She's at the table with my 11 yo daughter. They have been there more than once today. And they are going on over an hour of fun and games.
First, they tried to do a puzzle. It had 500 pieces which Mom declared, "Way too many!" DD did not want to sustain that activity so she came out with Mancala. I'm sure Mom's played Mancala once or twice. But she couldn't get it. I love the fact that my daughter is attuned enough to go pick out another game.
She returned with cards to play Go Fish. They proceeded to play while I worked on papers for my classes. My Facebook status during this exchange was: "Listening to DD try to explain GoFish to my Mom is heartwarming. Listening to Mom struggle with this game she's probably played hundreds of times...heartbreaking. It's weird to experience both emotions simultaneously!"
I so want to help her be able to dig into the file cabinet that I know is in her brain and find the "Go Fish" file so that she can be successful. But I can't. The file is either lost or, at the very least, the drawer is locked. Tight. And the worst part of this disease is that it will never reopen. NEVER.
When I think about it too hard, it absolutely breaks. my. heart. Still, I'm thankful for the tenderness with which my DD approaches playing with her Grandmother this afternoon. It dawned on me that I could learn a thing or two from her. She laughs with Mom. She gently reminds her again and again and again what the next step is. And she relaxes. These are not things I do well.
While the things DD is teaching her today will be lost instantly. I am praying that the things she is teaching me, will stick a little better. I need to file it into my "Caregiving" file and throw the key away so that it's not lost.
Saturday, October 27, 2012
Sunday, October 21, 2012
Sundays
Perhaps you know the song, "What I Love About Sundays"...where the singer reflects on the great things about Sundays between church, family, friends, etc. Up until July I could have also joined in the song with my own list of the things I love about Sunday...but then she moved in.
I don't want anyone to think I don't like that. It's actually gone much smoother than I ever dreamed.
But the struggle began as we started considering what to do about church each week. She has been a member of the same church since 1968 and is a life-long Methodist. You might think, "You're married to a UM minister." And you'd be right, I am. But I don't attend a traditional service. Nor do I attend any number of mediocre contemporary services offered in our vicinity. We attend a church that is alive and has very loud worship.
Still, I believe that she deserves to experience that which she MAY have a connection to each week. That is not the service we attend. So we started our search for a traditional service that could work for her. We also, though, wanted to find a service that would allow us to continue attending our church with our family.
Now every Sunday I sit through a traditional UM service a la my childhood. And most Sundays I find myself lost in thoughts of my past and wondering just how much of this is really sinking in to those who are in the pews. It's so rote. So routine. So blah. So so...But she likes it.
Then we come home for just under an hour and head out again to our service. And she comes. Sometimes she's agitated by the music. Others I find her clapping and trying to sing along. Sometimes it's too loud for me, so I KNOW it has to be too loud for her.
I find, though, that rather than relaxing and really enjoying my Sundays, I'm worried about her perception. Her comfort. Her experience. And it's often at the cost of my own.
I told my DH not long ago that I think I'm learning just how selfish I really am. So every seven days I get the chance to shave off more of it and become more compassionate. More settled. More willing to listen and learn in the moment no matter how much I don't like it.
And some Sundays I DO learn. The nice thing is I will continue to get practice. Lots of it. Every single Sunday while she's with me.
I don't want anyone to think I don't like that. It's actually gone much smoother than I ever dreamed.
But the struggle began as we started considering what to do about church each week. She has been a member of the same church since 1968 and is a life-long Methodist. You might think, "You're married to a UM minister." And you'd be right, I am. But I don't attend a traditional service. Nor do I attend any number of mediocre contemporary services offered in our vicinity. We attend a church that is alive and has very loud worship.
Still, I believe that she deserves to experience that which she MAY have a connection to each week. That is not the service we attend. So we started our search for a traditional service that could work for her. We also, though, wanted to find a service that would allow us to continue attending our church with our family.
Now every Sunday I sit through a traditional UM service a la my childhood. And most Sundays I find myself lost in thoughts of my past and wondering just how much of this is really sinking in to those who are in the pews. It's so rote. So routine. So blah. So so...But she likes it.
Then we come home for just under an hour and head out again to our service. And she comes. Sometimes she's agitated by the music. Others I find her clapping and trying to sing along. Sometimes it's too loud for me, so I KNOW it has to be too loud for her.
I find, though, that rather than relaxing and really enjoying my Sundays, I'm worried about her perception. Her comfort. Her experience. And it's often at the cost of my own.
I told my DH not long ago that I think I'm learning just how selfish I really am. So every seven days I get the chance to shave off more of it and become more compassionate. More settled. More willing to listen and learn in the moment no matter how much I don't like it.
And some Sundays I DO learn. The nice thing is I will continue to get practice. Lots of it. Every single Sunday while she's with me.
Saturday, October 20, 2012
What used to be normal...
I'm sure she's taken THOUSANDS of baths/showers in her lifetime. I mean 71 years worth of bathing is a lot. Yet, she doesn't know how to do that now. Tonight we crossed a new bridge as I helped her wash her hair and monitored "bath time". She will no longer get in the shower. These little losses that have been so normal for so long break my heart!
Thursday, October 18, 2012
We are at least 6 years into "The Long Goodbye". I took her to Savannah with me in October of 2006 and really started to notice symptoms then. After eating in a Zaxby's in Jacksonville and commenting how she'd never eaten in one, two days later she announced, "I've never eaten in one of those!" I was amazed as I announced, "YES YOU HAVE...just 48 hours ago!!"
Although they were infrequent, it was these types of conversations that made me start to wonder about her health. The only problem was, my Mother had not seen a doctor in over 20 years. And, according to her, she was "FINE!" So I would wait and watch and watch and wait.
Although I am sure there are many more instances between August 2006 and July 2008, the next big "We've-gotta'-do-something-to-help-her" moments came during a cruise we took as a family. Mom left her hairbrush in Tampa and had a panic attack over it early after we left the shore. Every day after that, she'd announce, "I cannot find my hairbrush!" To which I'd remind her that she didn't bring it with her to begin with! Additionally, during that week we noticed the need to help her navigate more. She couldn't remember that she had a drink card that allowed her to get sodas anytime she wanted. The sixth night of the cruise, another waiter said she could "swipe her card" to get a coke. She said, "That's the first time I've used that all week!" Exasperated, I couldn't take it. My brother and I had a meeting of the minds and decided we were going to push her harder to go to the doctor.
I wish I could say that she went willingly shortly after that time.
But she didn't.
It was about two more years before I had had enough. I will spare the ways we pushed her to go to the doctor. Suffice it to say, I had to make the appointment, push the doctor's office to even schedule it against her will, and then show up and force her to go. It took another 6 - 9 months before she had any sort of diagnosis. Soon, she had a diagnosis of Dementia, though the doctor was quite vague with us about what was happening with her. And all along she continued to tell us she was "fine" and told all of her friends we "thought she was crazy" and we were trying to have her "locked up".
I've been wanting to document the story for some time now. And there are many many gaps to fill in between there and here. But I have to start somewhere. So there's the first post...a little glimpse into her. They call it "The Long Goodbye" and I totally understand. This is my little place to give others a glimpse into leaving slowly. Because that's what is happening. There's much more to come.
Although they were infrequent, it was these types of conversations that made me start to wonder about her health. The only problem was, my Mother had not seen a doctor in over 20 years. And, according to her, she was "FINE!" So I would wait and watch and watch and wait.
Although I am sure there are many more instances between August 2006 and July 2008, the next big "We've-gotta'-do-something-to-help-her" moments came during a cruise we took as a family. Mom left her hairbrush in Tampa and had a panic attack over it early after we left the shore. Every day after that, she'd announce, "I cannot find my hairbrush!" To which I'd remind her that she didn't bring it with her to begin with! Additionally, during that week we noticed the need to help her navigate more. She couldn't remember that she had a drink card that allowed her to get sodas anytime she wanted. The sixth night of the cruise, another waiter said she could "swipe her card" to get a coke. She said, "That's the first time I've used that all week!" Exasperated, I couldn't take it. My brother and I had a meeting of the minds and decided we were going to push her harder to go to the doctor.
I wish I could say that she went willingly shortly after that time.
But she didn't.
It was about two more years before I had had enough. I will spare the ways we pushed her to go to the doctor. Suffice it to say, I had to make the appointment, push the doctor's office to even schedule it against her will, and then show up and force her to go. It took another 6 - 9 months before she had any sort of diagnosis. Soon, she had a diagnosis of Dementia, though the doctor was quite vague with us about what was happening with her. And all along she continued to tell us she was "fine" and told all of her friends we "thought she was crazy" and we were trying to have her "locked up".
I've been wanting to document the story for some time now. And there are many many gaps to fill in between there and here. But I have to start somewhere. So there's the first post...a little glimpse into her. They call it "The Long Goodbye" and I totally understand. This is my little place to give others a glimpse into leaving slowly. Because that's what is happening. There's much more to come.
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