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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Resistance is Futile: Embracing the Parent Within

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Great Stuff by Paul Antiques in Frederick, Md.

Recently a friend shared a clip on Facebook about the secret to living longer. In the TED Talks video, Susan Pinker claims that social integration is the top factor associated with a long life. She describes this practice as “how much you interact with people as you move through your day . . . not just the people you’re really close to who mean a lot to you, but do you talk to the guy who everyday makes you your coffee, do you talk to the postman, do you talk to the woman who walks by your house everyday with her dog…?”

My first thought was, OMG my mom is going to live forever. You see, my mother talks to strangers. All the time. Sometimes this practice is charming, and sometimes it’s not.

Whenever we go to one of our favorite pizza places, mom stops the manager as we are leaving to compliment their hard-working wait staff. Sweet, right?

Then there’s the time we were on a road trip and stopped to use a public restroom. A woman close to my mother’s age was brushing her hair, and as she stepped away from the mirror, my mom said, “You look beautiful.” The woman laughed at the unexpected compliment and said thank you.

If the scene had ended there, it would have been a nice moment between two 70-something women. But as the other woman turned to exit, my mom added, “Now you’re supposed to say the same to me.” Ugh.

Most of us start out adult life confident that we will never turn into our mother or father. Most of us—possibly all of us—are proven wrong eventually. If you are vehemently disagreeing with me right now, let that resistance go.

Maybe you won’t actually become one or both of your parents. But one day you will hear that goofy expression of your dad’s come out of your mouth. Or you will catch yourself doing that thing with the paper towels that your mom always does.

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Me and Mom on my 11th birthday.

I was close with my mom when I was growing up, a closeness that sometimes felt more like a straightjacket than a hug. There was no dad or significant other to act as a buffer, and her emotional state was loosely knitted together. I loved her, but I was eager to wriggle out of the grasp she had on my life. As soon as I graduated college, I moved a thousand miles away in an effort to build an identity separate from her.

From most angles, it appears that I’ve succeeded. Our lives have been quite different, and our personalities even more so. When my mother first moved in with me and my husband seven years ago, I became assured that I was thoroughly unlike her.

Mom arrived in our state with a driver’s license and Social Security card that had different last names on them. It took us at least five trips to the department of motor vehicles, plus a trip to the Social Security office, before she finally got her new driver’s license. About a month later, mom informed me that she had lost this license. The birth certificate we had to order online was also missing the next time we needed it.

I, on the other hand, work hard to stay organized and feel itchy at the thought of not being able to find something.

Not long ago, my mother was out with a friend shopping and, on impulse, she purchased a mattress and box spring. She did not need them, nor did she have the money for them. She opened a credit card at the store, even though she knew that she wasn’t supposed to apply for any new credit cards. It took me endless calls and tweets to get the order canceled.

Meanwhile, I grow sweaty upon making major purchases and avoid going into debt at all costs.

My mom has been banned from watching football with my husband because she mostly reads magazines and then looks up and asks what just happened—repeatedly.

She talks over doctors and nurses as if she knows what they are going to say. She doesn’t really listen to them, which is why I always go along to take notes.

My mother also has a “creative memory.” In one such case, she has a completely different recollection of the days after my grandmother died—a memory of what might have been rather than what actually happened.

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Great Stuff by Paul Antiques in Frederick, Md.

Despite all these differences (and there are many more, I promise you), my husband can attest that I do share a few traits with my mother—like our tendency to tell long stories full of unnecessary details, our inclination to overreact to minor frustrations, and our penchant for commenting on how poorly certain celebrities are aging.

And I hear her in the passive-aggressive way I talk to my stepson sometimes. Suddenly I am transported back to my own childhood, hearing my mom’s frustration with me hidden behind a manipulative question or a sarcastic comment.

However, as the days and years go by, I realize how important it is to focus on the positive, to be grateful for the attributes that I don’t mind sharing with my mom: her love of music and dancing, her fondness for laughter, and her genuine interest in people of all kinds.

Whether we like it or not, aspects of our parents’ personalities—good, bad, and complicated—are bound to show up in our own. Maybe it was always meant to be, that an echo of those who raised us would ultimately reverberate in our own bones.

Perhaps this recognition is an invitation to forgive and accept our mothers and fathers as fellow human beings. Rather than be embarrassed or in denial about the qualities we have in common with our parents, we can choose to see this as an opportunity to embrace them in all their tender messiness. And to love ourselves at the same time.

One day the two of us were walking out of a sandwich shop, and my mother stopped at the table of a young woman who was sitting alone. During lunch mom had noticed that this woman looked sad. So, she went over and put her hand on the woman’s shoulder and said something encouraging to her. I don’t know what my mother said because I was getting the heck out of there.

In the car, I was about to tell her what a terrible idea it was to physically touch a stranger these days, to presume to intrude on their personal space and pain. But I bit my tongue and said nothing. My mother meant well. And she did something not many people would do—she reached out to someone even though it would have been far easier to just walk by. It won’t be the end of the world if one day I find myself doing the same. Minus the touching, of course.

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Me and Mom at Christmas 2016.