Oct 24, 2013

Alzheimer's and Advocacy for Audrey

"The ordinary acts we practice every day at home are of more importance to the soul than their simplicity might suggest." -- Thomas Moore

By Pamela R. Kelley
+Alzheimer's Reading Room

Forget Me Not
Forget Me Not
The State Flower of Alaska

If you’re like me, you’ll have heard it a thousand times before arriving at the end stages of Alzheimer’s with your loved one:

You have to be their advocate when dealing with the medical community.

But what does that mean? What does it look like?

How do I know when I’m advocating in the right way?

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*Pamela R. Kelley is the full-time caregiver for her mother; and, a long time contributor to the Alzheimer's Reading Room. She lives, works and writes in Anchorage, Alaska.
Here’s a little example, one in which I think I got the advocacy bit right. You can be the judge.

My mother, Audrey, was enrolled in hospice care earlier this month. Regular readers might recall our experience from On the Brink of Hospice.

The comments I read added important information to the core knowledge I had developed through earlier research in preparation for this stage.

Other important information came from my familiarity with Audrey’s own views.

Seven years ago, Audrey had some orthopedic surgery and was on one of those on-demand morphine drips immediately afterward. I stayed at her bedside and witnessed her fear while hallucinating.

Days later, Mom remarked upon the experience. I remember her shaking her head in disgust, and telling me that if THAT was what happened to people on drugs, then she couldn’t figure out why they’d want to do it to themselves.

The day after the hospice provider received the referral from my mother’s physician, the hospice nurse was there to examine Mom and talk with me. I took some notes and listened carefully about what was contained in the locked box of medications now stored in the refrigerator.

None of them is a drug that I would want administered to Audrey without my express consent. 

In fact, I insisted the hospice nurse make note of that.

Mention of the morphine instantly brought to mind Mom’s prior experience as well as some strongly expressed opinions from the Alzheimer’s Reading Room commentators.

Pain, when it appears, is normally associated with my mother’s arthritis. There are times when it’s severe, and I see it in her face and in her movement and in her behavior.

Our approach to managing that pain had been largely effective: NSAIDs to start, administered most days. A prescription-grade topical analgesic on rough days, a few times each month. Acetaminophen with codeine on the really bad days – perhaps two or three times a year.

So I wasn’t thrilled to learn that the assigned hospice doctor, without having spoken to me or examining my mother, discontinued her prescription for the codeine-laced Tylenol.

Even though we hadn’t used it in over four months, I was on alert. I called the hospice nurse to find out what was going on. He told me that they had better meds for Mom than that – fewer side effects and all. Of course, he was talking about the morphine, albeit in very low dose.

Very slowly and carefully I told the nurse, “As my mother’s health care proxy, I do not consent to any use of morphine for arthritis pain.”

There was a long pregnant pause. I suggested he put in his chart notes that my informed consent was withheld. Medical types understand the legal implications of “informed consent”.

That left us with a big question mark as to what we could use when Mom had a really bad day with arthritis pain. We collaborated on that. I provided information about successful methods employed in the past, including transdermal patches that seemed to me likely to work well on a woman who no longer swallows pills. The nurse departed to do some research as well.

We agreed on a strategy that involved a daily non-narcotic in place of the NSAID and patches for days with increased pain.

In reviewing the side effects on the daily pill proposed, two caught my attention: increased energy and increased appetite. The pill was to be administered early in the day so as not to disrupt sleep. My interest was piqued because Audrey’s unwillingness to eat is what led to the weight loss that brought us within hospice’s care.

This approach was worth a try.

Four days into this course of treatment, Audrey and I parked her wheelchair and walked down the hall to a couch where we like to sit side by side while holding hands. It had been weeks since we’d walked anywhere but the few steps to the bathroom.

When it came time for lunch, we traveled to the dining room in the wheelchair.

Once there, Mom ate several bites of eggplant Parmesan. Then I watched,


as she pushed away her plate and leaned forward to pull her dessert toward her. She ate every bite. I removed the plates in front of her, and she spied the dessert in front of my own place setting.

“What’s that,” she asked and pointed to my slice of chocolate cake.

 “That’s dessert,” I said as I pushed my cake into her fork’s range. I sipped my coffee to conceal my widening grin while I watched her eat my dessert too. Every bite. That’s not been seen in six months, easily.

Here’s how I see it: By engaging with the hospice nurse over pain management that excluded the morphine, their “go-to” drug of choice, we came upon a better approach to managing Mom’s daily arthritis pain. And stimulated her appetite to boot.

It was such a good day that I wanted to share it.


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