Caregiving Isn't Real Work?

I can't tell you the number of times I've had people remark that I don't really work. I'd like to, but I can't. It's happened too often.

I'm always amazed, and to this day, I'm still stunned by that widely held belief. How do people think I pay my bills? And yes, I do have bills to pay.

What folks never see is all the time, energy, and effort that goes into being a good caregiver. I am constantly putting my own work and needs aside to handle this crisis or that crisis. I don't know what I will face when I wake up in the morning, or go to bed at night.

The last two and a half months have been a case in point. My 92-year-old father woke up one morning, unable to walk. Things went downhill quickly from there. It took weeks to determine that he had spinal stenosis. He spent nearly every waking hour in agony, all because he can't take the pain medications that would relieve it. A medical miscommunication turned out to have difficult consequences for him. Imagine being immobile for two months before you finally get back on your feet. It takes a toll on your heart, your muscles, your psyche....

The pain center was a godsend, but the staff is very busy and there's a wait to be evaluated. I had to push for them to expedite treatment because of all my dad's suffering. Once he had the procedure, he began walking again. He's finally just about pain-free, but now he's got to go through physical therapy again. That means I schlep him to the pool twice a week. All totaled, it's two hours out of my day times two, but a great investment in my dad's independence.

So, picture me pushing him in a wheelchair, loaded down with his swim gear bag, my purse, and his walker, which I sling over my shoulder on a luggage strap. I park the car in the parking garage, wheel him onto the elevator, push him through the maze of halls to the swim facility, wait for him to get into the pool, run upstairs to pay the insurance co-pay to the rehab facility, and then run back down to the pool to wait for him.

When I get home, I don't just go back to my work. I have to do things like straighten out the billing errors from doctors. It's amazing how many times I have been told that it's the insurance company's fault, only to prove otherwise. I'm not looking for a "told you so" moment. I'm looking for the magic fix that will straighten out the ongoing problem. Last month, we were told there was money due back to my father. Yesterday, a new bill arrived from the same office with new billing code errors and no refund. The billing department has trouble straightening out their own work again and again. If we had just gone ahead and paid all the overages this year alone, it would have been hundreds of dollars wasted. Caregivers and patients really do have to pay attention to bills.

But what really has me flummoxed is the popular notion that I need to take care of people, and therefore, people are giving me the opportunity by showing up. A few years ago, a relative invited herself over for dinner. Upon arriving, she took down the Christmas wreath and told me it was time to put it away. When you're a caregiver dealing with serious medical issues, it's really not a priority.

And then there was the relative who got all huffy when I said we couldn't welcome a big group of people to the house. At the time, I was dealing with bleeding issues surrounding my dad's cancer surgery. We had just lost my brother to brain cancer. Instead of the normal reaction of saying, "Is there anything I can do to help?", or even acknowledging my brother's death (that would have been the decent thing to do), I was on the receiving end of some very unpleasant behavior by a disgruntled relative who thought I was at fault. Why? Because I was already having the immediate family over for dinner. What was wrong with serving another ten or fifteen people?

People who are not full-time caregivers have trouble comprehending the concept that it's real work. I recently found fingerprints on the dusty buffet, as a message from a family member that it was time to dust. This same relative goes around telling people I don't have a real job. And yet, I'm the one person who does all the "fixing", whether it's with the bank, the lawyers, the utility companies, or any of the other entities who pop up at the most inopportune times.

I am the person who has to make sure that all of the medications are tracked, dispensed, and taken properly. At one point recently, my father had twenty four pills to swallow in a day, and that doesn't count the weekly medications. Which pills have refills? Which don't? Which doctor treats what conditions?

And that doesn't count all of the loads of laundry I wash and special meals I cook. With so many medications, there are serious issues that need to be accommodated, food-wise. Can't have the sodium found in processed foods. Fiber overload causes serious problems, especially with certain medications. Have to avoid certain foods with certain medications. The list goes on.

I'm up every morning at the same time, following the usual protocols. I work when I can on my own projects, constantly interrupted by this crisis or that crisis. Some nights, I don't finish working on my own projects until midnight. When his health improves, it's crunch time for me. I get as much done on my own projects as I can, because I know that I can hit a major roadblock at any bend in the road.

As a caregiver, I always have a bigger "to do" list than I have time to complete it. I haven't worked much lately on my own Bucket List because my dad's limitations are all too real. He needs care. He needs compassion. He needs comfort. I'm not a caregiver because I have a psychological need to care for people. I'm a caregiver because I love my dad and I want him to remain as independent and active as he can, for as long as he can be. It's about quality of life, not quantity. I work with him to get him over the bumps and humps on the road of life. That's really the key word. I work with him. I don't do for him, I do with him. It's a cooperative effort that makes sure he has a voice in what goes on in his life.

So, if you're a caregiver and you can relate to what I have written here, take heart. Don't let the "civilians" who don't understand what life in the trenches is like get you down. You know how hard you work while you toil at home. You know why you do it. And you know that at some point, everyone is going to need help living. What goes around, comes around. Be kind to your fellow caregivers and offer real support. And don't be afraid to stand up for yourself. It's not an easy job we do, but we do it out of love and respect. There's no shame in that.

New Guide for Caregivers Taking Care of Seriously Ill Patients

Lately, I've been so busy being a caregiver, I haven't had a lot of time to post much. But I did manage to pen a short guide about helping someone you love when serious illness strikes:

The biggest toll that a serious illness takes on a loved one often isn't on the body. It's on the mind and spirit. It's hard to stay focused and hopeful when everything is changing. That's why it's so important for caregivers to understand the psychological impact of illness.

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A Practical Caregiver Mindful Minute



Here's a tip for people who are taking lots of pills every day:

 

The Woman Who Had No Shoes

There once was a woman who had no shoes. She had a fancy car. She had money. She wanted for nothing. But she had no shoes, at least none that have ever been worn.

 

Beware! She's loose among us. You will recognize her by her shoes. Her soles are unmarked. There is not a scuff, not a scratch, not a drop of mud, nor a rain drop, nor a single tear upon them.

How can this be, you wonder? I will tell you. It's because she has no soul. She has never walked a mile in anyone's shoes, not even her own.

In this day and age of endless rancor and bitter attacks, we have forgotten to be civilized, and as a result, the most vulnerable among us have suffered grievous harm to the heart and emotional distress for the soul. Case in point?

I have a very dear friend who has struggled with cancer, cancer treatment, and a myriad of complications for several years now. She happens to be one of the finest people I know. She's a teacher, whose wise counsel has shaped many minds. She's a mentor to children whose lives have been torn apart by circumstances beyond their control. She's a loving and kind daughter, who cares for parents now challenged with their own health issues. She's a writer, whose eloquent voice has inspired so many of us. She's a musician, whose songs have delighted crowds. And now, she's a human being who deserves to be defended in the face of an unconscionable attack.

She was recently out in public, hoping to have a pleasant time after suffering through more physical pain than any person should have to endure. Slowly making her way from the curb onto the sidewalk, she was assailed by verbal abuse that spewed forth from the mouth of the woman with no shoes.

Just imagine how much energy it required for my friend to put one foot in front of the other as those words stung. Picture the effort she made to move each leg as her heart filled with tears. There she was, minding her own business, determined to get on with the business of living her life. And what did she get for it? A vicious insult so outrageous that I will not even repeat the gist of it, because it was so very wrong. This kind, tender-hearted soul was attacked by a mean, self-absorbed woman with no shoes. For those of us who love her, our frustration with the injustice of it all knows no bounds.

My sweet friend is a woman of many shoes. She is the light in a dark world. Every sole of every shoe she has worn is marked not only by her own experience, but by the depth of her love, compassion, and wisdom. She has a closet filled with these relics of her journey through life, and each pair has a story to tell.

The woman with no shoes has made no mark of her time here on Earth. Tis a poor, loveless creature that has never known the joy of being, an empty soul that has never known the treasure of having real love shone upon her. I have no doubt that love is all around her, but until she puts on a pair of shoes that belong to another human being, she will see and hear nothing.

Every time we learn from the people around us, we are made better by it. Every time we put ourselves aside and we seek to see the world from another's perspective, we grow in wisdom and compassion. It's not enough to recognize the differences that separate us. We must take that understanding and make sense of it. Who we are and what we do defines us as human beings. It is our responsibility to make the world a better place, not through tearing it apart, but by shaping it with loving hands.

If the woman with no shoes had taken a single step in any one of my friend's shoes, she could have been transformed. That's how powerful and profound my dear friend's wisdom is. To embrace life with such zeal in the face of overwhelming adversity has created a superhuman spirit that knows no bounds. We need more superheroes in this day of nasty, vile, antisocial interactions.

But to be a superhero, you must walk in many, many shoes. Not just the comfortable ones. Not just the ones that fit, or look good, or attract compliments. You must slip on the ones that pinch to learn about the pain of being narrow-minded and the ones that are too big to understand how much room you have to grow. Your journey begins and ends with you, and how far you are willing to go is something you must decide. When you become tired of the endless bitterness and rancor, put on a new pair of shoes. And as you wear out each subsequent pair, take what you have learned and share the wisdom. That is the power of shoes that have been worn well.