Wednesday, January 18, 2012

I laughed. I cried. I yelled and shook with anger.

"I laughed. I cried. It moved me, Bob."

Um, to be accurate, I suppose the title should read more like, "I laughed. I cried. I yelled and shook with that feeling you get when you've just yelled at strangers, and whoa, did you really just do that, that is so very atypical, but man it was justified, that was ridiculous, how dare they make you yell at them..." Yeah. That emotion. Not exactly anger. Not exactly embarrassment, either.

As for the crying, that was a different occasion. And I didn't, much. Just felt like it.

This was an interesting day.

An anniversary, of sorts. The day of the Alzheimer's Mass, at work. The day, a year ago, when I started thinking and working on my first blog post about Mom's dementia. (The major thinking anyway -- most of my posts do some early percolating first, but as a step towards actually sharing what I was thinking about, it basically happened a year ago today.) The next day I finished and posted it. The Mass stays on the same day of the week, so the date is slightly off, but meh to that.

It's been... an interesting year. I think I might even mean that in the full Firefly sense. Well, the second half of the year wasn't so bad.

It was good to start a new year. Felt hopeful. Nice. Thank God all that stuff from last year is over...

Oh, wait. It isn't. One thing is just going to keep getting worse and worse. Still, without some of the other things going on, it's a LOT easier to handle. Or it would be, if it would just stay still, d*@& it.

Yeah. I was feeling fine. I sat in on a Fantastical Lit class over the fall semester, which was awesome. Processed a little bit more about Mom's dementia in the midst of the class. Occasionally worried that I was ignoring it too much, and this was going to be bad, but that was it. The worry didn't even turn me instantly depressed, like it would've if I hadn't been doing so great.

Until today. Stupid anniversary.

No, that's not true. There were some twinges before this.

She's been repeating herself more, but... well, I know that it's beyond normal, that it's obviously because of the dementia, but it doesn't seem so bad. Sometimes you repeat yourself even when you remember what you said, just because it's something that's important to you. This was beyond that, but... okay.

Recently, one of my sisters sent Christmas presents for everyone to my parents' house. Mom has them, and has been distributing them. Doesn't make complete sense, but it's one of those things she always would've done in the past, and she basically still can do it, so I guess it's good. I came over one day, she gave me mine. I think before I left she wondered for a moment if she had something for me, I reminded her she'd already given me the present, and that was that.

Then I came over again, last Thursday, to pick up something. She took me aside, pulled out the presents, was looking through the labels... "No, Mom, it's okay. You already gave it to me."

I mixed a shake for myself and was on my way out about ten minutes later. She stopped at her room, pulled out the presents... "You gave it to me already. It's okay."

Oh, and she was also pretty perplexed about how to butter her potato.

I know these are small things. I know she still has so much, so many memories that could be gone later... but today is an anniversary of sorts, and I am sad.

I ended up missing the Mass this morning, taking a friend to the hospital instead. (She's completely fine.) I'm kind of glad I missed it. The Mass itself is beautiful, but I think today seeing the Alzheimer's patients would've made me cry. I just... don't want to see that right now. I'm fine with seeing it in general. Just... not now. Please?

I mean, I would try to stop thinking about it, too, but that didn't work. I finished the novel I was reading, and killed my phone's battery browsing facebook before giving in. I could continue browsing on my computer (did, for a bit), but I think the time has come. Have to write to think. At least, in a productive, now-I-can-put-something-behind-me sense, and not the broken record kind of thinking.

The other thing I've been thinking about recently? Being young for this to happen. I was... very tentative, at first, to accept any condolences about my relative youth and her relative youth. Implying that because I'm 29 years old and was 27 that last October then this must be harder for me, well, that implies it's easier on my older siblings. And I don't want to say that, and I don't want to try to quantify or compare levels of pain. No good comes of this. Although I think I'm fine with saying it could very well be harder on Melanie. I... with the death of a parent, okay, it's obviously not good to lose a parent as a child, or in high school or college. It is Bad. With a spouse... tragic when a newlywed dies. I think the one part that made this harder for me to admit is that when someone dies after a long full life with them, you grew to know them that much better, there's even more there to miss and grieve the loss of. But... okay, you can be glad for the time you had. That's life, everyone dies eventually... But yeah, Melanie, you having to deal with this when you hadn't quite graduated from college yet? That's bad. No one should have to do that. I remember her heart attack while I was at Biola. That was bad.

29 years old, on the other hand, is not that young. That's the other bit. I was a morbid child and thought when I was a kid about my parents' age and my age and when they might die, and because I was only a child with a very limited grasp of life expectancy and it sometimes happens this way, I thought, okay, what if they die at 60? That hasn't happened. That would've been... 2001, for Mom, and end of 1998 for Dad. Thank God you're still here. Still here while I went through high school and college.

Heck, back in not-quite-as-modern times, I could die at 29, and it'd be young, but not unheard of. For my parents to die or suffer the diseases of old age when I'm 29, and they had me when they were older... Yeah, not the most tragic thing out there. I'm not a child anymore.

But all that to say, I think I'm fine with this particular condolence now. It's... lonely. I am... really, really, really tired of hearing about people's grandparents who have or had Alzheimer's. No offense to anyone who's told me that. Sincerely, I do not mind, I haven't minded any of these statements on their own. It's just as a group that it's grown taxing. It's like it's rubbing my nose in the fact that I'm young, and none of my peers are dealing with this yet. It's probably the exact thing I would say, in your place. And I'm sure having a grandparent with Alzheimer's can be very, very painful. I definitely grieved when my grandparents died, and I wasn't at all close to them.

But this... this is different. Except maybe for a few people who were raised by their grandparents instead of their parents, the relationship is different. And I'm young, and it's hard, and this kind of thing isn't supposed to happen to me yet, and it sucks. In fact, I would very much like to hit something.

There. I said it. I'm going to hold back from calling that a "pity party," and just be honest. It does suck.

I've also been thinking about identity. I'd rather identify myself by my strengths than my scars, I think, but because it's often much harder and takes much more vulnerability to show another your scars, sometimes they feel like the most real, deepest and truest things about yourself. At least to me.

I get depressed at times, and sometimes a thing like Mom's dementia can be handy when you're in pain -- you can point to it, and say, "Look, this. THIS."

But of course it isn't handy at all because it just adds to the pain.

And there were times last year when it felt like so overwhelmingly everything... of course it seemed like a part of my identity. It is. My mom has dementia. That's a part of who I am right now.

But... I had other pains, before this happened. Those were a part of my identity. They're harder to explain, and point to. Not as overwhelming right now, but if harder to share, in some ways they still feel truer, because of that? I don't know. Maybe not. But one thing I do know -- I am still the same person I was before this happened. At least in part. I've changed, but not completely, and I'm still me. So she can't be all of my identity... Not that I thought she was the whole thing but... Okay, I don't know where I'm going with this, anymore. Just thinking out loud. Sorry. Moral of the story: Identity is complicated? Guilt over how you see yourself is bad, even if you define large parts of yourself by the wounds and scars, rather than by the joys?

Now for something completely different! In honor of the other interesting part of my day! That I referenced way back at the beginning of this post, and even posted a teaser sketch for, on facebook and google+!

(I was going to do a better drawing for the post, take more time, but it's getting late, and I just want to finish this thing. I'd really like to post it tonight instead of tomorrow. That way I won't have to change my "today"s to "yesterday"s.)

It was a new experience, because I've never had people honk and yell at me for something I so obviously couldn't do anything about, before. At least, I don't think that's happened to me before. It was ludicrous.

Though I've drawn little tiny arrows, those are to show which directions the cars were pointing. We weren't going anywhere, save for a bit of impatient inching, now and then.

In retrospect, I think the guy next to me and the guy behind me didn't see or couldn't tell (respectively, probably) that there wasn't any room at all for me to move forward. I mean, it wasn't like it was one of those situations where it would be a little tight and you wonder, "Can I get through? Should I try?" No. There were two feet, maybe three between the van and the corner. But I didn't notice that the guy beside me wasn't blocked, that he could advance and fix the whole mess from the very beginning! So see? It's not always easy to be very observant about what's going on behind you! He didn't notice that I wasn't being an idiotic-let's-make-a-huge-traffic-jam-on-the-off-chance-that-if-I-wait-here-I-can-get-a-parking-spot person, and I didn't notice that he...was! Yeah.

Wait, I was trying to be nice, and give him the benefit of the doubt, and all that. Oh well. Oops.

At first I typed (and posted) that as "...I-can-get-a-parking-lot person." Yes. Just wait here, and we will give you a PARKING LOT! It's magic.

Um, so he yelled some, and the guy behind me honked, and I yelled back (complete with big arm gestures), "Where am I gonna go? I can't go back, he's there, you're beside me, they're in front of me, what do you want, I can't go anywhere!" Or something to that effect. I was ticked. And then, wonder of wonders, he moved! And the van could move, and the woman driving the van thanked me, and everyone lived happily ever after. The end. Though, driving away, I was shaking with the emotion I mentioned at the beginning of this post.

See, who ever said yelling never fixes anything?

Ooh, do you think they're wrong about hitting stuff, too?  [evil grin]


vespreardens said...

Oh, people in parking lots....

They are. Hitting solves a lot of things. This is why war exists. Oh, it can also cause other, new problems. Just like war. But you can find the right things to hit sometimes.

Regarding your mother... you may not be alone for long. My dad and I have noticed my stepmom is... forgetting things? It's strange, because she's always been the organized one in the family. She's the one with the plans. But over the last few months she's been a bit scattered. We went out somewhere this past weekend... somewhere we always go for my dad's birthday, as well as for other occasions here and there... and she couldn't remember anything about the parking around there. It's weird. I think we're kind of in denial right now. I haven't brought it up to her, and I don't think my dad has, either. She's really young to start having Alzheimer's or dementia, and I don't think either my dad or myself really know what to do. I haven't even talked to the rest of the family about it yet. I would have written it off as her just having a few bad days... that just happened to be the last few times I saw her... but my dad mentioned it with the parking stuff.

It's a scary place to be right now.

Yeah, I know she's not my biological mother, but she was really there for me a lot growing up. She filled in a lot of the mother-holes my own mother couldn't quite fill for various reasons. She is a significant part of the reason I don't resent being female anymore.

Sorry, I'm sure this doesn't really help things much, but I've actually been meaning to talk to you about it since Sunday. I'm just worried my dad and I are misreading things, and I wanted the opinion of someone else who has actually had experience with this.

Sondy said...

Oh, now I'm sorry I sent all the gifts to Mom & Dad's! I didn't even think that distributing them might be a problem. (Of course, I meant in the first place to have them there by Christmas. Oh well.)

And, yes, it's perfectly fair for you, as a younger sibling, to be more hurt and affected than us older ones. I've always had a much younger mother than most of my peers. So when I say she's getting Alzheimer's, then I say, "But she's young!" I do have peers with parents with Alzheimers, but most of those parents are much older.

And I remember all the stuff I was working through with Mom and Dad in my 20s -- and you can't really do that, so much. You've got this big thing to deal with.

Hang in there, Little Sis!

aelthwyn said...

indeed hitting things can help - given they are 'safe' things to hit. I find I often need some way to release the 'angry energy' and that usually only some kind of impact works for this. Honnestly, although people get annoyed by door slamming and it's 'rude' and all, that's often a very effective and safe energy transfer method. :)

Anyways *hugs* my dear friend I know there's nothing I could say that wouldn't sound cheesey, so I want to send you a nice long snuggly hug instead....even if that's not all that effective over the internet.

Linda Stone said...

Bless you, Marcy....and all you dear nieces and nephews. I'm so glad you have the outlet of writing. That is a gift. Sometimes just expressing it and getting it out of our heads gives us clarity.

It all makes me sad, too. I saw more of it, too, when we visited with her and your dad after Christmas

Marcy said...
This comment has been removed by the author.
Marcy said...

Yes, that's true. It can be tricky, though, to find something to hit or throw that is both satisfying and doesn't cause more problems than... I would like.

Oh, Liz, I'm so sorry! I'd rather stay alone, for your sake and your family's sake. ::hugs:: That is very scary. And yeah, biological or not... that's a very Big Deal.

Hmmm. Do you know much about her family's health history? If it is Alzheimer's, and if she's under... 60, I think, it'd be considered Early Onset Alzheimer's, which I believe has a very strong genetic link. Um, she hasn't had open heart surgery, doesn't have high risk factor for stroke, or anything like that??

How do you think she'd react if someone brought it up with her? I think some people stay in denial for a long time, but other people end up liking the validation of a diagnosis of some sort -- it's one thing to be losing your mind in a sort of literal sense, and another to feel like you're losing it but having no one acknowledging it. I mean, at this stage, obviously you wouldn't be saying, "You have Alzheimer's! You need to accept this and go to the doctor!" It'd be... I don't know. "We think there might be a problem. Do you think there might be a problem? We should try to get this checked out in some way?"

I would say to wait and if something is wrong you'll keep getting more clues and signs... but if... it'd be better to catch it ASAP, I suppose. There are medicines that are supposed to help a little...

Alzheimer's and the different kinds of dementia show up a little differently, I think, and then there are also variations depending on the personality of the person. A neurologist would know a lot more than me, of course. I know most about Mom. I think trouble with stuff like directions (and parking) IS a common early sign. It wasn't one we noticed so much with my mom because she'd already mostly stopped driving -- for other reasons, we thought. She was a bit of a hypochondriac after her heart surgery, and there was a while when she was complaining of light hurting her eyes, and wouldn't drive. If you wanted I could send you the list a bunch of us put together for her second neurologist appointment -- I think it was about a year after we started noticing problems. Don't know how helpful it'd be for you, but the neurologist said it was a really good list, helpful to him for his purposes.

Yeah, with stuff like this it is very hard to tell when someone might be having a bad day and you're overreacting, and when it's... really is uncharacteristic, and growing slowly, and... yeah. But I think this sounds like something that is worth taking seriously.

I'm sorry, it'd be nice if I could just say, "Of course not! She's fine! Nothing to worry about!" Wish I could do that. ::hugs::

vespreardens said...

Thanks. I'm... not really looking for sympathy so much as information at this point. I mean... I could be wrong? I probably need to speak with my dad and my sister about it more, since they spend more time around her.

If you could, please do send me that list. It might at least give me a direction to take in the conversation. At any rate, I don't think it will hurt.

If it is something like this, it's definitely early onset. She's only in her mid-50s. Neither of her parents seems to have any sort of degenerative dementia disease, though I really don't know about her mother's siblings, or her grandparents (which strikes me as odd at this particular moment, but I guess I just never really asked). She hasn't had open heart surgery. I really have no idea what her risk is for stroke, though again, neither of her parents have had one... that I know of.

As far as how she would take us bringing up the subject, I think it will depend very much on how it is brought up. If my dad and only my dad is suggesting it, she's just going to think he's being a jerkface (which he is, on occasion, when he doesn't like things his loved ones are doing), but if it's coming from multiple sources, or if we sit down and talk with her, we could probably convince her to see a neurologist, at least. But I only see her, like, once every other month, so it's *really* hard for me to get a clear read. I haven't really noticed any other common signs aside from a general sort of disorganized-ness that is rather uncharacteristic of her, but maybe there's something else weighing heavily on her mind?

Heh. Sounds like what I really need to do, as I mentioned earlier, is talk to the people who have more day-to-day interaction with her... and decide what to do, if anything, from there. Thanks, I really didn't know to even look at Early Onset Alzheimer's as a possibly separate thing. It gives me some direction, at least.

Marcy said...

Ah, well, information I can do! Sort of. More or less. Um, I'll send you that list now, as an attachment to a facebook message. Looking through it again, it's pretty extreme, but as it says, this was after she'd been declining for about three years. But again, may give a place to start.

The Alzheimer's Association can also be helpful -- They have forums and info and stuff. Like this list: Maybe the people who do have day-to-day interaction with her should check these out, see if they fit?

Marcy said...

That's okay, Sondy! I think it is good to keep her involved in some things, she *likes* it. I mean, at least it seems to me like when events and such are planned and she's mostly ignored because she's not going to be that helpful, it just makes her more anxious. She might not be able to remember what you tell her, but still, she does want to know... I'm not sure if distributing presents is exactly the same, but it seems kind of similar to me, and she *is* managing.

Thank you. I hadn't thought about you having a younger mother than most of your peers! How odd! :) Normally when I tell people I then tell them her age, which leads to something like, "Ohh, okay. But still!" And then I talk about her heart problems, and how that might contribute, but yeah, it isn't Early Onset quite. Just young for non-Early.

Fortunately it's my late 20s at least (she says, trying to sound dignified and old -- ha), and I have dealt with some of those other issues already. Especially since I kind of grew up hearing that our family is dysfunctional, although no one wanted to give me specifics, when I was a kid. :) Then as I got older I gradually worked through what *I* thought it meant.

There are still some issues, they've just become rather bound up with this, now. Fr. David says dementia seems to compress relationships, sort of put the issues in fast forward. I can believe it.

Still, I feel worse for Melanie. Not that... yeah, I can still accept your commiseration. :) Thank you!

Marcy said...

Awww, thanks, Andrea! I like your long snuggly hugs, even over the internet!

And fortunately, I have been having quite a lot of good days recently. Haven't felt the need to hit things or slam doors. But I'll remember, for next time... :)

Thank you, Aunt Linda. It's got to be hard to watch a sister go through this too, I can't even imagine if it were Abby. Or Becky or Sondy or Wendy or even Melanie... ::shudder:: Young or old, some things are just HARD.

Nancy said...

My dad's Alzheimer's gave me a new persepctive on dementia. In his last years, the dementia got pretty bad, but I still loved spending time with him, especially when it was just the two of us having coffee in the early morning. I loved how everything was so NEW to him; if I read him an amusing article from the paper, and he laughed, I could wait about ten minutes and read it to him again - it was just as fresh as the first time. It's a terrible disease, yes, and it also has this silver lining of making you think about the present in a totally different way. Because, really, all ALL of us have is the present, right?

@Vespreardens, I wonder, is your stepmother under a great deal of stress right now? Symptoms of stress can mimic symptoms of dementia - ask anyone who has ever cared for an Alzheimer's patient.

Marcy said...

Ah, Nancy is my mom's name. You're a stranger-Nancy, not another Nancy I know, right? Just curious.

Your comment reminds me of this post: . It was the winning post in an Alzheimer's blogging competition I entered. Very touching and inspiring.

I do wish though... people say it's harder on the loved ones than it actually is on the person with dementia. But other people say different patients react differently, emotionally. Some are happy (couldn't be happier!), some are angry, some are anxious. At this stage right now, at least, it seems to be pretty hard on my mom. It seems to be stressing her out something fierce. She walks around saying, "Okay, okay, okay, okay, okay..." ad nauseam, in the tone of voice of someone psyching herself up to do something. What it is that she's worried about though, I don't know. I don't even know if she knows.

Still, I'll try to remember your words, and enjoy moments with her, in the present.

Nancy said...

Oh, poor her, that sounds really sad. My heart goes out to her, and to you as you listen...anxiety is a giant problem for people with dementia. I can just imagine how I would feel; I bet I'd be "coaching" myself too. And maybe what you're hearing is what used to be her usual internal monologue, now externalized. There's so much we don't know...such a complex disease.

Also, yes, a stranger. But a mother of daughters, like your mom, and daughter of a parent with dementia, like you.

Marcy said...

Thank you, Nancy. Belatedly. I'm pretty inconsistent with my replies, sorry.

Welcome to the blog! And thank you for commenting, and for your sympathy and encouragement. I recently realized I'd like to write my posts to a larger audience, if possible. So both because of that and... not, but just because, you are very welcome here.

I'm pregnant now, so in a little less than eight months I may be the mother of a daughter myself. ^_^ Or a son.

Yes, I think you're right, I would feel like coaching myself, too. So many things are hard for her now. The other day she wanted to call another one of my sisters with the pregnancy news, and my sister living with her said she had to help her to dial. And she's always had some anxiety, so I could picture it as a used-to-be-internalized monologue, too.