The phone calls are starting to feel too familiar. At least this time it didn’t come in the middle of the night. I was just starting to settle down to read for a while before bedtime rolled around on Tuesday night when the phone rang.
It was my dad, asking what I was doing. It was late enough in the evening that I knew it wasn’t just a casual call.
“What do you need, Dad?”
He hemmed and hawed, saying something about Mom not feeling so great but that she had a doctor’s appointment in the morning. I was aware that my mom had picked up a respiratory bug recently and knew it was not good for her already ailing lungs. It seems that Mom was now coughing so much that she couldn’t catch her breath and it was making her feel panicky. Dad said he had made a call to their clinic’s after-hours service and then he just seemed to fumble with what to say or ask next.
“Do we need to take Mom to the ER,” I aked? In hindsight, I shouldn’t have asked but rather insisted.
“Well, I kind of think so,” Dad said. “But Mom isn’t sure she wants to go.”
Dad wanted to wait to hear back from the on-call doctor. I had little faith that a doctor who doesn’t know my mom’s immense medical history would be in the least bit helpful. I told Dad to give it half an hour. If the doctor didn’t call by then, we should go to the emergency room.
Turns out the doctor did call and of course, she knew nothing of my mom’s conditions. The doctor’s recommendation was that Mom try breathing steam. I knew this would do nothing to ease her symptoms and I was frustrated with myself for even agreeing to wait for that call. Mom’s got pulmonary fibrosis caused by Scleroderma and she’s been told she is an extreme and severe case. She is so frail, it makes me sad.
I told Dad we needed to go to the ER. Again, he said Mom wasn’t sure she wanted to go. I tried to keep my frustration in check. It’s a good thing Dad couldn’t see me rolling my eyes.
“Dad, does Mom think she can get through the night until she can see the doctor in the morning?”
I heard him relay the question to Mom and then he returned to the phone to tell me she didn’t think so. I took charge then and told Dad that I would be over to the house in fifteen minutes. He and Mom should be ready to get in the car and we were going to the ER.
The emergency room has become too familiar. I know just where to park and where to check in a patient. I know there will be a visit with the triage nurse before a room will be assigned. I know to bring a book along because we’ll often end up sitting in that room in the ER for hours, explaining symptoms and medical history to multiple nurses, technicians and doctors. There’s usually a shift change and it all has to be explained again to more doctors and nurses. I’ve learned to bring a book to pass the time.
Mom was given a nebulizer treatment and a steroid to help ease her cough and open up her lungs. She had an EKG and a chest x-ray. Her doctors this time around were wonderful… very compassionate. The medical staff seemed to understand more about her condition than I remember in the past. Her condition used to seem a bit foreign to most medical professionals who were unfamiliar with Mom’s history. This time they seemed more knowledgeable. I couldn’t help but notice the looks of pity as Mom explained how long she’d been dealing with her disease and how extreme it had become.
As I listened to my mom talk to her caregivers, I made note of many red flags in the things she told them. She knows water is important to her well-being but doesn’t drink much of it because it makes her have to use the bathroom. Using the bathroom means going up and down stairs. Going up and down the half-flight of stairs to the bathroom is enough to exhaust her and make her feel sick, so she doesn’t drink water.
If she could just sit still for any length of time, she said she might not be so wiped out all the time, but she can’t sit around for hours each day and still try to maintain her household.She doesn’t sleep well at night because Dad is diabetic and she needs to be on alert for changes in his well-being. Dad can no longer drive, so she is responsible for taking him to his appointments, to his church activities and on errands.
More than once I heard Mom insinuate, or say outright that she was becoming a burden to her kids. I insisted she wasn’t, but it became more and more clear that staying in their house is simply more than my parents can handle. Their multi-level home has become too much for them. To be honest, I’ve thought so for a long time. A couple of years ago, they found a single-level town home less than a mile from me that would have been perfect. Then Dad suddenly decided he didn’t want to give up the house. I know it’s scary for him to think about leaving the place that’s been home for over twenty-years. I can’t make it easier for him. And so they remain where they are.
How do people do this? How do the children trade roles with the parents without damaging relationships and diminishing self-esteem? It’s so clear to me that my parents can’t manage things on their own. We, their kids, try to do what we can. We cook. We clean house and do laundry. We mow lawn and shovel snow. We take Dad to appointments when Mom is too weak to leave the house. We take Mom to appointments when she is too sick to take herself. We pick up groceries and necessities and call to check on them. We rearrange work schedules and take time off when necessary. But it’s a challenge at times. We all work full time. Some of us have young families and hectic schedules. One brother has the added burden of having gone back to school.
Dad made a doctor appointment for himself yesterday. Mom was still in the hospital and no one was sure when she’d be released. I’m pretty sure Dad scheduled the appointment before checking with anyone to see when someone might be able to take him. Sometimes he calls and needs someone to come “right now.” The doctor appointment worked out in the end, but not before three of us kids scrambled to figure out who could make room in their schedules to make the 4:15 appointment.
I’m not complaining. I want to help, but we have to figure out how to do this better. I live the closest and my kids are grown. My sister works from home and has the benefit of a flexible work schedule. We are called upon most often to help. And we are happy to do so, but it is often a challenge. Something needs to change, but the thought of our parents aging, the thought of their diminishing health is scary. I’ve tried to organize a family discussion but it dissolved into a major rift between the siblings. We don’t all share the same level of worry. Some think that others are overreacting about the severity of the situation. We don’t always each understand one another’s viewpoints and it causes such discord at times.
Mom was released from the hospital yesterday and for now, things have settled down. My sister will go over today to take care of things. I’ll take a turn tomorrow, maybe cook some meals to put in the freezer so they don’t have to worry about cooking.
This stage of life is icky and scary. I have constant feelings of worry and constant feelings of guilt over not doing enough. I am often the one who takes Mom to the emergency room and this time, I heard such worry in her words. I sense that she doesn’t want to ask someone else to make decisions, but that if her kids stepped in and took charge, she might be relieved. At the very least, my parents need some in-home assistance. Soon – they need to get out of that house with all of the stairs and the big yard with the steep hill. I’m not sure all of my siblings would agree, but I was in that room in the ER with my mom. She is scared. She needs relief.
At least I know we’re not alone in this situation. I talk to so many of my friends of the same age. They are experiencing similar things with their parents. Mark’s family is battling the same problems. His dad’s health is going downhill quickly.
God, life is hard sometimes.