My oldest brother came into town from the Houston area to be present for my dad's quadruple bypass and has returned multiple times to file taxes, take care of bills, call attorneys, assist with errands, and give us little breaks. My dad's sister came into town for three weeks and camped out at his house, fed the dogs, and visited both of my parents while they were in the hospital and rehab. My nephew house and dog sat once my aunt left until my brother arrived from Denver. My Denver brother took two weeks of vacation and stayed with my dad once he was home and drove him to see my mom in rehab every day, fed him, took care of general house maintenance, and took him to MD appointments. My youngest brother and I bore the brunt of this crisis simply because we live in the same city. We all used a lot of precious vacation time and days off to care for them. We all sacrificed.
Guess what? We are all very tired now, especially those who live in town. For the first few months, my standard response when people would ask how I was doing was always, "I am tired". Yet, that did not really convey the full extent of how I was. Tired implies physical exhaustion easily remedied by sleep. While I was, and still am physically tired, I was and still am emotionally tired as well, something not cured by sleep alone. Once both of my parents were home the shit hit the fan, almost literally, but I will refrain from giving details of that experience. Having both of them out of rehab was and is intense and more exhausting. There are no nurses to do all of the dirty work; everything falls on us. I have begun using a different word to describe my current state: weary.
Dictionary.com defines weary as: physically or mentally exhausted by hard work, exertion, strain, etc.; fatigued; tired; weary eyes, a weary brain. characterized by or causing fatigue: a weary journey.
Ah yes. Weary journey, THAT captures the emotional AND physical exhaustion of caregiving and how quickly it can deplete your soul. It leads to a weary brain and weary eyes.When I was still opening this unwanted new year's gift, I was in crisis mode. Just putting one foot in front of the other, trying to stand up straight despite the heavy weight that was suddenly placed on my shoulders. It felt like I had just inherited twin newborns, both with special needs. My own fragile health sickened the plot. The physical and emotional exhaustion combined with my heart defect and POTS diagnosis was quickly taking a toll. I am pretty sure I quit speaking in complete sentences and grunted a lot of my responses. I wore dirty clothes and didn't wash my hair enough. I forgot to brush my teeth and went to bed in my work clothes. I even showed up at work without makeup, which should NEVER happen! I looked a mess and struggled to keep it all together without bursting into tears for no reason whatsoever.
I spent sleepless nights at my parents' house; took over their laundry; administered medications; learned to manage the catheter bag; wiped bums; helped with showers; clipped toenails and fingernails; scheduled appointments; ran errands; purchased clothing and medical supplies; grocery shopped; batch cooked a lot of food so they had a supply of nutritious meals; tried to keep things clean; paid the bills; argued with providers over incorrect charges; filed a complaint against the rehab center; cooked dog food (yes, they cook their own and it is a pain in the booty); and attended every MD appointment with them; all while working full time and trying to maintain my own home. And I did it all WITHOUT CAFFEINE. My heart defect makes it a big no-no. The impact of this cannot be overemphasized. I.MISS.CAFFEINE. 😢
Worst of all, my mother's normal temper became more extreme after her stroke. I was usually unprepared for her physical and emotional outbursts; they made me want to runaway, but alas I could not. So, I learned to duck again. It's hard to unhear the ugly names I have been called, or the countless times I have been told to go to hell, or worse, but I try. It's a good thing the joy of the Lord was my strength (and continues to be) because I was quickly losing my mind and felt like I was going to have my own heart attack at any minute.
I can assure you that after dealing with everything for a few months, once the end of March rolled around and both parents were home, and my older brothers had left town, it did not take long for me to hire my nephew and teach him how to take over their laundry, learn to make a few meals, pick up groceries, administer medications and take over various other tasks on a daily basis. I simply could no longer do everything and maintain my sanity or health, and neither could my youngest brother. Not to mention, my nephew is much better at dealing with my mom's emotional state and does not push her buttons as much as I do. And he gets paid for it.
Five months later things have stabilized, but I still struggle. I have a much shorter fuse. Little things bother me instead of rolling off my back. I am physically exhausted and get sleepy by 9:00 pm every night, but the very sleep I need eludes me when I crawl into bed. I have not cleaned my house for months. Often my mornings start with care coordination before work and end with phone calls and research before bed. On weekends I spend all day or several hours at my parents' house either cooking, shopping, running errands, or refereeing my parents, because honestly, they act like children more often than not. And then I get up the next day and do it all over again. It's the worst version of Groundhog Day. I rarely get a day OFF and when I do I spend a lot of it sleeping or binging on Netflix, blissfully ignoring all of the things I need to do for myself and my own home. It is a lot like parenting I guess, but there are two households and two locations, which makes it tricky.
Caregiving is an important job, it is where the rubber meets the road and I get to live out my faith and learn to love better even when it is a sacrifice and I don't get a return on my investment. Aging is part of living and I want to help my parents age well. Yes, caregiving is hard, but it is also a privilege....most of the time. 😅 But that does not mean I do not grow weary.
Galatians 6:9 exhorts us to not grow weary of doing good. Honoring my parents, choosing to love them and serve them is GOOD work, but boy howdy is it HARD. Most of the time I really do want to be there for them, because I love them and it is the right thing to do. But there are days.......
In all honesty I could use some down time right about now, to help with the weariness of doing good, but it will be another three months before I get a more than a weekend off from work, and my weekends are usually full of the work of caregiving. All of my sick leave and most of my vacation time was spent already this year. At this point I feel a bit like "The Little Engine that Could". The constant refrain in my mind is "I think I can, I think I can" and I keep hoping it will turn into "I know I can, I know I can" before it is all said and done, just like the little engine in the cherished book of my childhood.
Admittedly, I am not an expert in caregiving. Thankfully I do not have to do it alone. I cannot even fathom doing more at this point but many, many people do SO much more than I do with so much less. Knowing that makes me feel guilty. I have to force myself to admit that there IS a lot on my plate and I should not minimize the impact it has on my life. I am still trying to figure out how to make everything work; learning as I go is my motto.
Although I know very little, I have learned a few things:
- Caregiving is HARD. It has all of the responsibility of a job without the pay or benefits.
- Caregiving for aging loved ones is a lot like parenting in reverse, except no one knows it is coming. It is not a happy surprise, there are no parties to celebrate. It is sad and sobering. Caregivers are not training and launching someone into the world, they are helping someone they love very much live their best life until they leave the world.
- Caregivers need someone to commiserate with who has or is walking through the same thing.
- Caregiving is a mix of heartbreak, fear, joy, hope, tears, work, sentimentality and privilege all tangled and knotted together like the most delicate of necklaces. Good luck untangling everything!
- Caregivers need breaks. Stress damages the body and caregiving, especially while working or caring for one's own family is a lot of added stress. It saps your energy and can easily lead to illness. And yet, caregivers will feel guilty for needing and taking breaks.
- Caregivers will be pulled in too many directions and will face challenges at work or in their families as a consequence. They may be sad and overwhelmed a lot.
- Caregivers often put their own lives on hold, which is problematic and leads to resentment and more guilt. They should go to dinner with friends, go to movies, take time to do what they love, take time to do their own laundry and chores, go to parties, RELAX, and stay in close contact with their friends and support system.
- Caregiving for aging loved ones is a long, often slow process of saying goodbye. Caregivers know that their loved ones are not long for this world. They carry the burden of knowing that each decision they make affects the lives of those in their care and will often sacrifice their own needs because time is running out. It is a delicate balance between helping those they love live independently for as long possible, while knowing that they will need to step in and assist in ways they never imagined all while still maintaining their own lives and health.
- Caregivers find it difficult to make plans because an emergency could strike at any moment. Going out of town can lead to angst and fear of what might happen.
- Caregivers have to remember that it is hard for the person receiving care too. Maybe they have lost their independence. Maybe they cannot communicate. Maybe they cannot move without assistance. Caregivers have to love and serve in a way that allows the person receiving the care maintain his or her dignity.
- Caregivers will make a lot of mistakes. The learning curve is steep and lightning fast. There will be things that they miss or simply do not know, and they will feel guilty for their lack of knowledge.
- Caregiving is a sacrifice, but more importantly it is a privilege.
So far, weariness has defined the first half of 2018. I do not want it to define the second half. I am learning to rest in the arms of Jesus and focus on the joy of the Lord instead of the sorrow of my circumstances. Whatever brings you sorrow, and whatever makes you weary, I hope you can find you strength and rest in Jesus too.