Aid a Family in Crisis: Cancer and Caregiving

On December 17th, 2024, I drove out to visit my parents for Christmas. I met my father at the door, and he said he was going to the back room to get my mom. To my dismay and horror, he backed out of the bedroom with my mom holding his forearms for stability as she very slowly and unsteadily walked into the hall.

I soon learned that since I had seen her last, just two months prior when she was happily walking miles a day along the creek path, she had fallen several times, including in the supermarket, and was now unable to walk on her own and seemed to be quickly declining.

So we took her to the emergency room to at least start the process of finding out what was happening to her. They began a battery of testing—CT scans, MRIs, X-rays, blood work, cognition tests, brain scans, etc.. All the while she was unable to walk and therefore was dependent upon the nurses for eating, drinking, bathing, and going to the bathroom. At the end of all the testing, she was diagnosed with a very aggressive form of non-Hodgkin's lymphoma (cancer), which had produced a tumor in front of her upper spine and had destroyed her vertebrae, cutting off her brain from her lower extremities and causing partial paralysis. It was also present in most of her bone marrow.

We had two paths-go straight to hospice or try to save her life. She wanted to live, and I was going to honor her wish, despite not knowing what that looked like.

What that would look like we were soon to find out. She was transferred from the local hospital to a larger hospital to have emergency surgery on her spine. Unfortunately, this operation was not life saving but only to spare her further pain from the tumor—the bulk of it was out of reach of the surgeon, in front of her spine.

So she was in recovery from the operation, enduring five days of radiation, wearing a very uncomfortable neck brace for the next month, and putting her through a second surgery to fix the hematoma (blood bubble), which was a complication from the first surgery. She required 24/7 care to help her with all of her bodily functions.

And during that time, she also had two very debilitating urinary tract infections, which caused her dementia to worsen to the point of nightmarish hallucinations and panic attacks where she didn't know where she was and why, culminating in large blood clots in her lungs and leg, swelling her leg to the point where it doubled the other leg in size and sending her back to the ER after I witnessed her have what I thought was a seizure, after which she passed out, slumped in her wheelchair as if she was dead.

All this pain and suffering for a woman who just wants to live. All this pain and suffering, just to be told that she was too weak to receive life-saving chemo. She is no stranger to pain and suffering—reading her list of diagnoses is like an encyclopedia of ailments: dementia, Alzheimer's, severe depression, epilepsy, anxiety disorder, hypothyroidism, and arthritis—all before the cancer. She lost her teeth as a side effect from the epilepsy medication she's been on since she was in her 20s.

This is a woman who spent her life helping others. From the time she was helping take care of her ten younger siblings, through her time in the Peace Corps and as an activist in the feminist movement, through raising me and my disabled younger brother, to being a special education, English-as-a-second-language, and kindergarten teacher, she has cared for others while ignoring her own dreams and desires.

So my job is to try to make the time she has left as pain-free as possible. From the time of her admission to the hospital on December 19th until she was released from the hospital on home hospice at the end of January, I've been her counselor, secretary, and medical advocate and representative. And now I am her caregiver. I've had to learn on the fly how to do bed-to-wheelchair transfers, catheter maintenance, bed baths, and helping her go to the bathroom and clean up afterward. I manage her medication, monitor her pain and confusion, make her food and drinks, and arrange visitors and phone calls.

I am a contractor with 20 years of experience, but no amount of physical exertion, no amount of dry rot or plumbing disaster cleanup, or 80-hour weeks compare to how exhausting my current job is. Those of you who have been caregivers know what I'm talking about. But adding to the difficulty is that this is a 24-hour-a-day job, and this is my mother. At the end of all my efforts will be tragedy, heartbreak, and mourning.

I started this fundraiser because I am no longer working, and caring for her is probably going to last for many more weeks if not months. Both my parents are on their way out, and I'll need to care for my disabled younger brother. The scenario where I navigate these things having exhausted my financial resources compared to the scenario where my finances remain strong is significant. The money will be used to pay my bills and help allow me to pay a caregiver or two for help if I need a break.

Thank you for hearing my story and for considering helping with my fundraiser.