A former hospice consultant shares her journey caring for her aging mother and the one thing no one ever told her about caregiving.
Posted in , Oct 5, 2017
As a former research scientist and hospice consultant, Melanie P. Merriman felt equipped to care for her aging parents. After all, she knew what to expect better than anyone, having served as a quality measurement contractor to the Centers for Medicare and Medicaid Services and helping put into place regulations for palliative care.
But that wealth of experience and knowledge could never have readied her for the realities of life once her mother’s health started to decline.
“I was prepared for my mother to die,” Merriman tells Guideposts.org. “I had the whole hospice thing down and my mother and my father had been great about preparing wills. We were prepared for the end, but it was this in between period we weren’t ready for.”
That “in-between” period is what Merriman focuses on in her new book, Holding the Net: Caring for My Mother on the Tightrope of Aging. The book chronicles Merriman and her sister Barbara’s journey tending to their mother’s needs in the final years of her life, a journey that Merriman says began when her father passed away unexpectedly at 80 years old.
“It was an immediate understanding that, ‘Oh, the family is different now and mom is going to need us in ways that she has not needed us before,’” Merriman recalls of that time.
Thankfully, Merriman’s mother didn’t suffer from any illnesses or conditions that often plague senior citizens. After the death of her husband, Merriman’s mother continued her daily life in much the same way she always had – attending book club meetings, playing bridge, and editing her retirement community’s newsletter.
There was no sudden shift in her health, no tangible indicator that she was having trouble, just small things that began to add up. She became unbalanced, falling often, finding it hard to walk for long periods, losing mental stamina, and finding it difficult to concentrate.
“It’s a period of time in life that we don't really think about very much,” Merriman says. “That period between when an older person is still able to function completely on their own and the period when you would say they're at the end of their life, with a few months or a year left. But in between, there's this period of both mental and physical decline.”
That period of uncertainty is what inspired the title of her book.
“Every day became this precarious situation where we just didn't know how well she was going to be able to manage on her own,” Merriman explains. “That's why I call it the tight rope of aging, because it's like walking the tight rope, where you just don't know how the next step is going to go. You're always on this edge, where a mistake could be disaster.”
Making it worse was the distance. Merriman lived in Miami, Florida, her mother lived across the state in Tampa, and her sister lived in North Carolina. If that disaster were to happen, the family would be too far away to help. Merriman convinced her mother to move closer to her sister, a decision that was hard for a woman as independent as she was.
“My mother had been adamant, forever, that she never wanted to live with either one of us. Her mantra was, ‘I don't want to be a burden,’” Merriman says. “In her mind, she didn't want to disrupt our lives. So we were always really careful to try and make decisions with her and not for her.”
They tackled the sensitive subject of moving by inviting a professional geriatric care manager to do an assessment of the home, hoping an outside, unbiased opinion might sway their mom’s decision. They did the same when it came time to give up driving, asking their mom’s doctor to talk to her about the dangers and difficulties behind the wheel for an older person.
“I couldn't just say, ‘Mom, you don't have any choice, you have to do this,’” Merriman explains. “I really had to ask questions and listen to what was getting in the way of her making a smart choice.”
It’s a trap she sees many other caregivers fall into: parenting their parents in their declining years.
“When your parent acts like that, it feels a little bit like they're acting like a willful child,” Merriman says of her mother’s resistance to moving. “And so you think that you should act like a parent, but the fact of the matter is, you're never a parent to your parent. The roles just don't allow that. If anything maybe you get a little more equal, but the hardest thing was really letting her make decisions that sometimes felt to us like bad choices.”
Merriman found that bringing in professional voices helped, but she also found that just listening to her mother’s concerns made things easier.
“If there's any way in which I did act sort of like a parent, it was more in trying to comfort and support her through the difficulties,” she explains, saying she would often drive across state to bring her mom comfort foods and spend time with her before the move. “It's important to not just to know intellectually that there's all this emotion behind what's going on, but to ask about it and commiserate. Let them feel bad. There were times I just had to sit there and let my mother cry. I was just so aware of all that she was losing, which is why any time we could, we tried to preserve her independence and the things that really mattered to her.”
Merriman hopes her book can help others going through the same situation she was in by offering them resources and her own personal knowledge of the healthcare system.
“I would like for people to learn from both my successes and my failures,” she says.
She also wants to shine a light on the toll caregiving can take on people, something she didn’t truly understand, despite all of her hospice experience, until she took on the role herself.
“What you don't see is just the underlying stress that's there all the time. Every time the phone rang, I thought it was going to be my sister telling me that something awful had happened,” Merriman says. “I would call my mother every single day and I didn't know what was going to be on the other end of that call. I had a knot in my stomach every time I made that call. I wasn't giving her a shower. I wasn't having to dress her or even do those errands that my sister was doing. But every single day there was just that stress of knowing that a person I love was not fully safe and not fully happy and not fully comfortable. You just know that all the time.”
She found ways to manage the stress mostly by carving out time for herself.
“I usually meditate in the morning and just have some prayer before I go to sleep at night,” Merriman says. “I just made sure that I stuck to those things. Keeping up that practice of the connection both to myself and to something larger than myself that sustains me was important.”
She hopes readers can find comfort in her story and learn to appreciate the positives of caregiving.
“What I'm hoping is, in the same way you immediately recognize that this is a stressful time and it's difficult, you recognize there are those moments that are really rewarding and really wonderful,” Merriman says. “What I would hope is that through reading the book, people will have more of those kinds of moments.”