My parents were married sixty-one years when my father died. They lived in our home the last fifty-seven of those years, working hard to keep it up and proud to own it. Like most folks of their generation, they had children (a son and daughter), and sacrificed to put their children through college. Both my parents worked, dad in sales, and mom as a secretary. They were involved in the community through sports, church and organizations like the Elks. It was a great life for a couple who met in high school and had been together for sixty-six years. But those twenty-one-year-old newlyweds got older as we all do, and their health began to decline.
As children you see your parents as invincible. As young adults you are busy building a career, family, living your life. As you get older, you notice mom and dad’s hair getting grey, and that they need glasses all the time now. But your world doesn’t change until a significant event occurs as it did when my father had a heart attack in 2005.
By then mom had already retired due to health issues and my father was her primary care giver and responsible for upkeep on their home, cleaning and grocery shopping. At 73, his overall health was good and he exercised almost every day, so his heart attack caught us all by surprise. Protective as always, he never told us what a severe heart attack he had survived. He even hid it from my Registered Nurse sister-in-law who we rely on heavily for healthcare support and information.
Life after the heart attack
Life got back to a steady state but it was different. His medication now included Lasix a diuretic (water pill) that treats fluid retention in people with congestive heart failure.
Dad was an excellent patient faithfully seeing his primary care and heart doctor, taking his medications, keeping his weight down and exercising by walking the dog. So five years later when he had a defibrillator put in, it seemed like no big deal. It wasn’t until the last year of his life, that I understood he underwent this procedure because he was having dangerous arrhythmias and needed the defibrillator to reestablish normal heart contraction rhythms whenever he had an arrhythmia.
Did I bury my head in the sand over the defibrillator procedure? Probably. Would worrying about the why of it have changed anything? Probably not. Should I have pushed him more to slow down? I don’t know. I do know it would have violated dad’s understanding of himself as protector and caregiver to have made it a huge issue.
After that operation I was able to adjust my lifestyle to be with them more often, see what was going on and do some of the caregiving for mom. As a consultant, I often had the flexibility to have dinner with them once a week and spend the night and work from their home the next day.
The last year of dad’s life
In early 2014, at the age of eighty-two, dad had a hernia operation from which he never seemed to recover. That was also the start of his Gastroesophageal Reflux Disease (GERD). The acid indigestion and heartburn caused by this digestive disorder resulted in him losing considerable weight. Towards the end of his life, we realized that the heartburn we attributed to GERD was more often than not his heart.
During this time, I was working “locally”. Being on the East coast allowed me to go to many of his primary care and heart doctor appointments. When I was out of town, we are fortunate to have a family friend (a nurse) who accompanied dad. It is this friend who first used the term “Congestive Heart Failure”. My heart dropped. My beloved father was really sick and he was not going to get better.
By late 2014, I could see he was failing. He was complaining he could not breath, he was always tired and every trip to the heart doctor seemed to result in his Lasix medication being adjusted.
Over that year I had multiple conversations with his heart doctor and primary care doctor who acknowledged we were on borrowed time. I tried to convey that to mom, my brother and sister-in-law and other family members but it was a hard concept to grasp. The immediate reaction is “well how long?”, but there is no way of knowing. I just knew he was getting more and more tired and no longer had the energy to fight his failing body.
In mid-November I took him to the heart doctor because he was complaining of not being able to breathe. Not sure about admitting dad to the hospital, he sent us home, asking us to come back the next day. Driving home, dad went into a coughing fit and could not catch his breath. I called his heart doctor and took him straight to the emergency room. Concerned about mom, we were able to get a family friend to spend the night with her.
That night I watched his heart rate fluctuated between 140 and 160. The list of medications he carried in his wallet was a life saver as they worked to slow down his heart. Doctors were in and out all night, adding medications and fluids. Each time I wrote down the drug and why is was being given. It was a long and frightening night.
That two week stay in the hospital was full of ups, downs and new medical issues. For the first time his kidneys could not filter waste and for a while he was in renal failure with a heart too weak to handle dialysis. Fortunately, the drugs worked and we now had one more specialist to visit. At the end of two weeks, with IV fluids, oxygen and new medication, he was released feeling better than he had in a year.
It was a stressful two weeks. I was at the hospital by 7:30 AM to be onsite when doctor’s made their rounds. When I left at lunch time to care for mom and get work done for my job, a family member or friend would stay with dad. I was back at the hospital for dinner, then home to care for mom and work some more. As stressful as it was, I know how fortunate I was to be able to work out of my parents’ home. However, with the hospital schedule, I was not working normal business hours. Juggling work, mom and visits to the hospital took a huge toll on the client and me. In the end, it contributed to my losing my job in 2016. I would not change anything, when my parents needed me, I was able to help. I don’t know how people manage who are required to be onsite for their job and find themselves in this type of situation.
During that time, I came to understand my parent’s routine and what it takes to be my mother’s caregiver. Legally blind with mobility issues, my mother compensates well in her home, but there are many things she cannot do for herself. I am thankful she has all her faculties, which allows us to make decisions together.
Dad’s release from the hospital was the start of a lot of firsts. It was the first time we interacted with an agency, hiring them to provide light housekeeping. It was the first time I witnessed what great support the Visiting Nurse Association provides after a hospital event. It was the first time interacting with services provided by the county Office on Aging. The education and insight I gained was helpful once I became completely responsible for my mother.
We were fortunate to have my dad for the holidays and my mom’s birthday. But congestive heart failure can turn on a dime, and three months later when he was hospitalized again it was clear he was not coming home.
Life after losing dad
My father’s death started a new chapter in all our lives. For my mother, she continues to adjust to losing the person she loved and built a life with starting at age sixteen. To keep her in her home, we have full time live in care. As for me, every other weekend and on holidays, I am her care giver. Ongoing, I am responsible for her finances, home, and safety. My brother and sister-in-law live out of state and circumstances do not allow them to be physically here to help.
One thing I learned is the question “where do I start” is a constant one. Mom is currently in a steady state, but this will change. I would like to say I am being proactive about the next stage, but I don’t know what will change or when, so it is hard to put a definitive plan in place. At this point, proactive is continuing to research and network knowing that the next set of answers will come from this work. And honestly, just enjoying our current state allows me to take a deep breath and be in the moment with mom.
This is the start of our story, but there is much more to tell. Getting answers to “Where do I start?” came from asking everyone, even strangers: “How did you…?”; “What did you learn?”; “What resources were helpful?” Through those discussions we were able to put together our plan to keep mom in her home. The road to this solution was bumpy, mistakes were made and lessons learned. I hope what we have discovered along our journey will help you in yours.