A Caregiver's Story: "It's like climbing Mt. Kilimanjaro"

November is National Caregiver Awareness Month. It is a time to honor, celebrate, and acknowledge the millions of family caregivers across the country. AARP West Virginia volunteer Jane Marks shares her personal caregiving story, reflecting on her caregiving experience with her mother.  

 

Some caregivers provide round the clock care, others may have assistance. Some caregivers care for their loved one in their own home, others care from a distance - a few blocks away or a few thousand miles. Nevertheless, caregiving is a challenging task - one that statistically takes a toll on both the physical and emotional health of the caregiver.

It is coincidentally fitting that the month in which we honor caregivers is also the month in which we focus on being thankful.  We most certainly should be thankful for those who provide $400 billion dollars worth of unpaid care each year.  I should know, I am one of them.

It’s like climbing Mount Kilimanjaro.  I was trying to gather my thoughts, find a way to explain it, make sense of what I was experiencing, and it hit me- it’s like climbing Mt. Kilimanjaro.

You see, I should have known how to “be a caregiver.” I began working for a health related non-profit in 2001.  In my position, I interacted with caregivers almost daily. I attended trainings, conferences, read the recommended books. I listened and I learned. As my expertise grew, I wrote articles, began presenting at conferences and even facilitated a caregiver support group.  And then I became a caregiver for my mother.

A childhood friend climbed Mt. Kilimanjaro a few years ago. He wrote a book about his experience and in the book he stated that while he trained for months, read books, watched documentaries and even spoke with others who had made the climb, none of it truly and completely prepared him. The actual experience was more difficult, more challenging, more physically and emotionally exhausting than any preparation.

It began with having to take over her check book. I would travel the hour to her house every couple of weeks and pay her bills. She would have them ready for me.  I would write the checks and balance the checkbook; she would slip them in the envelopes and put on the stamps.

Then I realized she should no longer be driving. My siblings and I agreed to hire a private caregiver to be with her several hours a day, take her to the grocery store, to her volunteer duties at her church, and prepare meals.

There were several falls, and trips to the ER. I purchased the “I have fallen and can’t get up” system…but she didn’t like to wear “that thing” around her neck. Hence, when she fell and broke her hip the first time, she was on the floor alone until she finally managed to drag herself to the phone.

During this time, I knew what I was doing. I knew how to navigate the process. I knew where to find the best physicians.  I knew what to ask when interviewing caregivers.  I knew how to rearrange her home to make it safer for her.  I even knew how to find a “place” for mom.

After the second hip break and with her physician’s recommendation, my siblings, who did not reside close by, and I agreed to place her in an assisted living near me.  I was the one with the knowledge, it made sense that she be near me.

Eventually, however, I realized I could no longer continue to work full time, care for my mother, have any sort of relationship with my husband, enjoy becoming a grandmother for the first time, and keep my sanity. While I loved my job, something had to go so in 2013,  I made the difficult decision to “retire” from my position as an Executive Director of a statewide organization.

Yes, the tasks are challenging and sometimes complicated. Just trying to navigate the healthcare system, and understand the bills can be daunting. But what I was not fully prepared for were the emotions. Yes, I had heard about them, been told about them, read about them, worked closely with those experiencing them, but there is nothing to fully prepare you for those feelings.

I knew the “rules.” I knew the recommendations on self-care. I preach them to others. So, as a caregiver, I do take opportunities to rest, to take a few days off, to try to continue my hobbies and interests. I am blessed in that we have paid caregivers, wonderful, loving and loyal ladies who spend many hours caring for my mother.

But the toll is still being paid: phone calls late at night when she has fallen; trips to the ER and more broken bones; urinary tract infections; dehydration; arguing with her when she refuses to take her meds; many doctor visits; and, her attitude toward me.

You see, I am the “enforcer.” She views me as the enemy - the one with the big stick -  that urges her to eat; begs her to drink more water; explains that she cannot just refuse to take her meds, those meds HELP her; the one that makes her stay in “ this place” and won’t let her go home.

So, while a shadow now looms over my mother’s mind and body, I too, feel as though a dark shadow is looming over my life.  Lately, I notice that “fun” is not as much fun. Spending time doing the things I love doesn’t have the usual calming effect. They seem more like a chore. And when I do go and try to do something fun, then shortly it is back to the same - watching a loved one, slowly, oh so slowly, decline. And my emotional fatigue returns with a vengeance.

I find myself overwhelmed with guilt when I realize I am thinking: “it is time for you to die now. This has gone on long enough. You are miserable. It is time.” How could I have those thoughts about a loved one? What kind of person am I if I have those thoughts? And then feelings of despair and failure become entangled with the guilt.

I say to myself, it is not about me. It is not even about my mother. It is about these insidious diseases - cruel, underfunded, too often ignored, blasted, diseases of the brain. But the fatigue is taking its toll.

It seems that I now find myself wanting to do what I have seen so many other caregivers do. I want to RUN, I want to FORGET, and I want to do something far different and distracting – far from the realm of despair and yet….

I cannot. Tomorrow there are tasks to be done, comforts to be offered, needs to be met. Lately she is not sure of where she is. When will she wonder who I am?  Today I am the enemy. Yet, I am also her touch stone. I am her security. I am her advocate. I am her daughter.

So, if you are a caregiver, know that you are appreciated. Give yourself a pat on the back and recognize that you are going the best you can. And if you know a caregiver, please give them a call, stop by and ask what you might do to be helpful, or just give them a hug.  It could make a world of difference.

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For more on Jane's caregiving journey, visit her "Sandwich Caring" blog at: www.sandwichcaring.com