For millions of us, carrying around your cell phone is just part of your life. It follows us from room to room, and from place to place. It's something that's almost there. It's always like an oxygen tank, at least it is for most caregivers.
In the rare event that we're able to go somewhere outside of the home, it's there for us. We hope that it doesn't ring, that we're able to enjoy a few hours of quality time outside of the home. We hope that Captain Kirk doesn't sound a "Red Alert" and that we have to leave our meal, our movie, or our stroll in the park. We want it to stay silent. We take comfort in the silence. But other times, we just wish that it would ring.
Most of us remember a time when we could go and come as we please. Its that great American freedom that we take great pride in, unrestricted travel, the ability to go to the grocery store, the mall, or even the veterinarian whenever we damn well please. Most people take that for granted; they get in the car, they drive wherever they want, whenever they want. You just have to have enough gasoline in your tank and your ready to go! Its not that simple for caregivers.
I took care of my mother for 12 years. Well, I took care of her in my home for 12 years. There were a few years in which I took care of her, even though she lived in her own home. I'll never forget the day that we packed her up and moved her from Mississippi to Kentucky. She had the perfect apartment. It was decorated and furnished just the way that she liked. She had an enclosed sun porch, a large bedroom with tons of storage. And she never had to take the trash out. You see, the building was shaped like a square, with a courtyard. Every apartment had a porch, or mud room, that opened onto that courtyard. Tucked away at the bottom of the built in cabinets was a door with a different sort of latch. You had to squeeze to open the latch. There was insulation along the doors of that cabinet. And that is where you put your trash. Outside, on the back terrace that ran along the inside edge of the courtyard, was another odd looking door that connected to that space. Several times a week someone would come along, open that door, and take the trash out to the dumpster. I don't even know if I even remember where the dumpster was. We always stuffed our trash inside that special compartment. It was, in many respects, the perfect apartment. No, it didn't have a washer and dryer. But just give Mom a bottle of Woolite, and she would be just fine, thank you very much. There was just one problem. It was on the second floor. And it wasn't safe for Mom to walk up and down the stairs along anymore.
Unlike my Dad, who Mom always says I'm just like, Mom could always save up a nest egg. She always had some money. She worked her entire life as a nurse. Following my Dad's death, Mom worked well past retirement to be able to pay for the house. Her final years as a nurse, she worked in a nursing home, and then a retirement home. She hated the nursing home. It broke her heart to see people dumped and forgotten. The retirement home was better. The residents were mobile, social, and reasonably happy. Family still came to visit. I got out of school at 3:15 and I walked the few miles from my high school to the retirement home. I played canasta with some of the residents, and did my homework in the sun parlor. It was the 1970's. I remember that Space 1999 came on at 6:00, and I wanted to see that. But often one of the ladies would stroll in the see the news. I was so disappointed. I can still remember the sound that the blades of the ceiling fan made in the summer. And I remember all of the cats that would come to the door about 6:30.
Katie Davis was a recluse and a hoarder ..... and her room was right across the hall from the lady that Mom was working for. It was a rare event to see her crack that door far enough to actually see inside of the room. But when she did, you would see piles and piles of newspapers, magazines, and who knows what else. She talked to very few people, and honestly most everyone thought she was just a little too eccentric. Others might say crazy, but we're talking about the South, Mississippi specifically. Eccentric was the more genteel word. But everyday, without fail, Katie would always emerge from her room, and walk outside to feed the cats. And for whatever reason, she enjoyed my company. I would help her feed them, get them water. We'd stand there and just watch the cats eat. We'd talk about how this cat looked, or where was this other cat was, and admire any new cat that would walk up. These weren't feral cats. You could pick most of them up and pet them. And Katie always loved petting the cats. After about 10 minutes she'd go back to her room, lock her door, and I wouldn't see her for the rest of the night. Mom would get off work at 11 pm, and we'd go home. We'd be awake the next day at 6 AM, she would drive me to school, then go back to do house work before going to work at 3 PM. And by doing that, Mom was able to pay off her car and the house - after my Dad died.
One day, she was on the way to the doctor's office, when her car somehow ran right smack dab into a large oak tree. She almost made it to the doctor's office. The tree was about 10 feet shy of the driveway, and just across the street from the retirement home where Mom worked, and the hospital that she was taken too. I don't remember who called me. I don't remember what they said. In fact, I didn't even remember that I had no memory of that day until just now. Mom's beautiful 1974 Plymouth Valiant was totaled, but she was well. The doctor said that it was some sort of black out. I would later learn that it was a TIA - which isn't the same thing as a stroke, but it's close enough for me.
I was living in Kentucky at the time. I still am. I drove home to check on her, I even stayed there for a while to take care of her. But she had an amazing network of friends who showed up to visit. They took her to the doctor's office, to the grocery store, and they even took her to work the last few months that she worked at the retirement home. Mom had sold the house and the lady that bought it brought her money every month until it was paid off. She often would take Mom places and visit with her. But in time, Mom began to fall at home. She even fell outside the front door once, and skinned her face. She hated when her face didn't look perfect. I knew that the pathway that she was on was going to lead her to some sort of harm. So, my partner and I drove down to Mississippi. We rented a U-Haul van and drove from Lexington, Kentucky, to Greenville, Mississippi, packed her up, and brought her back to our home. It broke her heart.
Mom always loved the Mississippi Delta. But she was also very excited when I graduated from college and became an adult. She enjoyed to see me happy. She enjoyed to see me explore life. But losing her independence was a paradigm shift for her. After the wreck, she couldn't go and come as she pleased. She didn't like that. She wanted me to come back to Mississippi. But we both knew that I couldn't earn a living there.
Mom lived with us for 12 years after that. The early years were an adjustment period. Then I had my heart attack and almost lost my house. And then I could see her health slowly decline. We stayed at home more and more. My partner and I had cultivated a large network of friends and enjoyed going out. But as Mom's health grew worse, I'd have to decline offers to go out to movies or drinks. And then it seemed like all I did was say no when someone would ask me to join them for dinner, or ask me to drive up to Cincinnati, or over to Louisville. My cell phone stopped ringing. My friends stopped calling. Sure, there was email, but the daily contact, the social interaction, was gone. When Mom was feeling well enough for my partner and I to go out, no one else was available. They had moved on, made newer friends, developed new habits.
So often I would sit there and and just pray that someone would call or text me. But, soon, nobody would. And I began my journey as a caregiver lonesome and afraid.
Garth Brooks was one of my favorite performers. The very first time I heard "The Dance," I was sitting at the marina in Greenville, Mississippi. I knew the very moment that I heard the song that Garth Brooks was going to be huge. And he was. I got to see him in concert once. It was one of the happiest days of my life. As his career wound down, and his songs weren't being played on radio anymore, I'd look for him on YouTube. Early on I would find a song or video. But when I would come back to it later it would be gone. It had been flagged on YouTube, and removed. The only way to listen to his songs was on my old stereo, which was broken. We couldn't afford to buy a new one, and it seemed like a waste to go out and buy CDs just to play on my computer when I had all of the albums anyway. You see, Garth didn't like I-Tunes, YouTube, or any kind of online streaming. It was as if all of his music had suddenly vanished from my life. And it had.
Profound sadness, depression, and loneliness are a daily part of the lives of most caregivers. We're alone, no friends, no social interaction. The mind can play tricks on you. I grew to despise Garth Brooks. His Chris Gaines period made it all a little bit easier. He had taken from me my favorite songs. The songs that brought me such joy, and such happiness.
I was alone.
Just this past year he made a comeback. He sold out multiple venues on multiple nights. But I was still mad. He played four shows at Rupp Arena right here in Lexington. The tickets were only $79. But I couldn't go. I couldn't guarantee that someone would be there to to watch Mom while I went to see the show.
I only bought his new CD this year, and it was because of just one song. I played his song "Mom" at my Mom's funeral. We played it at the service here in Lexington, and then we played it at her funeral back in Greenville.
I can now go and come as I please. And I hate that. I miss her. I keep it together at work and when in public, but it's hard to do at home.
But I'm trying. And if you are reading this, and if any of this remotely resembles a part of your life, I want you to try, too.Let's try together.
A good friend of mine suggested a while back that I blog. I share my thoughts on the internet. I'm enough of a marketing guy that I know that the blog that he was expecting me to write just wouldn't sell. Nobody would read another weather blog, even though I am a certified meteorologist. I haven't been on television since the '90's. That day has passed. But, what if I could share my learnings and my experiences with other caregivers? What if I could use what I've learned to make someone else's journey as a caregiver a little bit easier. That would be worth something to me. And that's what I'm going to try to do here.
And along the way I hope to develop the courage to get back in the society that I was gone from for so long. It's a dream, and I do like dreams!
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