My average day begins too early to rise, so I look through my memories on facebook for inspiration. I then either share the original post or create a piece of art to share, by placing a quote that resonated with me years ago onto a photograph that resonates today. By now, my ragamuffin kitty has decided it is time for me to get out of bed and serve her breakfast and offer her my chest to purr upon.
I put the water on to boil and place her dish of hope onto the spot reserved for her meals. I hope she will eat what I have selected for her today. I then make my pour over coffee and sit down for morning reading. By the time I have finished my coffee, it is time to head over to serve my studmuffin. Just kidding, it’s my Dad.
I usually arrive to find him working a puzzle on his tablet, while listening to music or a tv show playing in the foreground. He smiles when he finally looks up to greet me. This is the picture I will carry with me for all of my days. I hand him his water mug and feed him two handfuls of morning meds. He gets something for epilepsy, something for neuropathy (repercussion of a lifetime with said dis-ease), something to elevate his low blood pressure, a probiotic, CBD oil, and two tylenol.
Next is the breakfast inquiry. Will it be a bagel with cream cheese? Will it be italian toast with butter and jam (not jelly! jam)? I put the bagel in the toaster and start the coffee. At this time, evidence of other life in the house emerges. Two small dogs, one mid-size dog, followed by Mom in her nightgown. We all say good morning, and get on with our daily ritual.
Dad gets his bagel and an Ensure for extra protein. When coffee is half brewed, Mom and Dad are each served a cup. I do a little tidying on the kitchen chaos (my least favorite task, next to filing), and once everyone is settled in, I head out the door receiving gratitude and a “drive careful” from Dad. I am driving exactly seven houses east of theirs.
Today, I will go back at noon to help Dad with a bath. We had one of the three bathrooms in the house they bought a few years back (to be closer) outfitted for his care. It has a walk-in tub, a taller toilet with bidet, and now it has what I call a toilet corral. There are bars everywhere, to assist Dad with safe movement through the space where his walker will not go. Strategically installed, he is able to push himself (with a bit of struggle) to standing, and pull himself forward. Since he also has a loss of dexterity in his hands, we are able to assist with hygiene and wound care (pressure sores from sitting and thinning skin) from this station.
When he carefully steps into his tub, we will close the door and fill it with warm water. As it fills, I can use the sprayer to wet and wash his hair. Then, when the water is above the jet ports, he can relax for a bit as the warm water massages his aching and fatigued body. Last week, we received help with this task, when I asked if we could add more assistance to his home care. He has physical therapy twice a week, and a wound care nurse comes once a week. What I found, as I was going over our routine with the aid was that… I didn’t want to give this up!
I know that I will not always be able to do this all by myself, but when it comes down to asking for help and receiving it… I am quite certain that no one can care for my father as well as I. The thing is, helping him out of the tub has become more difficult. Standing up to exit the tub is more challenging than before, and I cannot always get him to his feet alone. My father is six feet tall and somewhere under 200 lbs. But still… that bath time is divine, and I am not willing to allow him to forego it – even if I can only get him in there once a week (like a defiant toddler).
Next comes getting him dressed. Last week, the aid had to dash off to help another, and so we finished the bath time ritual on our own. Getting him slowly to his lift chair. Pulling depends and flannel pajamas over his feet and up to his knees. The excruciating struggle to stand again, after so much work getting in and out of the tub – and finally pulling up both bottoms so he can finally sit down for a long rest. Seated, we can do the rest. Shirt over the head and reaching through the arm holes to find his clenched fists. Using the trick a nurse taught me in pre-op to get his compression socks on by placing a plastic baggie over his toes, then pulling it off through the hole. And finally, putting on socks with non-skid soles – to keep him just a little safer between recliner and bathroom travels.
Today, Kelly and Jodie will come for PT and wound care. We love how they love him. I will stop by to see if I can get him to eat, or at least to consume another Ensure. He’s not very good with the fluid consumption, when getting up to pee is like a hero’s journey, so I’ve been tricking him with a big bowl of watermelon in the late afternoon. Then I go back in the evening to ‘tuck them in’. I fix Dad something to eat, if he’ll have it, and give him his evening pills (pretty much a repeat of the morning meds). If he’s up to it, we’ll do another trip to the bathroom before I go home and go to bed, after checking that all doors are closed and locked.
A couple of days ago, while waiting for Hurricane Dorian to arrive (gratefully, he took a detour and stayed to the east of us), my phone rang at 3:30am. I picked up the call and said: “Hold on, Dad. I’m coming!”
I know it is Dad when the display reads: Mom’s Cell. I had my brother surround the house in Alexa dots, and he programmed them to dial my number if Dad asked her to call me. I have one next to his chair and now I have one in the bathroom, too. When I arrived, two minutes later – groggy, but being sure to grab my keys this time, instead of my pendulum as I dashed out the door, he was on the floor in the living room.
Mom is hearing impaired, and could not hear him call. Without panic, I went to the IndeeLift we keep plugged in nearby, and I rolled it over to him, so he could hand walk himself back onto the platform. Then, he slowly rose from the ground as I pressed the arrow UP. With the use of his walker, we finished what he started… an early morning trip to the potty. Mom woke up and by the time we had Dad settled back into his recliner, we were all pretty much awake, but grateful that this was a pretty low drama moment. No blood. No mess. Just a whole lot of body betrayal to battle and overcome.
Dad apologizes when he has to call, and I remind him that this is exactly why I have chosen not to go back to work. It is his job to call me when he is in need, and it is my job to respond to the best of my ability. This is by far, the most important and rewarding work I’ve done. I can remember the sense of urgency and the heaviness I felt while supporting the head of HR who was responsible for the CEO succession plan for a Fortune 500 company. There were many days that I cried for the stress of it all. Did I leave anything on the copy machine that may give away the idea that a 65 year old man in waning health might actually retire some day – and cause the corporate stock to plummet? How silly that seems to me now. Who fucking cares? I will never understand how corporations have become more important than people.
I have shed my concern for the shareholder, and give everything now to my most beloved careholders… the people who raised me. Both social workers for their entire careers, they taught me the importance of community care and respecting the dignity of all beings. They deserve to receive the care they offered to others, and I’ll be sure they get it.
Now, you’ll have to excuse me. It’s bath time! “Hold on, Dad. I’m coming!”