Thursday, December 11, 2008

Ambiguous Loss

Caring for someone with Alzheimer's is like descending a staircase. At each step you encounter a new crisis, learn to manage it and move on to the next crisis. Each new crisis rips away more of the sufferer's independence and dignity. Mom's and my experience with Alzheimer's is no different. The first crisis occurred when Mom got lost driving to my home. She drove right past the exit and ended up miles away. Thank God she had enough of her faculties left and she pulled over at a fire station and called me. I knew exactly how long that drive should take Mom so when she hadn't shown up, I lost it. When we finally were reunited we hugged each other so hard and cried. I was so scared that I would never see her again. Several years earlier a woman with Alzheimer's had left her home for her cabin and had never been seen again. That story kept running through my mind. The next crisis for us was when she moved in with me and I realized that her dementia was more advanced than any of us had thought. We've met each crisis head on, dealt with it and moved on to the next one. The most recent crisis occurred when Mom moved into CB and soon afterward was assessed for hospice. As Alzheimer's caregivers, we experience something called ambiguous loss. As author Pauline Boss states in her book Ambiguous Loss "This roller coaster of absence and presence is a very stressful kind of loss— ambiguous loss. Unlike death, there is no closure, no official validation, and sometimes little community or religious support. You feel you are left to cope on your own; even the strongest caregivers feel anxious and depressed. The challenge is to learn strategies to cope with this ambiguity that is so much a part of memory loss." I have been reading her book and have found it helpful in my struggle with my feelings about the challenges we all face with this diagnosis. Each day is different; in the beginning, there are more good days than bad days. Then the tide turns and the bad days begin to outnumber the good. Our loved one slowly slips away from us day by day, week by week and moment by moment. It's heart wrenching to live this way as we try to keep up with the pain and emotions. And we watch our loved ones, in their confusion, try to understand what is happening. Our hearts break and we are thrust into a new phase of our life. In my case I was forced to grow up and become the caregiver for Mom, the woman who had always been my rock, my best friend and most of all my mom.


jutka said...

What a beautiful posting! I went thru the same with my dear husband during the last 10 years of his life, and I know what you both experiencing, step-by-step, crisis to crisis.
Have you ever watched the movie "Notebook"?

Lily said...

Its heartbreaking. I wish I could wave a magic wand and make it all better for you x

J said...

This puts into words much of what I feel and what's going on with mom. I can tell that she has gone another level away from herself. She's not 'herself' more often now. She's more in another life of mixed up memories.
Thanjks for this post and I'm going to look for that book.

Mary Emma Allen said...

A lovely post that expresses so well the bittersweet aspects of caring for someone with Alzheimer's. I tried to look for the small joys involved in caring for Mother and Auntie. That helped get me through and created many memories that sustain me now. (Mary Emma from Alzheimer's Notes)

~Betsy said...

You sum this whole process up perfectly. Stay strong.

cornbread hell said...

i'm seeing my mom drift further away day by day, week by week. it is freaking me out to watch her fade.

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