Special to the Mirror
At the beginning of our journey, I became obsessed with searching out all the information I could find on dementia, and Alzheimer’s Disease in particular.
At the same time, friends, family and even acquaintances who learned about Bill’s diagnosis offered advice based on things they had heard, or sometimes experienced first-hand regarding various aspects of dealing with it. Over the years, we explored countless possible treatments and remedies, some prescribed by physicians involved with us, some not. None of the physicians ever promised the medication they prescribed would cure, or even slow the progress of Alzheimer’s for Bill. What they offered was, “Maybe this will help.” Very different from the headlines that screamed things like: “What the Doctors Don’t Want You to Know”, “Coconut Oil, The Miracle Food,” “My Husband is Recovering,” and something I read recently that was titled: “Alzheimer’s Disease Can Be Reversed.”
Shortly after Bill was diagnosed, I was told the average life span for someone with Alzheimer’s was seven years. Now, the timeline is given as anywhere from a few months to 20 years. Partly, I think, that’s because where most patients diagnosed with Alzheimer’s used to be in their late 70s or 80s, now it is being diagnosed in people who are in their 40s. Is that because people used to be able to hide it more, or were simply dismissed as eccentric or suffering from something else if they exhibited the symptoms in mid-life? Or might it be because whatever is causing the disease is hitting people at a younger age?
In my personal experience, someone with Alzheimer’s may be able to hide the symptoms with coping strategies in the earliest stages, but not for long. For one thing, the ability to understand how to carry out complex tasks is lost fairly early on, and if one has a job it becomes harder and harder to do that job. That is precisely what first twigged me to the underlying cause of difficulties Bill was experiencing in his mid-50s.
At that point he was still the one who got us places (his sense of direction was wonderful while I could get lost going around the block). He was the one who did the bulk of the repairs or maintenance of our 7-acre property with its two houses and several outbuildings. He planned his own outings and enjoyed both a full social and physical life. But he could no longer take care of a complex schedule, come up with step-by-step plans for new tasks, or deal with budgets adequately. And he couldn’t fake it.
Alzheimer’s is brain failure. In a workshop I took with educator Teepa Snow, these are some of the things I learned happens when the brain fails.
Left temporal lobe:
•vocabulary is first thing lost
•comprehension of speech is next
•speech production next
Right temporal lobe: rhythm — automatic social chit-chat, rhythm of speech
•rhythm —automatic, patients can dance better than they walk
•music— patients can hear sound but can’t interpret it. Too much sound overwhelms them. If they’re having trouble understanding words, sometimes singing to them can help.
Limbic System: Thrive to Survive
Controls: Wake/sleep, bowel/bladder, fights infection, temperature regulation, heart rate, blood pressure, stress response: flight, fright, fight
In response to stress the system: increases strength, turns off pain, turns off frontal cortex = no thought, raises blood pressure, ceases digestion and makes the person hyperalert.
**When a patient resists ‘help’, it’s because the LIMBIC ‘FIGHT OR FLIGHT’ RESPONSE, FROM FEAR HAS KICKED IN.
I still read or watch new information about research that is being done regarding various aspects of the disease with interest, but at some point Bill and I stopped chasing rainbows. What we have come to accept is that Alzheimer’s is a terminal disease, and the very best thing we can do is live our lives the best way possible for whatever time remains. So, until he no longer can, we’ll continue to dance.