If you’re a caregiver of an elderly loved one, chances are you didn’t choose the role. You were born into it. The minute your parents gave birth to you, your odds of becoming a caregiver later in life became something you could bet a bundle on, even if it took you a few decades to realize it.
What I’m going through now, I know countless others are going through as well. Moreover, I know multitudes went through it all before me and just as many will begin the caregiver path as their loved ones age later. That journey involves emotions that run the gamut from fear, anger, ineptness or all of the above–within seconds of one another.
When you first embark on this course, you feel as if no one has ever done it before. The questions you have are so basic, yet the answers involve a lot of debate. I remember feeling the same way when I had my first child, but I found people were eager to offer advice. Not so with care giving which involves disease, pain and illness. You feel alone.
I’m just embarking on that path. I’m a Featured Contributor for Seniors for Associated Content, and I’ve decided to devote at least one of my monthly assignments to care giving. I hope these articles will help answer some of the many questions you’ll have as you go through your journey with your loved one. At the very least, I hope they help you to realize you are not alone.
Here’s the backdrop of my story: My dad, a mischievous, cantankerous 78 year old, became ill several years ago and shuffled from one doctor to another to cure “it.” The main turn came when he lost his sense of taste and his tongue felt burned all the time. He listened to his doctors, but little changed. He even sought out a specialist who deals with “burning tongue.” That doctor stuck electrodes on dad’s head, poked and prodded, but with no real benefit. And my dad had to drive to Washington, D.C. for the pleasure of getting those little electric jolts. His life changed from work and fun to a life that revolved around doctor visits.
The issues compounded. He started choking while he ate and coughing until he couldn’t breathe. He lost 30 pounds and became lethargic.
One of his greatest joys is going to local pubs and pizza places with friends and holding court, regaling people with his stories. Because of the physical problems and the fear of choking, he grew quiet. That’s when we started getting “sad” pangs, knowing things were going to be forever different. The joy of normal things had started to fade for him. Then he stopped being obstinate and ornery 24/7. Who would think you’d get weepy because someone isn’t chastising you?
My brother found a specialist who had suspicions on a diagnosis. When the tests were done, that specialist forwarded the information to a doctor at Johns Hopkins. We are blessed to live in Baltimore, home to many world-class doctors. I’m not sure what we’d do if we lived elsewhere. We’ve had access to top-notch care.
He was scheduled to see the doctor yesterday (Sept. 27, 2010). He told me I couldn’t go, nor could his significant other. We weren’t needed. He could do it by himself, he said. At the risk or starting a major argument, I told him I was going, and so I showed up at his house. Oddly, he was okay with it once we were on the road. Afterward, he actually seemed happy that I’d gone.
The doctor smiled at my dad and said straight off: “Are you here to confirm the diagnosis or to get a second opinion.”
My dad looked genuinely bewildered, shrugged his shoulders and said: “I don’t know. I was told to come here.”
The phrase the two men danced around was ALS (Amyotrophic lateral sclerosis), Lou Gehrig’s disease.
The doctor, Dr. Jeffrey Rothstein, is a professor of neurology at Johns Hopkins and director of the Robert Packard Center for ALS Research. He recognized my dad’s symptoms as Bulbar Onset ALS. Only about 25 percent of ALS patients have Bulbar onset, meaning that the throat area is the area affected initially.
My dad is weak, possibly just from the weight loss and lack of nutrition, but has full use of his arms and legs, unlike most initial ALS patients who face paralysis of limbs as a first sign. When it comes to ALS, most people conjure up a picture of Stephen Hawking, the wheelchair-bound genius scientist/author. With ALS, the person loses physical capability but the mind is totally intact. The body fails the willing mind. I know this is part of what scares my father most.
Dad’s symptoms manifested in a different part of the body, but they have the same root just the same. Without the outward signs, such as a wheelchair, there are minutes we can convince ourselves that our lives are the same as they were two years ago. Still, when I mention the term ALS, even in typing it, my breath stops for a few seconds. I wonder in my head and with fingers what comes next. It causes me to hesitate. I’m finding myself having lots of mental pauses nowadays.
In the short time I’ve been transitioning into this changing role, child/caregiver, I’ve learned much. If you get nothing else from what I write, please get this: The things you ask yourself will seem crazy, even to you, so expect up and down emotions.
I made it through the hours at the doctor’s office. I heard my dad and the doctor discuss, in clinical, polite terms, how long my dad would live as well as the progression of a disease that has to be beyond frightening to a person who has it.
I drove home, made it out of my car, checked my mailbox and broke down right there, sobbing. It relieved a bit of the tension headache that had started to take hold anticipating the doctor visit, but even with the major crying jag, it hasn’t gone away yet. I’m starting to think it may not go away entirely.
My brother has a high-powered job, well respected in our city. I am a career journalist, used to asking those from any walk of life hard questions. Now we are small children again, wondering how to make dad happy and well. It doesn’t matter what we are to the rest of the world or how good we are at making things happen. We want to make things happen here, and we can’t.
While we are small children again, we are also entrusted with making very grown-up decisions for a person who made decisions for us. It’s all very confusing.
When I said your emotions and thoughts will run from one side to another, I mean that literally. I spent hours being sane and investigational, then went home and discussed the day with my brother and had another crying spell.
I succumbed to sleep, but even then the emotions and thoughts continued. A nagging thought woke me up in the middle of the night. Years ago, when I was borderline wealthy, my dad talked about wanting to take an Alaskan cruise. He never traveled. He hated it in general and in principle because, well, he’s cheap when it comes to spending money on himself. With him, pennies don’t just squeal, they scream to be set free. I wanted to plan a trip for us. He blew me off, so I let it go.
I awoke last night, sitting bolt upright in my bed with one thought: I wish I had pushed to take him on that Alaskan cruise. Why hadn’t I done that? I’m still thinking about that today. I wish I had pushed the same way I had when I told him I was going to the doctor with him. Is there still time?
Tomorrow I will still be worried about why I had done this or that but I’ll be moving on to researching what comes next. I’ll be checking out practical things that will make my dad’s life manageable as time goes on. I’ll be making to-do lists and checking with loved ones, trying to alleviate their worries.
Or, I’ll have another crying jag when I go to my mailbox. The one thing I’ve figured out in this is I can’t predict anything. Most of it is beyond my control. That, in and of itself, is something I have to learn to wrap my head around. With care giving, you have no comfort zone.