Four Months, One Yellow Form, and the Endless High Waves of Caregiving

This yellow form has been taped to our refrigerator door for exactly four months today (5/17/17):

This piece of paper is the Do Not Resuscitate Order you are required to keep on your refrigerator after the decision has been made to enter hospice care (it has to be placed on the refrigerator because first responders are trained to look for it there if they are called to your home).

After Dad passes away, this paper needs a proper send-off. I may craft it into an origami boat and set it out to sea after reflecting on this last passage of his life.

Every time I am outwardly sarcastic, impatient, and/or frustrated with him, I think to myself “you are probably going to write a blog post after all of this is done reflecting on how you could have been less sarcastic, more patient, and less triggered by frustration if you had just realized how short the time would be and how he truly was the victim of a mind incapable of remembering much, a body that persevered except for the tumor in his throat, and a will to live that disappeared when his wife died in November 2013.”

In his book Spaceman, Mike Massimino talks about his assignment repairing the solar arrays on the Hubble Space Telescope. Obviously he had not been able to practice on the real thing, so he had one shot at getting it right. He said it was like only playing MLB video games for years and then being put in to the World Series with the bases loaded, in the seventh game, with the ultimate outcome relying on you.

We didn’t have dress rehearsals for caregiving, especially for the terminal cancer part. It is hard sometimes to reconcile those smiling seniors in commercials and nursing home ads and Boost commercials with the real thing.

If you find yourself thrust unexpectedly into caregiving mode, here are a few observations from the last four months that may help you prevail when the bigger waves hit:

THE PHYSICAL MESS. This is not a tidy process. Although I know every case is different, it is not unusual for an elderly person with memory deficit to stop caring about hygiene; there’s a lot of cleanup involved. Right this very moment I am putting off complying with Dad’s request to help him clip his fingernails. On the one hand, it’s not fair to foist it on Wayne (my husband). On the other hand, I know what’s under those nails and I am near my gross-out quota just thinking about it. Stock up on hand sanitizer and Clorox wipes; learn to delegate (I’ve struggle with the delegation part).

THE EMOTIONAL VARIABILITY. To say each family member and friend handles the transition involved when a loved one has a terminal illness differently is putting it mildly. It is easy to get wrapped up in our individual takes on the dying and forget (or not know how) to support one another. There’s avoidance, anger, and confusion. Take support where you can get it.

SPEAKING OF SUPPORT, DON’T FORGET TO LAUGH. Caregiving for an elder mirrors raising a young child, except a child is going to progress on to autonomy whereas an elder is regressing to a dependent state. We laughed at the humorous moments of our children’s upbringings. Humor in the caregiving process has its place too. It’s kind of dark humor, though, so find someone who “gets it.” I adore the lovely woman who comes to give Dad communion every Wednesday, but honestly the first time I realized I hadn’t warned her that his tumor’s location makes swallowing difficult, I could not get out of my head how ironic it would be to meet your end by choking on a communion wafer (so far so good though — maybe a little extra holy dispensation makes those suckers go down easier). Find tribemates who know your laughter comes from a place of love rather than ridicule.

WHEN PEOPLE ARE WILLING TO PEEL AWAY THE BLINDERS GIVING YOU TUNNEL VISION, LET THEM. Dad’s one favorite pastime is smoking his cigars. It’s really (in my opinion) more of a compulsion. He wakes up, whether it is dark or light outside, and one of the first things he does is go outside to smoke a cigar. Unfortunately, this is a bad idea at 2 a.m. when everyone elsse is asleep. I told our hospice nurse that I was considering blocking the door so he wouldn’t get out, but I was afraid he would try to smoke inside and would burn the house down. Brilliantly, she suggested something I had not even considered: Hiding the cigars. OH.

PICK YOUR BATTLES, RECOGNIZE WHAT YOUR POWER STRUGGLES ARE REALLY ABOUT. Dad and I go around and around about the fact that he lets the cat out all the time. Now, this cat is a survivor. She was rescued off the streets as a kitten. Outdoors is her jam (except for the fact that all the food is here inside). But my fears about being responsible for losing my daughter’s cat are off the charts, and I get so angry, especially when he stands there and says, for the upteenth time, “do you want the cat to stay in?” Calgon take me away!

CENTER YOUR SOUL. I am not worried about Dad’s soul. He is a devout Catholic who can still knock out a few Hail Marys when Carol comes to give him communion. I have a hard time reconciling, though, why he has to finish things out this way: with a growth inside his throat that will ultimately force him to either not have sufficient air to breathe or not be able to consume enough food to stay alive, all the while having memory problems severe enough that he wants things to eat that he can’t possibly swallow.

Which brings me to how the heck to center my soul amidst the mess, the power struggles, the uncertainty of it all. While my physical body feels the least unwell because I have let so much slide nutritionally and exercise-wise, my spiritual life is struggling too. Not with fear of the hereafter, but with the sense that the high waves of “survival mode” will never abate.

I saw this beautiful hand-lettered image by my friend and co-worker Elizabeth Johnson as I was composing this post in my head. The main thing it has in common with the form on our refrigerator is the color yellow. BUT, the form on my fridge has more to do with the physical world whereas our souls touch other dimensions.

If your soul is fatigued from coping with caregiving, or supporting someone in your life who is a caregiver, remember that still water lies beyond the rough waves. It’s okay to ask supporters to help you navigate your way there.

Credit: Elizabeth Johnson

Wife of one, Mom of two, Friend of many #IR4 Gareth