General Interest / Senior Living

The Unexpected Caregiver

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Patrick O'Brien

Patrick O’Brien

We’d always thought that my dad would be the first to go. Like many dads of the era, his diet was far from healthy, fitness wasn’t a priority, and alcohol and cigarettes played too big a role in his life. I loved the man dearly but he was a high-speed freight train headed toward a brick wall. By the time he was in his early 60’s, he had heart disease and diabetes, and was losing his sight, along with his lower limbs in progressive surgeries.

Mom, on the other hand, was thin, did her water aerobics religiously, and tracked how many fruit and vegetable portions she ate each day. She had only one vice — she smoked — but that vice was one too many. When she was diagnosed with squamous cell carcinoma, a fancy name for lung cancer, she was suddenly and unexpectedly very sick and facing death sooner rather than later.

Mom lasted a grueling six months. Dad lasted only six more beyond that. While I lived 250 miles away, I tried to be with them as much as possible. I put my job on hold as best I could and worked with my siblings to make sure we collectively were there for our parents. I was also asked to take on the role of executor, so I used any extra time to try to sort out what that exactly meant.

Many of us will deal with the aging and death of our parents at some point. Here’s what I learned in my journey through this challenging and emotional process.

You can’t always “fix” it. I have always believed that I can do almost anything if I really set my mind to it. Not so, in this case. You can stay up until 4 a.m. looking for new drugs in clinical studies to fix what ails your parents. You can look for second opinions, holistic cures and miracle diets. However, when illness and disease strike you cannot always right the ship, despite your best efforts.

Nobody may be conducting the orchestra. This may not be every person’s experience, but it seemed like well-intended doctors floated in and out of the picture. Each had their specialty, but none seemed to really be the doctor in charge, making sure that needs were comprehensively met and that the care (and prescriptions) were always coordinated. In both my mom and dad’s scenarios, the outcome was pretty much a certainty once they were diagnosed. But I would have wished for one doctor who had more time to give to coordinate the treatment in both cases. I found by attempting to understand each doctor’s role and asking questions that I could get a bit more of the doctor’s time and attention, and felt like this made the care a bit more holistic.

Old people can be stubborn. As we get older, we tend to get more set in our ways. While it may seem perfectly logical to you — as the adult child of your parent — to drive 60 miles to see the best specialist in the region, it’s very possible your parent will want to see “her” doctor. They might not want to be in a nursing home or hospital near you, but rather remain in their home or in a facility closer to it. You’ll likely find that convincing them to do things that involve change will not go terribly well. Pick your battles on this one. Only push on things that you believe will have a major impact on their health and well-being.

Parent illness stresses sibling relationships. Sick parents are a lot of work. That’s probably an understatement. And the stress that comes with that can impact your relationships with your siblings. Everyone lives in different places, has different career flexibility and different family situations. When my grandparents died, the fighting about caregiving and possessions was so intense that it permanently splintered both families. If you want your family to survive this gut-wrenching process, you need to make family harmony a priority and communicate clearly and frequently throughout the process.

You may be more productive than you thought you’d be. I found, particularly in Mom’s case, that she slept a lot in her final months. I was also fortunate enough that I could do a good bit of my work from my computer and telephone. Because of that, and the amount of sleep that Mom needed, I could get a reasonable amount of work done from my parents’ home and from the hospital. Most hospitals have Wi-Fi, so as you sit bedside for hours a day while your parent is sleeping, you may be able to get some work done. This allowed me to still have an income and be there for my parents when they needed me most.

You’re never ready for your parents to pass. In my dad’s case, he was a blind man with two amputated legs when he died. The quality of life this gregarious, people-centric man was able to enjoy in his final days was severely diminished. We watched him deteriorate before our eyes over a number of years. You could argue that it was time for him to go. However, he was still our dad, and in spite of the logic that it “was time,” you’re never ready for a parent to go and it’s incredibly difficult when it happens.

The estate is not in order. In the large majority of cases, there is still a tremendous amount of work to do. I dealt with a basement full of box after box of stuff, stock certificates for companies that no longer existed and small investment accounts we weren’t aware of. There also was my mom’s system of putting Post-it notes on items that she wanted to go to particular children — which is great other than the fact that it’s not legally binding and that Post-it notes fall off. Don’t underestimate the amount of work that will be necessary to settle an estate.

Like me, you’ll likely become an unexpected caregiver at some point. And perhaps you’ll also be asked to take care of all the details that need to be handled after your loved one dies — from planning the funeral to serving as executor of their estate. It will be exhausting both physically and mentally, but it will truly be a labor of love.

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Editor’s Notes: Patrick O’Brien is the co-founder and CEO of Executor.org, a suite of powerful online tools that help executors manage the 100+ responsibilities in the executor role. The tools include an interactive checklist for executors, a data vault to store important information, and invaluable tips on everything from the probate court process to managing estate assets.

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