Mo with her beautiful mother - August 1976
I met Mo during my freshman orientation at Spelman College. She was our student leader. Of striking beauty and determination, Mo was a force on campus - with a focused walk, bright smile, and energy that just made you want to follow to see where she was going, and what she was doing, next.
By the fall of 2010, all Mo's strength was being called to the fore, as she faced her mother's unexpected medical crisis and found herself thrust into the world of caregiving and advocacy.
The National Alliance For Caregiving reported in their 2015 study, Caregiving in the US, there are nearly 40 million adults providing unpaid care for an adult or child in this country. As part of this research, a "profile" of the typical caregiver emerged.
It was found that the typical caregiver is female, about 49 years old, and is caring for a woman around 69 years old who has a chronic illness. It is common for the caregiver to provide assistance with bathing, dressing, errands, management of bills and finances, and to provide various nursing tasks like taking care of wounds, giving medicines, and providing injections. Despite the fact that this caregiver typically works a full-time job, they provide care without the assistance of paid help. Only half have the assistance of other unpaid help.
Inspired by her mother's tradition of love and fortitude, and her father's unending partnership and support, Mo walked the path of caregiving for her mother - until her passing in April 2018.
This is her story.
More Than a Diagnosis
Mo's mother, Jan, retired from work in September of 2010 at the age of 62. At the time, Mo was living in her hometown of Detroit in fair proximity to her parents. She made the decision to return home in 2007, partially because she anticipated they would eventually need her support as they aged.
Within 2 months of her mom's retirement, though, Jan was hospitalized for complications from undiagnosed diabetes mellitus, requiring a week-long hospital stay. It was during that admission she disclosed to doctors she had been experiencing other medical concerns. Their evaluation confirmed she was facing uncontrolled diabetes and endometrial cancer. Within the month, she would have a hysterectomy.
Mo and her father found themselves in an instant, intense storm of caregiver concerns. On one hand, was the responsibility to research the medical challenges Jan faced and to advocate for her best interests relative to her health care and legal/business affairs. On the other hand, was coping with the difficulty of medication compliance, managing adverse medication reactions, and pushing through 6 months of repeat hospitalizations and treatments.
"I knew it was going to be a long journey," Mo recounts as she remembers how her mother's fear of needles and general avoidance of doctors complicated the picture and may have contributed to more advanced disease. Things became more complex when her chemotherapy had to be discontinued with two sessions remaining due to the side effect of peripheral neuropathy - causing painful sensation changes in her extremities. Nonetheless, her endometrial cancer went into remission and remained there for 4 years.
Jan worried terribly before her monitoring appointments. "She was a nervous wreck," Mo says. So, she attempted to help by providing her motivational messages and giving her the reassurance that "whatever it is you need, we got you." Candidly, Mo shares a story of a time when her mother's level of anxiety was so elevated prior to a pending surgery that she had to physically go to her parents' home, ask to be alone with her mother, and prayed fervently. "I tried to keep her grounded and focused on her faith walk."
During one of her biannual monitoring appointments, doctors realized a suspicious lymph node in Jan's groin had grown and was beginning to change. The cancer had returned and its location limited viable treatment options.
To Shatter Limits and Get it Done
Once the cancer came out of remission, doctors pushed for an aggressive onslaught of radiation and more chemotherapy. However, Jan's body struggled to hold up to the strength of the treatments. Mo, who had been planning to sit for a major examination for her career, says she had to "change course." She admits being scared and overwhelmed by preexisting work stress, but coped by going into "business mode," focusing on completing tasks, and staying educated on her mother's needs.
Mo eventually moved into a home next door to her parents that had become vacant. She had tired of driving past her home after work to stop by her parents' home to help with meals and other care for her mother. Though they always made sure her mother's needs were met, it was easy for Mo and her dad to forget about their own needs at times, as Jan's care needs expanded. "There were days where we literally did not eat," she recalls, "but there was no way she was going into a facility."
Mo and her father worked around the clock to care for Jan. They stayed focused on helping her maintain her dignity, keeping her showered and as comfortable as they possibly could - though her mobility was waning and her pain was continuing to mount. At one point, the family pursued a medical consultation for pain management. The wait time to get an appointment was 6 weeks.
Mo says one of the most devastating moments of her mother's journey was seeing that the hospital bed they worked diligently to obtain failed to provide adequate comfort – Jan could not lie down due to the location of her tumor.
Jan's favorite flower, brought to the home by a family friend on the day she received the hospital bed.
She was eventually able to lie somewhat once she became bedridden, Mo recalls, offering her mom this encouragement, “the silver lining of having become bedridden is that you can now lay and rest more.” Sadly, her mom agreed, she was nevertheless dejected by the total loss of her independence.
Jan had pushed herself to maintain her independence and was reluctant to ask for help. However, Mo says there came a point where she had to begin to assist her mom despite the fact she never asked. Dressed in a bathing suit, she would join her mom in the shower to be sure she wouldn't fall. "I had to take a more proactive role," she remembers.
When going up and downstairs was no longer possible, Mo and her father creatively turned their kitchen into a shower - as their home did not have a first-floor bathroom. Jan was also using a bedside commode that was cleaned per use, requiring them to run up and down the basement stairs daylong.
In Mo's Own Words:
"This was the first iteration of how we showered Mom after we had to create 1st floor accommodations for her in Jan 2018 (no 1st floor bathroom). Every other day she got a shower. We ditched the shower chair early on and just wheelchaired her in.
It was a process, 3-4 hours from setup through shower, to sanitizing chair to be wheeled out, to dressing, to collecting water then mopping plus dry time, sanitizing sinks, swapping the fixture hoses, and laundering all those water saturated towels. There was a science to the process. It required both me and Dad, who would help her stand at the end to shower all essentials. And we both had to shower ourselves afterwards.
We did this without hesitation bc it was one of the most relaxing things we could offer Mom. Her pain was through the roof and her mobility limited more daily based on the location of her tumor in her hip/groin area that was eating into muscle and bone. We did this from Jan through late March until she became bedridden.
Caretaking requires people to shatter limits and get it done! Shout out to all those caretakers I know. May God always strengthen you! 💖 For caretakers whose job is done, much love and healing! 💖"
In the Land of the Caregiver
Throughout Mo's journey, she relied on the love and space created for her by her father, her sorority sisters, several close friends, and those she calls "chosen family." And even with their support, Mo admits that every area of her own life suffered under the stress of caregiving. "My self-care suffered tremendously," she shares as she remembers it was a struggle to find time to shower, keep her hair cut, eat adequate and healthy foods, and to maintain her usual work style.
There were times when Mo's father encouraged her to go home for rest, especially if he could see fatigue making her irritable. But Mo wanted to be available, to help comfort her mother in any way she could, even if just with her presence.
Mo keeping her mom company, with the help of their family dog.
Mo also shares that as her mother neared her transition, a particularly exasperating stressor worked its way into the picture - having to manage familial intrusions into their trio’s management of Jan's end-of-life care.
All-in-all, Mo was exhausted and facing her own pain, which she wrapped up in perseverance and anticipatory grief. "By the time Mom entered her last days," she shares, "we had been grieving her for years."
Jan passed at home after some time in Hospice care. As a family they decided not to officially announce when Hospice care was initiated. They instead instituted a daily 7 pm prayer conference call and updated loved ones that all 5 of her treaters had exhausted all treatment options.
Her transition came after a valiant fight with not only the cancer and pain that riddled her body, but with the fear and realization that Jan's life in this form was coming to an end. Mo admits her mother's last days were not peaceful or full of heartfelt goodbyes. Instead, she watched her mother fully withdraw as Jan came to terms with her own mortality, "it was just heartbreaking, Mom could not say 'goodbye.'"
Jan's passing was physically and emotionally brutal. Mo and her dad were left to protect the vestiges of her personal dignity, which was of the utmost importance to Jan. It took three days for her to complete her transition. In the meantime, visitation was discontinued because everyone's presence seemed to make her agitated. In fact, her last visitor left expeditiously given the amount of distress they experienced due to Jan’s heightened agitation.
In the end, it was Mo who administered her mother's final morphine dosage - an act of great love and courage.
Immediately following Jan's passing, Mo moved quickly to remove reminders of their harrowing ordeal from their home. Instead, she chose to remember her mother for the warrior woman she was as depicted by Jan's brother in his 1971 painting of Jan beside a black panther. Mo loved this image that she only found in 2015 after Jan finished radiation treatment. She bonded with her mom’s painting because she has a tattoo of a black panther, representing strength and femininity.
After Jan's passing, Mo and her dad were relieved she had been released from her suffering. There was also the realization that the caregiving mode is distinctly different than the post-caregiving mode and need for healing. She is now 19 months into that journey.
Taking the Journey: The Best Advice
When you're on the journey of caregiving, working alone or in isolation is not sustainable, and can be detrimental to your emotional and physical health, and financial well-being. 1 in 5 caregivers notes a decline in their health. However, this number is much higher when the care recipient is a spouse or parent, or the number of hours devoted to caretaking is more than 24 hours a week. 1 in 5 caregivers also report financial strain - which is exacerbated by issues such as co-residence with the care recipient, living more than an hour away, caregiving for more than a year, or being a primary caregiver.
Mo suggests recruiting a support network to provide both spiritual and practical assistance. "Get your prayer warriors, and you also need your 'hands-on' tribe." Even though your loved one may have privacy concerns about having a "team" come in the home to care for them, it's essential. "You want to have a bona fide support...you don't want to be burnt out during or after, or you'll be facing financial ruin."
The reality and beauty of experience is that, if you let it, it can give you strength and wisdom to help others along their way. Such is the case for Mo and her father. Her main recommendation for caregiving is simple, but at times difficult to execute, "Lean in to your tribe."
Mo tributes her mom on Mother's Day 2018, shortly after Jan's passing.
Mo shares her story with us today to inspire, encourage, and support others who are facing some of the same challenges she faced over the years of advocating and providing care for her mother. She is also thankful that her dad was hands on every step of the way. November is National Family Caregivers Month and this is an offering for all those who tirelessly put the needs of their loved ones first - at the hardest times of their lives.
Hope Grove Psychiatry would like to sincerely thank Mo for her amazing transparency in telling her story of caregiving. We know that when we are courageous enough to share our stories, we lend strength to others.
We hope today's post has proven helpful to those of us caring for others, and for those of us who know or love a caregiver.
M. Christian, JD owns a consulting business focused on helping attorneys create more efficient and profitable practices and individuals organize and manage effective nonprofit organizations based in Detroit, MI, her hometown. She is a natural leader who is passionate about advocating for others and brings a unique blend of personal and professional experience to her work. Mo provides her clients with a holistic experience because she believes that you must "be humanity" in every interaction.
National Alliance For Caregiving
CaringBridge - A CaringBridge website is a personal health journal, rallying friends and family during any type of health journey.
2015 Report: Caregiving in the US by AARP
Alzheimer's Disease and the People Who Care: Support for Our Nation's Caregivers