At 71, my grandfather was diagnosed with amyotrophic lateral sclerosis (ALS), a motor neuron disease involving rapid and progressive deterioration of voluntary muscles. At the time of his diagnosis, he was given a prognosis of 3 to 5 years. He battled ALS, however, for 12 years. He maintained a great deal of strength until the last 2 years and could walk, talk, and eat for most of his illness. As my grandfather required more help with activities of daily living, my mom, grandma, and I became his family caregivers. As a registered nurse, I thought, who better to provide him care than me? Yet being one of his primary caregivers was enormously challenging. Watching ALS progress is emotionally taxing. I felt inadequate and out of control. As bad as the physical exhaustion was, the emotional exhaustion and burnout were worse. It was not until I learned to express my feelings, attune to my spiritual resources, and acquire the help of a home care nurse that things got better. I was then able to provide more compassionate care, making our last moments together full of love and laughter. Thus, it is through the lens of an intensive care nurse turned family caregiver that I share the lessons learned from this experience.
As ALS progresses, increased responsibilities are inevitably placed on family members. Emotional exhaustion is often more troublesome for family caregivers than physical exhaustion. I found the emotional burnout that comes with caregiving can lead to other mental health challenges, such as depression, anxiety, and guilt. It is no surprise that family caregivers have more anxiety/depression than the general population and are more susceptible to mental impairment (Liu et al., 2020).
The Value of Spiritual Resources
An antidote to emotional exhaustion was tapping into spiritual resources and keeping our faith strong. Family caregivers of palliative care patients who report high level of spiritual well-being have better coping and lower burnout (Vigna et al., 2020). Likewise, I found praying and nurturing my relationship with God strengthened my relationship with my grandpa. He especially enjoyed it when we played worship music or prayed with him. He found it comforting and eased his anxiety. God gave me the strength to care for my grandpa when I needed it most.
The Value of Sleep
As the ALS progressed, my grandfather began to battle insomnia. His lack of sleep led to my mom, grandmother, and I experiencing severe sleep deprivation. We sometimes existed on 2 to 4 hours of sleep. The few times he did sleep well, we couldn't rest for fear of him trying to get out of bed and falling. Lack of sleep can cause increased stress responsively, somatic pain, reduced quality of life, emotional distress, mood disorders, and cognitive deficits (Medic et al., 2017). Lack of sleep caused me to feel resentment despite logically knowing my grandfather did not have control over what was happening. Despite numerous attempts with medications and bedtime routines, it was not until we hired a licensed practical nurse for nights that we finally got sufficient sleep. The nurse was patient and responsive when dealing with my grandfather's insomnia. She explained that allowing him to get up as he pleased would make him calmer and less anxious. This allowed my grandpa to feel in control and respected. The night-shift nurse gave my family the confidence to sleep and my grandfather the support he desired during periods of insomnia.
The Value of Connection
Loneliness is a familiar feeling among caregivers. A study of 1,283 family caregivers found 43% reported moderate loneliness, and 17.7% reported severe loneliness (Victor et al., 2020). I felt no one could relate to what I was going through, and I had no one to look to for support. My grandma was losing her husband, and my mom was losing her father; I could not unload another issue on them during this difficult time. I learned to give these feelings a voice. At first, I felt guilty expressing my feelings; however, when I did, I learned my mother and grandmother felt the same. This open dialogue created a supportive and understanding environment, ultimately leading to a more peaceful and calm time for my grandfather.
With Gratitude...
One of the primary sources of strength and information was that obtained from the night nurse. Having an additional person outside the family made us feel we were not alone. She was patient, kind, and understanding with my grandfather, allowing my family and I to feel confident with the care he received. She taught us how to wash my grandfather's hair using an inflatable basin and towel. This may sound simple, but having his hair washed properly made such a difference. These small acts of kindness toward my grandfather also comforted us. The assistance of the nurse also gave us an emotional respite, making our interactions with my grandfather more compassionate and meaningful. With her help and support, we overcame common caregiver challenges, making our last moments with my grandfather full of love and peacefulness.
VEXAS syndrome more common than realized
In 2020, a team of NIH researchers reported the discovery of a rare and often-deadly inflammatory disorder, named VEXAS. The identified gene, UBA1, is on the X chromosome; all 25 people initially diagnosed with VEXAS were male. Affected people have varying symptoms that can include anemia, recurrent fevers, painful rashes, blood clots, and shortness of breath. A research team set out to assess the symptoms and prevalence of VEXAS-related variants in a larger population. Scientists examined data from 160,000 patients in a health care system in Pennsylvania. Participants were predominantly white (94%) and more than half were women (61%). The mean age was 53. Genetic analysis revealed that 12 of the participants (or 1 in 13,591 people) appeared to have disease-related UBA1variants. Ten were men and two were women. Health records showed all 12 had symptoms consistent with VEXAS, including a range of autoimmune, lung, or skin abnormalities. By examining the participants' medical records, the researchers found that UBA1 variants led to a broader range of symptoms than originally thought. "Classic" symptoms of VEXAS were also sometimes absent.
REFERENCES