A Caregiver’s Report Card

J Henry RCard

Are you secretly giving yourself a grade for caregiving? Feel you’re falling short? Don’t be ashamed to say so, because I get it. Growing up in my house, a grade of “C” was equivalent to an “F,” and at dinner each night, my younger siblings and I had to come up with good answers to my father’s perpetual question, “What did you do of any consequence today?”

Decades later, while caring for both my parents during the last phase of their lives, and still putting myself to Dad’s test, these are the responses I finally arrived at.

Perfect solutions don’t exist when caregiving, and what may work one day, may not work a day, a week, or a month later. Even knowing this, we often drive ourselves to exhaustion processing tons of information, and absorbing solicited and un-solicited advice while trying to honor the hopes and expectations of the parent we’re caring for. It’s inevitable that sometimes “analysis paralysis” sets in. This happens when we worry about not having all the facts, are concerned the decision may be the wrong one, or have convinced ourselves that the worst possible scenario is going to occur. What can help is learning to stop second-guessing our decisions; remembering we can only work with what we know at any given time, and making peace with the idea of “acceptable for now.”

Caregiving is a verb, and our days run on multiple To Do lists – dealing with a deeply flawed medical system, particularly where the elderly are concerned; ordering and picking up medical supplies and prescriptions; filling out insurance forms; and responding to crises we’d rarely imagined. It’s never-ending, yet caregivers often feel they should be doing more. Once in awhile, try making an “Accomplishment” list, instead. Write down all the things you manage to handle while taking care of a parent/ a spouse/ a child/ a full time job/ a home/your own needs, or any combination thereof. Even you will shake your head in disbelief at what you’re achieving under great odds.

Try not to compare your caregiving experience with others. I was speaking with someone who’d been taking care of a father with dementia for over 10 years. When I commented on how hard that must be for her, she said, almost apologetically, that her dad was in a memory care unit, so she wasn’t a twenty-four hour caregiver. The reality is that caregiving is a 24/7 job whether your parent is with you or not. You’re still the one being called at all hours when issues arise and difficult decisions must be made, so don’t ever devalue your efforts.

Often, the toughest part of caregiving is recognizing that you can’t always make things better for Mom or Dad despite your love and efforts. And sometimes, being with a parent is more important than doing for them.

Finally, forgive yourself for being irritable, resentful and sometimes wishing your caregiving responsibilities were over. It doesn’t make you a bad person. It just makes you human. The irony is that accepting this fact can release some of the unrealistic expectations and pressure we put on ourselves to try and fix everything that goes wrong.

So, for those of you who still feel the need to grade yourselves, I’ve devised a new system with caregivers in mind.

                                                    A – Accomplished

                                                    B – Big-hearted

                                                    C – Compassionate

                                                    D – Dedicated

                                                    F – Fabulous

Now – go ahead and give yourself the “F” you deserve.

Hug Your Pharmacist Today

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January 12th is Pharmacist Day, and it’s time to share a tip straight from Chapter Five of The Dutiful Daughter’s Guide to Caregiving, entitled “Kosher Pickles. Check. Blood Pressure Meds. Check.”

You may not realize it, but when caring for an aging parent, one of the most valuable relationships you can cultivate is with their local pharmacist.

Fortunately for me, my mom was a smart cookie who’d already thought of that. She was a regular at Harrison’s Pharmacy, which was only a 2 minute drive from her home. And while it wasn’t always the cheapest place to fill some of her prescriptions, the assistance we received over a period of time was invaluable. About once a month or whenever a drug was added or subtracted by one of her physicians, the pharmacist would print out an updated list that included what each medication was for, and the exact dosage. So, instead of dragging a laundry bag of pill bottles with her to each doctor’s appointment, she took this list, instead. In addition, she gave copies to me, my siblings, paid caregivers, and also kept one in her handbag for emergency room personnel at the hospital.

Since older adults can often find themselves under the care of multiple specialists prescribing a cornucopia of drugs, a knowledgeable pharmacist can be the first line of defense when it comes to sounding the alarm about potential side effects and interactions. Especially important, since taking more than three medications daily can increase those chances.

By the way, what works for your parent can also work for you. So, next time you visit your own pharmacist, take a minute to say “Thanks.” Down the road, it could be a life-saver.

The Wisdom of a Caregiver

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With permission from members of my writer’s group for caregivers, I’ll be sharing some of their work with you from time to time. This powerful piece, by Anne Lawrence, is a response to four questions posed at our last meeting. What would your answers be?

Q What do you wish you’d known or were told before taking on the role of caregiver?

Q What has been the hardest part of caregiving?

Q What has been the most rewarding part of caregiving?

Q Please share some advice for someone who’s new to this journey.

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Some Advice

“I’m so tired,” said Dick, as I tucked him into bed this morning at 9:30am. He had been up for three hours, but he needed a nap. For the past few weeks, he’s been failing, faster now than the slow fail to which I’ve been witness for almost seventeen years. It’s not cancer, which even when it’s slow is faster than this. “This” is what obituaries call “complications of diabetes,” the decades-long, inexorable march to death. It’s a quiet suffering. There are no pink, purple, or red ribbons, no television marathons, no lawyers promising you compensation. Because unlike mesothelioma, which can be proved to be someone else’s misdoing, the suffering associated with diabetes is, in the eyes of many of the healthy, your own damn fault.

I don’t blame Dick for his diabetes. I’ve watched him follow the doctor’s orders for thirty years, taking his medication, watching his diet, exercising. What the doctors don’t tell you is even when you are doing your best, the disease is damaging you. And there is no escape; no surgery to remove the mass, no chemo or radiation to kill the cells. There is nothing to be done except “manage” the disease. So we are managing.

“Maybe the owl is on his way,” Dick says to me, kidding of course, but is he really? He’s told me that after he dies, he’s going to come visit me as an owl. For quite a few months, there has been an owl appearing at intervals around our house, just sitting on the fence looking into our windows or swooping past me as I water the flowers. Dick decided that it’s my father, who died in 1985 and, to my knowledge, has never visited me before. But Dick claims the owl has a little mustache like my dad’s.

“You can’t come back as an owl if my father is an owl,” I say. “How will I know who’s who?”

“You’ll know,” he tells me with a sly smile. Many people would probably find this owl business morbid, macabre, or just plain weird. But we find it comforting and even fun. Dick wants to be cremated but he doesn’t want me to have a big honking urn on the fireplace mantel. “Just put a bit of me in a little owl and he can sit next to my golden chicken,” he said. Dick’s golden chicken is a gift from my sister. Along with a golden color, the chicken has Swarovski crystals and three tiny golden eggs. It’s only about two inches high and sits on our coffee table right in front of his chair. It symbolizes the financial windfall we were told was coming by the psychic my sister and I visit each year. “Your husband is sitting on a golden chicken,” the psychic told me. “He’s going to bring you lots of money.” The money never arrived, but the chicken did. So now Dick wants a little owl to match it. How am I going to find an owl that’s also an urn, I thought. But one enquiry in Google [owl cremation urn] brought him right up: A tiny owl that opens for about half a teaspoon of remains. I bought one right away, worried that I wouldn’t be able to find it again when the time (when is the time?) comes. Then, never to be outdone, my sister found an owl necklace with room for about a quarter teaspoon remains. We got three because, in addition to me, my sister and niece also want a piece of UD, as he’s called around here, Uncle Dick.

So some advice I’d give people who are caregivers for the very sick: Don’t be afraid to talk about the end. If you’re not afraid, the one you care for won’t be either. Embrace it, talk about it, laugh about it, cry about it. It’s difficult, of course, but I must believe it’s less heart-wrenching than pretending.

Dick and I were pulling into the driveway the other day from a particularly difficult doctor’s appointment and there was the owl, sitting on our neighbor’s air conditioner, watching us enter the garage. “Hi, Dad,” I said. “How’s it goin’?” Dick laughed and went into the house. About ten minutes later he was watching a western on TV. An owl flew over the Indian guide and the western settler. “Sign of death,” the Indian said. Dick and I looked at each other and howled.

So that’s something else I’d say to caregivers: You’re allowed to laugh.

Anne Lawrence

November 23, 2015