09 May 2019

Memory Loss: Coping and Caring

Carol Goldman’s Focus Talk in the Spring 2019 WomenExplore Series “Am I My Sister’s Keeper”, May 9, 2019 on the topic "Memory Loss: Coping and Caring".
Bio: Carol Goldman discovered WomenExplore in 1986 when someone referred her to a lecture entitled “Why There Are No Women in Jewish Mysticism”. She was drawn to the group by the creativity, intelligence, and friendliness of the participants, the wonderful series, and the leadership of Elizabeth Dodson Gray aided by her late husband, David Dodson Gray. Carol has participated in the group even since. She has served on the board, given several focus presentations, created rituals, and written about the WomenExplore process for publication. She currently facilitates the planning sessions for developing next year’s series and assists with our bold visioning initiative. Carol is a visual artist, a storyteller, and a mental health advocate. At Logan International Airport, if you go to the gallery on the departure level between terminals B and C, you will find a picture of Carol on a 6-foot-high banner as part of the Deconstructing Stigma exhibit. One can also access the exhibit online at DeconstructingStigma.org.
     Julie Magid Brody, right, and Carol Goldman, left,
      in front of the program-themed arrangement by WE member, Lindsa Vallee
When the planning committee of WomenExplore selected the topic  “Memory Loss: Coping and Caring” for this series “Am I my Sister’s Keeper?”, I volunteered to focus.  I thought I would talk about my sister-in-law who died recently at age 61 after 8 years of living in a nursing home because Alzheimer’s had impaired her functioning.  I would talk about my mother-in-law who died at age 97 in a locked unit in a nursing home because her dementia impeded her from staying in the more independent settings she had known.  In each case, the women had lost their memory and most of their ability to communicate with others.  It was upsetting for me to see their deterioration.  I felt sadness and loss.  When I was with them, talking to them, and showing them photos of events in their lives, I felt I was doing what I could.  But I was not responsible for the complex decisions about their health care.
Then something totally unexpected happened which brought this topic home in a radical way.  I want to tell a true story to address the complexity of “Am I My Sister’s Keeper?”
Ten years ago, a dear friend asked me to be her health care proxy.  She said she did not have family or friends in the area who could take it on.   I agreed.  I did not ask her what it involved or what her concerns were if she were to get very sick.  She did not document her wishes.  I agreed because I wanted to help my friend. I had known her for over 45 years.  She introduced me to the man who became my second husband.  He helped me raise my two young children from my first marriage.  My friend and I celebrated many special events together. She was well educated, healthy, living alone in low income senior housing, and highly functional when I signed the proxy.  I imagined we would discuss her wishes at a later point.  
Then two months ago I was at the helm of a disaster.
I got a call from a prominent hospital in the area saying my friend had fallen.  When she came to the hospital, she listed me as her health care proxy.  She seemed confused and the doctor wanted me to sign off on the place they would send her for rehab.  I did that.  I visited her in rehab.  She was disoriented but recognized me, sat up, and engaged in physical therapy.  A week later when I visited, her memory was gone, and she said few words.  I met with my friend and the social worker regarding discharge.  The social worker stated that the only option was to send my friend home with supports in the community.  The social worker said my friend would have to pay out of pocket to stay in the current rehab or a nursing facility.  I knew my friend had limited funds.
I wanted the rehab to send my friend for a physical test. She could not be alone.  She had no memory and could barely speak.  I felt frustrated.
Finally, the day before she was to go home, the rehab sent her for a brain scan.  After the scan, she was rushed by ambulance back to the emergency room of the prominent hospital.  Apparently, the tumor had been there a long time, but had grown.  A doctor called me to say that my consent was needed for immediate invasive brain surgery for my friend to survive.  She hoped my friend would recover her functioning but did not specify what that meant.
During my decision-making, my friend’s brother called me. He had called his sister but had not gotten an answer.  He had my number.  I told him what was happening.  He said he did not want to be involved because he lived far away and had serious medical problems.  He trusted my judgment and appreciated what I was doing.  He was not able to be his sister’s keeper.  I agreed to keep him informed.  
I talked to the doctor about the risks and benefits of the brain surgery.  Given what I learned, I consented to the surgery over the phone.  I also consulted with the anesthesiologist who needed my permission to proceed. The doctor then called me to inform me my friend made it through the nine-hour surgery and was in intensive care.  I visited my friend there.   She was hooked up to tubes and machines.  A few days later, I was told she needed an invasive brain procedure to heal. I researched, talked to the specialist, and gave my consent.  Then a doctor stated my friend lost the ability to swallow.  I agreed to another lifesaving procedure.  I called the nurses in charge of her care regularly to get updates.  I spoke with social workers, doctors, and care managers about next steps. 
I recently consented for my friend to be treated in a temporary acute rehab.  I was contacted by professionals about her background and options for treatment.  I visited her.  I could not tell if she recognized me.  She did not talk. Last week, the doctor told me he that he is pleased that she is saying a few words in an appropriate manner.
Some of her friends found my number and contacted me.  I updated them. They agreed to visit.  Some of her relatives who lived out of state contacted me and want to be updated.   
I feel obligated to be my friend’s keeper because I agreed to be her proxy.  I inhabit this profound sense of responsibility. The constant whirl of urgent decisions is stressful.  I trust my friend would agree with the decisions I made on her behalf.  I wish she had memory and communication skills so she could reassure me.  
My middle-aged children live far away.  My husband relies on me to help with his serious medical and emotional needs.   
 In going through these decisions, I have concluded that I want to view myself as if I were my own sister.  I would take care of my sister and make her a priority.  I would assess trade-offs between my schedule and hers.  This is the path I followed in responding to my friend Thelma.  
I now claim this perspective for myself.  My life is important.  I establish clear boundaries.  For example, I stated, when asked, that I could not pay my friends's bills or accompany her to appointments outside the rehab.  I moderate the conflicts between the needs of my friend and the needs of myself.  I am 79 years old.  I have a mood disorder and various physical vulnerabilities.  I want to be my keeper while I am able.  I want to avoid resentment and battle fatigue. 
I honor the support systems for body and spirit that I have lovingly put in place such as participating in WomenExplore, getting massages, traveling to far-away destinations, and participating in religious retreats. 
I have come to the painful understanding that I cannot be my sister’s keeper without being my own keeper as well.
The main lecture was given by Julie Brody Magid, clinical director of the McLean
 Memory Disorders Assessment
 Clinic and instructor in psychology at
 the Harvard Medical School.

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