Read Dr. Milton’s Q&A below.
WAM: In your book, you speak about answering the call to become a caregiver to your mother both from the perspective of a daughter as well as a social worker. Given your complicated history with your mother growing up, it seems like agreeing to care for her once she got ill must have posed a challenge. Tell us a bit about your relationship with your mother growing up, and then how you managed to work around to becoming her caregiver.
Dr. Barbara Ella Milton Jr: I wrote Heeding the Caregiver Call: The Story of Barbara Ella Milton, Sr. and Alzheimer’s Disease not only to describe the lived experience of a black, lesbian woman afflicted with the disease and the lessons learned in caregiving and self-care, but to tell you of the amazing transformational power of love we found in the midst of the disease. It wasn’t so at the beginning of the journey. In fact, if you know about the heavy-weight boxers, Frazier and Ali, then you know about me and my mother and our relationship prior to the call she made for me to come to help her. My mother was the eldest daughter in a poor black family of 10 children growing up in Camden, NJ. Her role in the family, poverty and racism denied her a formal education in childhood. Homophobia denied her love and stable relationships. These were wounds that created rage.
She gave birth to me at the age of 14 and I was removed from her at birth. We failed to bond securely. I returned to her care at the age of 9 after living with my grandmother, my aunts and uncles as siblings. I expected love and nurturing from her but she was unable to give either. She wounded me and I raged too. I made the best of my mother’s hard work and emphasis on education and knew that was the ticket away from the source of my pain. l left home to go to College and only returned over the next 45 years for holidays, birthdays and funerals. We both were living our independent lives. My mother and I made attempts at having quality time, sometimes successfully; most times one or the other of us came away feeling hurt. Our encounters involved ducking and weaving from sharp jabs, verbal swipes and staking out emotional territory. Neither felt safe. Neither would show weakness. When she made that call to me in the fall of 2015, she said, “something is wrong with me, come here, I need you.” The tone and tenor of the call was shocking. Of course, I would heed the call but I drove to Camden with a heavy heart. She raised me with a sense of right and wrong. The right thing was to show up. It was my duty to show up. I told her that I would always have her back. She said to me, “I sure hope so.”
WAM: That was a serious shift in your relationship. How was that?
Dr. Barbara Ella Milton Jr: For the first time in my life I saw my mother as frightened, weak and confused. That was also a shock. Given my observations, I urged my mother to sign a Power of Attorney to allow me to manage her medical and financial affairs. She agreed but we both knew that she wasn’t going to concede control easily. There were lots of power struggles at the beginning with her constant reminders that she was the mother and I was the child. She was diagnosed with Alzheimer’s dementia and we began to see the unraveling of her cognitive abilities in real-time. She had awareness of her difficulties too and responded to them in the form of agitation, paranoia and denial. No one caught hell like I did – it seemed she saved it for me.
At the time I assumed the role of my mother’s primary caregiver, I was battling cancer. I still am. I have a chronic type of bladder cancer that requires a procedure every 90 days to look for and remove tumors. Most times I undergo some form of chemotherapy or treatment depending on the results of biopsy reports. When my mom was in my care, she accompanied me to NYC to a chemo session. I think that is when my mother got the fact that we were two patients battling two serious illnesses. It was a glimmer of empathy received from my mother. And I was grateful. I assumed more and more responsibility for all aspects of her life. Over time with the constancy of my presence and my ability to keep her safe and well cared for, she came to believe that I had kept my word to her that I would have her back no matter what. One day she told me so. That awareness shifted something for us both and ushered in a period of greater trust and less conflict. A fissure opened in our hearts and slowly but surely we let go of the pain of the past and pivoted towards living more fully in each precious moment we received. It was a blessing to feel her love as we traveled the road of the long goodbye.
WAM: You are a lesbian, as was your mother. What challenges faced you in the health care system for being Black women? And did you experience any additional hurdles for being lesbians?
Dr. Barbara Ella Milton Jr.: My mother was not an out lesbian and that may not have been as obvious as her being black. My mother internalized negative messages about being lesbian almost all of her life. From her family, her church and the society at large. She experienced violence that hardened her and lost loves which saddened her all her life. She was deeply closeted out of survival and for that reason, I don’t believe she made it known to her providers about her sexual orientation. That aspect of her was invisible. Like many in her generation, she had a distrust of the health care enterprise and for that reason, she tended to engage the system only when absolutely necessary. She was “old school” and I was of a different generation. I also was educated and wasn’t intimidated by the reams of papers that tended to be the byproducts of visits to medical providers. She took the measure of people from the way they looked her in eyes or how they responded to her jokes or bowling stories. Most times she would say, she probably wouldn’t trust them as far as she could throw them. The human connection is what my mother sought when engaging the system and it’s a pity our system is designed in a way that works against building real relationships between patients and providers.
My mother was affable, polite, funny and also she was a visual and tactile learner. When my mother suffered a heart attack and needed a pacemaker, I observed that she refused the procedure because all she heard were words that held little meaning to her. When the doctor left the room, I excused myself and cornered him in the hallway to explain to him that my mother did not understand what he was saying, that is why she refused. I encouraged him to go about it in a different way. I asked him if he had a video about pacemaker installations and if he had a model of a pacemaker that she could see and hold. I said that’s the way my mother learns and understands things. He thanked me. Then shortly returned with a model of the device and a video that helped my mother feel less anxious. In fact, she said, “oh, that little thing will help my heart. Ok. I will let you do it.” Problem-solved. It also didn’t help that my mother rarely encountered a medical professional who was African-American, further causing her to question if the system really cared about her.
The tide is slowly turning towards more inclusivity in health care and the LGBTQ movement has made gains in expanding the rights of same-sex couples. I will never forget the joy I felt when a newly modified doctor’s intake sheet included the words, Lesbian/Gay. It opened the door to some visibility by the system. We have far to go in the healthcare system that remains steeped in hetero-normative assumptions about their patients.
My mother and I had the following experience with an adult day care program manager. The Social Worker was explaining to my mother the kinds of socialization activities they involved their participants in and thought it was good to pitch to my mother the notion that they like to have dances and listen to music and pair up the men with women for these activities. Well, my mother shot me a look as if to say, “get me the hell out of here now.” I caught her drift and asked her to check out the kind of food on display at the cafeteria counter just across from the office we were in and that I would join her in a moment. I then took the time to explain nicely to the staffer that he almost had my mother signed up, but to close the pitch by pairing her up with men to dance wasn’t the way to buy her in because she was a lesbian and had a trauma history. I stated to him he might do better in the future to not assume his clients are heterosexual. We had a good discussion about that and then rejoined my mother. My mother enrolled, but it was a short-lived experience for her (respite for me) because she didn’t feel safe and didn’t feel seen.
WAM: Your mother had many chronic conditions, ones disproportionately experienced by communities of color, and ones that are recognized today as contributing to an increased risk factor for Alzheimer’s. Was there ever any discussion in your home or in her doctor’s offices that she needed to get her diabetes, hypertension and vascular disease under control—that they might make her vulnerable to dementia?
Dr. Barbara Ella Milton Jr: The only experience I had with my mother and her doctors prior to her diagnosis of Alzheimer’s was when she needed to have a pacemaker implanted following a heart attack. I remember that doctor discussing medication compliance and his pleasure that she routinely bowled and took walks at a local park. My mother was diagnosed with Graves Disease in her 30s and Hypertension, Diabetes, High Cholesterol in her 40s, Congestive Heart Failure in her 50’s and Alzheimer’s Dementia in her 60s. She also suffered from depression, social anxiety and PTSD–mostly emanating from childhood and living in black and lesbian skin. When I accompanied her to appointments and when I operated on her behalf with doctors, I do not recall any of them actively discussing or linking her medical conditions to dementia. I do recall them linking those diseases to her quality of life and to her longevity.
Once she met the Alzheimer’s specialist and was diagnosed in the middle stages of Alzheimer’s, we did receive information about diet, sleep, brain games and programs for socialization. He also emphasized the importance of medication compliance especially with the newest medication, Aricept. When I sought more information from organizational websites like WAM, the Alzheimer’s Association and a local group called the ACT NOW Foundation, I began to better understand the links and started to pay more attention to her diet, especially her intake of sugar and salts. In the beginning, my mother seemed to only want to eat dumdum lollipops, ice cream, fried eggs and take-out Chinese food. We used to have intense discussions about her diet and what she ate. Usually, they ended with her absolute denial of her health status and her accusing me of running a prison where she had no rights. At a certain point, especially as she started to decline more and more, so much so that she needed 24/7 care and moved into a nursing home, I gave up the battle and erred on the side of making her happy even if it meant buying her dumdums and ice cream.
WAM: Speaking as both daughter and professional, what did your experience teach you about the caregiving journey that you want to convey to Black women today? What makes their journey with Alzheimer’s unique?
Dr. Barbara Ella Milton Jr: Alzheimer’s may seem invisible but make no mistake, there are lots of people in the black community with Alzheimer’s and many over-burdened caregivers. If you are a caregiver, try your best to take care of yourself first. In 2015, when I assumed care of my mother, the tumors were only growing in my bladder. By mid-2016, the cancer advanced to my right kidney. This is a cautionary tale about disease progression for people in caregiving roles–the stress of inheriting another person’s life can be harmful to you and you must redouble efforts in self-care. No child is expected to be a martyr. This means we have to learn to ask for help from others. I started with family then had to rely on community supports. I felt like a conductor assembling and managing a symphony of help. It’s hard on one person. If you don’t ask, then you won’t know who can show up for you to provide assistance. There are wonderful organizations that provide invaluable information, resources and support. Call them. Use them. Support them. Most times the services are free. Lord willing, we all get to experience old age and we have to be better at planning for it.
If you are working, invest in a catastrophic health insurance plan in case you need time off from work to deal with the acute onset of Alzheimer’s or any other life-altering illness of a family member. Plan for it, talk to experts related to your home, your assets and your long-term health care/ living needs. If you are poor, as in our case, learn about social services and Medicaid because that’s the only insurance plan in our country that will help poor folks out when we need in-home and in-community support. Those programs can be improved and elected officials have the power to do that. This personal illness is political and we have to advocate and engage in that arena too. We have to move toward trusting the medical establishment. We have to make sure we make appointments and get our loved ones the medical care they need. We have lots of historical reasons to hold a reserve of distrust with doctors and researchers but take the chance and get the medical help your loved one needs.
Figure out a good system to keep track of the information along the way. There are apps for that now, but a good old fashion notebook will work fine. I had regrets about things I didn’t do with my mother, like taking her to the US Open Tennis Tournament while she was still walking and able to enjoy it. Do the things that you know your loved one will enjoy while they can. Also, plan for their funerary wishes. Those are difficult but necessary conversations. Had I cremated my mother I do not think her spirit would rest in peace, she was adamant about her whole body being buried in the earth. I am glad she and I discussed her wishes including the kind of casket and clothing she wanted, the elements of her service, the kind of food she wanted at her repast and burial wishes. We discussed it all and I documented it all.
Lastly, attend to your spirit. Alzheimer’s has been described as the long goodbye and I understand that so clearly. Caregiving is as heartbreaking as it is backbreaking. Seek solace for your spirit. For me, prayer and meditation and fellowship made a huge difference in my being able to cope with the role, the role reversal, and the eventual passing of my beloved mother.
WAM: You say “Hate Alzheimer’s, but love the person with Alzheimer’s.” Tell us about how you came to love your mother more fully as a result of caring for her. Was her journey through the disease of Alzheimer’s a means of healing the trauma of your relationship?
Dr. Barbara Ella Milton Jr: As a caregiver, you will witness your loved one say and do things that are unimaginable–garbage in the fridge, burning food, cursing you out, obsession with bodily fluids and constant questions about what this is or that is. As they cling to vestiges of control they can become argumentative and combative. They can become agitated and aggressive and it is important to keep both you and your loved one safe, by any means necessary. It is easy to lose sight of the fact that these are symptoms beyond their control, they are doing their best and nothing they say or do is personal. They are not a good person turning bad, they are a sick person who will not get well. It took a while for me to get to that realization and when I experienced that level of radical acceptance it made all the difference in the world.
Before the caregiver experience, a less mature me tended to mostly attribute negative characteristics of myself to my mother. In other words, I would say, “Oh there’s me being hypercritical, just like my mother.” (Or “there’s me being mean, just like my mother.”) But the gifts I received from the day-in and day-out engagement with my mother for almost 5 years were to really see her for who she was and to have greater context for her rough edges and shortcomings. I also learned more of mine. I knew better about her battered self-esteem and rage and came to know she did the best she could at the time she was raising me. I became acquainted with her frailties and her grief and her ever lingering desire to be loved. I began to see my mother for the first time as a whole, a complex and beautiful person.
We were drawing closer and closer as days passed and I came to realize I have a lot of positive traits that were similar to traits of my mother. I learned that I was her apple and she was my tree. When my mother birthed me, which was a traumatic experience for us both, I was to be called Sonia Denise, but she forgot that the moment the nurse asked for my name for the birth certificate. With little thought and exasperation, she said, “Oh hell, just name her Barbara Ella Milton and add ‘Junior’ on it so people know she ain’t me.” This is why I claim,” Jr. “ in my name today after rejecting it for so many years of my life. Today, I am intentional about it. I am Barbara Ella Milton, Jr. and I am proud to be her daughter. Life wreaked havoc on her self-esteem. Rejection of her lesbianism caused her great shame. In the end, she wondered if God loved her for whom she loved. I promised my mother on what became her death bed that I would write a book to tell her story and that I would shine a light on her so that people would see this smart, resilient, black, lesbian, working-class woman and love her as I do, as God does, for exactly who she was. May her story be a blessing to all who read it.
For more information about Dr. Barbara Ella Milton, Jr. www.drbarbaraemiltonjrlcsw.com