My Sister and I just had a long conversation...another long conversation, concerning our father who has Alzheimers. It wasn't pleasant. He started down this path about 12 years ago, maybe more. He currently is capable of dressing himself, and knowing when he needs to go to the restroom, he knows he enjoys a bourbon and soda on a Sunday afternoon when we pick him up and bring him home for a few hours from the hell, AKA Memory Care Facility, that he spends most of his time in. He usually doesn't recognize us, and when we think he does, he probably doesn't. He's a real good faker.
I love the man, don't get me wrong...but he knows how to fake it when he's unsure. He had that skill when he was 40, and it's one of the few skills he has retained at the age of 85 yrs. He can still laugh at a joke, but he can't tell one. He can barely string 4 words together. For all intents and purposes, he's unable to communicate. Unless you are driving him to a doctor's appointment, at which time he waxes lucid for the duration of the trip, warning you of every red light, every tail light, every lane change, all of the traffic...and basically admonishing you every minute of the trip to slow down and be more carefull.
There have been times, trust me, when 10 minutes of this makes me want to press the petal to metal and swerve into the oncoming lane, swerving through the cars like some Hollywood movie chase scene.
Anyway, back to the conversation between my Sister and I. I told her, after haggling about how much medicare care my Dad requires, that if I ever slip into this disease, I strictly forbid her, my wife, or abyone else who is around and cares about me, from lifting a finger to slow the disease down. I told her that we both know damned well where the disease takes you, and it's not a trip a care to take at 45 MPH if I can take it at 85 MPH instead. The scenery isn't that much different. I said I don't want Excelon, Aracept, Namenda...none of that. Nor do I want to be taken to a doctor for any reason. If I'm on Death Row, I'd rather the wait be shorter than longer...cause I don't think being alive is the same as Life.
We failed to come to an understanding.
I sucks having a parent with Alzheimers. I can't imagine what it would be like if our Mom also had it. How does one double unbearable?
My Dad is, other than his advanced stage of dementia, in pretty good health. He had bladder cancer about 15 years ago, and prostrate cancer as well. Both were treated. A left over from his prostate cancer treatment is a sort of dribble, dribble incontinence, that he has been dealing with for almost as long as the first symptoms of his Alzheimers were noticed by my Sister and I. That, of course, is still a constant. He must wear Depends, and change them at least three times a day.
When he had his bladder cancer, and subsequent surgery, he was sent home with a catheter, and convalesced in a largely sedentary manner in rural South Carolina, just hanging out in a Lazyboy recliner most of the day watching TV and reading the paper. My Sister and I were both living on the West Coast at the time, and were not involved in his care during this convalescence. His lack of moving around contributed to a blood clot, which lodged in his lung...a pulmonary embolism. That's a serious medical condition, and I'm no doctor, but it was caused by pretty specific conditions: post surgery, lack of movement, sedentary convalasence. He was prescribed a blood thinner in the aftermath of that episode...warfarin.
That was 15 years ago.
Part of the warfarin regimen requires periodic trips to the doctor for a blood test to see were his blood registers. For most of the past 4 years, after we moved my Dad out to Oregon, that was every 4 weeks. He was so stable that the doc stretched it out to every 5 weeks. I could have kissed his feet. Cause that was just one doctor trip. Then there was the urologist, who insisted upon seeing him every 3 months, and who ran on schedule with the same regularity as Haley's comet. For 3 years I took my Dad to the Urologist every 3 months so he could take out his instruments that surely must date back to the Spanish Inquisition and literally ream his urethra...just to "keep it open and unconstricted." The last time I took him there the urologist suggested I give my Dad a Vicadin an hour prior to the appointment next time, "because he seems to expreience anxiety during the procedure."
Fucking A, I told him....it causes me anxiety just thinking about it. Mind if I take one too? How about a script?
When we first decided my Dad was losing it, and sliding into Alzheimers, it was 1999. He was living in Ohio, and we both flew back there to talk to him about it, and we scheduled an appointment with a neurologist. It was he who prescribed the Aracept, atfirst, and later the Namenda and Excelon regimen. It remember as if it were yesterday the conversation we had with him, because the drugs weren't cheap: Do they work???
Ehhh...he shrugged...we really don't know for sure, but they seem to slow it down with some people, and in any case they don't hurt. That sort of throws the ball, so to speak, in your own moral court, doesn't it? So we got him on the drugs. And at that time, while his short term memory was definitely impaired, he was self aware, and knew who everyone was. He just couldn't remember things that had happened two weeks ago, or how to drive to the airport any longer.
Now....flash forward 13 years.
My Dad is a hollow shell of the person he was a decade ago. He has lost almost every memory that was once deeply ingrained in his consciousness. He can't recognize photos of his parents. He doesn't even really recognize my sister and I. Even though they were divorced long ago, our mother lives close by and she's almost always part of our get togethers with Dad. Married 25 years, two kids together...he doesn't know her from Jack. Or would that be Jill?
To me, that isn't living. And if it were me, and I knew what was in store, I'd put a gun to my head. That's not melodrama. I can't imagine that my Dad had any more desire to end up this way than I do. He was always so independent, and always so reluctant to ask anyone for help...proud.
That was the crux of the conversation I had with my sister, and while it never became a heated conversation, there was undeniably a chasm between the two of us with respect to how best to deal with our Father's medical "needs."
My position was that "medical needs" were defined by medical emergencies. Her position is that "medical needs" are defined by prudent intervention and upkeep. So...she subscribed to a regimen of repeated, frequent medical appointments with doctors with whom our Father cannot communicate about complaints that he does not have, but for which they are only too glad to see him and bill his insurance company, and him for whatever portion they don't cover. He walks away the same as he was before entering.
It ended with us getting a little tense, but not angry or judgemental, at which point I told her...Linda...if this ever happens to me I want you to promise me right now that you won't string this purgatory out. I don't want any drugs, and I don't want any care. I just want it to run it's course as quickly as possible...because you can't tell me that the life our Dad is living is anything remotely similar to what you or I would want to spend the rest of our lives enduring.
What do you Want From Life?