“Just try the new toilet seat, you’ll like it. I bought it because it is raised and you’ll be able to stand up with ease”, I explained calmly.
“NO!” Dad stated with a stubborn resolve that I know only too well.
“Look, if you have an accident because you couldn’t make it to the toilet I don’t mind cleaning up, but if you have an accident because you’re too stubborn to use the new toilet seat, I’m not cleaning up after you.”
I was a little ashamed for giving him an ultimatum, but I could not spend another 10 minutes trying to convince him to use the new toilet seat. Sure, I could just take it off and admit defeat, but he’s had problems getting up lately and this seat will help him stand up without help. In my opinion, this is a solution that allows him to still have some independence, and hopefully a little dignity. Although right now he would disagree with me on the dignity aspect of things.
Some days my patience and love for my father feels infinite. Other days they feel a little shaky. It’s not that I don’t love him, I just have days when I to go to a place that is filled with frustration and anger. Thankfully those days are few and far between.
“I’m sorry Mom, but if Dad ever needs total care (eating, washing, bathing, dressing) we’re putting him in a home. I don’t think I can do the things I do all day at the nursing home, not on my own father. It’s too weird.”
It sounds callous, but there you have it. I’d clean a stranger’s ‘family staff and jewels’, but there is no way I’m looking at my father’s, let alone cleaning his! Nope, that was mostly definitely not for me.
It was a time in my life when I was filled with stress and worry. I had panic attacks over being two minutes late and fought to control my life as much as possible. I had spent my teen years trying to melt into the background, unsure of where I belonged, and internally questioning everyone’s true feelings and motives (a side effect of being molested at the age of 7, and hiding it for 10 years until the guilty party had died). Unfortunately, stress and worry seemed normal, and I simply accepted that this was my life. Thankfully I woke up from that twisted reality a few years later, quit my job, and embraced the intoxicating freedom that comes with long-term travel. A foreign concept to my stressed out brain.
In the last four years, I have travelled solo in Southeast Asia, China, Mongolia, Sri Lanka, and in a couple countries in Europe. I’ve taken a 45-day overland tour through Africa with 20 other people (Wow, that was challenging), and attempted to do the Mongol Rally with a total stranger, but only travelled from Prague to Ashgabat. I have had many adventures, and I have learned a couple of valuable lessons, the most important one being love.
Love of self-was the hardest lesson to learn. It is something I have struggled with from the time I was seven years old. I felt loved at home, but nowhere else. I used my work to distract me, but when I no longer had my job as a distraction, I had to face my fears head on. Travel helped me to do that. It wasn’t easy; especially since I am not a skinny girl and I have ginormous boobs, which make me stand out pretty much everywhere I went. I had to learn to not care about what others thought, without becoming bitter. I had to learn to love myself enough to love them, despite the stares and the pointing.
It was not an easy lesson to learn.
Love is hard, especially on the days when anger is close to the surface of our subconscious. There were times during the last four years when I have been frustrated to the point of tears. Times when I hid inside a hostel or hotel, refusing to leave the bed. China, Sri Lanka, Mexico. I’m human, and not perfect (despite the fact that I tell my nieces I am; although I doubt they believe me), and thankfully when I learned to love myself, I learned that being less than perfect is better than being perfect.
When I started to love myself, I started to hold my head up a little more. I learned to find things to love in every country I visit, not just the people, the food and culture as well. Sure, I still have those days of frustration, but they don’t happen as often. And that is a good thing.
Love is power. And I don’t think I would have learned how important it is to have love of self, and love for others had I not quit my job to travel. I needed to be away from my coping mechanisms (work). I had to be thrust into uncomfortable situations where the only choice I had was to face my internal demons.
My father slowly shakes his head disapprovingly as I try to convince him that yes, he does need to eat his dinner. It’s a conversation that happens many times, and I have learned to start asking him to come to the dinner table almost 15 minutes before we serve dinner in hopes that he’ll get there while his food is still warm.
Every morning I sleepily roll out of bed (sometimes literally) and put on my imaginary negotiator’s hat. My days are spent trying to write and negotiating over things like eating, changing clothing, going to the bathroom. I try to guide him away from children in stores as most parents get edgy and we talk about how the children at church are different, as they know him.
Six years ago I swore I would never care for my Dad, and now that is exactly what I’m doing, and it seems like the most natural choice. I get frustrated, but I love him. I love his newly found innocence. I love his goofy moments. I love that he allows me to help him when he is having difficulty. I love the excited look on his face when he decides he wants to buy my Mom flowers.
It’s weird. I feel as though I should be frustrated and angry every day, but I’m not.
Dementia is a jerk, and there are plenty of reasons to be filled with constant frustration and anger, but that is not who I am anymore. I don’t care if we’re late because he’s confused as to what is happening. I don’t care if he walks around the house in his underwear (unless we have company, of course). I don’t care that there are times when I am helping him to change his clothing at 2 am because he has had an accident.
Today I realise that I was wrong when I said travel didn’t change me. It has. Travel taught me love of self and of others. Love, in turn, helped to change my perspective on life and helped to shape my character. Learning to love myself and others has allowed me to love my Dad in a way that I didn’t think was possible.
I may be angry at dementia as a disease, but that is not my focus in life. I love the time I have with my Dad. And I love that I can be the person he needs me to be.