Elden ?Fatty? Nelson blogs at fatcyclist.com, where last year he ? along with Team Fatty ? raised close to a million dollars for LIVESTRONG. He and his team did this in honor of Fatty?s wife, Susan, who was battling metastatic breast cancer.
Please give us a brief background on your wife?s diagnosis, and how long you were her caregiver.
Susan was originally diagnosed with breast cancer at the end of 2003. She had a mastectomy and chemo, after which she was in remission. I suppose you could say I was her caregiver for five years.
But really, Susan kept being an active mom and wife through her first battle with cancer. She only wanted or needed help on the hard days.
For a year or so after she finished chemo, we really thought the cancer was behind us. But then it came back, metastasized all over the place ? her spine, her liver, her lungs, and her bones.
Then came the radiation and chemo, and that?s when I started being the one to really take care of Susan ? or so I thought.
It wasn?t until the cancer reached Susan?s brain in May of 2008, though, that I truly had to become her caregiver ? that I became the one she relied upon, increasingly, for everything.
From that point on, I considered it my sole purpose to make her life as good as possible, for as long as she was with me.
What was the hardest thing about being a caregiver?
I?m going to interpret ?hardest? as meaning ?worst,? because ?hard? can also mean ?difficult,? and I actually relished the difficult tasks ? they helped occupy my mind.
So, what was the worst? There were a few things that stand out in my mind for making me miserable:
? The feeling of helplessness. A caregiver?s job is to make things better, to resolve problems. But when the disease has reached a certain point, you can?t fix some things. You can?t make them better. You can only decide to what extent you want to numb your loved one to the problem.
? Cure-all purveyors. Regardless of the course of treatment you and your loved one choose, there?s going to be someone ? or more likely, a lot of people — out there who tells you that you ought to be doing something else, because it worked for a friend of their cousin or they saw a TV show about it. I spent hours and hours following up on these, and always came away feeling like I had been sent on a wild goose chase, when I could have been spending that time with Susan.
? The ?avalanche? feeling. As the cancer progressed, symptoms seemed to snowball, so that one would trigger another. Often I felt like as soon as I got one problem somewhat handled, another would pop up.
? Telling my children. When we knew for sure that it was only a matter of time before the cancer would take Susan, she and I told our kids. We told them directly and honestly, and I?m glad we did. Still, that continues to stand out in my mind as the single most painful moment of my life. I don?t think there?s any possible way we could have told the kids without it being that way, either. Some things are going to hurt like hell no matter what.
What was the best thing about being a caregiver?
I think most people, at some time in their lives, wonder whether they could be heroic, given a chance. Being a caregiver definitely gives you that chance. While ordinary life is full of grey areas and compromises, being a caretaker gives you a chance to do something obviously unselfish, and to be the best ?you? you can be.
So I guess the best thing about being a caregiver was that I felt like I was able to rise to the challenge. I was able to put aside my normal selfishness, put aside my normal impatience, and put aside my normal absentmindedness. When put to the test, I was as good as Susan needed me to be.
I took good care of her. And that thought comforts me every day.
The thing is, I don?t believe that I?m at all unique this way. I think all people have the ability to rise above themselves and be heroes to the people they?re caring for. And I think it?s important that as you?re taking care of someone who relies upon you in every possible way, that you recognize you?re doing something genuinely heroic.
And every once in a while, it feels pretty good to be a hero.
What were some of the things you did to have ?me time? or blow off steam?
For me, this was an easy thing: go out on a bike ride. Out on my bike, I had a chance to vent, or forget ? whichever I needed. I remember riding my bike out to a trail where I knew nobody was, then just bawling for the next couple miles. I also remember that on the downhill ? for the first time in weeks ? I spent several minutes without thinking about cancer and what it was doing to Susan.
I?m lucky; riding my bike takes care of two big needs a caregiver has: having something that occupies your mind, and having something that occupies your body. If what you love to do isn?t really active, I?d encourage you to find another activity in addition to it. Tiring your body out is a good way to sort of push your mental reset button.
It can be difficult for someone to know what to say to a person at end of life. What do you suggest people say and not say to the patient or family?
What you should not do is start a long story about your friend or neighbor or relative who had a similar circumstance. I know that you?re trying to empathize and show you understand, but ? several times ? when people did this, they wound up getting deeply involved in their own story of pain, and I felt like I needed to somehow comfort them.
I honestly don?t know what the right words to say are, or whether there even can be right words. When someone started stumbling or trying to explain what they felt, I just liked to say, ?I know what you mean. Thank you.? Because I did. If the situation were reversed, I would feel terrible and want to help but know there wasn?t much I could do to help. But the depth of that feeling doesn?t come across very well in words.
So for caregivers, I would say: listen for the feeling the person talking to you feels and wants to convey ? sympathy, encouragement, sadness, and so forth. Don?t worry about the actual words. For situations like this, they simply aren?t adequate.
For people talking to caregivers, I recommend simplicity. Caregivers are preoccupied with a million different tasks and emotions; sophisticated expressions are going to be lost on them. Instead, say something like, ?You?re both being brave. I admire that.? Or ?I know you?re both hurting, and I?m here for you in any way you need.?
What would be the top 3 pieces of advice you?d give to other caregivers?
First, be honest when people ask, ?How can I help?? It took me a little while, but I got so I was completely unafraid to take people at face value ? that they really did want to help ? and tell them what I want. ?Stay here with Susan for two hours so I can take my kids to a movie,? or ?Mow my lawn.?
To my surprise, peoples? faces would light up when I gave them something concrete like this. I found that people really aren?t making offers to help idly; they just don?t know what you most need.
Next, look for little ways you can improve your loved one?s life. As ? thanks to tumors in her brain and a lot of pain meds in her system — understanding the icons on the bed remote became too confusing for Susan, I drew very simple icons on colored dots and taped them over the original icons. As a result, Susan regained a measure of independence for a time, and that felt like a win to both of us.
Third, understand what hospice can do for you well before you think you need it. Susan?s life would have been much more comfortable much sooner if we had gotten hospice involved earlier.
And fourth ? I?m going to give you a bonus one here ? you simply cannot tell or show your loved one that you care about and love her or him too often. Tell them whenever it occurs to you, and if the time comes that they can?t really understand words anymore, touch seems to show it just as well.
Thanks so much to Fatty for sharing his story with us and for showing us all the true meaning of the word “strength”.