My story details the experience of caring for Connie, an ALS patient diagnosed with the disease in March 2022. But its more then my story. This is the story of a patient dealing with ALS and a husband helping his wife manage its ravaging symptoms. It describes the progression of her symptoms and the efforts made to manage the disease. My story is not unlike the experiences of many spouses, family members, and friends of ALS patients who willingly take on the role of caregivers for their loved ones.
Our journey commenced in September 2021 when Connie experienced unexplained dizziness followed in October with additional symptoms to include difficulties maintaining head control, a markedly slower gait, frequent headaches, numbness in her legs and feet, slower and slurred speech, and neuromuscular issue such as spasms, loss of motor control and weakness – symptoms commonly associated with ALS. At this point we were naive on neuromuscular diseases and never thought the disorders may be complications from ALS. Despite these issues, Connie remained functional, managing occasional walks, outdoor activities, shopping, and driving.
In the following months, as Connie’s symptoms worsened, we consulted our neurologist to identify the cause and monitor their progression. Before her final appointment, and despite her weakness, Connie used a walker to navigate 100 feet to the restroom and back. This was her last time walking.
Diagnosing ALS proved challenging for our private neurologists. Consequently, we were referred to the neurology team at the University of Virginia Medical Center (UVMC) for consultation. Connie was admitted the UVMC on February 23, 2022 and the following morning, Connie’s attending neurologist provided a tentative diagnosis of ALS complicated by Parkinson’s Disease. Undoubtedly, this was the worst day of my life. While the diagnosis provided clarity, I knew ALS would eventually lead to Connie’s passing and end our retirement plans. On February 27, Connie and I had a lengthy discussion with the neurologist about measures to prolong her life. Unfortunately, her condition had worsened so much that she was not eligible for any clinical trials. Additionally, with her lung capacity being so low, she would not be eligible for an operation to insert a feeding tube. Finally she flatly rejected any mechanical means of breathing assistance. I believe that Connie knew that any efforts to prolong her life would be futile and was comfortable leaving on her terms.
Throughout this period, Connie’s diet changed from regular meals to sporadic eating, eventually requiring a puréed food diet. This resulted in a noticeable decrease in appetite and significant weight loss. Drinking and taking medication also became increasingly difficult.
On March 1, 2022, the neurologist officially diagnosed Connie with ALS, Parkinson’s disease, and temporal-frontal lobe dementia. He informed Connie that her condition would only worsen with a prognosis of between six months to one year to live.
On March 3, 2022, Connie was discharged to an acute rehabilitation facility for physical, occupational, and speech therapy. She was discharged from the facility on March 10, 2022 with no noticeable improvement in her condition. Following her discharge until entering hospice care on April 11, 2022, her symptoms continued to worsen to the point where she could not eat or move, and her breathing was uneven and raspy. At 9:30 pm on April 12, 2022, Connie passed away. Her first life story ended, and her second life story began. Connie is now at peace, healed and perfect, in the arms of God.
For just over six months from the onset of Connie’s ALS symptoms to her passing, I was Connie’s primary caregiver. Before the disease, we enjoyed a full life together as friends and partners. As Connie’s ALS symptoms worsened, my role shifted from a husband to a caregiver trying to meet her basic needs like eating, bathing, taking medication and doctor’s visits. I tried my best to preserve our husband-wife bond, but it was difficult. Connie needed emotional support, such as a hug, kiss, holding hands, or an “I love you” whispered in her ear, as much as physical support. But managing Connie’s complex physical needs often left me doubting if I was providing enough emotional support. Additionally, because the communication challenges were so overwhelming; she could not talk and only communicate through thumb signals and texting, it was difficult to gauge if my support was sufficient.
Reflecting on our experience, I’m unsure if I provided enough support during her vulnerable times. I question whether I met her needs adequately and still find it hard to accept the reality of ALS. I struggle daily with nearly ever aspect of our journey and the aftermath of Connie’s passing. It is challenging to comprehend how a woman, who appeared perfectly healthy one day, could develop ALS without a known cause and eventually succumb to the disease. I miss the everyday moments with Connie, like going out, shopping, eating out, driving, and even arguing over trivial matters.
Everywhere I go, everything I see, everyone I meet reminds me of Connie and how much she meant to me, knowing I will never have that again. I feel guilt and regret for things said, unsaid, done, or not done during our time together, especially after her diagnosis. I struggle with whether my caregiving was adequate, knowing there is no definitive guide on how to assist someone in their final moments. I had never helped someone die before, so I did my best despite the uncertainty. Looking back, I think I could have done better and realize that there are many things I would have handled differently during Connie’s final days and other events in our life together.
Throughout our journey, I have experienced significant frustration regarding ALS. I am deeply concerned about the lack of a cure and disheartened that Connie was one of the many affected by this horrible disease. Additionally, I find it challenging to comprehend the significant difficulties and adversities Connie encountered while maintaining her well-being.
Witnessing Connie battle this disease for over five months while fervently hoping for improvement has been incredibly difficult. The prospect of facing a substantial void in my life moving forward is daunting. The extensive plans we made now seem unachievable without Connie’s presence. This situation has raised questions about faith, as I try to understand why Connie was affected by ALS and why there appeared to be no intervention to save her. Observing Connie struggle with this disease for over five months, despite her desire to recover, has been distressing.
Looking ahead, I face the daunting prospect of a significant void in my life. However, I have tried to find a new direction in life, different from what I initially expected. I have discovered commonality and acceptance within the ALS support groups in which I participate. I strive to provide support and offer a survivor’s perspective on life after our loved ones have passed from ALS. Additionally, I am making efforts to expand my life through new activities. I continue to grieve, acknowledging that each day presents a new journey of grief which I no longer attempt to conceal. I miss Connie immensely.
Connie was intelligent, humorous, and attractive. She had a joyful presence that positively affected those around her. She related well with others due to her warm personality. Reflecting on shared moments, such as shopping, car rides, dining out, walking, holding hands, and showing affection, brings back good memories. Like many ALS patients, Connie managed her illness with remarkable strength and rarely complained about her condition, which was notable.