by Beth Whitman
“If you or a loved one have concerns about memory loss or other symptoms of Alzheimer’s or dementia, it is important to be evaluated by a physician.”
When I see this statement on so many of the websites that deal with Alzheimer’s, my thought is always the same: “Why? Why is it important to get to a physician if there is no cure?”
Yes, there are pills you can take (if you can remember to take them) that are intended to slow the progress of the disease. But the endpoint is the same, and the pills simply hold you at a certain level of decreased functioning. Improvement is measured only by the temporary absence of decline, which comes along soon enough, that’s a fact. My personal experience has been that doctors have little impact in the treatment of Alzheimer’s, offering only short-time measures at best. I guess that might be helpful in some cases, but certainly not all.
Sometimes I am asked how long my mom has had Alzheimer’s. I honestly don’t know off the top of my head. I have to stop and assess when it was that I first noticed any symptoms. It was sometime in the early 90s, I guess, that I began to notice signs of memory loss, but memory loss can be exacerbated by depression, and I would maintain that Mom was depressed at that time. However, mine was the minority opinion on this. No one else in the family (including Mom herself) would countenance the thought that she was either depressed OR showing early signs of dementia.
Perhaps the merit of being evaluated by a physician is in the opportunity to find out that Alzheimer’s is not the diagnosis, that the troubling symptoms are the result of something eminently more treatable. But again, ever the contrarian, I’d say my trust in a doctor making the correct diagnosis is minimal. I tend to believe that greater awareness of one’s body, along a willingness to research remedies and symptoms on one’s own, is a more beneficial path than relying on doctors to solve every ache and pain.
I come by my skepticism honestly. Mom and Dad were followers of the health food movement before it was even popular, and I consequently grew up with a healthy distrust of the medical system. And my parents were very picky about the doctors they would see. They interviewed a number of them and ultimately chose their primary care physician based on his willingness to listen to them regarding their self-diagnoses and plans for self-treatment. Not many physicians are willing to collaborate with their patients in this way, but my parents insisted this was a prerequisite for any doctor they chose.
So it took a lot for us to accept the treatment of my 85-year-old mother with pills and medicines that might have some positive effect on this incurable and degenerative disease but would definitely have side effects that were just as bad as, if not worse than, the memory loss itself.
Mom’s decline had been slow but relentless, and Dad had unconsciously compensated for her symptoms until he came to recognize the toll it was taking on him. And then, when Dad had a stroke, he knew that he was no longer capable of compensating for Mom’s decline and that the situation was getting both untenable and dangerous.
Mom was just beginning to move into what people consider to be the “middle” stages of Alzheimer’s. Blessedly, it was during this middle stage that Mom began to relax into the disease. It no longer disturbed her that she couldn’t remember things. She didn’t even try to remember a name or an event anymore. She would simply laugh it off and ask Dad to tell the rest of the story or come up with the name. “I just don’t remember anything anymore,” she’d say.
Mom, usually elusive and in the background, began to take center stage. She became cuddly, physically affectionate in a way she had never demonstrated before. Her curiosity about the world around her was fabulously contagious, and she began to have a joie de vivre that I had rarely seen in her. It made me feel as though I was finally able to see and understand my mom as she had been as a young woman and child, when the world before her was full of unending possibilities and excitement.
But as she started to enter into the late-middle stages of Alzheimer’s, the fun was replaced by the scary. What she was experiencing, as best as I could discern, was no longer just a lapse of memory, but a complete blank. As well as an awareness that the blanks were increasing in frequency and completeness. The only thing that seemed to calm her down when she was overtaken by the blankness was the reassurance, like a reawakening, that she was loved and would always be taken care of.
When the episodes of complete blankness began, it was frightening. Neither Dad nor I knew what to do. I decided it was time to call mom’s doctor. He suggested that it was time to start working with hospice, and gave us prescriptions for Haldol and Ativan, two drugs he said might be helpful.
Haldol is an anti-psychotic. Ativan is an anti-anxiety drug. I resisted giving Mom medication because, with a little sensitivity, it was usually possible to figure out what was causing her anxiety and take steps to calm her. At a certain point, however, she began to have episodes where her anxiety was off the charts. It became practically impossible to soothe or reassure her, so I started giving her a quarter of an Ativan whenever this happened, and that would usually calm her down.
But about two months before she went into the Alzheimer’s facility, her anxiety and irritability started to become more random — I was no longer able to identify the cause. Increased doses of Ativan worked for a while, but eventually stopped having any calming effect. That’s why I decided to try the Haldol. We had tried it previously but it had clearly been the wrong drug at that time. It had left Mom catatonic — she could barely sit up or respond in any way. So after only one pill that earlier time we shelved the Haldol.
Although it didn’t make sense to me initially why an anti-psychotic would be prescribed for Alzheimer’s, I started to see that Mom’s behavior no longer seemed to stem from anxiety, but from something else now — a deep mood or experience that was outside of the stimulus of what was actually going on around her. Haldol subsequently did the trick. And in the last two weeks before Mom left for the Alzhiemer’s facility, I finally succumbed to giving her the prescribed dose of of both drugs that had been ordered by the doctor and confirmed by the Hospice nurse: 1 mg Haldol every six hours, and 1 mg Ativan every four hours as needed.
Instead of becoming catatonic as she had before, Mom actually perked up, was more alert and curious. When I’d walk into the room, she would reach out to give me a kiss or rub my arm and happily chatter on about the lights she saw in the distance or the birds she saw outside the window. Though her sounds were almost unintelligible by this point, I could always tell what she was trying to say by how she gestured or by the few words that came out un-jumbled.
Mom is now on about half of that dose. She has been in the Alzheimer’s unit for about six months. But that’s not the end of the story. Stay tuned for more tales of the ongoing struggle, and the unexpected challenges of managing her meds in the facility she now calls home.
Beth Whitman lives in Maine and is a member of Belfast Cohousing and Ecovillage, a developing community on the coast of Maine focused on multigenerational living and sustainability.