Editor’s Note: This contribution is by Allan Brindell.
I’ll never forget the day that my journey into the area of “care giving” began. Life was good! Everything was good for me; good for the family and things were going the way I wanted them to be going.
It started on a Friday night that I will never forget. It was June 30th, 1989. I was busy at work, finishing things up and getting to relocate to California. I had wanted to move back there for such a long time and finally had my chance. I was to move within the next week or so.
Family was good on the Friday in June my mom had retired that day after working for the same company for about 19 years. So my mom and dad decided to go out and celebrate my mom’s retirement. They left and within maybe a half hour my phone rings. It was a phone call I will never forget for it had changed everyone’s life forever. It was my mom on the phone, dad just had a stroke at the restaurant.
I rushed out of the house frantic. And as I was driving, I know what restaurant my mom said they were at but I drew a blank. So I pulled over not being able to think straight. Where are they I’m blacking out. Then I saw an ambulance rushed by with the lights going. My instinct said follow that ambulance. My luck must have been with me for that was the ambulance going to where my dad was.
I remember seeing my dad in the back of the ambulance and then proceeded to meet them at the hospital. The emotions for everyone was running high that night. After hours at the hospital my mom and I returned home. As we were standing in the kitchen all she said to me was “What are you going to do?” [meaning about the move that was coming up] My response was basically I don’t know I don’t have a clue. Eventually I was able to delay the transfer for a short period of time. When I did leave to move on that Sunday morning I walked out of the house in tears not being able to look my mom in the face. I drove off not being able to look back. I made the 3,000 mile trip to California in 6 days alone. By the time I got there on that Friday my decision was I can’t do this. So 2 days later I turned around to make the same 3,000 mile journey to be at home where I belonged in the first place. I have no regrets on the return. After all isn’t that family is supposed to do.
Thus began the journey of my mom and I being care givers for my NOW disabled dad. Trying to deal with a different man from what we knew all those years. He was usually a quiet man; a family man. But looking back I now saw a different man. He was now dependent on US for his care. He was different physically and emotionally. He was paralyzed on his left side meaning that the stroke occurred on the right side of his brain. So physically he couldn’t do like he did before. And emotionally he was a changed man. He would be sitting at home at times in tears. I would look at my mom and we would just glance at each other like “Why is he crying?” My mom would shrug her shoulders and just try to say I don’t know why he is crying. His long memory for whatever reason was intact. I would hear the same stories that I always had and heard a million times as a child. But his short term memory was another issue. The same questions over and over again and usually minutes apart.. As time went on some sort of dementia set in. He would go thru periods of outbursts for no reason at all. He became difficult to handle. He would hallucinate.
In the interim, after my dad had his stroke in June of 1989, my mom took ill. It was the end of 1990 I guess. My mom had several bouts of cancer – lymphoma. But this time was different. The doctors were having trouble getting the cancer under control. My mom progressively was getting sicker and sicker as time went by.
So from 1990 on I became the sole care giver for both parents. I would be at work and would get an urgent call. Come home you have to get me to the hospital. Mom didn’t want to call the ambulance, she wanted me there. So I would rush out of work. I can’t tell you how many times I had to leave work because of the family emergency. My mom eventually passed away in June of 1992.
So I was still taking care of my dad at this point. But it was tough trying to deal with 2 ailing parents at once. I didn’t know which way I was turning. It was after my mom passed away that my dad began with the hallucinations; the outbursts. He would become more and more difficult to handle. I couldn’t talk to him. I couldn’t reason with him.
There was one time my dad was in the hospital for something and in the middle of the night I got a call from the hospital. Come down, we cant control him. We need to medicate him. So I would go running at 1 or 2 o’clock in the morning. Once I had to help the doctors control him to medicate him and my dad was so mad because of what was going on all he was able to say was that he had no son I was dead to him. Again outbursts.
And at times seeing him medicated in the hospital and being placed in the psychiatric ward. He didn’t have a clue as to what was going on.
I can’t tell you how many times I would sit back and look at my dad and think, “This isn’t my dad.” This isn’t the dad that I grew up with. He was a changed man for the worse.
It was ever so difficult being a care giver. For after the time that my mom had passed away, I began the worst part of my own journey as “patient.” I started to have one surgery after another. And while I was at home trying to recover on my own from surgery at the time, I was also playing the role of care giver. I had to wear 2 different hats at the same time. And whatever was going on in my own life physically I couldn’t talk to my dad about it. I couldn’t get the emotional support that I needed as well. He wouldn’t understand and was always afraid of dumping on him more then he could have handled emotionally.
So what did I go thru personally as a caregiver? I went thru periods of anger; frustration lonliness; despair. I had no where to turn to. I had to do it alone. I needed to have some sense of control over what was going on, but yet looking back I was probably, no I can say I WAS out of control. I was out control emotionally spiritually and physically. i was your classic example of what a “burned out” person probably was. I couldn’t deal with my dads emotional and physical needs and I certainly wasn’t handling any of my own needs. While I tried to find time for myself, mini vacations. While I may have been away from home physically, mentally I was always at home. Always wanting to make sure that he my dad was being taken care of. I was a lost soul.
And while my dad has been gone going on 10 years now I am still trying to deal with things. Things that were ignored or thinking of the things that I should have done differently while my dad was still alive. Angry for what went on that maybe I could have done things differently or handled things better. But when you get caught up in a situation — a catch 22 — you start to spin in circles and can’t get out of where you are at.
I feel that thru the care giving process I have walked a million miles. Wishing ever so much that I could turn the clock back. Finding a better way of doing things or a better support system. But I realized that I didn’t have a support system. Doing it ALONE you find yourself in that dark lonely place wondering if anyone ever will understand what you have gone thru.
So when I hear or see another person in a care giving position that is living the same lfie that I did ever so many years ago, I tend to relive those moments. You never truly forget the role of “care giver” for the impact it has on you, only you can tell that story in hopes that someone else doesn’t have to have the same experience.
Now I understand the importance of being a “care giver” and I certainly undertand the emotional; spiritual and physical impact it has on you. Whoever is a care giver all I can say is “if possible don’t do it alone or think you can do it alone” & “wherever possible get the support that you do need in such a time!!!!”