Yesterday afternoon, we went to Sacramento for the second PET scan at UC Davis Medical Center. Why UC Davis Medical Center is in Sacramento instead of Davis is anybody's guess, and it's confusing for my husband. As we drive past Davis on the way to Sacramento, he always wonders why we aren't taking the freeway exit to the university.
I'm pleased to report that it all went very well. We've completed both PET scans and an MRI, and now we get to take a breather until next month. We are hoping that somewhere down the road, someone will benefit from all of this. Researchers are working so very diligently to identify markers, a gene, something on which they can concentrate preventive care. And, who knows? A cure later could be the result of a breakthrough today.
As stressed as I felt in my last post, it's truly amazing what a good week we've had. I am so thankful for rest, for encouragement, and for the prayers that I know are holding us both up. I am believing that this evil report regarding my husband's health will be completely overridden and invalidated by a miracle. That is my hope.
Friday, May 11, 2012
Thursday, April 19, 2012
The Diary
"Keep a diary," the fact sheet says. It's supposed to relieve stress and keep things in perspective. The only problem is, I find myself simply incapable of sitting down here at my trusty computer and reliving the anxieties of my day. To put them "on paper" is to acknowledge them. To acknowledge them is to surrender to the diagnosis. Oh, I know that isn't truth, but it doesn't matter. It feels true right now. And that's why you're not hearing much from me.
I suppose this means I am still in the "denial" phase of my mourning. But I'm not. Not really. The fact is, I am about 1/4 inch from tears at any given moment as I try to wrap my head around what tomorrow might be like. And the day after that. I suppose it isn't good to dwell on the future, but how else am I supposed to plan? And the fact sheet says I'm supposed to plan.
So, I've told my kids that the study center wants his brain when he's done with it, so it can be studied. And I think of Henrietta Lacks and the HeLa cancer cell research. They've assured me that it's just going to be an autopsy, and they don't plan to do any ongoing research with the brain cells. But what if they do? Will his brain still be around long after I'm gone? I hope the research they are doing will help someone. I really do. Because answering the questionnaires on Tuesday was just about all I could do. I admit it: I broke down.
You would, too, if they asked you to compare your loved one's capabilities now with his or her capabilities ten years ago. Ten years ago, everything was just fine. Ten years ago, the future was bright and shiny. Ten years ago, he was working as a middle manager for a huge corporation and directing the work of others. Ten years ago, he was...himself. Maybe the future questionnaires will be easier to handle, because they'll compare last month to this month, and the changes will be incremental rather than dramatic. I hope so.
Oh! I used that word. Hope. Yes, I do still hope. And I hope I can continue to do so. For all our sakes.
I suppose this means I am still in the "denial" phase of my mourning. But I'm not. Not really. The fact is, I am about 1/4 inch from tears at any given moment as I try to wrap my head around what tomorrow might be like. And the day after that. I suppose it isn't good to dwell on the future, but how else am I supposed to plan? And the fact sheet says I'm supposed to plan.
So, I've told my kids that the study center wants his brain when he's done with it, so it can be studied. And I think of Henrietta Lacks and the HeLa cancer cell research. They've assured me that it's just going to be an autopsy, and they don't plan to do any ongoing research with the brain cells. But what if they do? Will his brain still be around long after I'm gone? I hope the research they are doing will help someone. I really do. Because answering the questionnaires on Tuesday was just about all I could do. I admit it: I broke down.
You would, too, if they asked you to compare your loved one's capabilities now with his or her capabilities ten years ago. Ten years ago, everything was just fine. Ten years ago, the future was bright and shiny. Ten years ago, he was working as a middle manager for a huge corporation and directing the work of others. Ten years ago, he was...himself. Maybe the future questionnaires will be easier to handle, because they'll compare last month to this month, and the changes will be incremental rather than dramatic. I hope so.
Oh! I used that word. Hope. Yes, I do still hope. And I hope I can continue to do so. For all our sakes.
Wednesday, March 21, 2012
The Study @ UC Davis
We heard about a study done by UC Davis that is tracking Alzheimer's patients over a 5-year period in an effort to follow the progression of the disease. There are lots of PET scans and MRI's and cognitive tests and so forth involved, and it looks as though my husband has been selected for the study.
We know there's nothing in it for us, necessarily, except that feel-good feeling that you get when you help other people. But, who knows? Hopefully, they'll find out something that's key to discovering a cure for this terrible mess of a disease.
Yesterday, they started all the preliminary stuff. Blood work, baseline this and that and the other, interview him, interview me, compare the interviews. Let's just say it was fairly dismal and bleak.
Psychologically, in fact, it was very stressful for me. I think this is because I'm being forced to face the music, so to speak. I don't think I've been in denial (not just a river in Egypt) at all, but I do expect a miracle. Just because nobody else does, doesn't mean I can't. Or shouldn't. Right?
I believe in miracles. I believe in hope. I don't believe in accepting something just because everybody else thinks I really ought to, or because the odds are extremely unfavorable. My mom used to tell me that I always do things the hard way and am very bull headed. Well, I guess this is one instance where that'll be a good thing.
We know there's nothing in it for us, necessarily, except that feel-good feeling that you get when you help other people. But, who knows? Hopefully, they'll find out something that's key to discovering a cure for this terrible mess of a disease.
Yesterday, they started all the preliminary stuff. Blood work, baseline this and that and the other, interview him, interview me, compare the interviews. Let's just say it was fairly dismal and bleak.
Psychologically, in fact, it was very stressful for me. I think this is because I'm being forced to face the music, so to speak. I don't think I've been in denial (not just a river in Egypt) at all, but I do expect a miracle. Just because nobody else does, doesn't mean I can't. Or shouldn't. Right?
I believe in miracles. I believe in hope. I don't believe in accepting something just because everybody else thinks I really ought to, or because the odds are extremely unfavorable. My mom used to tell me that I always do things the hard way and am very bull headed. Well, I guess this is one instance where that'll be a good thing.
Sunday, February 26, 2012
The Blues
The Blues
Caregivers all over the world: Unite! Okay, whatever. Some days, the best you can do is try really hard to not think about how things could have been "if only." And this is one of those days. Bittersweet memories. Dreams dashed. A bleak outlook. The blues. So very close to despair.
Which reminds me of my favorite line from "Anne of Green Gables": Says Anne (who has a flair for the dramatic), "I'm in the depths of despair. Don't you ever despair, Marilla?" Replies Marilla as she hurries up the stairs, "No, I do not. To despair is to turn your back on God."
Today, the pastor spoke about how God does not distance Himself from us; rather, our deception leads to performance that is never good enough, which leaves us trying to hide ourselves from God (good luck with that). We turn our backs on God; He never turns his backs on us. And so, I will not despair. I choose to hope. He has always been there for me, and He always will be.
Which reminds me of my favorite line from "Anne of Green Gables": Says Anne (who has a flair for the dramatic), "I'm in the depths of despair. Don't you ever despair, Marilla?" Replies Marilla as she hurries up the stairs, "No, I do not. To despair is to turn your back on God."
Today, the pastor spoke about how God does not distance Himself from us; rather, our deception leads to performance that is never good enough, which leaves us trying to hide ourselves from God (good luck with that). We turn our backs on God; He never turns his backs on us. And so, I will not despair. I choose to hope. He has always been there for me, and He always will be.
Tuesday, February 7, 2012
The Support Group
Today, I dropped my husband off at the VA Clinic for his weekly memory loss support group. He's been attending this for over a year, each Tuesday. He likes to complain about having to go, and who hogs the conversation, and who is too loud, and who always arrives late...but he won't miss it if he can help it. He doesn't think it's really helping him so much, but it's "good for the others" to have someplace where they can meet and discuss their various issues. Some have memory loss due to disease, some due to accidents, some due to stroke or hemorrhage. But the camaraderie is valuable. It helps to know you're not the only one.
And so, today, we had our first meeting for caregivers. Just the caregivers of these particular patients, just so we can keep it real and keep it "in the family." We're going to meet once a month.
There's a Starbucks nearby, and we set up our little group at a small table. We will get bigger, I'm sure, but three is a great place to start. We shared our stories...the story of discovery, and the story of the event, and the story of the trauma. And, even though our guys (It's only ladies in "our group" so far) are each suffering from different things, there's much to share and much to have in common.
I'm looking forward to walking alongside these ladies as they walk alongside their husbands. I'm proud to know them and to be able to be in their company. They are amazing, strong, resilient women.
And so, today, we had our first meeting for caregivers. Just the caregivers of these particular patients, just so we can keep it real and keep it "in the family." We're going to meet once a month.
There's a Starbucks nearby, and we set up our little group at a small table. We will get bigger, I'm sure, but three is a great place to start. We shared our stories...the story of discovery, and the story of the event, and the story of the trauma. And, even though our guys (It's only ladies in "our group" so far) are each suffering from different things, there's much to share and much to have in common.
I'm looking forward to walking alongside these ladies as they walk alongside their husbands. I'm proud to know them and to be able to be in their company. They are amazing, strong, resilient women.
Monday, December 5, 2011
The Discovery
Four years ago, my husband lost his job. They said it was due to cut-backs, but the fact is that he wasn't performing in his high-pressure, hi-tech management position the way he always had. The stress was getting to him, for sure, and it looked like burn-out. But it was more than that. We just didn't see it at the time.
The economy having done a nose-dive, it wasn't the easiest thing in the world for someone in his age group (59 at the time) to find a comparable position. Let's face it: No matter how good you are, it's cheaper to hire a younger person. A year later, he was hired back at the same company for a one-month temporary assignment. We were so excited!
But though the position only encompassed a small percentage of what his previous position had entailed, he found that he wasn't getting enough help and wasn't getting enough training. And wasn't able to "catch on." It was frustrating and humiliating. But I need to say this: Thank you, manager who realized that the person in front of you didn't match the description. Thank you for noticing that something wasn't right. Thank you for suggesting a check-up. Thank you!
About a year and a half ago, after a year of testing and retesting, the neurologist decided there was enough evidence to point to an "early-onset Alzheimer's" diagnosis for my husband. As you can imagine, that day was traumatic. I'm still not convinced that there hasn't been a mistake. Denial. Not just a river in Egypt, as they say.
He was glad to be able to put a name on what was happening to him, but I...well, I think it's safe to say that I freaked out internally. I didn't want to burst into tears and become hysterical, but the doctor's words caused my eyes to mist over and my breath to catch. And then the breathing sped up as I struggled to control my emotions. The room seemed to recede, and my head tingled. My heart raced wildly. I thought I might be about to faint. This was hard enough on my husband already. I didn't want him to witness a meltdown in me. I needed to be strong. So I was. But maybe it would have been better if I'd had that meltdown then, because it sure feels like I'm always on the edge of one now.
To a casual observer, nothing's amiss. But it's getting harder for me to pretend nothing's wrong. And, so, I think it's time for me to start venting "on paper" as a way to release the pent-up emotion and frustration that I'm feeling. So, this is for me. For my mental health. And, also, it's a chronicle. It's going to be very real. It might even be raw at times. So be it.
The economy having done a nose-dive, it wasn't the easiest thing in the world for someone in his age group (59 at the time) to find a comparable position. Let's face it: No matter how good you are, it's cheaper to hire a younger person. A year later, he was hired back at the same company for a one-month temporary assignment. We were so excited!
But though the position only encompassed a small percentage of what his previous position had entailed, he found that he wasn't getting enough help and wasn't getting enough training. And wasn't able to "catch on." It was frustrating and humiliating. But I need to say this: Thank you, manager who realized that the person in front of you didn't match the description. Thank you for noticing that something wasn't right. Thank you for suggesting a check-up. Thank you!
About a year and a half ago, after a year of testing and retesting, the neurologist decided there was enough evidence to point to an "early-onset Alzheimer's" diagnosis for my husband. As you can imagine, that day was traumatic. I'm still not convinced that there hasn't been a mistake. Denial. Not just a river in Egypt, as they say.
He was glad to be able to put a name on what was happening to him, but I...well, I think it's safe to say that I freaked out internally. I didn't want to burst into tears and become hysterical, but the doctor's words caused my eyes to mist over and my breath to catch. And then the breathing sped up as I struggled to control my emotions. The room seemed to recede, and my head tingled. My heart raced wildly. I thought I might be about to faint. This was hard enough on my husband already. I didn't want him to witness a meltdown in me. I needed to be strong. So I was. But maybe it would have been better if I'd had that meltdown then, because it sure feels like I'm always on the edge of one now.
To a casual observer, nothing's amiss. But it's getting harder for me to pretend nothing's wrong. And, so, I think it's time for me to start venting "on paper" as a way to release the pent-up emotion and frustration that I'm feeling. So, this is for me. For my mental health. And, also, it's a chronicle. It's going to be very real. It might even be raw at times. So be it.
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