Christmas seems like one of those things that are big enough to work in the ALZ world. Big enough to remember. Celebrated from birth by my mom - so that should still be in her wheelhouse, right?
Not so fast there bub! Christmas is almost too big. It's so confusing - some times of the day mom is 12, sometimes she's 17, sometimes she's 82, sometimes she's 40 - and all of those ages come with something. Something that was missing at our home.
She spent most of the day in her younger years and that meant Grandma Perry coming to pick her up. She kept asking and it broke my heart. How do you tell someone that their loved one has been gone for 50+ years? Especially on Christmas. The older years meant that she was still independent - she had sent me money and was off to "do her own thing" with her peers. We don't have any of those here. The 40 year old Christmas only appeared once. I think she thought my daughter was me - we were handing out presents and Peyton was sitting closest to mom, so she gave her all of her gifts from under the tree. It was the kindest I've ever seen mom act towards her granddaughter. Her smile was genuine and she seemed to feel like she was a part of our family. It was pretty awesome!
The gifts were a bust. Not at first - she loved them all, but then they were unwrapped and taken back into her room and "where did these come from" became the favorite question of the day. She devoured the chocolate and other candy in her stocking, but the other gifts are stacked in her chair - and she is quite suspicious of them and their origin.
I fancied myself brilliant with a Shutterfly book of memories from mom's first year here - with our faces, our places, our names, charmingly-worded explanations that might help her remember things and lots of pictures of her and Sophie - her two favorite things. She loved it. She took her time, she read every page, she smiled and then she wrapped it back up in the wrapping paper and took it to her room and set it down with the other things.
I keep trying to slip it into the basket of her walker - thinking she will start to think it "belongs" in there and will look at it often and it will help her or entertain her or comfort her or be a companion of sorts.
I'm not giving up, mind you, but my goodness, this is a bigger task than I imagined. She has a mind of her own and she DOES NOT WANT to have Alzheimer's. She has been fighting it by ignoring it and lying about it and punching it in the face for as long as I can remember - easily a dozen years. Maybe this little memory book is too much of a reminder of what she doesn't remember.
I think that's the problem with Christmas...she is sad, mad, angry, frustrated, embarrassed that she can't remember if Christmas has come or gone or what year it is or did she go shopping or ... well, so many things. So Christmas was something to ignore, brush off, discount, be disgusted with.
I am torn. I love our home at Christmas. I love the decorations and the way everything looks in twinkly lights. The kids love it too. I am raising a couple of big Christmas nerds, just like their mother! But I will breathe a sigh of relief when I get to put it all away. And mom won't know it's gone or that it was ever there, but she will be just a little bit happier and a little bit more at ease, even though she won't know why.
Thursday, December 26, 2013
Sunday, December 22, 2013
Where do Christmas Memories go?
Of all things - a quick dusting of my mantel reminded me how cruel Alzheimer's is. I love Christmas - not really the gifts - that's my least favorite part. But I love the rest of it...the season, the awe of the birth of Christ, the lights, the wonder, the decorations, the traditions, the music, the colder weather, the cookies, the treats, the Peppermint shakes, the smiles for no reason, the stories, the memories - and even the shopping for and wrapping of gifts. I even managed to enjoy the ridiculous traffic around the mall yesterday!
Probably my all-time favorite thing is the memories that nearly all of my ornaments and decorations bring back. I love unpacking the boxes. I love positioning the ornaments that have the best 'stories' or have the most history in prime spots on my tree. I make the kids listen to the stories - hoping to give them their own memories to make their Christmases more magical.
I have a decoration that I made in the basement of Lima First United Methodist Church in Sunday School for my mom when I was 4 or 5 years old. It's so ugly it's sweet - like some of those dogs you see on tv! It's barely holding together. It's simple and made from an old wooden spool, some tin foil, a green pipe cleaner and red construction paper. It's supposed to be a poinsettia. It has a really old-fashioned cardboard gift tag (probably some that were so awful they were donated to the church by someone who bought something cuter!) with my name written in pencil! And I remember every single Christmas that my mom put it out on our piano from the time I was about 12. I hated that thing - it was so ugly! I didn't understand why she kept it. My mom was famous for getting rid of old things - she never kept clothes from her youth, we had no antiques in our house, she was Goodwill's best friend - no chance of Peg ending up on Hoarders! But she kept that old, frail, simple decoration and she put it out with the best, shiniest, newest decorations every single year.
I get it now. I have an entire tree in our bedroom dedicated to handmade ornaments - some made by me, some by my friends, but most made by my kids in their classrooms or at our kitchen table. I love all of them. I look at the dates and the kids names on the back or their pictures on the front and my heart fills all the way up with love and Christmas.
I have the old poinsettia on my mantle this year - it's place of honor since I was able to rescue mom's Christmas decorations from the basement in Shawnee after her husband passed.
I put it in her hands this year - hopeful of a memory for us to share. Nothing. She smiled - she likes Christmas too and she likes to be included in anything we do. But no memory. No flashback. No magical Christmas moment for me and mom. I'm the keeper of that memory now. I am passing it down to my kids and when the time comes I hope one of them will be enough like me that the only thing they will really want after I am gone is a big red box of handmade ornaments wrapped in tissue paper with names and years and faded photos. And they will open it up every year, the Friday after Thanksgiving, and tell their kids stories of Christmases when they were kids and maybe tell them how much I loved Christmas ... as they put the poinsettia in a place of honor on their mantel.
Probably my all-time favorite thing is the memories that nearly all of my ornaments and decorations bring back. I love unpacking the boxes. I love positioning the ornaments that have the best 'stories' or have the most history in prime spots on my tree. I make the kids listen to the stories - hoping to give them their own memories to make their Christmases more magical.
I have a decoration that I made in the basement of Lima First United Methodist Church in Sunday School for my mom when I was 4 or 5 years old. It's so ugly it's sweet - like some of those dogs you see on tv! It's barely holding together. It's simple and made from an old wooden spool, some tin foil, a green pipe cleaner and red construction paper. It's supposed to be a poinsettia. It has a really old-fashioned cardboard gift tag (probably some that were so awful they were donated to the church by someone who bought something cuter!) with my name written in pencil! And I remember every single Christmas that my mom put it out on our piano from the time I was about 12. I hated that thing - it was so ugly! I didn't understand why she kept it. My mom was famous for getting rid of old things - she never kept clothes from her youth, we had no antiques in our house, she was Goodwill's best friend - no chance of Peg ending up on Hoarders! But she kept that old, frail, simple decoration and she put it out with the best, shiniest, newest decorations every single year.
I get it now. I have an entire tree in our bedroom dedicated to handmade ornaments - some made by me, some by my friends, but most made by my kids in their classrooms or at our kitchen table. I love all of them. I look at the dates and the kids names on the back or their pictures on the front and my heart fills all the way up with love and Christmas.
I have the old poinsettia on my mantle this year - it's place of honor since I was able to rescue mom's Christmas decorations from the basement in Shawnee after her husband passed.
I put it in her hands this year - hopeful of a memory for us to share. Nothing. She smiled - she likes Christmas too and she likes to be included in anything we do. But no memory. No flashback. No magical Christmas moment for me and mom. I'm the keeper of that memory now. I am passing it down to my kids and when the time comes I hope one of them will be enough like me that the only thing they will really want after I am gone is a big red box of handmade ornaments wrapped in tissue paper with names and years and faded photos. And they will open it up every year, the Friday after Thanksgiving, and tell their kids stories of Christmases when they were kids and maybe tell them how much I loved Christmas ... as they put the poinsettia in a place of honor on their mantel.
Monday, December 9, 2013
Seemed like a good idea at the time...
So, in an effort to make everyone feel like this home is their home - in other words - to give everyone a chance to do what they want in a place they are comfortable without all of us stacked on top of one another, we moved mom's tv into the red room.
Let me preface the story with another story...back in mid-to-late-September, mom got bothered by the green light on the wireless modem that controls her cable and couldn't be quieted down. She had convinced herself that it was going to set her room on fire in the middle of the night, so we ended up unplugging her tv....in MID-TO-LATE SEPTEMBER (aka 90 days ago!!!).
I brought up the idea of moving her tv into the red room, where she loves to sit and look out our front window. Mom finds the strangers and cars on our street much more interesting than our family playing in the back yard...sigh... I thought this would be a way to allow the kids some time to watch their shows and play video games in our family room and still allow mom to keep her routine. Seemed like the day we put up her Christmas tree would be the perfect day since we had to move things around and clean anyway.
I have never been more wrong. She was pissed! She was confused (which I expected), she was bothered (which I also expected) and she was pissed! She brought out some unpleasant faces, words, comments, body language and attitude to show her displeasure. We lasted 3 days. It ended badly for mom and for me. It made my husband mad, it entertained the kids. She was so mad that she even decided that we were punishing her by putting a Christmas tree in her room. It's upstairs in my hallway now and it's beautiful. I remember how much she used to love her tree. Love is not a factor for mom anymore. Pleasure and joy are off the table. She just wants to be right and to argue til she has alienated herself from everyone else. It's heartbreaking and sadly, it is sometimes hard to remember that this is one of those "that's just how it is" things and it does no good to be angry or frustrated. It is what it is.
Anyway, the tv is back in it's place and for now, it's plugged in. She actually went in there and watched the Today show this morning so my family and I could watch a show just the 4 of us. It was unpleasant getting it arranged, but after she got mad, made every effort to portray herself as the victim and me as the villain, after I used up all the patience I could muster and finally just walked out - we enjoyed a 30 minute show together. We layed all over our furniture with our jammies on and blankets and the dog and the volume only at 15 instead of 30 (which is starting to beat me down day after day). It was worth the effort.
I am assuming we are going to have to have more of these confrontations to get more of these family moments, but it really is worth it. You see, when your loved one has advanced Alzheimer's, you can't set rules, you can't leave notes, you can't use a white board, you can't have conversations, you can't reason and you can't expect them to be empathetic. You just have to decide that you are keeping them safe and out of a nursing home and that they aren't losing weight and you are sure they are taking their medications in the right doses and on time, they are cleaner, fresher, better cared for and loved. You have to remember that the past is lost - for both of you - and can never be fixed or apologized for or made right and the break through you dreamed of is just not going to happen. You have to remember how tough this must be on the people you love the most, that God is probably giving you a blessing that will change your lives for the better at some point here or in Heaven and that they are worth the fight. So she's going to get pissed, she's going to make you feel like a bad person - but I'm not. And she isn't suffering, she's sick.
But 30 minutes alone with my family is worth any fight and as with so many things with mom, she may start to think that's how it's "supposed" to be and she'll retreat into her space more often. I guess we'll wait and see.
Let me preface the story with another story...back in mid-to-late-September, mom got bothered by the green light on the wireless modem that controls her cable and couldn't be quieted down. She had convinced herself that it was going to set her room on fire in the middle of the night, so we ended up unplugging her tv....in MID-TO-LATE SEPTEMBER (aka 90 days ago!!!).
I brought up the idea of moving her tv into the red room, where she loves to sit and look out our front window. Mom finds the strangers and cars on our street much more interesting than our family playing in the back yard...sigh... I thought this would be a way to allow the kids some time to watch their shows and play video games in our family room and still allow mom to keep her routine. Seemed like the day we put up her Christmas tree would be the perfect day since we had to move things around and clean anyway.
I have never been more wrong. She was pissed! She was confused (which I expected), she was bothered (which I also expected) and she was pissed! She brought out some unpleasant faces, words, comments, body language and attitude to show her displeasure. We lasted 3 days. It ended badly for mom and for me. It made my husband mad, it entertained the kids. She was so mad that she even decided that we were punishing her by putting a Christmas tree in her room. It's upstairs in my hallway now and it's beautiful. I remember how much she used to love her tree. Love is not a factor for mom anymore. Pleasure and joy are off the table. She just wants to be right and to argue til she has alienated herself from everyone else. It's heartbreaking and sadly, it is sometimes hard to remember that this is one of those "that's just how it is" things and it does no good to be angry or frustrated. It is what it is.
Anyway, the tv is back in it's place and for now, it's plugged in. She actually went in there and watched the Today show this morning so my family and I could watch a show just the 4 of us. It was unpleasant getting it arranged, but after she got mad, made every effort to portray herself as the victim and me as the villain, after I used up all the patience I could muster and finally just walked out - we enjoyed a 30 minute show together. We layed all over our furniture with our jammies on and blankets and the dog and the volume only at 15 instead of 30 (which is starting to beat me down day after day). It was worth the effort.
I am assuming we are going to have to have more of these confrontations to get more of these family moments, but it really is worth it. You see, when your loved one has advanced Alzheimer's, you can't set rules, you can't leave notes, you can't use a white board, you can't have conversations, you can't reason and you can't expect them to be empathetic. You just have to decide that you are keeping them safe and out of a nursing home and that they aren't losing weight and you are sure they are taking their medications in the right doses and on time, they are cleaner, fresher, better cared for and loved. You have to remember that the past is lost - for both of you - and can never be fixed or apologized for or made right and the break through you dreamed of is just not going to happen. You have to remember how tough this must be on the people you love the most, that God is probably giving you a blessing that will change your lives for the better at some point here or in Heaven and that they are worth the fight. So she's going to get pissed, she's going to make you feel like a bad person - but I'm not. And she isn't suffering, she's sick.
But 30 minutes alone with my family is worth any fight and as with so many things with mom, she may start to think that's how it's "supposed" to be and she'll retreat into her space more often. I guess we'll wait and see.
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