Monday, September 30, 2013
Autumn again. Fall in California is the time of hot offshore winds, the Santanas (or as we locals persist in calling them, Santa Anas). They haven’t set in yet, but they will. The year is playing out its final act. Leaves are yellowing, farmer’s markets stacked high with red and yellow tomatoes, fall peaches, plums, pears. We used to love this time, Pat and I. Going to open studio tours, bicycling in town, driving up the coast with the turquoise glass sea on our left.
This week, Pat’s in a geriatric psychiatry hospital in Newport Beach, having his medications adjusted. He’s exhibiting major neurological side effects from the anti-psychotics he’s been taking over the past 15 months to control agitation. A sideways stooped posture, an inability to judge distance and the height or depth of surfaces he’s trying to walk across, tiny shuffling footsteps, a complete loss of comprehensible language, an inability to swallow his saliva. Chris and I drove him down to Orange County. He did better than I expected in the car, sitting patiently for four hours. He still likes to go places and notices more than I realize.
Pat grew up in Corona Del Mar, on the edge of Newport Beach. He learned to swim at Carnation Cove, sailed to Balboa Island in the small skiff his dad gave him when he was 10 and surfed up and down the Orange County coast as a teenager. He married his first wife there and it’s where Chris was born. The place used to overflow with memories for him.On the drive down to the hospital, I reminded him every 45 minutes that we were going to Newport. When we got there, I said, “Hey, Pat. We’re in your home town!” He didn’t seem to respond.
Then, as we drove down 16th Avenue to the hospital, he said “School, school.” I had no idea what he was referring to and couldn’t see any buildings that looked academic from my side of the car. Inside the hospital, the very kind activities director, Kaj, engaged Pat. When Chris told him that Pat was from the area, he asked where he went to high school.
“Harbor High and Corona Del Mar,” I answered for him.
Kaj said, “Harbor’s right next door. You drove past it on your way here.” Pat had recognized his old high school. I was floored.
It's these brief breakthroughs that disorient caregivers. When we think that memory and recognition are completely lost, they suddenly pop up, intact. As if our beloved is on the far end of a static-filled long-distance connection that momentarily normalizes. Out of the garbled nonsense words or the silence, the person we love emerges as if he or she had been there all along, waiting. These moments keep us hopeful that a change in medications, in diet, in supplements or therapies can clear the line a little more. But that hope, being as Emily Dickinson wrote, “the thing with feathers,” mostly flutters away.
Today, I’m offering a short quiz. If you’re a caregiver, you already know the answers. At least, I hope you do. If you hate quizzes, bear with me.
1. How many drugs are there that cure Alzheimer’s and other dementias?
2. How many drugs are there that help slow the progress of the disease for some people with dementia?
3. When did the last completely new Alzheimer's drug to be successfully released in the US enter clinical trials?
4. Has there ever been a drug released that specifically targets non-Alzheimer’s dementias?
5. How many drugs are used to suppress or control difficult behaviors of people with dementia?
6. What percent of anti-psychotics administered to dementia patients are being used off-label?
7. What percentage of these have black box warnings indicating that they may cause sudden death in the elderly?
8. How many people in the US suffer from some form of dementia?
9. How much Federal money goes into dementia treatment research?
10. By how much is the population of Americans with dementia expected to grow by mid-century?
11. How much does dementia costs the economy each year in lost wages and tax revenue, Medicare/Medicaid and unpaid labor?
2. There are three. Depending on the individual patient, maybe two will work. Maybe none.
3. 1989. Twenty-four years ago.
5. Scores of them, mostly anti-psychotics and anti-depressants.
7. 100%. The FDA warning clearly states that anti-psychotics are not for use in elderly demented patients. But they're given to this population all the time.
8. 5.2 million and counting, twice the number of people who have or have had breast cancer.
9. Currently, $54 million, or roughly $11 per patient per year. The President's budget for 2014 proposed $100 million. The House has cut this back to $45 million, or $9 per patient. (Less than half of the $202 million slated for breast cancer research. I'm not saying breast cancer should have less, just that dementia research must have more, and quickly. Seventy-two million of us are in or entering the high-risk age bracket for this disease.)
10. Six hundred percent--600%.
11. $202 billion. (I keep harping on this number because it's so extreme)
This is the world-o’-medicine that dementia patients and their caregivers contend with. If there were an epidemic contagious disease that cost the economy over $200 billion a year, NIH would be all over it, Congress would be passing research funding appropriations right and left and the press would be building public fear to a fever pitch. Or if the disease impacted people’s sexuality. In the last twenty years, more drugs have entered the marketplace to treat erectile dysfunction than to treat Alzheimer’s. Far more.
This pharmaceutical reality leaves family caregivers grasping for straws. Or maybe lifesavers. Alternative therapies are out there—amino acids like acetyl-l-carnitine and phosphatidylserine; massive daily doses of coconut oil; organic foods; chelation therapy, marijuana, high doses of EFAs. We’ve tried some of them. Chelation actually helped, but I couldn’t get Pat to take the huge regimen of pills for more than one six-week round and he couldn’t handle IV chelation. Coconut oil also seemed to help, but as Dr. Mary Newport notes in her book Alzheimer's: What if There Was a Cure?, people in late stage who use it may revert to an earlier more agitated stage, which is what happened with Pat. The up side was that his speech improved a little.
My advice from our late-stage vantage point is to work with your spouse as early in the disease as possible to explore all the alternative therapies, especially coconut oil and chelation and whatever supplements he/she can willingly ingest. But don't knock yourself out trying if your beloved isn't willing. Do what you can--coconut oil 50/50 with butter, for instance. Coconut almond cookies (I'll share the recipe when I get my kitchen unpacked). Or the helpful amino acids in powder form, blended in a smoothie. I do believe that we gave Pat an extra year of fairly good cognition by trying alternatives. I wish I had done more.
All caregivers could repeat that as their personal mantra. I wish I had done more. Please don’t go there. We have almost no human guidance through this wilderness and whatever helpful thing we do is more. Whatever individual researchers can do, struggling to get grants and pharmaceutical company backing, is more. Whatever foundations, international associations, governments and the World Health Organization can do is more.
We do need to keep our heads up and raise our voices, like the AIDS Act Up people did, like the pink ribbon breast cancer people did. Or if you’re too tired from caregiving to do any of that, just tell yourself that others will do the “more” you can’t do. And if you can, say a prayer, go on a Memory Walk to raise funds for the Alzheimer’s Association, write one letter to your Congressperson.
You’ve done your part.
Next time: Why not anti-psychotics?