Raising Dad: Before Alzheimer's


One of the most important things to do when you set out to care for someone else, is to learn to care for yourself first.

This is seriously one of the hardest lessons to learn, and one that I keep coming back to again and again. In April of this year, I discovered I managed to gain 20 pounds and 10 percent bodyfat since the first of the year. Since that time, I've lost about 5 pounds, but still find myself watching episodes of "Extreme Weight Loss" and wondering if it might be easier to GAIN 100 more pounds for the sole purpose of having Chris Powell as my personal trainer for a year. Probably not the best idea to cross my mind, but I have thought about it.

Back in '87, I became a volunteer buddy at the Damien Center for people with HIV and AIDS. It was there that I learned about the importance of taking care of yourself first. Before they allowed us to volunteer our time, they asked us a series of questions geared towards making sure we were not in a stressful time of our lives. I was fresh out of college, and passed with flying colors. I then went thru a specialized training informing us about confidentiality issues, and what to expect when working with someone who is HIV positive. This was still in the early days of AIDS when people were only living for 2 years at the most after they were diagnosed, and it was our job to help make the time they had left on this Earth a little bit easier.

It wasn't until a year later that I was assigned to my very first client. By the time they asked if I still wanted to be a volunteer buddy, one of my friends, my dog, and my grandmother all died. I was fired from my first "real" job out of college, and forced to move back home with my parents. In other words, I was READY! Bring it!!!

Bob was the last surviving member of the original "Persons with AIDS" (PWA) support group at the Damien Center. It had been three years since he was first diagnosed, and the two of us became the best of friends over the course of the next three years before he passed away. If I had to give a single reason as to why he lived so much longer than those around him, I would have to say it had to do with his attitude - an extremely positive outlook on life that he got from his mother.

Bob's mother was diagnosed with cancer shortly after he was born, and given 6 months to live. Thirty-six years later, she was still going strong and laughing in the face of death. She was his inspiration, and her story continues to inspire me today.

During the time when Bob and I were friends, I continued to go to buddy support groups on a weekly basis. I remember at one point I almost felt guilty. While the rest of the buddies were spending their time in hospital rooms and dealing with family members who no longer wanted to have anything to do with their loved ones, Bob and I spent our time going to the movies or out to eat. On days when we didn't actually get to see one another, we would call each other on the phone during the "Joan Rivers Show." If he was still alive today, I am sure we would be calling each other during "Ellen" instead. It wasn't until I announced to the group how guilty I felt that one of the other members told me, "That's how this program is supposed to work. The more time you have to develop a friendship, the better equipped you'll be when they need you the most."

Two years later, I tried to "perk Bob up" when he needed me the most. Bob was the proud owner of 10 cats, and despite taking precautions when cleaning out their litter boxes, he ended up with toxoplasmosis, causing him to lose his sight. I brought him books on tape, and offered to describe any of the hot men I happened to see that day - making them up if I had to. But he wanted nothing to do with it. He had given up his will to live, and there was nothing I could do to change that.

By the time Bob took his last breath, I became friends with five other people who were HIV positive, with an emphasis on friends! We spent most of our time laughing and having a good time. Perhaps the one thing they liked most about me was my own positive outlook on life, and the fact I love to laugh - even at the things others may consider morbid and obscene. They knew they could talk openly about their illness if they wanted to, but most of the time they just wanted to laugh and enjoy what was left of the lives they were given.

Still, they couldn't help but worry. They worried about me, and what my life would be like when they were no longer here to give me a hard time. They worried about whether or not I would be able to keep my positive outlook on life, or if I would end up becoming jaded and alone. Most of all, they wondered if I would learn to care for myself in the same way I cared for them.

It's been over 18 years since my last friend passed away. Since that time, I have gained close to 100 pounds, keep to myself most days, and I've become the man of a thousand excuses:

"I'll do it tomorrow."

"Yes, I am a member of Anytime Fitness, and yes they are open 24/7, but I just don't have TIME!"

"I'd love to go out with you guys, but I have to be home by 9:30 to get my dad ready for bed."

"Ok, I'm going to eat healthy tonight... Oh look, McDonalds!"

Or my personal favorite, "I'd like two double cheeseburgers, a small fry, three chocolate chips cookies, and a diet Coke please."

Why am I so fat? I just don't get it! LOL

So in that respect, no, it doesn't look as if I have learned how to take care of myself, and my friends had every right to worry. But I still have hope.

Hope is what keeps us going. Yes I grieved, but I also moved on and changed my life in ways I never dreamed possible. '94 began and ended with me moving in and caring for my last two friends before they passed away on January 13 and December 31, respectively. In between that period of time, I started to do the children's sermons at my church - and I continued to do them every week for the next six years. By "do" I mean I made use of my theater background by creating 15 different characters - complete with costumes, props, and different voices for each - and I performed a different monologue for the kids on a weekly basis that was somehow tied in with that week's sermon. It was more like an episode of Saturday Night Live than the typical children's sermon most people see on any given Sunday, with a religious twist.

Writing and performing these children's sermons on a weekly basis was perhaps the most therapeutic, and definitely the most meaningful, things I could have done. With 15 different characters to choose from, everyone in the congregation had their own personal favorite. There was something about that character that people were able to relate to, or that reminded them of themselves. One of my personal favorites was a man by the name of Cowboy Cal Hooty, "the biggest con artist this side of the Mississippi River". Like all good cowboys, he had a saying he loved to say that is strangely appropriate for any caregivers who may be reading this, "Do as I say, and not as I do!" In other words, MAKE time to go to the gym on a regular basis, eat healthy foods, and socialize with family and friends whenever or wherever you can!

Quite honestly, if I expect to continue caring for my father, then I need to learn to do the same. There are no guarantees with Alzheimer's. This journey can be over in a month, or it can continue on for another one, two, or ten more years. The only thing I know for certain is that continuing on the path of eating junk food, and watching hours upon hours of television, is nothing more than a recipe for disaster - even if one of the shows I'm watching is "Extreme Weight Loss." If I want to continue on this journey with my father, and not pass away before he does, then I need to make sure I am physically, mentally and spiritually strong. This blog is the first step in the right direction, but more steps need to be taken. If not for me, then for my father, so I can continue to be there for him when he needs me the most.


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