Let me start by saying I’m fortunate to be fifty years old and have parents in their mid to late eighties who are still alive. Too many of those I grew up with and have met over the years cannot say the same, sadly. I never take for granted the gift this is. I can’t. I’ll also say that I’m cursed with what comes with having parents who live well into their twilight years (I think that’s what they’re called) and deal with not only the issues that come with aging, but also horrible diseases like Parkinson’s, which my Dad has.
Parkinson’s is a four letter word. I’ve been trying to put in order his symptoms pre and post diagnosis. First it was the lip and tongue quiver which we all wrote off as Dad losing his hearing and seriously focusing on what you were saying. As an involuntary reaction, he was moving his lips to help process what you were saying. From there, it was the tremors, which Dad pretty well hid by flexing his hand, making a fist, or putting his hand in his pocket. I remember the phone call after he got the diagnosis. Not one to mince words, he simply said, “Went to the doctor today and they diagnosed me with Parkinson’s disease. It’s not a death notice. They said more people die with it than from it. I’m going to do some reading and will get started on medication soon. Just wanted you to know.”
Since that diagnosis, I’ve watched this disease take so much from him, starting with his sense of taste and smell. Dad was always big on pointing out the smoke smell when we’d pass a BBQ joint, and he loves his desserts. So taking those two things was difficult to accept, but he did. Most every symptom from there on out he simply accepted. He continues to fight, but you can only do so much after a while. He worked on the speech therapy, but let’s face it – no one wants to sit and yell or pretend to sing. Like so many things in Dad’s life, when he couldn’t do it to the level he considered acceptable, he no longer took part. Bowling and golf come to mind when I think of things he no longer does. My one big worry was the day walking became a thing of the past.
Saturday mornings have been our walking time. In the summer, we would often be on the road at 5:30am before it got too hot. We saw many sunrises and discussed how much they changed as the seasons passed. We’d walk by a field and see how the crops were doing. I’ve learned so much from him on these walks. “Knee high by the fourth of July” was how they measured the progress of corn growth back in the day. I heard stories of plowing fields with two mules and a single plow. Plow a row, rest and water the mules, plow another. That might take all day. Dad always points out his amazement at how close the corn stalks and soybeans are planted together because technology has helped the farmers grow more in a shorter amount of time. We check each week as the corn turned brown and dry, same with the soybeans. He would step into that field and pick a few ears or a few soybean pods just to show me the different stages of growth. From there, we usually talked about his Uncle’s farm and the summers he spent working on that farm. A lot of history and education were packed in those moments as we pressed up and down the road.
The walks have become shorter and less frequent. The walker drifts to one side and has to be slowed down so he can keep his center of balance. The stories aren’t quite as vivid because the disease has taken much of his ability to articulate. It’s caused his bones to grow weak and has created a curve in his back that constantly has him looking down at the ground instead of straight ahead. But he still takes the time to pull his clippers out of the walker and trim a few branches that are hanging out over the sidewalk. He says it’s for him, but we all know he’s doing it for the runners and walkers who use that sidewalk for their daily exercise. It reminds me of when I was a kid and we’d play catch in the driveway. He’d always stop and pick weeds. I’d get so irritated (I was an impatient kid to say the least). When I finally had enough of this distraction and asked him why did always had to pick weeds, he simply told me he picks them so the neighbor doesn’t have to. I guess growing up in the depression and not having much, he had to learn and do things on his own and for your neighbors and friends. He had wonderful parents from what I remember, but they didn’t have much and helped teach him how to survive, which he did, with gusto. In turn, he helps people, often times without anyone knowing. That’s just him. I found out yesterday that he makes a yearly donation to a local charity to buy a window AC unit and pay for a month’s electricity for a needy family. He’s been doing it for years. I had no idea.
I miss the days of him calling or me calling him and hearing ‘hello Michael Joseph’. Now it’s a mumbled ‘hello Michael’. Some days, he is clearer than others, but most days anymore, I feel lucky to pick up a few words to pull together what he’s talking about. Many of our conversations these days jump from actual topics to delusions and hallucinations. He is at that point where the delusions seem so real, and unfortunately, they’re coming from a time in his life where the only good thing that came of that time period was my brother. A doctor friend likened it to PTSD.
I hate seeing what it’s doing to my Mom. So does Dad. I also hate that he doesn’t realize anymore what’s happening, at least not all the time. There are moments where he is borderline mean (which is so not him), and there are moments he holds her hand and kisses it and apologizes for being a burden. Yesterday, I was working from their house to try to give mom a break since their normal caregiver was unable to be there. Mom told me that on one of his many sleepless nights, he hugged her and asked if she’d stay with him until his Jane showed up. It’s moments like that where I realize just how scared he must be, not realizing that the woman he wants there with him more than anything is standing right there holding him. At lunch yesterday, he yelled out to ask who was going to have lunch with him. Mom calmly came in, sat down next to him with her lunch, they prayed and began to eat while watching soap operas. He leaned on her and she leaned back on him. I have to admit, I thank Apple for creating the iPhone with a quick to access camera because I was able to catch that moment forever. They’re both tired. Dad is just surviving until God is ready for him. Mom is pushing her limit because she promised to take care of him for life.
A friend shared a prayer that he says daily and recently wrote a wonderful tribute to a friend that passed. Hope he doesn’t mind me borrowing this:
“The Light of God surrounds me. The Love of God enfolds me. The Power of God protects me. The Presence of God watches over me. Wherever I am, God is.”
I see this in my parents. Dad so worried about Mom being taken care of and prays daily for her, while Mom so wanting Dad to get past this horrible disease and praying for him all the time. Sometimes, a prayer like this is hard for her to get her head around because she has a strong faith, but struggles to trust. It’s not her fault by any means – she’s just a worrier. And let’s face it; sometimes we confuse trust with the expectation that all will be okay if we have faith and trust. We just don’t always understand what ‘okay’ means.
I feel for my brother. He’s in a different state and each time he comes up, he sees Dad in the next stage of his aging and the disease. He doesn’t know what to do, and I can’t say I blame him. I see Dad every other day and I feel helpless a lot of the time too. I feel for my boys. My youngest went down yesterday to see Grandpa and I haven’t seen Dad light up like that in weeks. And all it took was his grandson to walk in the room. He reached out for a handshake, and my son obliged. Then my son did something unexpected – he reached out again and asked for another ‘firm’ handshake. Dad obliged with a smile on his face. They just sat there for a few minutes with no words exchanged, but I think for a moment, Dad was Grandpa again.
I’ve stopped by a nursing home and called another just to get some information. I’ve called and met with people about in home care. I left both feeling disappointed and guilty. Mom and I talked yesterday, and she said through tears there’s no way she thinks she could handle taking him to a facility and leaving him there. I told her I understood because in my head, it’s rivaling taking my dog in to be put down. The guilt is unyielding, even if you know it’s what’s needed. But he’s my Dad. He’s been with me the past fifty years. I know I don’t have a say in God’s plan for him, but it’s hard to understand what purpose he has left except to show us how to continue to grow in unconditional love and caring for each other and others, and doing things so others don’t have to. I don’t know what my role in this big plan is. I guess I need to act on what my Dad has taught me and continues to teach me. It’s too easy to go home at night and just flip channels and justify it by saying what a stressful day I had. I still have the ability to walk, run, listen, share, help, and love. I can’t take that for granted anymore. I have to help Mom in any way I can, even if it’s just listening to her vent without trying to offer advice to fix it. That’s not what she wants or needs. I need to try to help by boys move on in their lives through their education or work ethic. I need to communicate with my wife and figure out a way to start liking hockey or watching obscure college football team play and resist the need to flip channels if it means spending more time together. I need to keep communication with my brother so he doesn’t feel so far away. I need to do what’s best for all of them. I need to do what’s best for me, although I’m still trying to figure all of that out.
So what have I learned from Dad? The list is long. Take care of those around you. Take care of those who don’t have what you do. Take care of yourself. Don’t quit fighting unless there’s no real point to it. Let me clarify that last statement – fighting to stay mobile against Parkinson’s is much more important than trying to nail that 8/10 split. Life will go on if you miss that, but Parkinson’s, cancer, and a hundred other horrible things will get you if you don’t fight. Love people as best you can in the way you know how. A handshake is just as good as a hug sometimes. You don’t have to say ‘I’m proud of you’ or ‘I love you’ for people to know it. Be honest with people. Don’t beat around the bush. If someone is an old warhorse, sometimes it’s OK to let them know it. Stand up for yourself. Sacrifice always pays off in the end. Don’t miss a chance to make a memory, but understand the feelings of those around you who may have more fear than a sense of adventure. Recognize hard work. Recognize the beauty in the little things. Work each day to make yourself a little better than the day before. Have faith in God. Have faith in others. Trust you’ll be able to do both willingly. Remember anniversaries. Remember to be romantic with your spouse. To this day, Dad still says ‘happy anniversary’ on the 14th of each month. Keep that one Christmas present back until the end for that special surprise. Take the time to work on a puzzle. Make time to get on the floor with your grandkids. Share your history. And pick a few weeds.
Random Thoughts of an Ordinary Average Guy 