Confession and disclaimer: If you’ve been keeping up on my blog the last month, you probably have noticed I have some heavy thoughts circulating in my mind. It’s hard not to be metacognitive when I have so much time and space while being my mom’s full-time caregiver. I intend to keep sharing, but I’m talking about subjects that might evoke strong reactions. If you find yourself sensitive to the topic of death and losing loved ones, I gently suggest you stop reading. Each person’s journey through anticipatory grief and post-death grief is unique, so what I say may not resonate with everyone. I use my blog to reflect honestly and get me through hard times, and sometimes my natural inclination for humor helps me cope. I just don’t want anyone to be offended or feel like I’m being insensitive. So here we go …
It should be intuitive to realize this, but it only really hit me when I was deep in the trenches. There’s no roadmap for this end-of-life caregiving thing, and I’m not really sure I’m doing it right.
Let me paint the picture. My mom has late-stage (end-stage?) emphysema/COPD. She is 78 and has smoked since she was 18. She would always say she put the nails in her own coffin by being a lifelong smoker, but I digress. We’ve known about the emphysema for a few years, but in December, she started to experience shortness of breath at rest and decreased functional/mental status. Although she can perform some activities of daily living (like going to the bathroom on her own), she does not have capacity to live independently anymore, needing support for things like remembering to take her meds, managing her bills and food prep. She gets out of breath from simple activities like talking on the phone and eating food.
When you don’t know what’s going to happen, it’s hard to know what to do. Therefore, my mom, sister and I made the best decision with the information we had. No nursing home, no home health care aid, instead we would handle it ourselves with the help of professional supports through palliative care. As a result of her shortened life expectancy, she can be on hospice at home. I’ve been staying with her since the new year, with my sister giving me breaks every weekend and on her school vacations.
I previously mentioned reading the extremely thought-provoking book by Atul Gawande called Being Mortal: Medicine and What Matters in the End. I used to associate hospice with the last few days—sometimes weeks—of life. However, I’ve learned that it can be a year. And people can come off of hospice. According to Medicare in NJ, my mom is on home hospice for 90 days to start, then will be re-evaluated. Either way, come April, my sister will take my mom to her house so I can return to AK.
As the book describes, hospice is supposed to help the patient cherish this final chapter in life. It’s all about dying with dignity, and letting someone live out their final days (weeks/months) the way they want to. For my mom, she wants to continue to drink her coffee (10+ cups/day) and watch TV for 12+ hours/day. She hasn’t left the house in a month—not even for church—and is choosing to wear the same pink jogging suit all day and night, only getting out it when I say it’s time for me to wash it.
Caring for an elderly person in our medicalized society is an overwhelming combination of small and large burdens. It is all-consuming fielding phone calls, navigating insurance & choices, making the biggest burden the mental load. As someone pointed out to me, there are actual terms for it: ongoing traumatic stress disorder and/or anticipatory grief. Unfortunately, the challenging emotional journey is often unspoken and overshadowed by post-loss grief.
The end-of-life stage and impending death unveils a complex mix of emotions. For me, it’s been anxiety about the uncertain future, ambivalence regarding caregiving, annoyance with my mom’s memory issues, frustration in my day-to-day duties, impatience with my life being on pause, and sadness about losing my mom months ago (the person who was independent and my confidant is now a burden). I thought her time would be short, but after 6 weeks here, I don’t know how people do this caregiving thing for months, let alone years. To be honest, my life is as boring as a glass of tap water with dinner, although I’m exhausted from my complicated emotions and feel very undefined in limbo.
I want to normalize those feelings because while I received warnings from others, I’m over here low-key wondering if I have some level of undiagnosed clinical depression (and if my mom is also depressed).
I think it’s also important to note that my mom has always been vocal about feeling like she’s lived enough, and she wants to die. Not in a suicidal kind of way, but just in the “I’m ready and disappointed it hasn’t happened yet.” She no longer has the energy levels to do all the things she was doing on a daily basis—which, let’s be honest, wasn’t much, yet she lost her autonomy and sense of self. Being dependent on others has absolutely lowered her quality of life.
One of the takeaways from Being Mortal was this: We don’t need to treat aging and death as a clinical problem we can medicalize. Not everything is meant to be fixed, yet medical science pushes the limits of our biology. For most of human existence, the average life expectancy was less than 30 years, and now it’s creeping toward 80. I definitely believe we are living well beyond our appointed time, and I personally don’t think it’s a win because our society is not equipped for the series of losses (i.e. hearing, eyesight, memory) that comes with old age.
To quote Atul Gawande, “In 1950, children under the age of 5 were 11 percent of the US population, adults aged 45-49 were 6 percent, and those over 80 were 1 percent. Today, we have as many 50-year-olds as 5-year-olds. In 30 years, there will be as many people over 80 as there are under 5.” Let that sink in.
Assisted dying is a controversial and nuanced subject that I’m not going to get into, but I will say this. We are more humane to our pets than humans. I’m not suggesting that the end is always controllable (except in New Jersey, Washington DC, Maine, Vermont, Oregon, Washington, Hawaii, Colorado & California), however, it’s difficult to understand and have faith in what’s keeping my mom alive. My mom’s faith is equally shaken. As a devout Catholic since utero, it’s hard to witness her get angry with God about her prolonged life despite her tremendous urgency to leave the mortal world. She jokingly looks up the ceiling nearly every morning and says, “What are you waiting for, Lord? I was sure I’d be gone by now.” She also has asked people to pray for her to die.
My mom taught me to believe in sayings like “if it’s meant to be, it will be.” Nonetheless, I am struggling to understand the path ordained by God and don’t want to believe it’s that simple. My mom says she is missing nothing and has no unfinished business, and though her existence is a bright light in this dark world through her circle of friends, relatives, and neighbors, it doesn’t seem fair to keep her around for that alone. She also hates inconveniencing people, so it pains her to have us taking over her life.
My mom never did anything fast in life, so I shouldn’t be surprised that it was taking her this long to die. Actually, she always joked that she’d be late for her own funeral … it’s sort of coming true.