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.

Aging in Place: Living in My Own Home as I Grow Older

Photo: Karen Sheahan

Focus talk given on 19th April 2018 on the topic of "Aging in Place: The Village Movement"
      —Carol Goldman



Carol has been a member of TOP/WE for 40 years. She has served on the board several times. She has often led the planning process for creating upcoming series. She has given several focus talks. She has authored a chapter in the book "Sacred Dimensions of Women's Experience". She is an exhibiting artist; she has created and presented stories of women in the scriptures; she is well known as a mental health advocate.


     I want to share thoughts about where I want to live as I age. I welcome the inspiration of Atul Gawande’s 2014 book Being Mortal: Medicine and What Matters in the End (New York, Penguin Books, 2014). Atul is a surgeon at Brigham and Women’s Hospital in Boston. He regrets that older individuals often do not get information that would enable them (and their families) to make appropriate decisions about their medical treatment and locations where they might live. Atul writes that he was grateful that “how [his grandfather] wanted to live was his choice. … For most of human history … elders were cared for in multigenerational systems, often with three generations living under one roof. … [The] elderly were not left to cope with the infirmities of age on their own” (pp.16-17). Now “choices for the elderly have proliferated” (p. 21).
     I am seventy-eight years old. I own and live in a duplex townhouse condominium in Watertown, MA. The condo complex has twelve units grouped together. I pay a condo fee every month. The condo association arranges for landscaping, shoveling, and other management details. My neighbors and I look out for each other’s condo when we take trips.
     I have gone through a decision-making process. From my current perspective, I am clear that if I am physically and emotionally able, I want to continue living in my condominium as long as I can.
     Several factors determine my decision. Whatever one’s decision, there are tasks and arrangements that may need to be carried out now. I often feel overwhelmed as I outline these steps. As I reviewed what I had written for today, I wondered if I could and would carry out the tasks needed to help me achieve my short and long-term goals.
     I hope that each person will go through their own decision-making process.
     I have been married to my current husband, eighty years old, for forty-five years. We have lived in the condo for forty years. We brought up our children in the condo. The children moved out in various stages before they attended college.
     My husband has developed many physical issues. He recently underwent three hospitalizations for different reasons and stayed for twenty-eight days in-patient at a treatment center in Brighton, MA for rehabilitation of a dislocated shoulder.
     My attempts to carry on conversations with my husband about where we might live as we age have met with brief responses. My husband thinks that he will die soon at home or in a hospital and does not need to go through an extended decision-making process. I estimate living for fifteen more years. He stresses his concern that running the condo without him would be a strain on me. He wishes I would consider a continuum of care option starting with independent living (that would have assisted living and nursing care facilities on the same campus). That option does not appeal to me; I am competent to live at home alone and arrange for help and companionship as I need it. I want to have as much independence as possible and make informed decisions about my own life.
     I am currently competent to live at home alone.
     To enter the condo from the street entrance, you go up three steps from the ground. Inside the condo has three levels. The ground level has a half bathroom, a kitchen, and a combined living/dining room area. There is a small outside back porch with a big shared back yard. The full bathroom, linen closet, master bedroom, and two small rooms are on the top level; you go up a large flight of twisting stairs to get there. In the basement are the washer/dryer, file cabinets, book shelves, a storage pantry, closets, and two desks with large personal computers; you go down a steep stairway to get to the basement.
     When I had both hips replaced starting in 2010 (four years apart), it was a struggle to get up the stairs to the bedroom. I stayed in a rehabilitation facility until I could climb the stairs. I have several accommodations in place like grab bars in the shower, bars on the raised toilet seat, and banisters on the stairs. If I were older and living alone, I might rearrange the house for more compactness.
     We decided not to do work inside of the house. Last year we had all the windows in the home replaced for safety and efficiency measures. I might have other work done on the house if it would be useful to me.
     Over the years, my husband and I have accumulated a lot of “stuff”. After a lecture in a WomenExplore Series dealing with the importance of confronting one’s stuff, I found a center that focuses on the skills useful for dealing with hoarding. Since 2012, I have attended various classes and groups on de-cluttering. I hired a woman who specializes in downsizing to come to my home and help me with this challenge. Working together, we have made progress in sorting and discarding items. Organizing my stuff is a priority. I want there to be room for providers, service people, companions, family, and friends to visit my home. Now I meet most people outside my home. I do not want to be isolated as I age. I want to ensure that my home meets safety codes. I want my condo to be accessible to me as I become more restricted physically.
     The accessibility of my home is a factor in its suitability for me as I age.
     My fifty-year old son, a lawyer, lives in San Francisco, CA; he travels extensively. My forty-nine-year old married daughter lives in Boulder, CO with her two children, ages seven and ten. Both of my children lead very busy lives. I wish to stay in my home in Watertown.
     Every few months, I meet with my younger brother, who lives nearby, and have informed him of my wishes. He has agreed to help me manage my over-all living arrangements if something happens to my husband and if I request help. My cousin has agreed to be a back up to my brother. My brother and cousin have both agreed to be my health care proxy and durable power of attorney if needed.
     We regularly visit my husband’s family who live in the Nahant, MA area. I attend occasional functions hosted by my own family who live in the Newton-Brookline area. I feel that running my home as I age will be my job with help as needed. My local families will undertake minimal hands-on tasks and social visits.
     Availability and interest of my family is a factor in my choice.
     Financially, because of a trust, social security benefits, and long-term financial investments made with my financial planner in conjunction with my husband, I have the money to pay for several choices which could be very expensive.
     I am financially secure in exploring options.
     I have a very active life in my current location. Although I do not drive, I utilize the local taxi services. I go as a helper when I travel with my husband, who qualifies for the MBTA Ride.
     I utilize several medical and mental-health professionals in this area. When they retire or leave, they refer me to excellent replacements within their departments. I am happy with my extensive body-work practitioners nearby: my personal trainer at my athletic club, my physical therapist, my chiropractor, my massage healer. I appreciate the familiarity and consistency I have with my providers.
     I have made several friends in the Boston area with whom I maintain active relationships.
     I like having my Watertown condo as my “home” base. I enjoy traveling and attending retreats. I will continue to travel as much as I can.
     Location and transportation options are important to me.
     I have belonged to several communities for over forty years: My husband and I participate in a Reform Jewish congregation in Belmont, MA. We attend services, classes, and special events. I belong to a separate more participatory Jewish Renewal congregation in Waltham, MA which I attend on my own.
     At WomenExplore, I have created rituals, delivered written and oral presentations, served on the board, led lecture-planning and Advisory Committee sessions. I currently answer any telephone enquiries.
     I regularly attend my Wellesley College Class of 1962 and my Newton High School Class of 1958 reunions.
     Local community is important to me.
     I thank the WomenExplore Advisory Committee for including the topic: “Aging in Place” as part of our “Exploring…” Series. I have resisted thinking about my living arrangements as I grow older. This topic has helped me clarify my priorities. However, I am reassured that there are several programs and resources available to me on this upcoming journey.