Divorced in her 40s, widowed in her 60s, working full-time until her 80th birthday, Susan’s mother was used to taking care of herself. So when she started to experience episodes of disorientation and confusing behavior, it took Susan (whose last name has been withheld to protect her mother’s privacy) and her siblings some time to realize that their mother was in the early stages of dementia -- and that it wasn’t something she could handle alone.
“It’s alarming to realize your mother can’t take care of herself anymore,” Susan said. “I think it took a long time for it to sink in because we know her as someone who’s pretty tough and resilient.”
Whether it happens suddenly due to illness or injury, or gradually over time, taking responsibility for an aging parent is a change that comes with a mix of challenges and emotions. For Susan and her adult brother and sisters, the role reversal came just as their own adult children were starting to marry and have children.
“Suddenly you’re trying to coordinate doctor’s appointments and meetings with attorneys, and someone has to keep track of whether Mom took her medication or washed her hair or remembered to eat a meal or was scammed by a telemarketer,” Susan said. “It’s overwhelming.”
Plan Ahead
Although it can be a tough subject to discuss, the AARP and other groups strongly recommend that seniors begin to plan early for a time when they will need more care or support. It’s a discussion Susan wishes she and her mother had started years earlier.
“Mom really wanted to stay in her house, but she couldn’t take care of herself,” Susan said. “We were spread out in different cities, working full-time, and it became clear very quickly that she needed more care than we could provide.”
Over the course of several years, Susan and her siblings researched options for their mother and worked on trying to get her affairs in order. They thought she had signed a power of attorney, but no one could find a copy, which delayed the process of figuring out what kind of care they could afford and which programs their mom might qualify for. They tried to find a way for her to stay in her house with a home caregiver, a plan that ultimately proved to be unrealistic.
As the details of their mother’s future were worked out in meetings and long email chains, there remained the day-to-day work of ensuring she was fed, bathed, and ferried to doctor’s appointments in town and out of state.
“It was stressful for the children and grandchildren who lived near Mom because they had to kind of coordinate her care on a daily basis,” Susan said. “And it was stressful for the rest who lived far away because there was only so much they could do. You just feel helpless.”
Getting her mother into a nursing home was a huge relief, she said.
“At this point, Mom doesn’t always know where she is or what’s going on,” Susan said. “But we know that she’s safe and she’ll be taken care of.”
Now in her late 60s, Susan said the experience has impacted how she talks about aging with her own children.
“I wouldn’t want to leave them trying to answer all the questions we had to answer,” she said.
How to Get Started
In a perfect world, parents and adult children will start making plans years before they may need to be put into action. But if you find yourself thrown suddenly into the role of caretaker for your parent, there are a few steps Susan recommends based on her experience:
- Immediately get a handle on your parent’s finances and spending. After an unscrupulous company sold Susan’s mother a home security system over the phone, she and her siblings stepped in. One started collecting their mother’s mail and paying her bills; another was added to her mother’s bank account so she could monitor unusual spending. “Mom was a prime target for scammers,” Susan said.
- If multiple family members are involved in caregiving, consider delegating responsibilities and establishing clear channels of communication. In Susan’s family, everyone pitched in on everything, and they did most of their coordinating over group emails, which added to the chaos. “Sometimes everyone got included, sometimes people got left out, and often there was just too much going on to follow,” she said. “In retrospect, in a family of our size, we should have set up a committee or scheduled regular meetings, with someone assigned to manage notes and to-do lists.”
- Talk to an attorney early in the process. Especially if you’re new to navigating the paperwork and legal issues related to senior care, you’ll want to be prepared for questions and processes that you’ll encounter.
- Begin researching the senior housing available in your area before you think you need to. Senior living options may include everything from independent apartments with community activities and entertainment to residential care for those who need full-time assistance. “I wish we would have known more about what was available beforehand,” Susan said. “The options near Mom were limited, and with all the other decisions we were facing, it was stressful trying to figure that out on top of everything else.”
- Consider taking the American Medical Association’s Caregiver Self-Assessment to ensure you’re thinking of your own health as well as your parent’s. “My husband and I were experiencing our own health issues while everything was going on with my mom,” Susan said. “It’s not like when you’re a parent and you’re young. You have to pay more attention to your own well-being.”
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