How to Choose a Great Health Care Agent

Jackie Bedard
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Attorney, Author, and Founder of Carolina Family Estate Planning

The following is an article from the September 2020 issue of "Get Your Ducks in a Row" Carolina Family Estate Planning's Free Newsletter. You can read the rest of the issue, as well as back issues of our newsletter online at www.carolinafep.com/library/newsletters/ or subscribe for free at www.carolinafep.com/newsletter.cfm

My grandfather passed away in April, just shy of his 96th birthday. Over the years, I’ve shared many estate planning-related stories of my grandfather with clients. As a tribute to him, I’m sharing these stories with you. We won’t be able to fit them all in the newsletter, so if you’d like to sign up to receive the full series by email, please go here: https://inmemoriam.carolinafep.com

I recently visited an online caregiver support group for adult children caring for a parent with dementia or Alzheimer’s disease. One of the members asked whether the other members had taken their parents to a neurologist for a cognitive examination. I was shocked by the number of people that replied saying that they hadn’t! Some commented that it was too difficult to get mom or dad to the doctor, but many also commented that they didn’t see any real benefit.

Memory loss can be caused by many different factors and there are quite a few dementia-like symptoms--some of which can be reversed, including infection, organs that are not functioning properly, an injury to the head from a fall, alcohol use, medication effects, or vitamin deficiency. Similarly there are other brain diseases and disorders that can create dementia-like symptoms.

Further, there are numerous different types of dementia with the most common ones being Alzheimer’s disease, vascular dementia, Lewy Body dementia, and frontotemporal dementia. Some forms of dementia may respond to medications which can aid in slowing the progression of the disease to maximize quality of life, while others may require a different course of treatment.

A proper diagnosis is critical to creating a proper care plan and understanding what the care journey may look like for an individual with cognitive impairment.

The second thing that’s critical? Having a great health care agent that is willing to advocate for you (or hires a care manager to help advocate for you).

In my grandfather’s case, he had vascular dementia which is generally caused by problems in the supply of blood to the brain. It’s commonly seen in those that have suffered minor strokes. With vascular dementia, it’s not uncommon for signs to be exhibited after a stroke, and then in some instances, cognition may actually improve a bit with time before suffering another set back when there is another minor stroke. In my grandfather's case, most days his cognition was pretty good. He knew who family members were and he could hold conversations and make jokes, but he would also have occasional bad days where he was prone to disorientation or delusions.

In December 2017, my grandfather ended up in the hospital after breaking his hip. After the surgery, he had some complications. Like many seniors, he had difficulty recovering from the anesthesia and he was having trouble swallowing. More and more days passed and he still couldn’t keep any foods or liquids down and we truly thought his end was near. His attending doctor seemed pretty cavalier about it--even going so far as to make comments about my grandfather’s age (he was in his early 90s), that “he’s lived a good life”, and so forth.

The doctor had effectively given up on my grandfather.

My aunt got a second opinion from an outside medical specialist and she had to appeal to the hospital to have a new doctor assigned. They eventually got the bottom of things, came up with a treatment plan, and my grandfather returned home.

Unfortunately, this was not the only time that my aunt encountered ageism and dementia-biases in the healthcare system. My grandfather was prone to blood-pressure issues and fainting spells that would often end in a precautionary trip to the hospital. Time and time again, my aunt encountered doctors who saw the word “dementia” in the medical file and would attribute any signs of confusion to dementia and would be ready to discharge him. My aunt would have to advocate for further treatment explaining my grandfather's decent cognitive state prior to being admitted to the hospital and that he clearly was not back to "normal" (for him). Eventually, the doctors would relent and provide additional treatment until my grandfather improved. By the time of discharge, my grandfather would be joking it up with all of the nurses.

When we discuss selecting health care agents with our clients, we tell them--don’t just go with the obvious or expected (e.g., the oldest child or the closest child), really consider--who will be the best advocate for you? Who will be willing to speak up and ask questions to make sure you receive proper treatment and that your wishes are honored? Who will make sure you're not being subjected to ageism or biases?

In honor of September being World Alzheimer’s Month, we’ve launched a new online seminar, Is It Just Memory Loss? Cognitive Impairment, Dementia, & Alzheimer’s Disease: What You Need to Know. If you or someone you know is showing signs of memory loss, has been diagnosed with mild cognitive impairment or dementia, please watch this important program and share with friends and family: https://memoryloss.carolinafep.com

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