Advances quell suffering for Alzheimer’s patients and caregivers

Recent care options make what happened to my mother less likely

Ray Burow avatar

by Ray Burow |

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I’m grateful to write a weekly column for Alzheimer’s News Today. It’s true what they say about writing: It’s cathartic. But I can’t lie. Writing about the events surrounding my mother’s Alzheimer’s disease and our family’s experience with it can be painful.

At times, my writing takes me somewhere I’d prefer not to visit, and such is the case as I pen this particular column. But I’m hopeful that if you’re having a similar experience, you’ll find encouragement here. Perhaps you’ll navigate a similar situation more eloquently by following my family’s history. Maybe something I experienced as a caregiving daughter will help you today. That’s always my prayer and desire.

In addition, my mother was the type of woman, mother, grandmother, and friend who’d be delighted if a reader could gather something positive from her suffering, which brings me to this week’s topic.

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The Death of Denial

Alzheimer’s disease is tough enough

Living with Alzheimer’s isn’t easy for caregivers and certainly not for the person bearing the mind-altering illness. I suppose that for my family and our mother, however, it was as easy as it gets.

In the early stages, the disease was barely noticeable to anyone outside the family. My mother continued her life as she always had. Her husband and we children kept watch from a distance, ready to intervene in case of a misstep, but for the most part, she maintained and enjoyed life.

There were, of course, changes, but they were slight; she began to lose interest in activities she’d always appreciated, for instance. But she was still present.

Losing ground

As Alzheimer’s goose-stepped further, my mother began to lose ground. That made the middle stages challenging, but we were grateful: She was still mostly there. She was always kind, never combative, and remembered her children and grandchildren. She could still attend church, special occasions around the dining room table, and her grandkids’ various sporting events. She couldn’t keep track of the goals, baskets, or scores, but she was there, cheering them on and clapping her hands over her head, which was her signature applause.

Most significantly, in the middle stages of Alzheimer’s disease, Mom could still travel to her doctor appointments. She could walk to the car and climb in the front seat, where my sister or I would help with her seat belt, and we’d be off. She could walk into the office, sit, and kindly (if impatiently) wait her turn. (Alzheimer’s robbed her of time and space. Minutes seemed like hours.)

Through the early and middle stages of the disease, as traveling became more complicated, this routine continued. That meant help was always accessible. My mother could find assistance as long as she could physically make her appointments.

In the late stages, my sister and I could work together to take my mother to the doctor. But in the last week of her life, when she especially needed to be seen, accessibility and assistance ended abruptly.

Last days

For a long while, my mother’s diabetes was under control; then, suddenly, it wasn’t. She wasn’t insulin-dependent, though she took a prescription medication for the condition. But somehow, without explanation, her blood sugar soared the week before her passing. We couldn’t get it down and keep it down, but what’s worse, neither could we gain the attention of my mom’s doctor.

It had become physically impossible to take her to the doctor’s office. We would’ve been satisfied with a phone consultation, but couldn’t even get a callback.

We tried in vain to find a doctor who’d make house calls. Remember, this crisis happened before COVID-19 and the introduction of telehealth appointments.

We learned that hospice doctors would visit if she were enrolled in such a program, so we enrolled her. The organization we used is excellent, but we didn’t know that its hospice doctors would only assess the patient for the disease for which they were enrolled. That was Alzheimer’s, not diabetes. Help for that was available to my mother until she was incapacitated and couldn’t walk into a doctor’s office. She thus suffered needlessly.

But that was then.

Better days

Hospice was a godsend, but our experience beforehand was excruciating. Imagine the frustration of needing answers and having messages ignored. To this day, I’m unsure what was happening on the other side of the phone.

Thankfully, things are different today. COVID-19 introduced telehealth. Through it, most patients have access to physicians and healthcare agencies. Doctors can access health information and even prescribe medications online. Further, visiting nurse house calls are more common, and they can draw blood and deliver it to a lab for analysis.

Such progress lessens the chance of my mother’s experience multiplying. I hope so. I wouldn’t wish it on anyone.

Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.


Laura Medeiros avatar

Laura Medeiros

I commend you for being able to write about the horrors we experience in our current "broken system" of medical care. It is all about the numbers and wanting more visits, more visits. Sadly, even with the TELEHEALTH, that is another way to force poor elderly family members to spend all their time dealing with doctors and specialist doctors. Geriatrics is a dying profession that nobody wants to go into thanks to the rise in dementia and the paperwork nightmare. All my parent's MDs and other providers are always wanting to put the in an institution and obviously have no idea how abusive these places are to family. Isolated and alone. Sad. I am using caregivers and the cost is enormous and if Dad doesn't die peacefully soon in his own bed, may have to more them from their home but trying to stay the course. I took care of my elderly Aunt and honestly, she had a Medicare Advantage Plan and I would not wish that upon anybody. Great if you are healthy and not using resources but terrible if you are one that requires more care like dementia. We were treated like we needed to put her out to pasture and how dare we prolong her life by several MDs but my Aunt was happy and healthy until the very end. Maybe she would not have wanted us to take such good care of her but I would never live with myself if I had just thrown her away in an institution because she never married and had kids to care for her. She was a wonderful human being my entire life and deserved to die with dignity but live with dignity too...even if I had to demand it from our broken medical system. It was exhausting!


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