Dear Readers,
You will recall that, in Chapter 7, I was explaining how my life in Michigan had been altered by the loss of my wife to cancer, and how I had been pulled into another caregiver mission, this time for my kid sister, Rawbaw, in Wisconsin. Yeah, still here. And it's pretty much a full-time job. (Those of you who have gotten your feet wet in that role will know what I am talking about!) But there is always time to crank out another chapter in memory of Carol Ann, and also to share tidbits of what I've learned in this role that might be instructive to other caregivers.
I think it's time to talk about (1) mortality, (2) fellowship, and (3) organization. These are important topics, and I have been meaning to get around to them, thinking I had forever to talk about them. But now I sense a certain urgency to getting the story told. After all, I'm 77 years old, with Type 2 diabetes, a heart murmur, clogged carotid arteries (that have already been roto-rootered once), problems with night vision and memory, and a bulging disc in my lower back.
These things all suggest that I will not be around forever!
Sure, I still have plans to live to be 100, but let's get real. It's time to write Chapter 8.
Here goes.
I didn't know much about mortality until Pa died in May of 1970. I flew to California to be with Ma for a couple weeks. She was a gentle, wise, and very strong lady — she outlived Pa by nearly a quarter century. Her death in 1994 underscored for me that we all gotta go sometime.
Once you acknowledge that basic fact of life, you can get very comfortable with your own mortality. If you wince at the mention of dying, follow me on this. We are all here on borrowed time — time that God has given us to live our lives. God only knows when our number is up. (Doesn't it say in the Bible that our days our numbered?)
God is also the only Person who knows who will get cancer and who won't — and why some people's trials and tribulations are so much worse than those of other human beings. This tells me not to worry about my mortality or anyone else's.
It's out of our hands, folks! So, worry if you must about things you have some say about and some control over.
Better yet, don't worry. Just go with the flow. There is definitely a flow, from the cradle to the grave.
It is comforting for me to know that every mortal is conceived, is born, lives, and dies. And I believe that when I die, I will be right on schedule. If you can get your head around that one, my dissertation on mortality is done.
Now that I have dispensed with my explanation of mortality to everyone's total satisfaction (Ha!), let us move on to fellowship. I see it as an expression of love, or at least an expression of liking someone, or at worst a willingness to put up with someone you aren't really all that crazy about. Put another way, fellowship is what happens (however temporarily) when we recognize that we're all in this together.
Some people come by fellowship easily. Others have to work at it. I was in the latter category as a kid. My nuclear family was not demonstrative. No one ever hugged or kissed anybody. We loved each other, but our subculture taught us that touchy-feely people were just the littlest bit odd, you know? Carol taught me how to hug, which was timely, because then I ran into her whole tribe, and they were all determined to squeeze me.
Come to think of it, my oldest sister was inclined to be touchy-feely when she was in her teens, but we younger kids would run outside and get a potato bug to wave in her face to ward her off, which usually worked. I owe that woman an apology. I will call her tonight.
Carol's people are rabid huggers. Once they identify you as family, they might get you coming into a room, a couple times while you're there, and really good when you slide out. It's really nice. And it was a source of huge consolation when Carol died. Her kin were always stopping by or having me over or calling me just to say hey.
The fellowship they shared with me right after Carol died was unbelievable. The matriarch threw her house open for a huge memorial for the love of my life. The event featured Carol's food, Carol's music, her life in videos and a wall of photos from infancy to old age, and the social committee invited everyone who had loved her to pieces. There was even a shuttle to alleviate the parking challenge!
To their everlasting credit, Carol's people turned a solemn event into the best party I ever went to. And I'm sure their love for me, so strongly demonstrated, helped me adjust to widowhood faster than I otherwise would have.
I guess the moral to this story is: “Let the people who are part of your life into your life when it seems to be falling apart.” It works wonders.
So much for mortality and fellowship, at least for today. The third topic I wanted to explore a bit with potential or active caregivers in this chapter of my blog is my take (and success, to date) on getting and staying organized.
I'm no pro, mind you, but as a caregiver I have had to get pretty buttoned down.
The way I do it is to “script” myself every morning! Yes, I write myself a things-to-do list for the day that lies before me.
It really helps when you're responsible for a loved one in so many ways. For instance, today's “script” tells me to apply a fresh nitroglycerin transdermal patch first thing this morning, and when to administer eye drops (4x daily with 4-hr. intervals), glipizide (a half hour before breakfast and lunch), a 325-mg aspirin (with breakfast), metoprolol (with lunch and dinner), and atorvastatin and Hydrocodone at bedtime, along with an insulin shot and a change of dressing on Rawbaw's “diabetic foot.” Marginal notes on today's things-to-do list prompt me to hit grocery stores for specific foods, to get to the pharmacy to pick up a med, and to mail checks for my patient and myself to keep current with our bills.
I don't write down the household chores. Sooner or later, I just get around to doing them! But sometimes, like today, I will flag a biggie. Today's is the need to get a plumber in here to fix the downstairs shower — the hot water faucet fell off a couple days ago, and I am a total klutz when it comes to repairs. (Wasn't it actor Clint Eastwood's character in the movie, “Dirty Harry,” who famously said, “A man has got to know his limitations”?) I most certainly do.
Attached to my daily “script” is a second sheet of paper that shows me all the dates and times for appointments to see doctors and get to labs. Below that, I list social events, including dates when family members and close friends are scheduled to pop in and stay in touch. If someone is coming, I put on my Merry Maid uniform and give the whole house a lick and a promise.
Suffice it to say, most people can't carry all this stuff in their head. If you are just a mere mortal like me, giving yourself a daily things-to-do list will make you much more proficient as a caregiver than you'd be if you just winged it.
That said, I must add that you shouldn't take on everything that needs to be done for your patient. It is simply too much for one person to handle. I have gradually learned to ask for help — and family and friends have been gratifyingly prompt in supplying it. Use these resources, please. You'll be of little use to your patient if you're burnt out.
Last but not least, being organized means that you regularly avail yourself of the support that ICAN stands ready to give you as you perform your caregiver duties. Your ICAN links can give you smart questions to ask about your patient's care, and this gentle pressure on the medical community makes everyone think harder and function more professionally. I hasten to add that most doctors and nurses respond very positively to pertinent questions about the cancer patients in their care, and actually encourage you to stay engaged and involved in the process. It is usually a downer for them when a patient's family shows no pro-active interest in possible solutions to Stage IV cancer.
Okay. One last nugget about being organized. Please read all the literature that comes with your patient's medicines. This simple habit will sometimes make you more knowledgeable about aspects of meds than your patient's doctor or nurse! (Hey, no one can know everything, and the average doctor or nurse has a big patient load.)
By way of example, I recently was reading the small print about the nitroglycerin patch that had been prescribed for my kid sister, Rawbaw, and it said that the patch should not be left on for a complete 24-hour cycle, but removed after 12-14 hours in place, yet the simple instructions on the pill bottle from the doctor's office just indicated to change the patch every night. When I called the doctor's office, the nurse I talked with appreciated my input and agreed right away that the patch should be removed after half of a 24-hr. day or so, and she added that leaving the patch on around the clock makes it less effective as an aid to someone with cardiac issues.
Bingo. I had made myself useful that day by simply boning up a bit on meds and asking intelligent questions. You can do the same, and you will be thanked for it by both your patient and (most of) the medical community!
That's it for Chapter 8. I don't know what Chapter 9 will be about until I get my head around it. (This caregiver stuff, as many of you already know, tends to suck up your day!) But there will definitely be a Chapter 9. I'm learning things every day that will benefit other caregivers, and that's what this blog is all about. See you out here soon, okay?
—Michael E. Hearons
