I used to think I understood caregiving and knew what it would take to be a caregiver. I had ideas based on, admittedly, my desires for a caregiver. As someone with EDS, Osteoarthritis, Bipolar as well as the other awesomeness I have learned to thrive with, I wanted someone caring and ever patient. Someone who anticipated all of my needs before I knew what they were. I wanted a hero and, perhaps, a mind reader.
Reality can pummel fantasy quickly.
Becoming A Caregiver
You don’t know you are going to become a caregiver until it happens. Sometimes right when it happens. Someone you care about becomes ill, and you take the leap. You say, “I am going to give this much of my time to help you.”
How much is this? That is an equation that you cannot predetermine. You think you know, but in truth, you find out the width of the chasm after you take the leap. You also discover who you are in the process.
It happened for me rather simply. My mother-in-law became ill, and I was the one that was near enough, could cook, and had the time. Thus began the process. So started our equation.
Mother’s Day Weekend was bad. My husband, his sister and I were at the parents house to see Mom. The gathering, planned for awhile, turned out to be an illuminating weekend that changed our lives.
Mom was in bad shape for most of the weekend; the timing could not have been better. That may sound peculiar, but my husband, his sister Sandy, and I needed to see what was going on.
First, something was acutely wrong. Mom was ill. We already knew that something was amiss with her memory. We recognized it about six months ago, maybe more, and had since been trying to get her a cognitive assessment and medication, but that was something out of our control. She and Dad had to seek that treatment proactively.
I shared with my husband and Sandy my own mother’s experience from a few years prior. As the daughter of someone (my Gram) who had Lewy-Body Dementia, and a social worker herself, my mom had considerable experience on the topic. Getting Mom (in-law) on an Alzheimer’s medication was up to Mom and Dad unless the children were willing to go to bat for conservatorship, and at this stage, they did not qualify for such a dramatic action.
The goal? Get her acute situation solved, then convince them to request a cognitive assessment.
I volunteered to do a few things for my in-laws: shop for food, cook meals, and spend one day a week with them. My goal? Primarily medication compliance, organizing the meals I brought, and to spend time with them. If Dad wanted to go out, he would feel safe knowing Mom wasn’t alone.
The plan was that I would cook on Sundays (with the aid of my husband/sous chef), and deliver the food on Mondays. I would spend the day on Monday.
That is the simple version of a more complicated story. Each week I learn more about not only the progression of the illness but of what we did not know that we missed. I learn about Alzheimer’s impact on my father-in-law as he watches the love of his life, his bride of 63 years begin the forgetting. I see him take the brunt of the agitation. I watch depression settle in over the house, the cloud over both of them.
This disease pushes at the souls of everyone in the family, each of us in different ways.
What A Caregiver Is
I make breakfast, I sit with Mom and talk to her while she eats and I make sure she eats. I get her in and out of bed. I try to keep her out of bed. We have lunch together, we laugh and chat. We may watch something on NetFlix, or she might read me the newspaper.
I stand up and sit down, stand up and sit down. That is the most frequent activity next to giving hugs and doing dishes.
Caregiving is flexibility. Caregiving is surprise. Caregiving is looking at the clock and wondering where the day went!
At 5 PM on Monday evening, about ninety minutes into the agitation that is called “Sundowners,” (or Sundowning), I hear my husband enter. Sometimes I don’t hear him. Sometimes, I am on the couch, exhausted and staring at my laptop, the same two lines typed in an article I started at 7:45 AM.
“She is awake, she has been yelling at the housekeeper for an hour, go talk to her, she will be happy to see you,” I say to him. And, of course, she is.
I leave them alone for awhile, I pack my bag and gather last weeks containers and bento boxes. I go over the new English words I taught the housekeeper. I remind my father-in-law that Mom will eat if you put food in front of her, even if she claims that she is not hungry. I have a problem with the concept of just giving her a Boost without trying the food first.
I hug him.
I go to her bedside, I hug her, and she clings to me so tight I feel the same fear that I hear when she asks me, “when am I going to get better?” She says again, one of the several times in the day, “Thank you, honey, thank you for taking care of me, I love you so much.”
“I love you too, Mom.” And I do.
On the drive home, I have to decompress. I tell my husband about the day. I joke about my father-in-law and how he drives the scooter through the house bumping into walls and essentially just making a V: two lines backward and forward. Den to bedroom. Den to kitchen. On the inside, I am wondering if he should be driving.
I give him a dawn to dusk reporting of the day. I tell him about how many times this question is asked or that story is told. I talk about what we laughed at, and what we gossiped about. I do it again moments later when my sister-in-law calls.
I reassure them both that while I am there each week, I can keep track of not only her state, but his.
I arrive home, wash the containers, and put them neatly in their stack of same sized bento boxes. Like nesting dolls of different sizes, a section of our kitchen counter is now taken up by the boxes, bowls, and lids we ordered in bulk from Amazon.
That is not where this ends. Not by a long shot. You see, I have learned something important; there is no such thing as a part-time caregiver. Some nights I go to bed, and I review the day that I spent with Mom and Dad, yes “Mom” and “Dad”. I go over each minute, each conversation. What could I have done better?
Sometimes, I wake up in the middle of the night to write myself notes. I have a list of things to do before I go back to the house on Monday.
I research. I have many questions.
When I am not there, I worry about meds. Did she get out of bed yet? I had better call. Did she eat dinner last night? I had better call. Is she developing pneumonia? She has a cough now and won’t spend more time out of bed.
Sometimes there are victories. The doctor is listening. When I suggested a change in specific anti-depressant, he agreed. My father-in-law letting go a bit, letting me in, sharing how he feels, trusting me.
Not an hour goes by that I do not think of her. Sometimes I am in that world, not reading the book I am holding, not watching TV in front of me, and rarely on social media. Just thinking, journaling.
I am a caregiver. Learning all of the time. I am not psychic. I am not omniscient. I am not ever-patient, but I am more patient than I thought I could be. I am stronger than I expected I would be. I have more stamina than I thought. Because I didn’t think. I just said yes. Because it had to be done.
I am not a hero. I am a daughter.
Dedicated to MY mom who made me a daughter, and to my Gram, I miss you.