Updated 10/11/12: Scroll to bottom for additional information.
I have started this post several times and, like that proverbial author in front of the typewriter with wads of paper surrounding him, I have tossed aside many aborted efforts. It’s hard to put into words how one feels about dialysis and depression. But I’ll try one more time and I will just write without reservations…. here goes…
In a word, dialysis is “overwhelming”. That’s my best description of it. I walked into it gradually as I knew my kidneys were failing. I was lucky. Many people come into the unit via an Emergency Room and they don’t have the time to think about it. I did. But that still didn’t stop me from coming to a breaking point a few months back and come face-to-face with depression.
I had a really crappy year. I kept myself very busy which helped me avoid depression. Frankly, I didn’t have enough time. I worked full time Monday to Friday. I had to get up at 6 a.m. to be to work at 7 a.m. and three days a week I went to dialysis at 2:30 p.m. I only had Saturdays to rest up because Sunday was church. It was a busy schedule but all that ended at the end of November 2011, when I was called into my boss’s office early that morning and told I was “laid off”. Suddenly my world changed and more importantly, my schedule did too. Now, my only activity was dialysis and church. A very large part of my life was over. I had WAY too much time to think about things. I went into a depression but not quickly. It sneaked up on me.
It took a few months and some events with my oldest son getting into trouble before I sank to the lowest point. I felt as though the rug had been pulled out from under me. I really had no reason to live. My economic situation was desperate. I went from a very comfortable income to living on unemployment until my Social Security Disability started. (For some strange reason it takes four month for that to kick in!) I had to get food stamps to make ends meet and that is a real struggle. The Food Stamp people seem to want to make it as difficult as possible. I was enrolled, then denied, enrolled again, denied again, appealed and re-enrolled because the intake person overlooked that I was disabled — a fact made clear on my original application! All that took a couple months. But, hey, I had nothing but time anyway. And it seemed like all my time was spent dealing with problems! It was “overwhelming”. Gee, where had I experienced that before?
I was really, really, really tired of dealing with “overwhelming” things. I was tired of being the person who had to face all the problems and “deal” with them alone. I was like the White Knight slaying the Dragon but that monumental event took place EVERY day! I was emotionally drained. I was tired of slaying the dragon. I wanted to let the dragon win.
Depression builds up gradually. It doesn’t come in the front door and announce itself. There’s not one specific moment you can point to as the onset. At least that was my case. It just built and built over several months. I was vulnerable and each cut of the many I endured weakened me bit by bit. Finally, my house of cards collapsed.
I considered all the factors and decided to stop dialysis. I talked about this with my son and we cried over it but he understood my reasoning. He didn’t like the idea but he was content if that was my wish. He’s always been a very strong, self-reliant person like his Dad. We don’t share our feelings very often with people. We’re the strong, silent types and that’s not always a “strength”.
My biggest fear was the unknown; how long it would take before my other organs would fail and how painful and uncomfortable it would be? But, in my mind at that moment, any further suffering and discomfort seemed less than what I was having to endure. I researched and wrote out a Last Will and Testament to make sure that what little I had left would be taken care of and my heir would not have to go through Probate Court if I was without a Will. I called the Dialysis Center because they had a notary there so I could have the Will notarized as required by state law.
Jill, the Social Worker, answered the phone. I told her of my plan and that I needed to have the Will notarized. She told me she’d have to “research” the matter and would get back to me. In the meantime, she gathered her forces including the nephrologist and his office administrator then called me back and told me to come in and get things taken care of. When I arrived, everyone was there to talk to me. They asked why and I told them. But, it was the office administrator who said the words that shocked me back into sobriety.
She said, “Devon, you’re killing me”.
Those words came from the depths of her heart and went into mine like a spike of reality. I realized that it was not just me and my sons who would be affected by my decision but the people who cared for me. I discovered that their “care” was not only for my medical issues but for me personally. A few minutes later the doctor and I talked. His advice, boiled down to one word, was “Don’t”. Fortunately my mind was open to all their points of view: the administrator, the social worker and the doctor.
Obviously, I’m writing this so I didn’t stop dialysis. Instead I got back on the “Horse of Life” that had thrown me and resolved to continue riding it. A couple months before all this, the doctor had recommended me as a Patient Advisory Committee (PAC) member of the ESRD Network of Texas. That recommendation came through about the same time and it gave me something to focus on. Also, I committed to sharing what I could through this blog and looking for other things I could do to fill my day. I identifyed projects to work on. I filled out a “To Do” list and now I’m busy again. I have more things on my plate than I did when I was working!
Most importantly I dealt with the issue of depression. As dialysis patients, we are but one decision away from death. It’s a reality we deal with every day consciously or not. By entering treatment, we extend our lives one more day and that day may be the one that makes the difference in our life or someone else’s.
A couple weeks after this, I met someone in the doctor’s waiting room. I could tell he was recently discharged from the hospital because he was wearing the hospital wrist band. I introduced myself and we got talking. He said his kidneys failed and he ended up in the ER and the hospital. He was considering dialysis but he said, “I’m 57. Why should I do that? I don’t want to go through that!” Boy was he talking to the right person! I didn’t fall on him like a load of bricks. I simply described my own experience with dialysis and my reasons for enduring treatment. I asked about his family and his grandchildren. I reminded him of all those around him that would be affected by his passing. Importantly, I related to his predicament by the experience I had so recently survived.
Now I’m going to hurry up and publish this. I’ll check for spelling and grammar but, if I think about it too long, I may not follow through and I feel I must for the benefit of my friends and brothers and sisters who are also dialysis patients and may be having a similar struggle. My biggest take-away was to seek out support from others and ask for help; to stop trying to do it all by myself.
Updated 8/28/12: On the other side of this issue, here’s an article about a woman who decided to stop dialysis. I don’t disagree with her very personal decision. I know what that is like. I certainly don’t encourage anyone to do this but I respect her right to do so.
Updated 10/11/12: I just read a posting in a discussion forum where the writer said:
I had dialysis yesterday, and it seemed endless. It has been hurting, stinging, throbbing, infliltrating, fistulagrams, balloons, rogue veins, narrow arteries, and it’s been just over 4 months. I went to bed crying and I woke up crying. I am as alone as I can ever remember.
She went on at length about the details which didn’t get any better. Later in the post, she wrote:
But, it doesn’t seem like enough. All I do is go to dialysis, spend time alone, try to cook and clean for myself, with no appetite and no energy. I have tried to hire help and food services, but I have to watch things as I am not wealthy. I am handling everything from the bills to finding help myself, and it is not easy to say the least. When I am not at dialysis, I am spending my days off on the phone with doctors or on here or something like that, documenting the latest damage, so I never get a break. There is no joy to offset this experience.
It reminded me of how we need to look to the part of our lives that is NOT dialysis and to make that our “life” rather than the time we spend in dialysis. Dialysis sucks! But it for that 12-15 hours a week, we get 150 or so hours to live our lives.