In September 2014 I wrote an article outlining my desire to live long and burden my children. At the time a fair number of people took issue with it. How could I possibly be so selfish? they asked. Why would I wish to be a burden to my own children?
Such comments missed the point I was trying to make, which was that the opportunity to sacrificially care for another is one of the most soul and life-enriching experiences a human being can have. When we tend to another in his weakness we imagine we are the ones doing all the blessing, when in fact we are blessed as much or more, in ways that we may not even realize until much later. It is a lesson I have learned not only as a parent but as a caregiver to my mother over the last number of years.
Yet I have to admit that when I wrote the article in question it was to some extent an intellectual proposition. My mother lived with me at the time and had been doing so for a while, but she was still fairly able to take care of herself. There were frustrations and inconveniences, but overall the burden was pretty mild.
It is one thing to care for someone who is still able to walk and get dressed and do everyday tasks; it is quite another to care for one who is immobile. Nevertheless, I felt when I wrote the article that I had enough firsthand experience as a member of the sandwich generation to stand by it.
Then It Happened to Me
Fast forward a year-and-a-half, and I have learned in a whole new way what it means to be “burdened” by an aging parent. The impetus for my first article was one by Obamacare architect Ezekiel Emanuel (brother of Rahm), in which he states his desire to die, ideally, at age 75 to avoid what he sees as the uselessness of advanced old age.
Because Emanuel equates human worth with one’s ability to materially contribute to and actively participate in the world, he wants to die before he reaches that stage, and he intends to increase the likelihood of that happening by refusing anything but palliative medical care at age 75 and skipping diagnostic tests even earlier. In doing so he hopes to increase his chances of accelerating his death and the dying process.
As one who believes that human life is created by God and thus takes its worth from him rather than from someone else’s definition of what constitutes a life worth living, I reject Emanuel’s argument on principle. But over the last few months I have had an opportunity to experience, up close and personal, how very much a person can contribute even when, by the world’s standards, she seems to be contributing nothing. What I got to do these last few months was watch my mom die. It was terrible. But it was also an incredible gift.
The Day My Mom Was Done Fighting
I knew this day would come–I just didn’t expect it to come so soon. My mom did not have a terminal illness. She was old and tired. She ended up in the hospital with a urinary tract infection, but once the infection was treated she did not bounce back. It took a while for me to accept that she was done fighting, but once I did I arranged to bring her home under hospice care so that she could die in her own room with her own things and people around her.
The day I picked my mom up at the nursing home to take her home, she protested strongly (well, as strongly as she could). As the nurse pushed her in a wheelchair to my waiting car, she cried out several times, “No!” On the way home she told me, “I’m scared.”
Maybe she was afraid of having me as a caregiver, for which I wouldn’t blame her. But I know my mom, and I know she was most afraid of being a burden to her family. She did not want me to have to provide the care she needed, and she did not want me to watch her die. I understand her fear. I, too, worry about someday being a burden to my own children, my past words on the topic notwithstanding.
Those words — “I’m scared” — were some of the last my mom ever said. As her strength waned in her final days, she was unable to feed herself or take a drink of water. She was unable to get out of bed. It was an enormous effort to say anything at all. We spent her final days sitting by her side, telling her we loved her over and over and over again, and holding the phone up to her ear so she could hear the voices of family.
As she was able, she told us she loved us, too. We played soft music in her room. We sang to her, read Scripture to her, and prayed over her. We cried.
Yes, I Was Scared, But It Was Worth It
If that was a burden, I wish I could be burdened by her again. I have three children: two in college, one, age 12, still at home. He, along with his father, was with me through my mom’s entire hospitalization, rehab stay, and hospice. As hard as it was, it is an experience I would not trade for anything, for any of us.
I am not suggesting that the path that I took with my mom is one everyone should take. I am thankful to have been in a situation and to have had a network of support to help provide the care my mom needed. Not everyone can, or should, do that.
To be honest, when I drove my mom home with hospice order in hand, I was just as scared as she, if not more so. Would I be able to do this? Would I be up to the physical, not to mention emotional, aspect of what was to come? (Side note to anyone facing a similar path: if you’ve changed a baby’s diaper, you can change an adult’s. When someone is dying, embarrassment and disgust are quickly replaced by necessity and love.)
To the One Who Fears Being a Burden
Again, I am not trying to suggest everyone has the ability to care for an aging or dying parent in the home. In fact, I am speaking less to the caretaker here than to the one who is being cared for, or who is facing and fearing the prospect in the near or distant future. No matter how strong you are today, there will come a day that you will need help. Don’t fear that day. If you have someone in your life who wants to help you, in ways big or small, let him.
To be weak, frail, vulnerable, and helpless does not reduce either your inherent worth or your ability to contribute meaningfully to the lives of those around you. In your weakness you can contribute great things. You can provide the opportunity to your loved ones to discover strength, compassion, and faith that they didn’t know they had. You can ease their fears about their own final days. You can pull families together that haven’t been together in a long time. You can simply be there so the ones you love can love you back.
My mom worried greatly about being a burden on her children. During the years she lived with me, she more than once suggested I put her in a nursing home. But in “burdening” me as she did the last month of her life she blessed me in ways she could have never imagined. In allowing me to bring her home to die she gave me one of the greatest gifts anyone ever has. Rest in peace, Mama. I love you.