Anne Bogardus, Founder (and former caregiver)
It would be nice if caregiving issues were talked about and planned for far in advance of the need for actual caregiving to take place. Unfortunately, that is rarely the case. In many instances, there is a gradual realization on the part of an adult child, or children, that things are not quite as they should be with mom and/or dad. Mom and dad are often in denial—in some cases, one of them knows there is a problem with the other, but they cover for each other to maintain their independence. To a certain extent, who could blame them? They’ve lived longer than you, took care of you for years, and still see themselves as more experienced and better prepared to determine the course of their lives. I know how I feel when someone tries to tell me how to live my life
My siblings and I were lucky in one respect—after my dad retired and about 20 years before caregiving for them was even on the horizon, our parents took care of essential paperwork and set up a family meeting. We all gathered at my sister’s home for a family reunion where mom and dad went over their end-of-life wishes, living wills/advanced directives, and talked to us about what they wanted as they grew older. It was a great blessing to us for them to initiate that conversation. Later on, as the need for ongoing support became apparent, they were less willing to admit that they needed help—and when we initiated those conversations, they were not always well-received. It took a series of crises for them to accept help. It was actually a bit funny—dad was okay with getting someone in to “help your mother” and mom was okay with someone “helping dad” but they each vehemently denied that they themselves needed any help. But hey—we were willing to take what we could get.
Eventually, after a series of falls and hospital stays with the resulting long-distance drives or cross-country flights to make sure they were okay, even mom was ready to ask for help. In retrospect, there are four things we worked through—stumbled through is a better way to put it actually—as our family took the caregiving journey.
Step #1—Talk to your parents.
One thing to keep in mind is that just because you see things that are not quite right with your parents’ living situation, they will not necessarily agree with your assessment that there is any kind of a problem. They may believe that just admitting that they need help will mean a loss of independence, and most people do not want to give up their independence—just think about how you would react if the situation was reversed. Your parents still have feelings and ideas about how they want to live their lives and are entitled to make decisions for themselves—even if those decisions are not in their own best interest. Just because you think they are making bad decisions—and they may be—or you can see their judgment is impaired—and it may be—doesn’t necessarily mean they will agree with you or that you can take over and make decisions for them. When it is clear to everyone around them that there is a problem that they are not acknowledging, this puts an adult child in a difficult situation. Many times parents are only willing to accept help after a crisis has taken place—one of them has fallen, or there is an accident, or something else occurs that makes it clear to them that they actually do need help.
Step #2—Assess your schedule and other commitments—and prioritize.
When your heart is telling you to help, sometimes it is easy to forget about all the other responsibilities you already have and realistically look at how your life will change. In my case, I just assumed I could continue my consulting practice from a new location, help my mom and dad, and my life would continue pretty much the same. Umm . . . WRONG! How naïve I was! My life changed in every possible way, and I was totally unprepared for it.
If you have a job outside the home, kids living at home, a spouse, church activities, community activities, school activities, vacations, social life—where will caregiving tasks fit into these existing commitments? Be realistic—you will still need to sleep and spend time with your spouse and children. The hard truth is that some of those activities will by necessity have to take a back seat to caregiving duties. If you are the president of the PTA or the garden club, if you run the annual church bake sale, or do volunteer work, you may not be able to continue all these activities as caregiving tasks become more time-consuming and challenging.
Step #3—Locate and organize important documents and financial information.
Even though my parents took the initiative in preparing necessary documents, and my dad was a pretty organized guy, the important documents I needed to handle their affairs were in disarray by the time I had to take them over. I spent the better part of my two-week vacation in 2007 sorting through receipts, bank statements, credit cards, equity loan statements, and all the other papers Dad had accumulated. And that was only the current stuff—mortgage papers, deeds, insurance policies, his military discharge papers—all that was buried in file drawers and needed to be sorted out. I wasn’t even aware that some of these documents would be necessary, but as it turned out, for example, I needed his discharge papers so I could find out about and apply for veterans’ benefits on his behalf—and when my mom died they were needed so she and my dad could be buried in a veterans cemetery.
Step #4—Talk to your siblings.
Depending on how close your family has been, this may or may not be a major step. If you are close, it’s likely this conversation has come up in the past; if you’re not close, it may come as a surprise to some siblings that mom and dad need help. An important step in the caregiving process is to understand how your siblings feel about the need for caregiving. In many families, one or more siblings stay in denial for months or years, taking mom and dad’s side against another sibling who sees the reality of their parents’ declining abilities. This difference in perception can, and does, tear families apart. If you are going to take on the caregiver role, find out what page your siblings are on and then prepare yourself to handle their criticisms and judgments if they don’t think there is a problem.
These four steps can help you plan how you will handle the caregiver role when your parents are ready to accept help, or forced to accept it by circumstances. It’s a difficult, wonderful, stressful, rewarding role—one that will change you in ways you can’t begin to imagine, both good and not-so-good.
There will be more things to consider as the journey begins and continues, but these will get you started thinking about how caregiving will look in your family. I wish they had been laid out more clearly for me when I started my caregiving journey, and I hope they are helpful as you begin yours.