My mom has Alzheimer's Disease (AD). She's had it for some time now (a few years, at least, but I don't know exactly *how* the onset of the disease occurs, so *when* it started for her, I can't be sure) but the official diagnosis was delivered this past June (June '10). I was there when the doctor told her (and my dad and me) his conclusions. Before I get into the purpose of this blog, I need to go back a little and give some history.
My mom worked for 19 years in the public education system -- that was her last job before she retired in December 2005. She had a few other jobs that I know of... beginning in public education just as she finished. She received a college degree in education and taught kindergarten, though I don't know for sure how long she did that. Later, she stayed home to raise kids, worked in retail for a while, substituted and probably did some other things I don't know about. She started working in the school system again (as a staff member, rather than faculty) in the spring of 1986.
Fast forward to Fall, 2005. Mom has two sons-in-law, ten grand-kids and has decided she's ready to retire. She started the school year the same as every year for almost two decades before but let the administration know, early on, that she'd be retiring for good as of Christmas.
I remember having several conversations with my little sister about mom's impending retirement and we both wondered what she'd 'do' -- not that she couldn't keep herself busy but we both were a little concerned that she *wouldn't*. When she started the job, three of her four kids were still at home -- ages 5, 13 and 18 (<-- That's me in the middle there... 'lucky' 13). Now (2005), her 'baby' -- the aforementioned little sis -- was 24 and pregnant with her second child.
It was that very winter, when mom retired, that little sis mentioned for the first time (to me, anyway) that she had noticed mom having some memory lapses -- NOT the kind that just come with 'getting older'. I didn't see it. I'm just being honest although, even then, I put a lot of value in my sister's thoughts... especially on this subject. She had worked with (at least) dozens of AD patients by then -- both in home health and in nursing homes, including work in a lock-down Alzheimer's unit. She knew this condition better than anyone else I knew (or know) personally and I absolutely believed her. I didn't know what to do about it, though. It certainly wasn't 'obvious' to the untrained eye. Mom has always been good at presenting a 'public face' that was charming, intelligent... you get the idea. She was very skilled at hiding whatever difficulties she might have been experiencing. She still tries, bless her heart, even now although she loses so much of the conversations she has with anyone that it's just patently obvious... to EVERYONE... in any/every context.
I guess it was about the following summer (2006) when I started to see the lapses myself, though I didn't think they were very serious at the time. It was another year before anyone else admitted (in my presence) that something "might be wrong". On December 2, 2007, I watched a movie on TV (Hallmark movie, not sure what channel) called "Pictures of Hollis Woods". As the movie went on, I found myself sobbing and sobbing at the portrayal of a woman with Alzheimer's Disease was so eerily similar to my mom's own behavior. It was strange to me how 'obvious' it seemed in the movie while my mother was doing most of the exact same things every day. At the end of the movie, there was a short PSA about Alzheimer's Disease and a website to visit for a list of "top ten signs" of the disease and how they are different from 'normal' memory issues -- at any age. I went to the site and was just *stunned* by what I read. You see, one of my mom's favorite 'dodges' about there being anything really wrong with her memory is the "that's what happens when you got older" line... but there was a HUGE distinction between what the research has shown is 'normal' memory lapses and what she was doing -- every single day. Her memory issues were NOT normal. I read the list over and over. On that day, in December 2007, she was ten-out-of-ten on the list of 'warning signs' for Alzheimer's Disease. I was disturbed enough to call the Alzheimer's Association right then. I spoke to someone who transferred me to someone else. They gave me the number for the Utah chapter. By that time it was almost 11:00 p.m. so I took down the information and 'sat on it' for a couple of days. When I finally did call, I felt both relief and panic -- relief because it was nice to talk to someone who understood, who made some great suggestions and who seemed to genuinely care; panic because our conversation only supported my feelings/fears that this disease was taking hold of my mother... I was scared. I was certain my dad would dismiss/ignore my concerns, so I talked to my sister again and we both talked to him. I wish I could tell you I was wrong... I wasn't. He wouldn't hear any of it. He was mad. (He still gets mad, to this day, when the subject comes up... despite all that he's been told -- by the EXPERTS in the field. He still refuses to accept the diagnosis.) For the time being we were shut down -- any attempt at discussing it was immediately stone-walled.
Somewhere in there -- and here's where I'm wishing I'd started this blog, or at least started writing this stuff down somewhere -- one of mom's doctors prescribed a well-known AD drug for her; one with well-documented side effects that are *more common* among patients who weigh less than 110 lbs. Mom definitely fits into that group. She claims (and has for years) that she weighs between 105-112 lbs but I believe it's more like 95-100 at the very most. I'm not sure if this doctor TOLD her why it was being prescribed but (I know this doctor personally) I am *guessing* -- please note: this is just a GUESS on my part -- that said doctor probably sugar-coated it with something like, "This could help keep your memory sharp" or something to that effect. I'm pretty sure this doctor would not be honest, or perhaps direct, enough about it to have made an impression on either of my parents... *sigh*
To nobody's surprise but hers (and dad's -- he claims "no one ever told us" about the side effects, even though they are PRINTED ON THE LABEL of the drugs which he (dad) showed me) she suffered horribly from the listed side effects, namely nausea, stomach pain/cramping, and vomiting. She suffered this way for almost two years -- all the while taking the AD meds and lying in bed, miserable, while dad wrung his hands about the 'mystery illness' that was decimating his wife and taking her to doctor after doctor, none of whom (dad says) ever told them that the AD drugs might be to blame. When someone finally DID tell them, or get it across plainly enough, she stopped taking them and 'miraculously' the horrible illness disappeared.
Sadly, that was when the sharpest decline in her mental functioning really started. That was about 9-10 months ago, to the best of my memory. Around that same time, one of the doctors they saw referred her to the University of Utah Health Care's Center for Alzheimer's Care, Imaging and Research. [A quick search on the center will show you that they are among the leading facilities of their kind in the country -- far and away the best that is geographically available to my mother.] Despite her repeated objections, dad persuaded her to go through the full course of testing -- extremely thorough -- that they offered. I believe, and he said as much in several conversations we had, that dad fully expected for the neurologist she saw to support HIS (DAD's) position that her memory was perfectly normal. On at least several occasions when I brought up the subject of getting help for mom (which I did pretty often) he would stop me with "I'm not going to discuss this until we get answers from the doctor". I'm sure he felt he would be able to 'shut down' any further discussion on the matter once the doctor concluded (as dad believed he would) that mom was "just fine".
One of the most frustrating things about this whole situation is how adamantly dad was insisting that we wait for the neurologist's assessment before we had any more discussions about mom's health/memory and then, when the diagnosis was POSITIVE -- yes, she does have Alzheimer's Disease -- how quickly he turned to REJECTING the doctor's conclusions. *sigh* This is not only frustrating because he is disregarding a valid, expert medical determination regarding my mom's health and well-being but because, due to his complete refusal to face the reality of her situation, she is getting NO TREATMENT whatsoever. Her condition deteriorates every day and he just stubbornly refuses to 'see' it. He lies to 'protect' her from the truth of what's happening and he meets any expressed concern for her with anger and denial.
So, there's the dark reality of the situation. That is what's happening every day in my mom's (ever-shortening) life. He won't talk to anyone who has expertise in the area of Alzheimer's Disease. He won't listen to the facts of what it means for the patient's health, well-being, or even LIFE EXPECTANCY. He seems to believe that I have some sinister motivation... that I want to 'hurt' my mom (or him). I don't. I want her to get help. I want her to get treatment. I want her to LIVE -- as well, safely and happily as possible, for AS LONG AS POSSIBLE. I believe that's what she would want if she could fully understand the situation. I don't know if that's true... but it's what I believe. My siblings and I have all talked about it. They (I wasn't able to participate but I had planned to, initially) even held an 'intervention' of sorts to try to express our joint concern for mom's well-being, our willingness to help and some suggestions for her/them to consider. THAT went over like a... well, it was bad. One of my sister's told me that she'd NEVER seen a reaction like that from our mom before. (Frankly, that surprised me because I've seen that anger/bitterness at least monthly, and recently more like weekly, for quite a while now. It's random, it happens... it's part of the disease.)
Wow -- so, this post has been a lot longer than I thought it would be. At the beginning, I mentioned I'd say more about the purpose of this blog, so here goes. Since that 'attempted intervention', none of my siblings has said anything more (at least to me) on the subject of getting help for/helping mom. I'm feeling a little lost and stuck. Dad still rejects the whole thing and won't talk about it. Mom, it seems, still doesn't KNOW there's anything to discuss... she is aware that she forgets things but she still makes her standard excuses and she doesn't have any idea how obvious it is... or that it's not 'normal' aging.
As for the purpose of this blog -- I need to document what's going on. I need it for my own sanity and clarity. I need it because I don't have anyone to talk to about this... at all. I need to vent. I need to keep a record of my observations. I need to be able to look back and 'watch' the progression of things as I write about them.
Not too long ago, dad confronted me for 'examples' of mom's memory problems. Seriously? He sees dozens of examples every day. In fact, he probably sees (though he definitely doesn't acknowledge) more of it than anyone. I listed a couple that sprang to mind... he rejected (of course... why did I expect otherwise?). I KNEW there were a hundred more examples I could have given him if I'd bothered to make a note at the time... I hadn't. That's what I'm doing now. When (if) it ever comes up again, I'll have PLENTY of examples to give him. The WHO (who else saw what I saw), the WHAT (precisely what did she do/say that was memory-loss related), WHEN and WHERE. So, there it is. I'm documenting. I'm venting. I'm self-soothing. As angry/dark as this post has probably been (that's the feeling I have right now) I actually expect that a lot of the things I write here will be pretty funny -- because a lot of it IS funny... every day. There are some real head-scratchers for the writing here... I have written a few of them down on paper... somewhere. I'll probably add some of those here as I find them.
The sad truth is, though, she's not getting any help. She's not getting any treatment or care at all. That's not to say that my dad doesn't "take care" of her... he does, in his way. But he just won't accept that she has Alzheimer's Disease. He refuses to acknowledge ANY change in her memory or behavior. He doesn't believe it will cause her any harm to just 'ignore' what little things he CAN'T excuse away and he doesn't believe that THIS WILL ULTIMATELY TAKE HER LIFE. That's the part that I can't swallow. That's the part that makes me so angry I want to scream... she's going to be gone -- TOO SOON -- because nobody's doing anything to prevent it.
Okay. I'm done.
No comments:
Post a Comment