Sorry, if you’ve felt “left hanging” for a couple of weeks. My life got very busy and frankly, I took a break while I was on a mini-vacation. We all need those breaks from trauma stories, and trauma itself, if we can get them. I’m reminded of the times my trauma survivor clients would come in with other things to talk about, and then they’d admit after a while that sometimes, they just couldn’t “go there”/didn’t want to talk about it that day. It felt like “too much” and I could tell their internal resources were worn. I’ll admit that too. I tried to start this story about 2 years ago during that trauma storytelling workshop. I was emotionally ready and had a good framework to use after that training, and then when it came time to put pen to paper, I wasn’t ready…because other things happened, including a global pandemic. My resources were tapped and I had written some things in the workshop journal I received, and then it gathered dust and I moved it out of view. All good, you do what you need to do in processing trauma when you’re ready. I will always honor that. You can be on whatever timeline you want. No need to hurry and don’t let anyone tell you otherwise.
Back to the story…if you’ve been paying attention, you may realize that there are only 7 years left in this story. My father fought Parkinson’s for 17 and 1/2 years, from age 50-age 67 1/2. And let me tell you, the last seven years were a doozy. In March 2008, there was another defining moment. I had a 6 yr. old and a 1 1/2 yr. old. I was working in a community mental health center running an early childhood mental health initiative that had recently received a new grant. My husband was working late every night, kids were in daycare until almost 6pm by the time I picked them up, and we’d have some short, precious time at night after dinner and before bedtime to be together. My plate was full and I was emotionally and physically pretty well tapped. Then one morning, mom called to let each of us know that she’d decided to put dad in a nursing home. She’d struggled with this decision, but couldn’t take care of him any longer at home without risking further injury to him or her. He had fallen again. She couldn’t pick him up, she had hurt her back doing that 2 years prior and had needed back surgery. She wanted him to have a chance at a longer life. He wanted to live longer, he was sure he could tough it out while the cure for Parkinson’s was found. He believed it was within reach. He believed in lots of things still despite his condition. At that point, dad was low functioning physically and was spending mom’s work day at St. Charles Nursing Home where he could be attended to and socialize. He would be switched to full time care there.
It hit me like a ton of bricks, like a punch to the gut. I understood the reason, knew she’d kept him home too long, totally supported her decision, but still it STUNG. It stung like an actual bee sting in my heart and in my eyes, which filled with tears and turned into a sob as soon as I got off the phone. In my mind, this was “the beginning of the end.” Those exact words came out of my mouth to my husband and to a friend. Once dad went into the nursing home full-time, he was on the path to death. He was 60 years and 9 months old, and that was just too early. Why didn’t he get a life to enjoy after retirement? Why did someone who worked so hard and did so much good for others get dealt this hand? It was too much sadness for me to bear and I knew it was way too much sadness for him too.
So dad went into the nursing home to live, and that’s where he spent the remaining years of his life, at St. Charles, then at Rosedale Manor when St. Charles needed to make major building modifcations. He didn’t want to be there, who does? In the beginning, he would plead with all of us girls to take him home, to go bring the car up and “break him out” of there. This usually happened when mom wasn’t around. She was his security, his safe base. If she was out of town, which she only did a couple of times in the first year or two, he panicked. He was fully serious about being broken out and I wanted to laugh it off like he was joking, but I knew that was just me trying to set aside the pain of that reality. Within a couple of years, he had to be put permanently in a wheelchair so that he wouldn’t fall, another tick down the path. We all know what happens in nursing homes: there are more residents than the staff can handle, people get left alone, they wait long times for someone to help them because of short staffing and/or lots of needs from the residents. The staff do the best they can, but much like when babies are young and need 1:1 help, people with extremely deteriorated functioning often need and always do best with 1:1 help. In addition to increasing physical mobility issues, my dad had lost much of his ability to speak due to muscle deterioration in his mouth. This was a huge blow for him and for us when he couldn’t communicate well and it got harder and harder to pick up words and decipher sounds.
Mom knew the plight of nursing homes and she didn’t want him to be neglected, especially due to his communication and mobility issues. Her new routine, from day one of his admission, was: go to work in the morning, leave work at 5 and head to the nursing home, have dinner with dad every single night, then hang out with him, take care of him, and put him to bed every single night. Ok, she missed a grand total of like 10 nights in 7 1/2 years. But to me that’s still EVERY SINGLE NIGHT. When she needed something, she’d ask the staff for help. But she didn’t need much; she knew what he needed, that’s what happens after close to 40 years of marriage. So she more so befriended the staff and made them feel good about themselves, because that’s how she operates, the ultimate caregiver. It was in her blood and she truly enjoyed taking care of people. And she trusted the whole time that God had a plan, and that last piece is one of the main reasons that in 17 1/2 years, she never fell apart over this. The other piece that held her together was social and emotional support. And that has borne out in the scientific research of adverse experiences for many, many years. What I witnessed in her and in him inspired me and kept me from completely falling apart myself, but I did fall apart and get put back together many times with the help of others, including a couple different therapists over the years. And I adjusted, we all adjusted.
In early 2011, we finally figured out why and how dad had Parkinson’s Disease. Oh it had been a veritable Sherlock Holmes mystery trying to figure that out for the 14 years prior. Was it the pesticides mom & dad had used gardening all those years or some other toxic component in something else that was deemed safe then found later not to be safe, was there a genetic component yet unfounded, was he just unlucky like people who get cancer out of nowhere? The answers to all of those questions were: “it could be.” I’ll never forget the night my physician sister who was still in the military told us a report had come out from the government letting people know that Agent Orange had been found to be tied to a list of 27 neurological diseases, 27, you bet I counted, and guess what one of them was. I was relieved for about 5 minutes, we finally knew! Then I was angry, very angry at that decision made by someone (or ones) to expose their own people to debilitating chemical warfare. They knew what they were doing, it was meant to adversely affect the enemy in the war. How could they not know it would also affect the soldiers? So they took some responsibility to make it right 40 years later. Gee thanks, that’s great of you. My father is dying after sacrificing his life for his country and being exposed to terrible things in the war, then working 30 years for the same government that, in my mind, betrayed him. And it wasn’t just him with this life sentence. I shuddered to think of all the families that felt the same. I went to D.C. with my family in 2014 and wouldn’t visit the Vietnam memorial. It was too much for my empathic self.
Speaking of frustration and anger, one of the most interesting and perhaps one of the most awe inspiring things that I learned during my dad’s illness was that strong emotions can supersede depleted functioning. I saw both ends of the spectrum. The smile he usually couldn’t make with his mouth and facial muscles, would actually appear when someone made him laugh or when the grandbabies came around. And when he was angry, the words somehow formed in a way they usually couldn’t. It was like a light in the darkness. I was happy for that anger. I didn’t want him to be angry, but I wanted him to function better and for those moments, he absolutely could! And then I saw the best thing of all during this prolonged time of overall sadness that was his disease; I saw how the love of my mother sustained him and how his love for her and us sustained him. How did he stay alive for 17 1/2 years when one year into his diagnosis, he had gone all the way to an advanced state of the disease? How did he survive 7 1/2 years in the nursing home? LOVE. And mostly their love. I had witnessed the power of true love first hand, the kind that’s in wedding vows and in fairy tales, the kind that doesn’t change even when your loved one drastically changes, the kind that allows a weak, dying man to squeeze a hand and to form a kiss with his lips to kiss his wife, his children, and his grandchildren. I discovered how love heals and how it lights the darkness. I’ll leave you with that thought. We have some more to cover and one thing I learned about treating trauma was that you don’t leave someone wallowing in sadness or with an exposed wound, you leave them with something to hang onto, something that helps them cope until the next session, something to believe in.
I think that Josh Groban’s “You Raise Me Up” perfectly captures their relationship at this stage. Listen if you like.
Until next time, may your day be sprinkled with HOPE,
Melissa Adamchik, Daughter of William & Genie Wambaugh, Ambassadors of True Love