Putting the Self-Care in Caregiving

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Fields of lavender (Mom’s favorite color) at Springfield Manor in Thurmont, Md.

My mother fell about a month ago. I was there by her side, but I didn’t have a good grasp of her hand, and suddenly she was falling, and there was nothing I could do.

She hit her head hard, so we called 911, and the paramedics took her to the hospital. Everything checked out okay, but a day later her face looked like she went 12 rounds in a boxing ring.

For the past four weeks now, when we go to one of her doctor’s appointments, I make sure our fingers are intertwined as we walk to and from the car. The intimacy of this hand-holding is almost unbearable—it exposes a vulnerability I’d rather not acknowledge. And it harkens back to childhood and innocence, before our roles were reversed.

Last summer my mom’s kidney doctor began preparing us for the fact that she would need to start dialysis treatments in about six months’ time.

Anyone caring for an aging parent or seriously ill family member knows the feeling that comes with this moment. Life is about to change, and your control over it is precarious.

My entire body clenched, and I was immediately transported back 10 years, to when my mother still lived hundreds of miles away.

“My doctor says I’m going to need dialysis soon,” she told me on the phone in 2008. When she was a young girl, an appendix operation had revealed that one of my mom’s kidneys was not functioning and would need to be removed. I was aware that my mother’s single kidney would eventually wear out, but I was hoping it would be much later in life.

She added: “I’m not going on dialysis. My friend Carol told me terrible things about it, and I won’t do it.”

“So, you’re just going to let yourself die?” I asked. No answer.

I realized that I would need to make a swift and assured transformation from apprehensive daughter to protective parent figure.

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At the Kapok Tree Inn restaurant in Clearwater, Fl., with Grandmom and Mom on my birthday.

I went to visit Mom in Georgia, so we could see her nephrologist together. I had previously tried to communicate with this doctor via phone and email about the status of my mother’s condition, but all I got was an envelope in the mail containing a printed page about kidney disease that I could have Googled myself.

In person, the doctor assured me that dialysis was not yet on the horizon. My mother had misinterpreted or imagined the whole thing. Relieved as I was, I did not see this misunderstanding as an encouraging sign.

I went back to Maryland and tried to put my concerns out of mind. There was no health emergency to speak of, and I hoped that I could continue to monitor the situation long distance.

A year later my mother confessed on a call that she had not left her apartment in over a week, and no one in the senior living facility had noticed. No friends or family in the area had called to check on her. When I was in my teens, my mother had suffered a severe depression, and I feared that she could be on the brink of another major episode.

My husband and I had a long talk that night. I was in my early 40s at the time, which seemed too young to be taking in a not-quite-elderly parent. My husband and I had been married less than two years. We had just bought our first house together, and we were enjoying being homeowners. Together, alone.

I was anxious at the prospect of my physically and emotionally demanding mother coming to live with us. Would it be a disaster from the start? Would I fall apart? Would my spouse slowly grow to resent me over the years?

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The dog gets lots of long walks.

My husband and I will never know if we made the “right” decision. To this day, eight years later, I occasionally review the pros and cons. And on most days, I conclude that the choice we made makes the most sense. But sometimes, when Mom calls upstairs at midnight to ask if we have an extra roll of toilet paper, I entertain second thoughts.

Acting as my mother’s health advocate, which is akin to a part-time job, is certainly easier with her under our roof. I manage her medications and go with her on all doctor’s appointments, taking detailed notes. Fitting her care into my work schedule is challenging and requires an understanding employer.

My mother has had three long hospital and rehabilitation stays and numerous out-patient procedures since she came to live with us. Both of her knees have been replaced (at the same time!), and a few years later she fell and broke a hip.

My heart goes out to every caregiver who has ever stalked the hospital halls looking for a nurse who has time to listen, who has worried about how many painkillers their parent is taking, or questioned if they should call the doctor’s answering service yet again.

When dealing with a family member with long-term health issues, self-care is critical. Caregivers must be proactive about their own health and well-being.

In addition to making sure I don’t put off my check-ups, I try to exercise, meditate, and spend time outdoors regularly. Writing and other forms of creative expression are real sanity savers. And sometimes, I simply need to be alone, even if it’s just to go shopping by myself.

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Out on Lake Linganore in New Market, Md.

My husband has been patient, and I am grateful that he is so supportive. But I can’t take his kindness for granted—I must prioritize partner-care alongside self-care. Is our relationship strong enough to weather any condition? We’re about to find out, because the storm is a comin’.

This time my mother’s kidney really is failing, and she has agreed to go on dialysis. Mom and I have attended a class, and she has been through multiple procedures to prepare for the upcoming treatments.

I will soon explore support groups for caregivers, and I have committed to start putting “me time” on the calendar so I remember to relax, reflect, and recharge.

At the top of my list is boundaries. I have never been very good at drawing and patrolling a proper perimeter between the two of us. Much like our hands when we walk to the car, our lives have become unavoidably entangled.

But as every good caregiver should, I will now strive to steady my mom while keeping my own feet firmly on the ground.

Next time: Something different!

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Mom and me outside the house in New Market, Md., where her bionic knees help her walk up and down lots of stairs.
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