I had promised everyone an update a few weeks ago when I replied to some of the comments to the previous post. I realize it is a long time in coming, and do apologize. There have been occasional boughts with depression, frequent bouts with frustration, and days where I don't even want to get out of bed - sometimes I just lay there all day, going through book after book, hoping that if I don't get out of bed, nothing will go wrong today.
First off, I would like to deeply thank everyone (in person, over the phone, or online) who has reached out to me in the last several weeks, has expressed their concern and support, or has just contacted me and asked how I've been and how my father has been. You have no idea how much your actions and words, and compassion, have meant to me in this frightening and terrifying time. Thank you very much. I am not sure where I'd be right now if I didn't know there were people out there who cared, or were pulling for my father in the fight of his life (one, sadly, which he is highly unlikely to win).
Unfortunately, to nobody's surprise (though expecting it doesn't make it hurt or scare me any less), the doctors are about as certain as humanly possible that my father has Alzheimer's disease. Of course, the only definitive diagnosis is with an autopsy, but they're pretty certain, and all the major symptoms are definitely there. As detailed in the previous post, there have been several incidents where dementia has distorted his reality and his actions, and recent signs of memory loss.
Last month, he called me up in tears because he had forgotten his PIN number to his ATM card. He's had the same card, and PIN, since 1997, yet was no longer capable of recalling it. Since then, he has given me all of his vital information, and I've told him if he ever forgets a key number again to call me, and I'll relay it to him. Furthermore, he has sat there and watched entire football games, then later in the evening can't even recall half of what he watched (where in the past he used to recall nearly everything).
Any case of Alzheimer's where the patient is under 65 is considered "early-onset Alzheimer's" (I guess the youngest known case of AD is
30), and progresses much faster and much more violently than late-onset Alzheimer's. Less than 1% of the diagnosed cases of Alzheimer's are early-onset, and almost always caused by defective genes.
I am concerned somewhat over the possible genetic factor. I do sometimes worry if I may also be carrying that defective gene. However, that gene alone does not guarantee Alzheimer's, nor does having the proper gene insure you don't get it. The "Alzheimer's gene" is basically like having promiscious, unprotected sex - such behavior increases your chances of contracting HIV, but does not guarantee you get it (which is why Magic Johnson is HIV positive, and Esther Madge Ritchie is not). Even if tests revealed I carry the same gene, it doesn't mean I'll be struggling with Alzheimer's in 25-30 years.
His doctors have basically told him they expect by the time he's 62, maybe 63 at the latest, he will no longer be capable of working nor taking care of himself. With what his plans are (suicide), I basically am facing the reality that my father will be gone in four years, and there is unlikely anything that anyone can do.
It's watching an inevitible death, and I don't know how to cope with it. And while death is something we all face, it's the how and not the what that is eating at me. As I told Eric a few weeks ago, it would be easier if he just lost control of his car, or died in the plane crash, or just died of old age or something. Those hurt, yes, but nothing like this. It's the horror of sitting there, watching one of the most intelligent people you've ever known being stripped of his memory and his sense of reality, and knowing that nobody can do a thing to stop it.
It isn't just death, but a long death, one that strips away everything that made you who and what you were before it finally claims the body.
I have been reading Thomas DeBaggio's books. DeBaggio had written a few books in the past on herbs and plants (he is/was an "urban farmer" or "backyard farmer" or whatever term you prefer - he made a living by growing herbs and plants in a backyard greenhouse, then selling them to the public). In 1999, just after his 57th birthday, he too was diagnosed with early-onset Alzheimer's, and has since released two books: "Losing My Mind: An Intimate Look At Life With Alzheimer's" in ***2, and "When It Gets Dark: An Enlightened Reflection On Life With Alzheimer's" in 2003. The books are part take a trip back to the past, part what he is dealing with now, and part look toward the future. There is only so much I can do with the scientific knowledge and medical knowledge I have from researching this disease. An insight into what the disease is like first-hand, and what to expect from it, is certainly far more valuable - since I am not a doctor, though I have my father, and his Alzheimer's, in my life.
Adding insult to injury is that he now has Posterior Vitreous Detachment and Macular Degeneration in his right eye also! He says he right eye is already worse than his left, and is becoming increasingly fearful of driving (not to mention going completely blind). PVD in both eyes is incredibly rare. Then again, PVD in people under the age of 65 is also pretty damned rare, so obviously "rare" doesn't mean shit here.
He has an appointment with a specialist on Friday. We're hoping they come up with some better idea of why, and maybe even what to (hopefully) do about this before it's too late.
I'd say this latest development is par for the course this year, but the way the last few months have been for him, he's closer to about 57 over par.
He is handling it better than I am. He is (so far) refusing to feel sorry for himself. He's scared, obviously, and sometimes he wonders if he did something to deserve this, but he's made a decision to do all he can, the best than he can, for as long as he can. He admits sometimes it would be tempting to lay down and die, but he isn't ready for that yet - as he puts it, he knows eventually that time is coming, and it's already someone (or something) else's choice. Where I am not sure I'd say I feel sorry for him (I feel very saddened for him, if that makes sense), there is not a day that goes by where I don't ask "What the fuck did he do to deserve all this!?".
I am a mess at times. Sometimes I am irritable, cranky, and angry at the world in general. I've snapped at more than one person who didn't deserve it (and still feel very guilty for it). There is a great deal of grief (knowing his clock is closing in on zero), sadness (the loss of family, the reality of having neither parent), fear (for him, and what he's battling), and anger (that I am powerless). Sometimes I don't deal well with this emotions. I am so angry or scared or what-have-you over what's happening to him that sometimes it boils into other aspects of my life, such as snapping at Eric for a very stupid misunderstanding. I am sorry, not only to him, but anyone else I have snapped at recently. Furthermore, my father's struggles have reopened old wounds with my mother's death, and I am not coping very well with those either.
What probably isn't helping matters is that the closest thing I have to therapy right now is bowling once a week, and occasionally getting drunk. I know there are people out there thinking I should seek counseling, but that would not be the best way to handle it (due to the "new psychiatry" that has taken over in the last quarter of a century).
The solution to everything seems to be drugs. "Ohh, you're depressed. Have some Prozac." "Hey, here's some Zoloft. It sure works for those stupid bouncing rocks (or whatever they are) in those commercials, it'll work for you too!". I need to deal with what's going on, not try to medicate it "away". Taking some so-called miracle "happy pills" that suppress my emotions won't fix anything, and make it much worse in the long run (and believe me, I know! I've been down this road before.) I need to cope (or at least try to find a way to, as best as I can) with what's going on here now, as well as 17 year old wounds that have never healed properly (and may not). I can't Paxil all this away. I can't Lithium it into the past. It has happened, and IS happening, and if I bury it away, it'll resurface eventually - and be far more dangerous and devistating than the occasional yelling at an innocent person. I need to find a healthy and safe way to vent and deal with all of this, and the corporate wonder drugs won't do that.
Furthermore, I need my wits about me. These drugs do turn me into a zombie, and in a situation where I need to not only have my own memory but function (to a degree) as my father's, I cannot afford to impair my memory with these genetically engineered narcotics.
(I know that sounds funny, after admitting I get drunk on occasion. But there is a difference. When I have several drinks here and there, it is to take a temporary vacation from the overwhelming thoughts and emotions. It is not done with the intention to permanently "escape" them, because I can't afford to do so. It is done as a "I need a few hours to not think about this, or deal with this shit. I need a break. I'll deal with it again tomorrow." Happy pills cause not only a far lengthier break, but impaired memory and reaction time, and that is not an option at this time.)
I fully intend to take another mini-vacation - literally - from all of this next month. Perhaps it's the fact I need to get away from everything for a day, or watching death run it's course that has me thinking of mortality and the desire to do things I've wanted to do before it's too late, but I'm going to do something I've wanted to do for 26 years next month.
On November 16, I am taking a trip to Los Angeles, and with at least one (and hopefully two, if Eric is joining us) of my closest friends, will sit in the audience at stage 33 of CBS's Los Angeles studios.
That's right. After waiting 14 years to be legal age, then putting it off for 12 years (lack of money, not feeling well, being too depressed to drag myself out of the house), I am going to finally attend a taping of The Price Is Right.
It's time. It's time I finally do it. I've watched the show since I was 4. I grew up with Johnny Olson telling contestants to "Come on down!". I still remember when Bob's hair was black, he was a young 55 years old, and they were still playing It's Optional and Hurdles.
And, we don't know how much longer Bob himself will be around. He'll turn 82 in December, he's had health problems (heart surgery, skin cancer, and rumors he's had at least one stroke). His contract also expires after this season, and we don't know if this will finally be the time that the grandfather/game show host/activist drops one of the three and passes on his microphone to a new host (or, worse, ends his career the way Harry Caray and Chick Hearn did by just moving on to that big game show in the sky).
And maybe the timing will be right. I mean, after all, the taping will be the day after Esther Madge releases her new album, Confessions On A Dancefloor. And if anyone out there hasn't heard "Hung Up" yet, I suggest you do so. If this song is any sign of the album to come, the Material Girl is back in peak form, and ready to erase the disaster of American Life - if I do say so myself. Boy, that sounds conceited. But, hell, I must live up to my name...
There's also an 888 number (888-2-CONFESS) to call in and "confess" something in a recorded message. Sometimes I become tempted to call and say "Hey, Esther, I confess that I'm impersonating you online!", but then don't know whether she'd laugh her ass off, or show up to kick my ass. Would that also mean I'm confessing to myself? And if we fought, that I'd be kicking my own ass? And if we ever met, talk about talking to yourself...
Maybe I am really losing it.
Anyway, I'll close this by again thanking everyone out there who has kept my father and I in your thoughts and/or prayers, who has expressed your concern and compassion, shared your good wishes, or have been checking up on me. Thank you. You have no idea how much I love all of you.
Labels: Barker Worship, Camp Barker, Madge Worship, Mi Vida Loca, That's What Friends Are For
