ambiguous loss, as this relates to the grief process brought on by stress, the burden of caregiving, and the consequent tendency to develop depression.

Ambiguous losses include the loss of friends, loss of social life, loss of flexibility, loss of aspirations, and the loss of hope. [i]

In the early days of our journey questions by well-meaning friends often threw me off guard. Questions begin with “Are you aware of Thelma’s (implying Thelma’s advancing stage of dementia)?” were asked at social gatherings or in a group setting including Thelma, I became deeply hurt or offended.  How could I not be aware? I lived with Thelma twenty-four/seven.

I tried to cover for Thelma’s inadequacies in similar groups. We both became pretty good bluffers. However, it became increasingly difficult to enter into meaningful conversations as the “breadth” and scope of our world continued to shrink.

I began to withdraw. Soon we were foregoing church dinners for our own private dinner dates at Denny’s, or the “all you can eat buffets.” Our dates often included a quick tour of the Dollar Store or grocery shopping at Safeway. I begin to withdraw.

Getting together with the family has taken on a new dimension.  The great grandchildren’s enthusiasm, high energy level, giggles and laughter bring pure joy. Fast paced conversations, catching up on family news, and lots of delicious food, are all important.  Little by little I am get recognizing a unique sadness, a missing piece, so close to my heart. Thelma is not with us. I miss her dearly.

Now that Thelma is in an Assisted Living Care Facility, I face new challenges. In social gatherings, I am no longer able to include Thelma. I become envious of those couples who sit by side by side with their wives in comfortable conversation, and I am guarded in my conversations with women in the group who have lost their mates.

I try to compensate for these loses by reaching out to others in the community with a sincere smile, a word of encouragement, expressions of appreciation, sharing a current story of ways Thelma can still express her love, her simplest needs, or maybe a humorous observation of how I may have displeased her in some small way.

Thelma’s example has taught me to recognize that there are no strangers in our world, only unintroduced friends.

I am intentional about building a balanced life, by putting an emphasis on the physical, mental, spiritual, and emotional prerequisites of a well-rounded whole being. I keep hope alive by setting new goals, enjoying the natural beauty of Southwest Michigan, the lake, the wonder of the changing seasons, and I try to compensate for the demands of caregiving through the flexibility of retirement, the gift of imagination, and the rewards of self-discovery.

A positive look at these ambiguous losses have given me new hope, challenged me to be alert for opportunities that will nurture emotional stability, spiritual growth, and creativity. I continue to remind myself that caregiving is love in action.

~~~~~~~~~~~~~~~~~~~~~

Questions to consider:

  1. Have you found it harder to stay in touch with friends? How has this impacted your sense of loss?
  2. How do you meet your social needs?
  3. How have you built flexibility into your heavy responsibilities as a caregiver?
  4. Do you still have dreams, a “bucket list” for the future?
  5. Did you see yourself in my reverie and observations of the birds and the “honey bee”? Or did you feel, “I think Richard is in serious need of therapy.”
  6. How do you keep hope alive in these difficult days of “grief” over ambiguous loss?

[i] Ambiguous Losses come with Caregiving, Harriet Hodgson

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One thought on “Dementia Grief – A Unique Experience – From My Journal

  1. I loved how Thelma would greet me every time she saw me like she hadn’t seen me in years. I have always felt so loved by you two.
    I love and miss you both

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