When you’re taking care of an aging parent, particularly one who suffers from multiple health challenges, it can be incredibly difficult. But this summer, I learned to savor every moment.
Emilie Brzezinski, my 89-year-old mom, lovingly known as “Bamba”, has had a tumultuous past few years. Her extraordinary husband – my dad – passed away four years ago. She survived two heart attacks. And she was diagnosed with both dementia and Parkinson’s. During the pandemic, we moved her from her Virginia farm house and art studio she spent half a century raising our family in, to my home in Florida so I could take care of her.
Bamba has mostly adjusted to life in Florida. But it's a life that's physically and emotionally detached from the life she knew. And as much as we all try, it can be disorienting for her at times.
So when my husband Joe suggested Bamba and I travel together to Northeast Harbor, Maine, where our family has spent 54 consecutive summers together, I leaped at the chance. Just the two of us – mom and daughter – for three weeks without him, our kids, their friends or our friends. “It’s too disorienting for her if there’s too many people,” Joe told me. “Let Bamba be in her house and in her element with just you.”
I’ll be honest, I was nervous to spend three weeks alone with my mom, which I’ve never done before. And it was a hard trip physically for her. We packed lightly. We triple masked. And we had plane trouble, which resulted in us sitting in Newark for five hours. But 12 hours later, we got there. And in true Bamba fashion, we celebrated with a shot of vodka.
It was really wonderful to be there alone with her, because we could do things at her pace. So, if she was up at 7 a.m. and feeling good, that’s when we would go biking. Other days we would leisurely read the newspaper, have lunch, and then go on the boat. It felt like climbing a mountain to get her down on the dock and on the boat for a 20 minute ride — sometimes it took an hour. But we did it!
And if she didn’t feel well, we would lay in front of the fireplace all day because sometimes it was all she could handle. One day, we walked out to the garden, and she started to have a hard time breathing and had to sit down on an old bathtub that I turned into a flower holder. We rested for a bit and tried to walk back to the house, but she couldn’t go on. So, I grabbed a chair and sunhat from the porch, and that’s where we just sat and relaxed for two hours. We decided to just be.
To have those three weeks where time didn’t matter was really important. Just to have nobody around, nobody else that I was taking care of, allowed me to just let life breathe. It was one of the best summers of my life. We developed our own language and reconnected in a real and important way.
I did host “Morning Joe,” but I didn’t take a primary role. And anything work-related, I did very lightly.
I learned a lot about caring for an aging parent during those three weeks. Most important, that it’s not exactly what you do but the journey of doing it. For example, we laughed so much just trying to get up the stairs. Then we laughed so much because we couldn’t get up the stairs. We spent a lot of quality time on those steps. Of course, nearby Acadia Mountain is a place where my mother took us kids up many times when we were growing up, and now the staircase was our big hike.
I learned to be flexible, and to give us space for endless change. I didn't try to do too much. I just did what was there. If you decide to make cookies, but you end up spending most of your time trying to find your favorite bowl and you get side tracked because a pet needs attention and you decide to take a nap instead, that’s fine! It happened to us. It’s not about putting points on the board. But so many points inadvertently end up getting on the board when you look at things that way, when you enjoy the journey and let the journey take its own path and it is beautiful.
And what I’ve learned about caring for a parent with dementia is you get so much more out of the experience if you worry less about accomplishments. I didn’t care about using wrong words, I got the overall point. Even if I didn’t get the point, that was fine – I just went with it. Just being there together, really being there, is what matters.
When I was packing us up to leave for our big trip to Maine, I became despondent. I was convinced that it would be the last year she would physically be able to make the trip to the summer home that’s so special to her heart.
And once again, I’ve learned to never underestimate Bamba.
The trip was so good for her. It changed something about her overall condition. She was happier, healthier and clearer when we got back. There was something about the trip to Maine that opened up her brain to the woman she was and is. The trip connected us deeply. We learned to communicate in shorthand. We have a language of our own that she is comfortable with. We laugh all the time— I mean ALL the time – a lot of “ inside jokes” that I’m not even sure I understand! She is so much better and happier. In fact, since we’ve been back, my mom (who is a sculptor) has been in her studio working every day. She’s even getting ready to cut a deal to showcase her pieces at the New York Institute of Technology building, right next door to Lincoln Center. We’re planning her big opening and her second act.
I know there are so many of you out there who are taking care of an aging parent. I recently spoke to Dr. Madelyn Fernstrom, NBC News’ health editor to get her top tips. She stressed that while it might feel natural to “take charge” when caring for an aging parent, it’s important to make it a partnership. In addition, Dr. Fernstrom advised the following:
Be a good listener.
“When talking with your parent, it’s important to listen more, and talk less,” Dr. Fernstrom told me. “When they share their feelings and experiences with you, you’ll be better able to gauge their needs.”
Let them ‘take the lead.’
“Your parent should determine how and when you may help them. At times they might feel more independent and need less help,” said Dr. Fernstrom. “Avoid setting up a rigid schedule, and be more flexible to changes in daily activity. It’s essential for them to feel as independent as possible, and also keep up their own skills.”
“It’s important to remember that you’re caring for your parent—who is still your parent---no matter what their age and capabilities,” noted Dr. Ferstrom. “Treat them with dignity and respect. Avoid slipping into ‘role reversal’ because you’re not parenting a child, you’re helping your parent to manage. Aging can also be hard of them for many reasons.”
Keep their home safe.
“Take a look around their home to keep it safe. Remove any slippery rugs and keep walking areas clear of debris,” she advised. “Check out the bathroom and think about grab bars in the shower, or a modified toilet. Consider a medical alert device like a pendant or wrist band for emergencies. And make sure they have an assisted device for mobility if they need it, like a walker or cane, adjusted to the right height for optimal safety.”
Take care of yourself.
“You own well-being is an essential part of being an effective caregiver,” said Dr. Fernstrom. “When you’re rested and feeling good, it’s a lot easier to be patient, listen, and act with respect and compassion. And don’t hesitate to reach out to family and friends when you need it, or consider outside help.”
I’ve learned that taking care of an aging parent isn’t always easy, but it’s worth it. For many of our parents, the best can still be yet to come.