In addition to providing care for my daughter and spouse, I have been a caregiver for both my parents within my home and offered consultative assistance for Lynn’s Mom and stepdad. I rarely was needed to help with Lynn’s Mom; his sister managed most of her care, but when his stepdad began to decline rapidly, there were a few weeks when I had to make several trips between his home and the rehabilitation facility to try to arrange for him to come home. Unfortunately, he developed C-Diff at the rehab facility, and it weakened him so much that he died before coming home.
Mom Mentions She Has a Problem
My mom casually mentioned on the phone one day that she had an abnormal CT scan. Dad commented that she was frail and her abdomen had become very large. Alarms began blaring in my ears as I started asking questions. I knew by the end of my interview she likely had some form of abdominal cancer. I asked her to send me her reports, and they confirmed my suspicion. The CT showed probable cancer of her fallopian tubes. She lived in Franklin County, southwest Virginia, near Roanoke. I live in Richmond. I knew what was coming. I immediately called my brothers to inform them of the test result. I carefully explained to my parents what I understood from the x-ray in words that would prepare them for the news. They needed to be prepared to hear the coming news and what options to expect. Hearing that news without preparation often prevents people from hearing the details and options.
Attended Appointment Virtually
I attended her appointment virtually the next day. Afterward, I ensured she understood what the doctor told her and again reviewed her options. However, I also discussed the impact of those options on how much care she would need from Dad. I wanted to be sure they knew that not only would it be hard on her but on him as well as her caregiver if they tried to do it alone. Afterward, I asked them to consider moving in with me while she went through treatment. If they did, Dad could still be her primary caregiver, but I would be his backup and could help them know what to do if they needed help.
Ask Parents to Come Stay with Me
I knew they would be reluctant because I cared for Lynn, but I convinced them to do it by stressing that Dad would be the primary caregiver and I would mainly consult. Furthermore, I reminded them that Lynn had a daytime caregiver, that mom would have access to home health care if needed, and that her son lived only a mile from me as an additional resource. While they reluctantly agreed, I think they were also relieved they didn’t have to go through cancer treatment alone.
Mom stayed with us for a year. We set a room aside just for her and Dad. It was directly across from the bathroom, which helped during her weakest periods. It had a TV, too, so she didn’t need to leave the room for entertainment if she wanted to just stay in bed. I always took her to her medical appointments so they would not have to drive in city traffic and could find their way around the vast medical center where she received care (also where I worked).
Adjustments
It took some getting used to having my mom advise me on how to care for my home and try to clean up things I didn’t have time to do. Mom was a dedicated housekeeper, and she found places I had yet to clean everywhere. However, she or Dad had cleaned them all by the time she left. Sometimes, feelings got hurt because she tried to help when help was not needed, and she took that the wrong way, but most of the time, we did well together.
Mom’s surgery removed all the cancer, and the chemo follow-up kept her cancer-free for three months, but it came back. She tried one course of second-round chemo, and it hit her so hard that she decided to do hospice instead.
Hospice
My parents moved back home, and Dad took over caregiving duties alone. I offered to let them stay here until the end, but she wanted to die at home. She lived another two years after going home. Lynn was in the ICU when I called to talk to her one weekend. She started describing her symptoms and asking about pain management. I could tell a bowel obstruction was close to occurring, probably due to cancer invasion. I notified the hospice team of my suspicions and called the family to tell them that if they wanted to have one last celebration with Mom while she could attend with minimal pain, they needed to do it as soon as possible. They managed to pull it off that very weekend. Though we could not go since Lynn was in the hospital, we joined them by phone.
The following weekend, Mom fell on her way to the bathroom. Her leg had been swollen (several family members told me it was very swollen and bluish, and the circulation did not look good). When she fell, she lost consciousness and didn’t regain it. I suspect she had a stroke from deep vein thrombosis. She died the next day with the family gathered around her. While no time is a good time to lose your mom, that was the best time possible for us.
Mom Dies
Move forward three years. Dad’s been living alone since mom died, at least thirty minutes from any of us. We each try to call regularly. I do my medical checks weekly. Doing mine one week, I heard all the signs that he was heading for congestive heart failure—legs swollen, coughing, trouble breathing, and high blood pressure (high). I called my brother, who lives nearby, and told him he needed to go to the ED.
Larry left work and took him to the ED, where they waited eight hours before seeing a doctor. Dad’s prostate was closing off from edema, and he needed to pee every five minutes. His blood pressure was 200/180, and they sent him home on medicine. I was not happy, but what could I do from Richmond? He continued to get up a lot to pee during the night. Early the following day, he passed out trying to go to the bathroom. He said he could not move at all for several minutes. Fortunately, I had gotten him an emergency alert button to wear. He called for assistance using the button. It alerted me, and I called a neighbor who was already on his way to help Dad because he heard the alert go over the fire department dispatch. When EMS arrived, I told them to bypass the local hospital and go straight for the level 1 hospital in Roanoke because the local folks missed the diagnosis the day before. Upon arriving in Roanoke, Dad entered the emergency department with evaluation and treatment quickly following. Upon arriving at the Emergency Department, the ED doctors determined he had pulmonary edema, congestive heart failure, and an inability to empty his bladder. Ct of his heart showed a rare heart condition called atrophic myopathy with a clot sitting in the apex of an aneurysm in his left ventricle.
Dad had never seen a cardiologist or urologist. They were stabilizing him and planning to put him in a long-term care facility for rehabilitation. I told them he could not go into tertiary care and instead had to be moved to Richmond to stay with me. He needed to be seen by cardiologists and urologists for treatment, or these issues would resurface. Someone had to monitor them, and that would have to be me. He agreed only for six months. I set up his and mom’s old room, but this time, I did so with the idea that it would probably be permanent. Though Dad insisted he would go back home, I could not see him moving back alone. He was 90 years old and had several medical problems needing monitoring.
I started with getting him appointments for baseline care and a proper treatment plan. We eventually were able to get his catheter removed, and, with physical therapy, he was able to walk with a cane. During one of his admissions, they found that he had a severe heart arrhythmia that caused his heart to go into V-tach for long runs, alternating with a very slow heart rate in the 40s. He needed both a pacemaker and a defibrillator. He now has an implant that manages both. Dad has 24-7 caregivers to help him with his care. He insisted he would not be a burden to me. He wanted to continue using them even after Lynn died so I could recover from all the physical problems acquired from caregiving.
I manage Dad’s care as his consulting healthcare provider, as I did Mom’s. He’s doing remarkably well for a 91-year-old. His mind is very sharp except around sundown when he gets confused, but overall, he’s very independent. He’s good company for me with Lynn gone. I sure hope he stays around a while longer.
