Culture and Alzheimer’s


IMG_0007I’ve been involved in a fascinating give and take over an insane article about Alzheimer’s Disease.

Amazing how our culture has NOT changed. We’re still expendable. It’s worse if you’re single – the forgotten servants of the family. You withdraw from the world, to care for the parents, and then the world forgets you even exist. I’ve spent 10 months doing nothing but sleep and trying to recover. My hair is falling out. I’m still exhausted. My sister doesn’t understand. It nearly killed our mother. She’s been at my sister’s trying to recover – and doing incredibly well. If you did not know my circumstances, you’d say I’m showing signs of classic depression. It is simply mental and physical exhaustion. I’ve been dealing with their health problems since 2005. I would jump at every phone call. The last year or so, I was spending at least 3-4 nights at their house, not sleeping.

Fortunately, I’m a writer, but still, I can’t afford the repairs on my MacBook Pro, so am using my Air. Can’t do the edits need to do for publication. Am too mentally exhausted to do the edits on a major book about fashion history. it’s just sitting there. I can’t afford the gas to drive the 150 mile round trip to even consider repairs. I’m in financial ruins.

People don’t get it. The real toll of AD is what happens to the care-givers. Fortunately, my father was a doll. He was mellow, funny, and did hilariously naughty things to annoy my mother. We still don’t know where he hid her diamond wedding band.

I traded an antique oak desk to a neighbor to be on call to come unstop his toilet. He would stash his newspaper in the toilet. That was the worst. We did not have the nightmares. I learned, within a year of his diagnosis, that we could tank him up on caffeine and sugar and he was fantastic.

One of the most promising treatments seems to be caffeine injections which are going directly into the brains of lab mice. It is repairing the AD damage.  What Hillary Clinton, and her proposal for a rush for a cure, gets right, is how financially draining it is on families. Trust me, I know.  It is draining, emotionally, physically, and financially.  It destroys care-givers.  Trust me, I know that, too.  It  has taken my mother and I over a year to recover.

The secret to the cure or treatment for AD is in nutrition, supplements, and catching it early.  I told someone the other day that there are things in this world worse than Alzheimer’s Disease.  We fear AD so much, that we fail to recognize the onset of the disease.  I swear, having been through it, the worst part is not knowing, and the damage done before we do know.  We can go back at least 15 years, tracking the gradual onset of the disease.   If we had known, we could have stopped the financial bleeding.  We could have started B-12 injections earlier.

B-12 injections, every 3 weeks, are critical.  If we hand known….

I do not think AD is epidemic.  I think it is connected to PTSD, brain injuries, and most critically Lyme Disease.  You factor those things out, and we’re not dealing with an epidemic.  Where it is frightening is when it is genetic.

Alzheimer’s Disease ruins lives, and not just the life of the person who has it.  The so-called Alzheimer’s associations are a total and complete joke. They vacuum up money which is needed by families.  They offer no dignity or actual assistance, only stupid and pithy suggestions which have nothing to do with reality.  We’re now taught to hid the person who has AD.  That was the worst thing the Reagan family did, was hiding the former president, like having AD was something to be ashamed of, and not a natural part of life.  Maybe, if the medical profession, as well as the AD ‘profession’ would start treating people who are suffering from the disease as viable human beings we would all benefit.

Oh, and there is a possible cure.  It is being used in Colorado.  I know about it, because I know someone who runs a day center for people with AD.  I was told you can always spot someone who is taking hard candy made from medical marijuana.  It is almost akin to a cure.  It is better than all the other medications.  I only wish we had had it available for my father, early in the battle.

The best thing to do if a loved one has AD?  Move to Colorado, put them on hard candy medical marijuana and B-12 injunctions every 3 weeks.