Some people are saying–if someone tells you to make sure you’re taking care of yourself one more time, you’re going to scream.
Well, the fact is, newbie caregivers don’t always know they’re supposed to take care of themselves. They’re so focused on their chronically or terminally ill loved one, and perhaps emotionally drained in the heat of the moment, or the passion in what their trying to do. They simply don’t know the rules as defined by logic.
Well, that was me! The new superhero caregiver living in the strange new world of cancer with a loving spouse. If anyone could do it, I certainly could.
The doctor said, “Bob, you are not prepared for this, are you?” Do you even know what a caregiver is?
To my dismay, I had to answer both those questions with a resounding “No.” But did that really matter? No! I didn’t care. I was naive, full of hope with a lot of optimism.
Yes, I was a newbie—I’d never had any experience with cancer or even had an understanding of what a caregiver was, but still, I was convinced I was a superhero and could do it all. After all, how hard could taking care of a terminally ill loved one be?
The first couple of months I was ran off my feet, lost 18 pounds, and was literally worn out. But with my super powers, I willed myself onward, seemingly going where no other had gone before. After all, when does a person with super powers ask for help or throw in the towel? The stakes were simply too high. Annie was dying, but I was confident that if I just fought a little harder, cared a little deeper, and became relentless in my caregiver duties, I could perhaps make a difference, and get her more time.
Then the walls came tumbling down–the monster in the room.
What does that mean? Well, cancer was all powerful and didn’t give a damn about my super powers. Cancer laughed at me, and with a smirk said, “do you really think you’re going make a difference in the end?” I’m going to take your Annie, and I’m going to do everything I can to bring you and your whole family down with her. Cause I’m now out of control, and reaching beyond anything you can possibly understand. It was a given that cancer would never lie or try to deceive a superhero caregiver, it didn’t have to. It’s sole purpose was hell bent on taking another life in any manner or form it could take on.
Pneumonia, “ain’t notin but a thang.” It’s one of cancer’s best weapons and works tirelessly to bring down the weary, the frail, the sick, always probing for a weakness in the loved ones defenses. Cancer loves handing out shingles too, leaving the loved one with dangerous and painful blisters that fester causing infection with great distress. Blood poisoning, yes, that’s in cancer’s evil bag of tricks and on cancer’s favorites list too. It’s the sneak attack, and if not caught within the first three hours or so, it’s usually light’s out. And if I really dig down deep into cancers bag of tricks and pull out some of the other weapons it used against Annie, I could add a broken hip, broken femurs, collapsed spine, broken ribs, lesions on the skull, stroke, blindness, and the list goes on and on. Cancer wanted Annie bad, but my super powers were working overtime and starting to make a difference. It was becoming a battle of attrition, who was going to blink first.
Battling the monster
Some monsters just can’t be killed, but my resolve to fight every battle on a more level playing field never waned. I worked overtime figuring out ways of identifying potential life threatening events and getting emergency intervention as the events started to unfold.
Cancer hated me…I was relentless, a body in motion, always leading and directing Annie out of harm’s way as best I could and as quickly as possible. When the monster is in the room and preparing an attack on a loved one we have to act quickly by setting up our defenses and plan on fighting for every inch of ground we gain. A simple sniffle for Annie with her low immunity, immediately provoked a reaction in me and started me drawing the battle lines for our next fight. My first defense was to start her on Levaquin, a very good antibiotic for pneumonia. Then over a day or so if her chest felt tight or she developed a gentle cough, I took her to the clinic for x-rays. Simple enough, yes, but according to the doctors many battles (lives) are lost during that event. It’s imperative to catch the monster early and stop it in its tracks. Sometimes Annie would be hospitalized with pneumonia, and sometimes she wouldn’t. It happened often.
Taking care of me–the trap
This was not my strong suit. I was a selfless, self-sacrificing, and in some ways seemed to be looking for martyrdom, although I didn’t know that and it certainly was not my intention.
My happiness seemed to revolve around hers. And as she was not a happy camper most of the time, nor was I. I mean, how can I be happy when she is continually laying in her hospital bed feeling miserable? How can I eat when she can’t eat? Those are simple questions with seemingly complex answers.
As caregivers for chronically or terminally ill loved ones over a lengthy period of time, we must take a break when and if we can. We are not really “superheroes with super powers.” We can’t defeat anything if we get sick from burnout or caregiver stress, also known as caregiver syndrome. Even soldiers on a battle field get food, water, and often times nap or sleep when the enemy sleeps. Over time, I learned to get my rest while Annie slept.
At about the two year point in my caregiver role for Annie, a nurse came to me and told me I need to take a break from caregiving, and get away for awhile.
I just laughed at her while thinking out loud…That had to be some sort of a joke.
I’m serious Bob, you’re going to get sick and will not be any good to Annie. Plus, you’re most likely doing irreparable damage to your body. You never seem to stop or slow down—and you must.
I scoffed at that statement at the time, as I was still strong and energetic. I didn’t have a clue what I was doing to my body. By this time, I knew I was going to lose Annie at some point in the near future, and when I lost her, I was going to lose me too. So why should I even care what was happening internally to my body.
What a cavalier attitude I had towards myself and the whole caregiver issue. My goal, my mission, was to bring everything I had to the table when caring for Annie. No whining, complaining, or short cuts. I was all in, and as told to Annie by me, “as long as I’m standing, I’ll do everything I can for you.” Noble statement and factually true, but has now brought consequences to bear that have now challenged or left me questioning why I didn’t take better care of myself.
Problem was, my brain forgot to send a memo to my body that internal events were being set in motion that would sooner or later rear their ugly heads and bite me. And they have. I have prostate issues, A-fib, low red blood cell counts, been on antibiotics and steroids for lung infections–three time in the last year, and just recently got over a bout of shingles. It’s embarrassing when a specialist MD can look you in the eye and say, I tried to warn you, but you wouldn’t listen.
Okay, so I’m an idiot. Would I change things and events of the past concerning my caregiver duties? Nope! Not a chance. That was a display of my love and level of commitment to my wife. And yes, she got some time she didn’t have, through extraordinary caregiving…That fact was pointed out to Annie by her friend and Cardiologist Dr. Farhat, two weeks before she died. He looked her straight in the eyes and said, “Annie, do you even know why you are still here?” She gazed back at him, her eyes locked to his, and he simply pointed at me saying, “and I’m convinced of that.” I didn’t know that, and it really had no role to play at the time as Annie was near death. I guess it was a case of what you received (more time) versus what you have now (no time). Those facts became irrelevant.
So when I say you are not a superhero with super powers, that might be a stretch. You might be like me, living in a naive world where your body knows no boundaries, but if you are, be prepared for the consequences later on, if in fact you are not already experiencing them.
My biggest problem was, I didn’t trust anyone with Annie. And I didn’t believe anyone would come close to rendering the level of care I gave her. And that may not be true, but that’s how I felt at the time.
You see, the nurse I talked about earlier had schemed with my daughter behind my back and set up a network of volunteers to care for Annie while I got out of Dodge for a few days. I can smile now, but back then I flipped out. I didn’t even give their request an ounce of consideration or a bit of wiggle room with my answer. I was precisely on point…Absolutely not! There was no way I could drive away into the sunset for a period of time, leaving the love of my life behind battling the monster, and not worry about her every second I was away. In essence I would be more stressed away from her than I was with her. That’s not a break!
And another thing–with many terminally or chronically ill patients, depending on the illness, the loved one will focus on the person they believe or perceive will give them the best care, in meeting their needs. If Annie was in trouble, she always called my name. “Bobby, please help me.” When I went to get her medications, as I was the only one that could, I’d leave my daughter with her. She always worried until I got back, and as soon as I arrived home she’d relax again. You cannot put a price on that, or turn those words over by substituting another name. It doesn’t work that way. It’s about commitment and love. I honored my wife, and if it means having problems 4 years on, well, so be it. At least I can look in the mirror knowing I never let her down in her darkest hours. And let’s be fair…I’m alive, doing fine, and she is–just gone.
Yes, I was an extreme caregiver. And I’m sure there were things I could have done to lighten my load. For example, most people don’t stay at the hospital 24/7 with their loved one as I did. We spent over one-hundred days in the hospital together.
One evening Annie’s male nurse said to me, why don’t you go home and get some decent rest.
I told him I couldn’t leave her alone. I think that offended him and he responded, you don’t need to be here all of the time! His sharp tongue at that moment, was exactly why I needed to be there for Annie. I was her advocate, and believe me, on the cancer ward, by ratio, there is way more patients than nurses. One night a couple of nurses called in sick, and on one half of the cancer ward one nurse had fifteen cancer patients. The neglect is ever present, but the blame usually fell at the feet of the management and not the nurses. That poor nurse was worked off her feet for a few hours until help arrived, and everyone was late getting their medication, except Annie. I would wait by the locked door to the medication room just prior to Annie’s due time, and when the nurse came in to get medication for someone else, I’d get Annie’s medication at that time. That is a responsibility of a caregiver/advocate when in crisis mode. We step up to help the nurses. They never had to worry about Annie.
Sooooo, if you are not me and don’t want to end up like me, then don’t follow in my footsteps. Take a break if you can. We may be superheroes of the mind, but we don’t have super powers. This mortal thing is real!
Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.