I’m a to-do list kind of person.
I get up every Saturday, make breakfast, then sit down and start my weekend’s to-do list. Laundry, grocery shopping, cleaning the house, yardwork, going to my kids’ sporting events, helping my kids with their homework—there are some days the list seems never-ending.
Usually not all items get a checkmark by the end of the weekend, and you can definitely hear the groan from my husband when he sees it. But I like the process, as it somehow calms me and prepares me to take on whatever comes my way.
So when my mother’s memory started to slip five years ago, the first thing I did was make a to-do list.
At first my list wasn’t very long. My parents lived 2,000 miles away in Oregon, so my involvement was limited to reminders and checking in.
But over time my family started to struggle. My younger brother was the only one who lived close to our parents, and he couldn’t keep up with the changes. My parents didn’t want me or my siblings to worry so they made light of the situation. They came up with excuses (it’s just part of getting old) or covered things up (she’s only fallen once, it’s not a big deal). And doctors were reluctant to give a diagnosis, attributing her memory loss to a concussion she sustained over a year before.
As my mom’s health began declining my lists were getting longer and more detailed, and it was becoming harder to help from afar.
When I was young and my grandparents started to need care, it tore our extended family apart. Though my aunts and uncles were spread across the country, they all wanted to participate in every care decision with my parents. There were arguments over money and living situations, there was blame, a reluctance to understand the severity of the condition, and there was anger.
It was then, when they were still healthy, that my parents made a promise to me, my sister and brother...when the time came, our family was going to do it differently.
Eventually, as my mother’s condition slowly deteriorated, that time came. Together we decided it was time to move my parents closer to me and my family in Minnesota. And who better to coordinate the effort?
So I did what I do best, I started a list—moving companies and boxes (so many boxes), car transportation, shipping, packing schedules, airline flights, donation services, selling the home, and transferring my parents’ medical and financial information.
Six months later, after several trips to help pack and organize, they arrived at their new independent living apartment in Minnesota just in time for my kids’ 2016 school Christmas program.
I remember being relieved; we had made it! Now we would have time. Time for kids’ sports games, school musicals, family holidays, planning their 50th wedding anniversary (more lists), and (finally) free babysitting!
But, in February 2017, my mom’s new neurologist delivered a diagnosis…the one we had known in our hearts all along: Mom has Alzheimer’s Disease. In fact, she was entering the advanced stage.
We didn’t have time.
In the spring, shortly after her diagnosis, mom started having frequent falls and could no longer walk long distances. By summer, she stopped walking altogether. By fall, we moved my parents into an assisted living apartment. My mother could barely eat and had lost much of her speech, speaking no more than one word at a time. By winter, we made their final move—my mother to a memory care center and my father into my home.
Through all of this, and too many tears to count, I knew what had to be done. I took a deep breath and started my to-do list:
Before my mom got sick I knew my role: I was a successful, married, full-time working mom of two young children who, with the help of to-do lists, balanced it all! But it quickly became apparent that no amount of lists could save me from becoming utterly overwhelmed by my new role…caregiver.
I’m not alone.
They call us the sandwich generation for good reason. We are sandwiched between caring for our parents and our own young families. We are squeezed for time as we balance the needs of our marriages, children, parents, siblings and careers.
We do it because we love our families. But it’s not easy.
In February, my employer, Securian Financial, conducted a survey1 of more than 800 people in a similar care situation. What we learned is not surprising.
The majority of caregivers (60 percent) spend more than 10 hours per week caring for a family member, and about one in four (29 percent) spend more than 20 hours. Women (32 percent) are more likely than men (26 percent) to spend more than 20 hours each week on caregiver duties.
This is certainly true for me. At the most intensive part of my mother’s decline I spent more than 20 hours per week providing care—in addition to working full-time. And while I no longer provide direct care to my mother, I now help my father with daily tasks such as finances, managing my mom’s care plans, working with hospice, and explaining technology—tablets and laptops and smartphones…oh my!
While more than 55 percent of us describe our role as “supportive,” one-third of us feel “concerned” (33 percent) or “overwhelmed” (32 percent) by our caregiving responsibilities. We say the most difficult aspects are maintaining emotional stability (60 percent) and a healthy balance between caregiving and being with immediate family members (56 percent).
Other challenging areas are keeping up with day-to-day tasks (54 percent) and maintaining our own financial well-being (52 percent), with one in six people (17 percent) finding the latter very difficult.
For me, one of the most difficult aspects has been watching my parents’ future slowly fade away. While my mother loses her memory, my father loses the dreams they had—the vacations they wanted to take and the plans they had for our family and each other. In addition, they have lost their home and are now living apart…my father forced to move into our home due to the financial burden of my mother’s care.
Our survey found that 48 percent of caregivers say the person they are caring for does not have long term care insurance. Cost is the number one reason why people do not purchase it. Half of caregivers (50 percent) whose care recipients do not have it believe it is too expensive, while another 10 percent do not think it is a worthwhile investment.
While individual long term care insurance wasn’t an option for my family, because my parents did not medically qualify, there are other options. These include life insurance and annuity policies with long term care funding riders, and hybrid policies combining life insurance with long term care benefits. Self-funding (i.e., paying out-of-pocket) is the most common way Americans pay for long term care, and Medicaid is an option for care recipients with depleted assets—a bridge my family may cross in the near future.
Ultimately, there are many different ways you can plan to pay for care—the key is to make a plan. Not someday, but today. It’s one of the greatest gifts we can give ourselves, our children and our families.
My family said we would do this together, and we are. Every day I feel blessed to have a spouse and children who show so much love and have sacrificed so much to ensure my parents are cared for. And I’m lucky to have siblings who are kind, supportive, and listen when I need them.
Some things haven’t changed: I still get up every Saturday morning, make breakfast and then start my to-do list.
But now I have a different list.
It’s our list of goodbyes. It’s full of all the people we know mom would want to have one last visit with so, in her own way, she can say goodbye. The list is long. But every completed checkmark reminds us of what an amazing woman she is, that the generations to come are worth fighting for, and how much love there is protecting us.
Securian Financial is the marketing name for Securian Financial Group, Inc. and its affiliates. Insurance products are issued by Minnesota Life Insurance Company in all states except New York. In New York, products are issued by Securian Life Insurance Company, a New York authorized insurer. Minnesota Life is not an authorized New York insurer and does not do insurance business in New York. Both companies are headquartered in St. Paul, MN. Product availability and features may vary by state. Each insurer is solely responsible for the financial obligations under the policies or contracts it issues.
CLTC, LTCP, FIC, manages life and annuity product research and consulting for Securian Financial and recently leveraged her personal caregiving experience to help design the company’s new permanent life insurance policy with long term care benefits. She grew up in Eugene, OR, and obtained a bachelor’s degree from Pacific Lutheran University in Tacoma, WA. She moved to the Minneapolis-St. Paul area after college and began her financial services career in 1996, joining Securian Financial in 2006. Anderson can be reached via email at [email protected]