Saturday, May 31, 2008

"And yet it's the hardest challenge..."

We got the Annual Appeal from the Central Ohio chapter of the Alzheimer's Association in the mail recently, which is essentially a newsletter/fundraiser attempt.  It talks about some of the features and services of the Alzheimer's Association, and has three profiles in mama is one of them.  It has her picture and quotes her as follows:
"It's frustrating for me to get up in the mornings.  There are so many things I want to do.   And then I realize I can't do them all and I want to cry.  I don't want to be a burden or upset my family.  It's a challenge every day as I never know what each day will bring.  It helps to have a routine, a routine is important - and yet it's the hardest challenge.

I live in a small town and don't have many other people to talk to about my condition. Fortunately, I am able to take advantage of the online resources provided by Alzheimer's Association.  I am also able to contact the chapter's clinical staff through the Helpline if I have a question, need information or just someone to listen.  The programs and services provided by the Alzheimer's Association are important to me and have become part of my routine to help me survive with this disease."

We got a big envelope with several copies.  Neither Mom nor Brian knew she was going to be featured.  Apparently several months back, a woman from the Association came and talked to Mom to hear her story, so Brian figures this must be as a result of that conversation.  We were talking about it after they showed me the newsletter, and I threw out, "And Mom, you're not a burden to us."  She half-smiled and said, "Just you wait."  I guess she's fully aware of what's ahead.  I wonder if she thinks about it a lot.  When she's sitting there staring into space, is she imagining what it will be like when she doesn't know who we are anymore?  Is she plagued by fears of the future and of the unknown?  If so, she doesn't talk about it to anyone that I know of. Maybe she talks to people on the Helpline, according to her profile...but I never knew it.  It must be so lonely and so wearying to live with unvoiced fear like that.  I want to reach out to her and let her know we can talk about it and that she can let it all out, but I'm afraid too.  And in my cowardice I am selfish, because I am refusing to try to help her for fear that I can't and so the silence continues.  I hope I get over myself before it's too late.

Today is Brian's birthday.  Special days are always tainted.  They always leave me thinking how unfair and screwed up life is.  Mom and Brian had big dreams about the life they would spend together, and with each passing year those dreams stand in starker and starker contrast to the truth of their lives.  But oh, how he loves her.  I only pray I am so blessed as to one day be loved by a man with the steadiness, selflessness, and strength with which Brian loves my mom.  There really are no with that I leave you, to welcome your comments and thank you for stopping by!

Tuesday, May 27, 2008

A little down tonight...

Today was a weird day. It was very much an I-miss-my-mom day. She didn't get out of bed until about 11:15. Brian knew he was going to work late so I thought it would be good to get out of the house and break up the day a bit. I had to go to the bank, and I so I asked Mom to come along and said we could do a little window-shopping too. She took a shower and then sat back down on the couch to wait for me to get ready, where she fell asleep again. We went to the bank and walked around some shops downtown, and I was just scrounging around for anything at all to talk about. The whole drive in was complete and utter silence (not that that's different from any other day lately, but today it bothered me more). The whole time we were out was silence. Brian's birthday is in a few days, so I we looked at cards. Mom saw a couple she liked, but didn't pick any up. Before we left I asked her why she didn't get one, to which she replied, "I don't have any money". Of course, I told her to pick one out and I would get it...I think she was embarassed by that. I asked her if she wanted to get Brian a present, but she said she didn't know what to get and it would be just as well not to get anything. We got back home and she slept on the couch for two or three hours.

I just miss her. I miss carrying on a conversation and laughing. I miss making plans together. I miss effortlessness. I miss interaction. Oh, and an update about the whole medication situation...Mom talked to her psychiatrist last week about cutting back on some of her anti-psychotic drugs. He said his records indicated that she hadn't even been taking one of them since November! I have no idea where the mixup in communication occurred or how she was able to keep renewing her prescription, but supposedly she wasn't even supposed to still be on it. And for another, he said he had down that she was on a lower dosage than what she said. Again, not sure how that all got confused. So anyway, the outcome is that she is now being weened off of one completely and cutting back on another. Brian is very hopeful that by taking away some of the medications, Mom will be more lucid and more like herself. I want to be hopeful, but I'm too cynical for that. Based on today, I don't see any changes yet. Although we did have a cookout on Sunday, and she didn't get anxious at all the whole day. She certainly wasn't talkative, but she did stay around people and never got upset...which is a victory in our book.

I just miss her.

I welcome your comments and thank you for stopping by.

Tuesday, May 20, 2008

Amateur hour...

I called home once while I was in Israel...turned out to be a horrible idea. Mom answered the phone and I talked to her for a solid two or three minutes, telling her what we'd been doing and how the weather was and whatnot. Finally she stopped me mid-sentence and said, "Who is this?" Ouch. "It's Kels, Mom." Slight pause. "Oh! Here, why don't you talk to Brian?" I wasn't going to was an almost instantaneous reflex, but I stifled it. Then a friend of mine came in the room and I told him what had just happened and my eyes filled up and filled up but I held it back. Then he left and I was alone, and I tried so hard to blink the tears away but daggone it, in spite of me, one got out. Over the course of the next two nights, I penned the following poem:

The hot tear stung her cheek
As it trickled slowly down
A single leak from the cistern of pain
In which she hopes not to drown
Blink really hard and wipe it away
Maybe that will soften the edge
Numbness preferred while pain is deferred
Inching closer to the end of the ledge
How can it be that she feels so alone?
Where did her Father go?
Did He close His eyes as the madness crept in?
Surely it couldn't be so!
But to see and know and stand idly by
Seems so unlike the God she knows
The proverbial fork in the road that she walks
Pits faith against a doubt that grows
Once-blind trust gives way to questions
Too deep for her voice to find
Belief is as elusive as her mama's smile
And as fragile as her mama's mind
But yet, the Lord, He whispers to her
"You have such a limited view
I know it hurts more than anything should
But what you face, I've been through too
I never promised life would be easy
Or that you'd never lose something dear
One thing, however, I did promise you
Is that I'll always be near"
She knew it was true and straight from the Lord
Still that didn't give precious time back
But the journey's not done and one day the questions
Will have the answers they currently lack
In the meantime she may cry a little
Because she needs to every now and then
But she knows her God sees and He hears and He cares
And He won't mind showing her again
Trust through confusion, hope through doubt
He'll prove faithful every step of the way
The dark glass she sees through will eventually turn clear
And she'll understand all someday.

I haven't really written much in this blog about the effects of my mom's illness on my spiritual life...I guess for a long time I felt like something was wrong with me because I was not the happiest with God as a result of everything that has happened. I still feel that way sometimes. I know in my mind that it's okay to question and be raw and honest...but when honesty is so ugly and abrasive it doesn't feel okay no matter how much I know it is cognitively. Besides, how could I, the role model yonng Christian woman, allow the people around me to witness my faith crisis? What kind of example would I be setting by allowing these tremors to expose my shaking foundations in plain view of those who think so highly of me? How can I encourage Brian to trust God when I don't do it myself?

I have lived with these questions for going on two years. I have spent periods of time refusing to read anything in the Bible but Lamentations (even Job has a happy ending, what good is that?), I have yelled at God, I have ignored Him, I have immersed myself in theodicy, I have enlisted prayer from every Bible study, professor, email prayer chain, and friend-of-a-friend I can find. The only thing I really knew was that I was going to dig in my heels and wait for the day when God would show up again, because it sure seemed like He decided to spend His time elsewhere for a while.

Here's the crazy part. He did. He showed up in the strangest way. When I wrote that poem, I didn't believe the parts at the end about Him being faithful every step of the way and all that. Sure, I wrote it down, but it was still kind of empty. The morning after I finished it was when I shared my testimony with the tour group. I read the poem to them, and saying it out loud made it a little more real, although still not comfortably so. But the next morning, something glorious happened. I woke up, and I felt joyful. I don't think I can remember the last time I woke up feeling more content, peaceful, or just plain happy as I did that day. I cannot explain to you (or myself) quite what happened, other than to say that God flipped a switch and with it reassured me that he hasn't forgotten about me or my family, He loves us, and I can trust Him. And I'm not just saying that...I really mean it. Pretty sweet, if you ask me.

I welcome your comments and thank you for stopping by.

Sunday, May 18, 2008

Back by popular demand...

A lot of people have requested that I take up blogging kind of got squeezed out by school and other obligations that just didn't leave time for regular updates. Apparently people like to read what I write; who knew? So here I am, back again. Be excited.

I just read through all of my old posts, and my head is swimming. It's crazy to think about all that's happened in the past couple years and how different everything continues to be. Since the last time I wrote, so much has changed (both with Mom and just life in general). One really good thing, though, is that after reading all I've written, I realize now I'm doing a lot better than I used to be. I have had more than my fair share of breakdowns, don't get me wrong, but on a daily basis, I am no longer plagued by depression or overwhelmed by life. More often than not, I am doing okay...and I certainly could not have said that a year ago. Thank you Jesus!

But the question everyone asks is, "How's your mom doing?" That answer is not as favorable. It's so strange to me to read some of my old posts and be reminded of conversations with Mom, because we don't have conversations any more. She doesn't talk. She doesn't smile, she doesn't laugh, she doesn't have interest in anything at all. She came to my college graduation, but she wasn't really there. Brian tells me she's happy to have me home after travelling for the past month, but you couldn't tell for the way she's indifferent to my presence. I can't believe how quickly she's become this way. Brian and I wonder whether it's the disease or side effects from medication. My roommate's mom commented to me on graduation day, "Your mom seemed very heavily drugged." Maybe that's why she's so withdrawn and unmotivated. She has an appointment with her psychiatrist tomorrow, and Brian talked her into asking him about going off some of her medication to see if it helps. She's terrified to do anything about her medication because she's afraid that she'll have suicidal thoughts again and "go crazy". But if that's a serious risk, then the doctor won't allow her to go off it anyway, so it doesn't hurt to ask. I'll let you know how it goes.

I've been thinking a lot lately about courage. I had the opportunity recently to share my testimony in front of about 40 people, and several people told me afterwards they think I'm so brave. That's not the first time I've been told that, and I just don't get it. I don't understand why people think I'm's not like I have a choice in my circumstances. What's happening to my mom is going to happen whether I want it to or not, so that means I just have to deal with it as best as I can. Nothing about how I respond seems brave to me at all. On the contrary, the way I withdraw from Mom and the way I get angry with the Lord sometimes seems utterly cowardly. Just because I'm honest about it doesn't make it courageous. I don't want people to make me out to be some sort of martyr. Sharing my testimony was a great experience and I got a really wonderful response from a lot of people...but I could tell that every single person looked at me differently. For some, it was pity; for others, almost a sort of respect. For almost everyone, there was that look that says, "I never would have guessed you were facing such a struggle", a thought that has also been verbalized to me quite often. I still haven't figured out if it's good or bad that people are usually so surprised to find out about my hidden heartache. I mean, I know it's not something I need to broadcast to the world, but if I come across as so "together" all the time, am I somehow being dishonest? Am I somehow betraying my mom by not being more affected? I can't decide.

Anyway. I'm going to try to get back into the habit of updating regularly again, so check back often if you're interested. I welcome your comments and thank you for stopping by!