I love my mom. I loved her before the dementia, and I love her with the dementia.
I am a little ashamed to admit this, but over the past few years, I have been struggling to bond with my mom. In many ways, I feel detached. This is a consequence of the disease; people with FTD lose many emotions and apathy. Relationships often become strained with this disease. I suppose it's not anyone's fault, it just is.
Lately, I find myself thinking about my mom; thinking about the "old" mom. The mom whose bed I used to lay on at night and talk with until my dad kicked me out of the room. ;) The mom who was always there to help me solve a problem or give me advice. The mom who shared in my joys, and my sorrows. The mom who loved to sing and dance while doing chores around the house. The mom who loved to bake, especially around the holidays. The mom who taught me how to be a mom.
I miss my mom. But I am fortunate to have many memories, which I will forever hold dear.
Sometimes, I look at my mom and I think "Who is this person?" The dementia has taken over, and the person she once was is becoming more and more of a distant memory.
Today, I came across a blog written by a daughter about her mother, who is also suffering from a form of FTD (known as PPA-primary progressive aphasia). In her blog, she shared stories written by others about her mom. They were a loving and sweet depiction of who her mother is, who she was before this horrible disease started to take over.
I felt inspired as I read this woman's blog. I write about my mom as she is now, with the disease that has invaded her being. I do this to educate about dementia. I do this to share with family members and friends what is going on with my mom, so that they might gain a better understanding and know what to expect when interacting with my mom. But I don't want my mom to be remembered for the alien being that she has become. I want my mom to be remembered for who she was.
I am beginning a new project on my blog. Every week, I would like to feature a post written by others who knew and loved my mom before the dementia. I would like to pay tribute for the wonderful wife, mother, Aunt, sister and friend that she was. Please contact me if you would like to participate in this project. You can email me a story, memory, thought, or anything remembered about my mom. If you have pictures, they would be a lovely touch; if not, your words will be enough.
I will feature a post every Friday-I'm hoping for a large response to this, so please be patient while you wait for yours to be featured :) For all those who knew my mom, please help me to honor my mom, for the wonderful person that she is.
Friday, November 2, 2012
Thursday, November 1, 2012
Halloween
Before dementia, my mom loved having all of the grandkids together to trick-or-treat on Halloween. There was almost no option to do it any other way; it was a big deal to see the kids in their costumes. Before we moved up the street from my parents, and lived about 20 minutes away, we would come to spend Halloween night trick-or-treating in my parent's neighborhood (along with my sister) so all of the cousins could be together and so that grandma could get pictures of her grandbabies. Mom also loved us to come along to their church ward's Halloween trunk-or-treat, usually held the night before Halloween. So we have always had at least 2 nights of festive fun and celebration altogether as a family.
We started a new tradition last year at our house on Halloween night. We decorate our garage and invite our friends and both sides of the family to come over, have some "spooky" food and take the kids trick-or-treating around the block. We have a great time. It can be chaotic with all the kids...just look at this group! But they are memories worth making and we have a great time together.
Like I said, we started this tradition last year. Last year was pre-diagnosis, but we knew mom wasn't quite right. We were frustrated and a little hurt when she refused to come over and celebrate Halloween with us. She was obsessed with staying home at her house and passing out candy to their trick-or-treaters. I think what she was mostly obsessed with was seeing her past Head Start student, who lives up the street and who she knew would trick-or-treat at her house. It did sting a little that she seemed to care more about seeing her past student than her grandkids. However, she did attend her ward's trunk-or-treat the night before and we went along with her to that. I suppose she figured she already saw the grandkids together and spent an evening with them.
This year, she did not participate in any Halloween festivities at all. I prepped her last month about Halloween...she didn't know what I was talking about. As Halloween got closer and we talked more and more about it, I think she figured out what the holiday was. But she would not come to the trunk-or-treat at the church and she would not come to my house. She did not pass out candy at her house either. As far as I know, she sat at home with her music on, playing her computer games until it was time to go to bed. She didn't see the grandkids in their costumes nor show any interest in them or the holiday at all; she was completely detached. Halloween was just another day in the world of Deana.
It is sad to see the decline and to see her uninvolved in the family traditions and activities that we once held dear. My guess is that by next year she won't even know what Halloween is. With Thanksgiving and Christmas approaching, I realize that the days she remembers these holidays is numbered.
Thursday, October 25, 2012
Rate of Progression
"How is your mom? Is she getting any worse?"
These are two very common questions that I am asked when people inquire about my mom. I appreciate the care and concern from those around me, but I have to admit those are rather difficult questions to answer.
"How is your mom?"
Well...where do I start? The standard answer "fine" or "okay" is a far cry from how mom is. Do I take a pessimistic approach and answer "bad, she's doing bad."? Do I answer that she is constantly complaining of every ache and pain? Do I say that she is sleeping more and more, has difficulty getting up and going in the morning and is becoming more and more clumsy? There is no short answer to that question.
"Is she getting any worse?"
This is a progressive disease. It will only continue to get worse; it will not get better. It's hard, sometimes, to measure day-to-day how much "worse" she has become. The only way I can measure it is by looking back to how she was six months, or even a year ago.
AT THIS TIME LAST YEAR, mom was adopting somewhat of a rigid routine. However, it didn't control her life. When coming to our house for Sunday dinners, she would get a little antsy the closer it got to 8:00. She had adopted her 9:00 bedtime, but occassionally got to bed later. She took occassional naps but certainly did not revolve her day around her naps. In fact, this is a picture taken exactly one year ago from this month, when my brother was visiting for our birthday. We spent the day in San Diego as a family and visited the tide pools. She did complain about being hungry at lunch time and was tired by the end of the day. But she did not skip any family time for sleep. She was happy to spend time as a family. If I remember correctly, she even drove down there (with some family members in her car). It was this trip when we began to question her safety as a driver, but it wasn't until months later that she was "cancelled" (as she puts it) as a driver.
At this time last year, she was still decorating cakes. Cake decorating was one of her hobbies and talents. Last year, she was still helping me and my sister to decorate our kid's cakes. This is the last cake she decorated; it was for my nephew, Jeremy's birthday in September of 2011.
At this time last year, we were surprised to be learning that she was losing meanings of words and objects. At the pumpkin patch petting zoo, she did not recognize a goat (she insisted it was a dog) and that was surprising and concerning to us. She was starting to lose comprehension of what things were; for example, a calculator.
At this time last year, she was trying to get disability and took a leave from work. In fact, just last summer we were debating if she should leave work completely or return for the new school year (although we leaned towards her leaving permanently).
At this time last year, she was very picky with her food. Her list of what she could make for dinners (and remember what that food was) was becoming much shorter, but she still had about 15 things or so on her list of what she could make. She fussed over what we made, but would usually still eat whatever we made at family dinners.
At this time last year, she had difficulty remembering people she did not see regularly. Usually, after long explanations of who the person was, her memory would be sparked and she could put the pieces together (that was not always the case, though).
AT THIS TIME 6 MONTHS AGO, her schedule was becoming more rigid, but she still engaged in family activities over naps. We went to San Jose for Easter (you can read about that trip here). Although she was obsessive about her medication times and bed/wake-up times, she still got up early to go to brunch with us, and got up and spent the entire day at the zoo with us, with NO naps the entire weekend.
At this time 6 months ago, we were still somewhat surprised as we noticed some of the word comprehension she was losing. For example, when we booked her flight and she couldn't comprehend what a layover was or what luggage is, I was suprised and saddened, as I knew the disease was progressing. A year ago from now, she would have known what those things are.
At this time 6 months ago, the grandkid's birthday began (all the birthdays are from April on through November). She did not help, or show any interest in helping, with any birthday cakes.
At this time 6 months ago, she was "cancelled" as a driver. We questioned if it was truly necessary, knowing deep down that it was time, but still thinking that, if given the chance, she might be okay to drive short distances.
At this time 6 months ago, her menu of what recipes she would remember and make reduced to approximately 10 things. She was becoming even pickier with foods we made, but we could still usually coax her to try things and eat it. If she did not recognize a food, she might eventually remember once she tried it.
At this time 6 months ago, she spent a lot of time doing fill-in puzzles and playing computer games.
AT THIS TIME, she has become completely inflexible. Even with my twin brother arriving in town for only 48 hours, she would not compromise her naps to spend family time with us. She will not miss a nap.
At this time, we would never even consider the possibility that she would be coherent enough to drive, even short distances.
At this time, she has about 5 things that she is still able to remember and make for dinner (and most of it involves the microwave or stovetop...no oven).
At this time, we don't even expect her to comprehend what most things are that we talk to her about (calculator, luggage, etc). We are certainly not shocked or surprised when she does not understand something. She does not comprehend most of what we say. She cannot hold down a 2-way conversation.
At this time, if she does not see you on a regular basis, she will not recognize who you are, even if you are family (although once she is told who you are, she will remember IF you are somebody that she is familiar with). You can read about that in my birthday post.
At this time, she spends a large amount of her time playing computer games. She is no longer able to do the fill-in puzzles; she says her brain is "too stupid".
At this time, we are looking to have people come over throughout the day while my dad is at work, as we question some safety issues of her being alone.
And that is the long answer to "how is your mom doing?"
These are two very common questions that I am asked when people inquire about my mom. I appreciate the care and concern from those around me, but I have to admit those are rather difficult questions to answer.
"How is your mom?"
Well...where do I start? The standard answer "fine" or "okay" is a far cry from how mom is. Do I take a pessimistic approach and answer "bad, she's doing bad."? Do I answer that she is constantly complaining of every ache and pain? Do I say that she is sleeping more and more, has difficulty getting up and going in the morning and is becoming more and more clumsy? There is no short answer to that question.
"Is she getting any worse?"
This is a progressive disease. It will only continue to get worse; it will not get better. It's hard, sometimes, to measure day-to-day how much "worse" she has become. The only way I can measure it is by looking back to how she was six months, or even a year ago.
AT THIS TIME LAST YEAR, mom was adopting somewhat of a rigid routine. However, it didn't control her life. When coming to our house for Sunday dinners, she would get a little antsy the closer it got to 8:00. She had adopted her 9:00 bedtime, but occassionally got to bed later. She took occassional naps but certainly did not revolve her day around her naps. In fact, this is a picture taken exactly one year ago from this month, when my brother was visiting for our birthday. We spent the day in San Diego as a family and visited the tide pools. She did complain about being hungry at lunch time and was tired by the end of the day. But she did not skip any family time for sleep. She was happy to spend time as a family. If I remember correctly, she even drove down there (with some family members in her car). It was this trip when we began to question her safety as a driver, but it wasn't until months later that she was "cancelled" (as she puts it) as a driver.
At this time last year, she was still decorating cakes. Cake decorating was one of her hobbies and talents. Last year, she was still helping me and my sister to decorate our kid's cakes. This is the last cake she decorated; it was for my nephew, Jeremy's birthday in September of 2011.
At this time last year, we were surprised to be learning that she was losing meanings of words and objects. At the pumpkin patch petting zoo, she did not recognize a goat (she insisted it was a dog) and that was surprising and concerning to us. She was starting to lose comprehension of what things were; for example, a calculator.
At this time last year, she was trying to get disability and took a leave from work. In fact, just last summer we were debating if she should leave work completely or return for the new school year (although we leaned towards her leaving permanently).
At this time last year, she was very picky with her food. Her list of what she could make for dinners (and remember what that food was) was becoming much shorter, but she still had about 15 things or so on her list of what she could make. She fussed over what we made, but would usually still eat whatever we made at family dinners.
At this time last year, she had difficulty remembering people she did not see regularly. Usually, after long explanations of who the person was, her memory would be sparked and she could put the pieces together (that was not always the case, though).
AT THIS TIME 6 MONTHS AGO, her schedule was becoming more rigid, but she still engaged in family activities over naps. We went to San Jose for Easter (you can read about that trip here). Although she was obsessive about her medication times and bed/wake-up times, she still got up early to go to brunch with us, and got up and spent the entire day at the zoo with us, with NO naps the entire weekend.
At this time 6 months ago, we were still somewhat surprised as we noticed some of the word comprehension she was losing. For example, when we booked her flight and she couldn't comprehend what a layover was or what luggage is, I was suprised and saddened, as I knew the disease was progressing. A year ago from now, she would have known what those things are.
At this time 6 months ago, the grandkid's birthday began (all the birthdays are from April on through November). She did not help, or show any interest in helping, with any birthday cakes.
At this time 6 months ago, she was "cancelled" as a driver. We questioned if it was truly necessary, knowing deep down that it was time, but still thinking that, if given the chance, she might be okay to drive short distances.
At this time 6 months ago, her menu of what recipes she would remember and make reduced to approximately 10 things. She was becoming even pickier with foods we made, but we could still usually coax her to try things and eat it. If she did not recognize a food, she might eventually remember once she tried it.
At this time 6 months ago, she spent a lot of time doing fill-in puzzles and playing computer games.
AT THIS TIME, she has become completely inflexible. Even with my twin brother arriving in town for only 48 hours, she would not compromise her naps to spend family time with us. She will not miss a nap.
At this time, we would never even consider the possibility that she would be coherent enough to drive, even short distances.
At this time, she has about 5 things that she is still able to remember and make for dinner (and most of it involves the microwave or stovetop...no oven).
At this time, we don't even expect her to comprehend what most things are that we talk to her about (calculator, luggage, etc). We are certainly not shocked or surprised when she does not understand something. She does not comprehend most of what we say. She cannot hold down a 2-way conversation.
At this time, if she does not see you on a regular basis, she will not recognize who you are, even if you are family (although once she is told who you are, she will remember IF you are somebody that she is familiar with). You can read about that in my birthday post.
At this time, she spends a large amount of her time playing computer games. She is no longer able to do the fill-in puzzles; she says her brain is "too stupid".
At this time, we are looking to have people come over throughout the day while my dad is at work, as we question some safety issues of her being alone.
And that is the long answer to "how is your mom doing?"
Tuesday, October 23, 2012
Barf Lady
I have a very distinct memory of a trip to the mountains that we took when I was a small child. I remember my cousin, William, went with us. I don't remember too many details about the day-I believe we were up there playing in the snow. But the ride home was an experience that has been seared into my memory. I suppose, at the time, it was a bit traumatic for my 7 year-old self, which is why I remember it so well.
As we made our way down the windy mountain road, William, who was sitting beside me, started feeling a little queasy. Without any warning, he began barfing, thankfully catching it in his hands. As soon as my mom realized what was happening, she pulled our Ford Aerostar van over to a turn-out on the side of the road. Somebody (I can't remember if it was my mom or someone else) quickly made their way to the sliding door with an empty paper bag, putting it under his hands as the contents dripped inside. I still remember the pungent smell of what he ate as I sat beside him and observed the scene. It was all I could do to not lose my own lunch. As soon as we were able, everyone was hopping out of the van to escape the stench of vomit.
This incident popped into my head again the other day as we drove to my sister's college graduation, which is about an hour drive from where we are at. My dad drove their SUV, with mom in the passenger seat, my sister, Christina, behind her, my Aunt Claudia behind my dad, and me in the middle. Over the past couple of years, mom has become very sensitive in the car. Aunt Claudia told us a similar story to what I've just shared, where my mom had thrown up on her (Claudia) in the car when they were kids. Apparently car sickness was a problem for her as a child, and it's a problem for her again, now, as she's reverting back to her childlike ways.
We've had incidences of mom throwing up in the car before, usually when it is a longer trip. My dad found a connection with her vomit and Slim Fast; it seems that when she drinks her morning Slim Fast and takes her medication along with it, it makes her more sensitive in the car. She throws up every time. My dad has forbidden her from drinking Slim Fast before a long trip. I know that might sound harsh, but remember that she is a child now. Skipping the Slim Fast works. She doesn't throw up if she doesn't drink the Slim Fast.
That particular morning, however, she was able to sneak in her Slim Fast. Sure enough, she got sick in the car. All the way to the graduation, she made burping and gagging noises and spit in a small plastic bag. I think I speak for everyone in the car when I say that she was psyching herself out; the more she thought about it, the more she exaggerated her sound effects and in essence she was making herself throw up. Out came the chocolate drink into the small bag. We passed another bag up to her, as the one she had was simply too small and was beginning to leak from the bottom. We told her to put the small bag inside the big bag.
"What?? I have a bag."
"Deana, it's leaking, put it inside the other bag," my dad tried to explain.
"Huh-uh. I have a bag. I'm okay," mom argued back.
We went back and forth with mom, her not comprehending that the bag had a leak. We eventually forced the bag under her small bag. All of the sudden, she took a tissue and began rubbing her leg and the seat underneath.
"How did this happen?" She said as she scrubbed the drippings from her seat.
By this point, humor was the only thing keeping us sane. Every time she gagged, it made us gag. She would hold up her bag to examine it's contents and occassionally sniff it; dad would tell her to put it down, and we, in the back seat, were rolling down our windows to catch a fresh breath of air and get our gag reflexes under control. Unfortunately for me, I was stuck in the middle seat and didn't get to partake in all that fresh air. At some points, mom's gaggging noises were so loud and obnoxious that I had to plug my ears and start (loudly) humming a song to drown out the sound effects. My sister was laughing at me. My Aunt was dry heaving. My dad went from reeling at the vomit, to joking, to laughing at all of us in the back seat with our weak stomachs. The scene was actually quite comical.
We made it to the graduation without barfing all over each other and sat there for over three hours, without food. By the time we were done, mom was very antsy, tired, hungry and had a headache. An empty, grumbling stomach does not help with car sickness. I tried suggesting a burger stop, but nobody listened to me. Bummer. The ride home was FAR worse than the drive there. She was burping, which turned into gagging, which turned into spitting and heaving, with small amounts of barf mixed in there, the ENTIRE drive home. To make matters worse, mom had left her barf bag in the car during the entire ceremony, despite my dad's reminders to take it out and find a trash can. You can imagine the smell.
As she began her heaving on the ride home, we quickly realized that were out of bags. My dad urged me to look around for something that would work. In the back seat behind me was a bag filled with puppy pads (for potty training puppies). Thank goodness my sister didn't clean up her things after she had borrowed the SUV! Ha ha. I hurriedly dumped out the puppy pads and molded one on the inside of the plastic bag that was holding them. We were joking and laughing as we presented mom her new barf bowl. She didn't understand the concept at first but eventually utilized my handicraft.
As we were approaching our freeway exit (to home), somehow mom got onto the subject of wanting to go on vacation together this summer to Nauvoo, Illinois. She wants to drive through Utah and Colorado, visiting family along the way, until we reach Nauvoo, altogether as one, big, happy family. The drive is almost 2,000 miles with over 26 hours spent in the car. My dad, sister and I looked at each other with amusement. That's just not going to happen.
Thankfully, the rest of us made it through 2 1/2 hours in the car without throwing up on each other. Poor mom.
As we made our way down the windy mountain road, William, who was sitting beside me, started feeling a little queasy. Without any warning, he began barfing, thankfully catching it in his hands. As soon as my mom realized what was happening, she pulled our Ford Aerostar van over to a turn-out on the side of the road. Somebody (I can't remember if it was my mom or someone else) quickly made their way to the sliding door with an empty paper bag, putting it under his hands as the contents dripped inside. I still remember the pungent smell of what he ate as I sat beside him and observed the scene. It was all I could do to not lose my own lunch. As soon as we were able, everyone was hopping out of the van to escape the stench of vomit.
This incident popped into my head again the other day as we drove to my sister's college graduation, which is about an hour drive from where we are at. My dad drove their SUV, with mom in the passenger seat, my sister, Christina, behind her, my Aunt Claudia behind my dad, and me in the middle. Over the past couple of years, mom has become very sensitive in the car. Aunt Claudia told us a similar story to what I've just shared, where my mom had thrown up on her (Claudia) in the car when they were kids. Apparently car sickness was a problem for her as a child, and it's a problem for her again, now, as she's reverting back to her childlike ways.
We've had incidences of mom throwing up in the car before, usually when it is a longer trip. My dad found a connection with her vomit and Slim Fast; it seems that when she drinks her morning Slim Fast and takes her medication along with it, it makes her more sensitive in the car. She throws up every time. My dad has forbidden her from drinking Slim Fast before a long trip. I know that might sound harsh, but remember that she is a child now. Skipping the Slim Fast works. She doesn't throw up if she doesn't drink the Slim Fast.
That particular morning, however, she was able to sneak in her Slim Fast. Sure enough, she got sick in the car. All the way to the graduation, she made burping and gagging noises and spit in a small plastic bag. I think I speak for everyone in the car when I say that she was psyching herself out; the more she thought about it, the more she exaggerated her sound effects and in essence she was making herself throw up. Out came the chocolate drink into the small bag. We passed another bag up to her, as the one she had was simply too small and was beginning to leak from the bottom. We told her to put the small bag inside the big bag.
"What?? I have a bag."
"Deana, it's leaking, put it inside the other bag," my dad tried to explain.
"Huh-uh. I have a bag. I'm okay," mom argued back.
We went back and forth with mom, her not comprehending that the bag had a leak. We eventually forced the bag under her small bag. All of the sudden, she took a tissue and began rubbing her leg and the seat underneath.
"How did this happen?" She said as she scrubbed the drippings from her seat.
By this point, humor was the only thing keeping us sane. Every time she gagged, it made us gag. She would hold up her bag to examine it's contents and occassionally sniff it; dad would tell her to put it down, and we, in the back seat, were rolling down our windows to catch a fresh breath of air and get our gag reflexes under control. Unfortunately for me, I was stuck in the middle seat and didn't get to partake in all that fresh air. At some points, mom's gaggging noises were so loud and obnoxious that I had to plug my ears and start (loudly) humming a song to drown out the sound effects. My sister was laughing at me. My Aunt was dry heaving. My dad went from reeling at the vomit, to joking, to laughing at all of us in the back seat with our weak stomachs. The scene was actually quite comical.
We made it to the graduation without barfing all over each other and sat there for over three hours, without food. By the time we were done, mom was very antsy, tired, hungry and had a headache. An empty, grumbling stomach does not help with car sickness. I tried suggesting a burger stop, but nobody listened to me. Bummer. The ride home was FAR worse than the drive there. She was burping, which turned into gagging, which turned into spitting and heaving, with small amounts of barf mixed in there, the ENTIRE drive home. To make matters worse, mom had left her barf bag in the car during the entire ceremony, despite my dad's reminders to take it out and find a trash can. You can imagine the smell.
As she began her heaving on the ride home, we quickly realized that were out of bags. My dad urged me to look around for something that would work. In the back seat behind me was a bag filled with puppy pads (for potty training puppies). Thank goodness my sister didn't clean up her things after she had borrowed the SUV! Ha ha. I hurriedly dumped out the puppy pads and molded one on the inside of the plastic bag that was holding them. We were joking and laughing as we presented mom her new barf bowl. She didn't understand the concept at first but eventually utilized my handicraft.
As we were approaching our freeway exit (to home), somehow mom got onto the subject of wanting to go on vacation together this summer to Nauvoo, Illinois. She wants to drive through Utah and Colorado, visiting family along the way, until we reach Nauvoo, altogether as one, big, happy family. The drive is almost 2,000 miles with over 26 hours spent in the car. My dad, sister and I looked at each other with amusement. That's just not going to happen.
Thankfully, the rest of us made it through 2 1/2 hours in the car without throwing up on each other. Poor mom.
Monday, October 15, 2012
The Walk to End Alzheimer's
Since my mom's diagnosis, I have been searching for ways to become involved in the dementia community and to help in some way. I received an email a few months ago, after leaving a comment on a blog, about a walk for Alzheimer's that was to take place near our home in Southern California. I thought about the idea and looked into the requirements to walk or start a team. I was a little concerned that I wouldn't be able to get a full team together. I was talking the idea over with my Aunt, who, without skipping a beat, said "I'll be there." Aunt Peggy and Uncle David live 5 1/2 hours away, so it was a big deal to me that they were so willing to come and support me in my efforts with the walk. I figured that if they could come all this way for the walk, surely other family members would jump on board and join the team. By the end of the next day, I signed up and formed "Team Dee" and had my first two team members: my Aunt Peggy and her husband, Uncle David. Soon after, my dad, sister, other family members and friends signed up and we began raising money for this great cause.
Last Saturday was the walk. I have been looking forward to it for months now. I was touched by the support of friends and family who made a point to join us in this walk. The grandkids were all there to show support for their grandma as well.
To get into the spirit of the walk, we each made a goal to raise $100 and wear our t-shirts. Most of us made it. Some came simply for support, which was appreciated as well. I made buttons for everyone to wear on their t-shirts. My friend, Stephani, made purple bows for the girls to wear. Everyone got bracelets to wear (which you can find in my dementia shop).
Because my dad, Aunt Peggy and I are a bit competitive by nature, we each raised over $500 (my dad raised close to $1,000) to become a part of the Champion's Club. We wore our medals proudly.
We had a lot of fun walking together for this great purpose. Our team was able to raise over $3,000 for the Alzheimer's Association in just a few short months, which put us on the top 5 fundraising families. We are already planning it out for next year. We were so set on earning our t-shirts, that we didn't realize (until it was too late) that teams are encouraged to make their own shirts. This was our first walk, so it's a learning curve. Next year we will be wearing our own shirts to wear proudly. And hopefully we can beat Pauline's Angels and take the award for the highest fundraising family team ;)
When you do a walk for other causes-diabetes, cancer, etc-the person you are walking for is generally aware that you are supporting them in the cause. That was the only downer of this walk; my mom had no clue what we were doing. Even if we had tried explaining it to her, she would not have grasped the concept. I don't need a pat on the back from my mom, I only want her to know just how much we love her and support her and are doing all we can to be involved and help in finding the cure for the dementia that has taken her away from us. I suppose at some point in time (in the next life) she will understand what we are doing for her. In the meantime, it feels good to be involved in something that is bigger than ourselves and to join forces with the millions of other people affected by this horrific disease.
Last Saturday was the walk. I have been looking forward to it for months now. I was touched by the support of friends and family who made a point to join us in this walk. The grandkids were all there to show support for their grandma as well.
To get into the spirit of the walk, we each made a goal to raise $100 and wear our t-shirts. Most of us made it. Some came simply for support, which was appreciated as well. I made buttons for everyone to wear on their t-shirts. My friend, Stephani, made purple bows for the girls to wear. Everyone got bracelets to wear (which you can find in my dementia shop).
Because my dad, Aunt Peggy and I are a bit competitive by nature, we each raised over $500 (my dad raised close to $1,000) to become a part of the Champion's Club. We wore our medals proudly.
We had a lot of fun walking together for this great purpose. Our team was able to raise over $3,000 for the Alzheimer's Association in just a few short months, which put us on the top 5 fundraising families. We are already planning it out for next year. We were so set on earning our t-shirts, that we didn't realize (until it was too late) that teams are encouraged to make their own shirts. This was our first walk, so it's a learning curve. Next year we will be wearing our own shirts to wear proudly. And hopefully we can beat Pauline's Angels and take the award for the highest fundraising family team ;)
When you do a walk for other causes-diabetes, cancer, etc-the person you are walking for is generally aware that you are supporting them in the cause. That was the only downer of this walk; my mom had no clue what we were doing. Even if we had tried explaining it to her, she would not have grasped the concept. I don't need a pat on the back from my mom, I only want her to know just how much we love her and support her and are doing all we can to be involved and help in finding the cure for the dementia that has taken her away from us. I suppose at some point in time (in the next life) she will understand what we are doing for her. In the meantime, it feels good to be involved in something that is bigger than ourselves and to join forces with the millions of other people affected by this horrific disease.
Friday, October 12, 2012
The Changes of Life
When I was in high school, I was a part of something amazing: The Rubidoux High School Madrigals, under the direction of Ms. Staci Della-Rocco. Ms. D (as we affectionately called her) was an extraordinary choir teacher. She was passionate about music and was exceptional at teaching kids music. I know choir has a bad rap in some schools; at Rubidoux kids were lining up to join choir, from football players, cheerleaders and jocks to student body...being in Ms. D's choir was anything but "nerdy".
And we were good. Ms. D had the innate ability to take any Joe Schmo and turn them into a singer. Ms. D was a perfectionist and her choirs were a direct reflection of her as a choir director, and so she pushed us to perfection. Going to Ms. D's concerts were nothing short of magical; her music touched you at your very core and you could feel the power and influence through her singers. Her concerts became so popular, in fact, that if you did not arrive early, you would not have a place to sit.
Belonging to madrigals meant you belonged to another family. We were close. To this day, the friends I keep in contact with from high school are my friends from either church or choir. We were always together; we performed nearly 100 times a year at various clubs and events, particularly at Christmas time. By the time Christmas day rolled around, our voices were hoarse from so many performances. Her music, and performing with the madrigals, is what put me in the Christmas spirit. Every year we went on tour somewhere exciting: Hawaii and Disneyworld were among my favorite trips. Ms. D was a teacher of music, but she taught us so much more than that. She taught us about friendship and love, about acceptance and tolerance, commitments and responsibilities, self confidence. Part of who I am today can be linked to Ms. D and her influence in my life. After graduation, we remained very close friends.
Three years ago, Ms. D passed away at the age of 51 after a long and brave battle of breast cancer. She was the first person who passed away that I was very close to. It was difficult for me and for all who have been touched by her. Over 800 people came to honor her at her funeral (and hundreds more who would've loved to be there, but distance kept them from attending). It was a devastating loss for the school, the community and for all of those who have become friends with her. A year after her passing, the High School named and dedicated their new theatre after Ms. D. I couldn't be more proud and can't think of anyone who deserves this great honor more than Ms. D.
Losing Ms. D has been very hard for me, especially at the holidays. I miss her. I miss her music. In fact, Christmas just isn't the same without her concerts, downtown caroling and musical cheer. Even 3 years later, we all still feel the void.
This week, my adopted-daughter had a choir concert. Since we moved back to the area I grew up in, she attends the new high school in our area, which is where Ms. D finished her teaching career. It has been difficult for a new teacher to come and take over the vocal program, as Ms. D was a legend in this community and at this school. They have already gone through one teacher; they are now on their second. It is impossible for any choir teacher to fill Ms. D's shoes, and the program has been struggling. I had mixed emotions and I attended Maurina's concert. I am so happy to see her involved in the music program, as it is obviously near and dear to my heart. I didn't realize how hard it would be to sit through the concert, the concert where my beloved Ms. D no longer directed.
The kids did a great job and I am very proud of Maurina. But a sense of sadness washed over me as I reminisced about the greatness of what once was. The room was half empty. The kids were not uniform in their appearance. The dynamics and the passion was absent. The magic is gone.
As I sat in the audience, thinking of Ms. D, I reflected a lot about life and the changes it brings. I miss Ms. D. I miss that magical time in my life. Not that I'd want to go back, but it was a time when life was simple and happy; a time when my biggest stress was a math test or whether I'd get asked to the prom. It was a time when all the people I loved were still here: Ms. D, my grandma and grandpa, my mom. As I thought back to that time in my life, I thought a lot about my mom and the person that she was back then. She was happy and outgoing and loved life. She supported us in all we did; she never missed a concert and she always gleamed with pride watching me and my siblings perform our music. Oh how life changes.
After a brief intermission, the choir director took a moment to recognize that October is breast cancer awareness month. He spoke of Ms. D and mentioned the theatre which has been named after her. He asked us all to take a moment of silence for her and her memory.
That is when the tears began rolling down my cheek. I cried for Ms. D. I cried for my grandparents. I cried for my mom. I cried for the difficult changes that life has brought. What I would give to have simplicity and happiness again, to be rid of the sadness that lingers when we lose the people we love.
I say it all the time: make the most of today. Make all the memories you can, while you can. You never know when the people you love will be gone. And when that time comes, all you have left are the memories of what used to be. Make them count.
And we were good. Ms. D had the innate ability to take any Joe Schmo and turn them into a singer. Ms. D was a perfectionist and her choirs were a direct reflection of her as a choir director, and so she pushed us to perfection. Going to Ms. D's concerts were nothing short of magical; her music touched you at your very core and you could feel the power and influence through her singers. Her concerts became so popular, in fact, that if you did not arrive early, you would not have a place to sit.
Belonging to madrigals meant you belonged to another family. We were close. To this day, the friends I keep in contact with from high school are my friends from either church or choir. We were always together; we performed nearly 100 times a year at various clubs and events, particularly at Christmas time. By the time Christmas day rolled around, our voices were hoarse from so many performances. Her music, and performing with the madrigals, is what put me in the Christmas spirit. Every year we went on tour somewhere exciting: Hawaii and Disneyworld were among my favorite trips. Ms. D was a teacher of music, but she taught us so much more than that. She taught us about friendship and love, about acceptance and tolerance, commitments and responsibilities, self confidence. Part of who I am today can be linked to Ms. D and her influence in my life. After graduation, we remained very close friends.
Three years ago, Ms. D passed away at the age of 51 after a long and brave battle of breast cancer. She was the first person who passed away that I was very close to. It was difficult for me and for all who have been touched by her. Over 800 people came to honor her at her funeral (and hundreds more who would've loved to be there, but distance kept them from attending). It was a devastating loss for the school, the community and for all of those who have become friends with her. A year after her passing, the High School named and dedicated their new theatre after Ms. D. I couldn't be more proud and can't think of anyone who deserves this great honor more than Ms. D.
Losing Ms. D has been very hard for me, especially at the holidays. I miss her. I miss her music. In fact, Christmas just isn't the same without her concerts, downtown caroling and musical cheer. Even 3 years later, we all still feel the void.
This week, my adopted-daughter had a choir concert. Since we moved back to the area I grew up in, she attends the new high school in our area, which is where Ms. D finished her teaching career. It has been difficult for a new teacher to come and take over the vocal program, as Ms. D was a legend in this community and at this school. They have already gone through one teacher; they are now on their second. It is impossible for any choir teacher to fill Ms. D's shoes, and the program has been struggling. I had mixed emotions and I attended Maurina's concert. I am so happy to see her involved in the music program, as it is obviously near and dear to my heart. I didn't realize how hard it would be to sit through the concert, the concert where my beloved Ms. D no longer directed.
The kids did a great job and I am very proud of Maurina. But a sense of sadness washed over me as I reminisced about the greatness of what once was. The room was half empty. The kids were not uniform in their appearance. The dynamics and the passion was absent. The magic is gone.
As I sat in the audience, thinking of Ms. D, I reflected a lot about life and the changes it brings. I miss Ms. D. I miss that magical time in my life. Not that I'd want to go back, but it was a time when life was simple and happy; a time when my biggest stress was a math test or whether I'd get asked to the prom. It was a time when all the people I loved were still here: Ms. D, my grandma and grandpa, my mom. As I thought back to that time in my life, I thought a lot about my mom and the person that she was back then. She was happy and outgoing and loved life. She supported us in all we did; she never missed a concert and she always gleamed with pride watching me and my siblings perform our music. Oh how life changes.
After a brief intermission, the choir director took a moment to recognize that October is breast cancer awareness month. He spoke of Ms. D and mentioned the theatre which has been named after her. He asked us all to take a moment of silence for her and her memory.
That is when the tears began rolling down my cheek. I cried for Ms. D. I cried for my grandparents. I cried for my mom. I cried for the difficult changes that life has brought. What I would give to have simplicity and happiness again, to be rid of the sadness that lingers when we lose the people we love.
I say it all the time: make the most of today. Make all the memories you can, while you can. You never know when the people you love will be gone. And when that time comes, all you have left are the memories of what used to be. Make them count.
Tuesday, October 9, 2012
My Birthday Weekend
Thirty-one years (and 2 days) ago, my mom gave birth to a beautiful set of twins. See, aren't they beautiful? ;)
For every year of my life, with the exception of 2, I have celebrated my birthday with my twin brother, Joe. The first birthday we missed together was our 18th, when I was 3 states away in college. The following year, however, Joe drove 16 hours straight through the night to visit me at college to spend our 19th birthday together. The other birthday missed was a couple of years ago, as he was living in Florida and had planned for the holidays (and couldn't make both birthday and holidays work). Our birthday just isn't complete if we don't have each other to celebrate with. It's a twin thing.
A few years ago, Joe moved across the country, to Florida. It's been hard having him live so far away. He's been missing out on family parties and Sunday dinners and it just isn't complete without him here. On the bright side, he has continued to make it out every year for our birthday. It's something I look forward to every year; to celebrate with my "womb mate".
This year, there was a slight change of plans. A few weeks ago, Joe was interviewed and hired for a job in Arizona, which is only a 5 hour drive from where we live (he is taking this job while processing for another job which could put him back in California...the processing time on that job is a year). At this point in our lives, I think Joe misses the family gatherings and we are learning all too well that our time with one another is precious. With him moving close, we will be able to see each other at least monthly and be there for special occassions. Last week, as well as this week, he is in Arizona for job training. With the upcoming moving expenses, he informed me that he would be unable to make it out for our birthday. Obviously I was terribly bummed that he couldn't make it. Normally I'd hassle him a little and give him the twin guilt that we simply can't miss our birthday together, but given the circumstances, I didn't push the issue. I know he's giving up a lot to come here and I am ecstatic that he will be living closer. He will be here right in time for Thanksgiving.
As we talked about the weekend and my birthday, my husband insisted that he wanted to take me out to breakfast. 'Why breakfast?' I thought. He knows I'm not a morning person. Nevertheless, I could see that my sweet hubby really wanted to celebrate with the family by taking me out to breakfast, so I went along with it. Imagine my surprise, when I walked into IHOP and saw my brother sitting next to my dad in the waiting area! I was so excited to see him and giddy that they were able to surprise me without even one suspicion on my part (anyone who knows me well knows it is extremely difficult to surprise me...I'm suspicious by nature, ha ha).
As happy as I was to see Joe, I was a little bummed that Natalie and Adri couldn't make it (his wife and adorable daughter). Again, they have a lot of expenses to pay for with the upcoming move, and they just couldn't make it work. After breakfast, Jeff and I had an errand to run, as did my dad and brother, so they said they would meet me at my house when they were done. As we pulled into the driveway at my house, I saw Joe's rental car pull in behind us. I was caught off guard when I saw Natalie sitting in the front seat. Not only did they surprise me once, but they got me twice without me even suspecting a thing!! (I must be losing it in my old age!!)
That was a really long background story for this post. I suppose I wanted to illustrate how close we are as a family and how much it meant to have Joe here for our birthday. We miss him terribly when he's away. It was tough on my mom when he left as well. So how did she react when she saw him?
Joe arrived at my parent's house late Friday night. As you probably know from reading my other posts, mom's bedtime is 9:00. Joe got in around 10:00, and at a time like this, who cares about bedtime? Mom was told that Joe was there and she refused to get out of bed.
"I'm such a plain Jane without my make-up, I don't want him to see me!"
This has become the norm with her; she doesn't want anyone to see her without make-up because she is a "Plain Jane". I usually pay no attention to her objections and remind her that I have seen her my entire life without make-up. Joe did the same. He went back to her room, despite her objections, and visited with her as she babbled on and on about her "weird" looks and her "severe" health problems.
The next morning, she did not join us for breakfast. It was too early for her to get out of bed and get ready to go. I, of course, expected this. But with Joe there, I a little surprised that she did not take advantage of the short time we had with him.
After Natalie arrived, I took her out to grab a bite to eat and to stop over at my parent's house to say hi to my mom. Mom didn't know yet that Natalie was there. We wanted to see if she would recognize her, although deep down I already knew what the outcome would be. I walked into the living room and called for my mom.
"I'm back here, I can't come right now," she called back. Despite my insistance, she wouldn't come. I knew exactly where she was: at her computer playing a game. Natalie and I walked back to the room and stood in the doorway, side by side. Mom turned around and looked at me and her eyes kept glancing over at Natalie as she rapidly spoke to me,
"What I was wondering is if we could take you later today for dinner at Miguel's with Joe here, too, for...to celebrate your birthday too, we could eat at Miguel's because it's so delicious and Joe would really like that too...yeah..."
I nodded my head and then turned my attention to Natalie.
"Mom, do you remember...my friend?"
Mom looked blankly at Natalie and then slightly shook her head.
"No..."
"You don't remember who this is Mom? Natalie?" I expected this, but it was still hard to process. I felt a small lump form in my throat. I could see the sadness in Natalie's eyes as well, as she fought the tears from surfacing. Mom tried to connect the dots.
"Deana," Natalie said, "It's me, Natalie. Joe's wife."
"Oh, Natalie. Yeah," she said, seemingly embarassed at having forgotten her daughter-in-law. "Yeah I know Natalie, I just didn't know she was here so I didn't know it was her."
It makes sense. With this form of dementia, if they don't see you on a regular basis, they cannot connect your face and name. Once she was prompted, she recognized Natalie again (this isn't the case for everyone she sees...but she is still familiar with the idea of family at this point...if that makes sense). I wonder if she would have recognized Joe had she not already known he was coming?
Later that afternoon, we had some family time touring March Air Force Base (an airfield museum). Try as we might to get my mom to come with us for some family fun, she would not come. It was her naptime. She joined us later that evening for birthday dinner at- where else -Miguel's.
The next morning, my dad came over to my house with my mom. Joe and Natalie had decided to spend the night at our place and we had planned to have a family BBQ later on that afternoon for our birthday. It was around 11:30 when they arrived. Shortly after arriving, my dad had to take her home because it was almost noon, which is lunch time. I was upstairs, primping, in the brief time they were over so I didn't even realize they had left. After the fact, I told my dad she could've eaten lunch at my house, but mom wanted to be at her own house with her own food. Dad returned shortly before 1:00 without my mom. She refused to come because it was her naptime. My sister, who was working until 2:30 on that day, stopped by to pick mom up later on in the afternoon on her way over.
We took advantage of the family time and took some pictures; mom with her twins and a full family shot with all the kids and grandkids (the grandkids are taking over!!)
I admit that I felt frustrated with mom; I think we all felt unsettled with the way she had behaved over the weekend. Joe had traveled miles and hours to see us; he hadn't been here in over 4 months yet she spent more time alone at home than she did with us as a family. Logically we know that we can't blame her, for it isn't truly "mom" that is behaving this way. It is the disease. So we know that we can't be mad at her for choosing to pull away from our precious family time, but it still hurts all the same. She is slipping away from us day by day, little by little. For those of us who are around regularly, the changes seem more gradual. For Joe and Natalie, whose visits are few and far between, the changes are much more noticable. While I enjoyed my short time with my brother and his family enormously, I miss my mom's presence. In the blink of an eye, our family has changed. We cannot bring back the times we once had and enjoyed together. One thing I have learned is to never pass up an opportunity to spend time with the people you love.
For every year of my life, with the exception of 2, I have celebrated my birthday with my twin brother, Joe. The first birthday we missed together was our 18th, when I was 3 states away in college. The following year, however, Joe drove 16 hours straight through the night to visit me at college to spend our 19th birthday together. The other birthday missed was a couple of years ago, as he was living in Florida and had planned for the holidays (and couldn't make both birthday and holidays work). Our birthday just isn't complete if we don't have each other to celebrate with. It's a twin thing.
A few years ago, Joe moved across the country, to Florida. It's been hard having him live so far away. He's been missing out on family parties and Sunday dinners and it just isn't complete without him here. On the bright side, he has continued to make it out every year for our birthday. It's something I look forward to every year; to celebrate with my "womb mate".
This year, there was a slight change of plans. A few weeks ago, Joe was interviewed and hired for a job in Arizona, which is only a 5 hour drive from where we live (he is taking this job while processing for another job which could put him back in California...the processing time on that job is a year). At this point in our lives, I think Joe misses the family gatherings and we are learning all too well that our time with one another is precious. With him moving close, we will be able to see each other at least monthly and be there for special occassions. Last week, as well as this week, he is in Arizona for job training. With the upcoming moving expenses, he informed me that he would be unable to make it out for our birthday. Obviously I was terribly bummed that he couldn't make it. Normally I'd hassle him a little and give him the twin guilt that we simply can't miss our birthday together, but given the circumstances, I didn't push the issue. I know he's giving up a lot to come here and I am ecstatic that he will be living closer. He will be here right in time for Thanksgiving.
As we talked about the weekend and my birthday, my husband insisted that he wanted to take me out to breakfast. 'Why breakfast?' I thought. He knows I'm not a morning person. Nevertheless, I could see that my sweet hubby really wanted to celebrate with the family by taking me out to breakfast, so I went along with it. Imagine my surprise, when I walked into IHOP and saw my brother sitting next to my dad in the waiting area! I was so excited to see him and giddy that they were able to surprise me without even one suspicion on my part (anyone who knows me well knows it is extremely difficult to surprise me...I'm suspicious by nature, ha ha).
As happy as I was to see Joe, I was a little bummed that Natalie and Adri couldn't make it (his wife and adorable daughter). Again, they have a lot of expenses to pay for with the upcoming move, and they just couldn't make it work. After breakfast, Jeff and I had an errand to run, as did my dad and brother, so they said they would meet me at my house when they were done. As we pulled into the driveway at my house, I saw Joe's rental car pull in behind us. I was caught off guard when I saw Natalie sitting in the front seat. Not only did they surprise me once, but they got me twice without me even suspecting a thing!! (I must be losing it in my old age!!)
That was a really long background story for this post. I suppose I wanted to illustrate how close we are as a family and how much it meant to have Joe here for our birthday. We miss him terribly when he's away. It was tough on my mom when he left as well. So how did she react when she saw him?
Joe arrived at my parent's house late Friday night. As you probably know from reading my other posts, mom's bedtime is 9:00. Joe got in around 10:00, and at a time like this, who cares about bedtime? Mom was told that Joe was there and she refused to get out of bed.
"I'm such a plain Jane without my make-up, I don't want him to see me!"
This has become the norm with her; she doesn't want anyone to see her without make-up because she is a "Plain Jane". I usually pay no attention to her objections and remind her that I have seen her my entire life without make-up. Joe did the same. He went back to her room, despite her objections, and visited with her as she babbled on and on about her "weird" looks and her "severe" health problems.
The next morning, she did not join us for breakfast. It was too early for her to get out of bed and get ready to go. I, of course, expected this. But with Joe there, I a little surprised that she did not take advantage of the short time we had with him.
After Natalie arrived, I took her out to grab a bite to eat and to stop over at my parent's house to say hi to my mom. Mom didn't know yet that Natalie was there. We wanted to see if she would recognize her, although deep down I already knew what the outcome would be. I walked into the living room and called for my mom.
"I'm back here, I can't come right now," she called back. Despite my insistance, she wouldn't come. I knew exactly where she was: at her computer playing a game. Natalie and I walked back to the room and stood in the doorway, side by side. Mom turned around and looked at me and her eyes kept glancing over at Natalie as she rapidly spoke to me,
"What I was wondering is if we could take you later today for dinner at Miguel's with Joe here, too, for...to celebrate your birthday too, we could eat at Miguel's because it's so delicious and Joe would really like that too...yeah..."
I nodded my head and then turned my attention to Natalie.
"Mom, do you remember...my friend?"
Mom looked blankly at Natalie and then slightly shook her head.
"No..."
"You don't remember who this is Mom? Natalie?" I expected this, but it was still hard to process. I felt a small lump form in my throat. I could see the sadness in Natalie's eyes as well, as she fought the tears from surfacing. Mom tried to connect the dots.
"Deana," Natalie said, "It's me, Natalie. Joe's wife."
"Oh, Natalie. Yeah," she said, seemingly embarassed at having forgotten her daughter-in-law. "Yeah I know Natalie, I just didn't know she was here so I didn't know it was her."
It makes sense. With this form of dementia, if they don't see you on a regular basis, they cannot connect your face and name. Once she was prompted, she recognized Natalie again (this isn't the case for everyone she sees...but she is still familiar with the idea of family at this point...if that makes sense). I wonder if she would have recognized Joe had she not already known he was coming?
Later that afternoon, we had some family time touring March Air Force Base (an airfield museum). Try as we might to get my mom to come with us for some family fun, she would not come. It was her naptime. She joined us later that evening for birthday dinner at- where else -Miguel's.
The next morning, my dad came over to my house with my mom. Joe and Natalie had decided to spend the night at our place and we had planned to have a family BBQ later on that afternoon for our birthday. It was around 11:30 when they arrived. Shortly after arriving, my dad had to take her home because it was almost noon, which is lunch time. I was upstairs, primping, in the brief time they were over so I didn't even realize they had left. After the fact, I told my dad she could've eaten lunch at my house, but mom wanted to be at her own house with her own food. Dad returned shortly before 1:00 without my mom. She refused to come because it was her naptime. My sister, who was working until 2:30 on that day, stopped by to pick mom up later on in the afternoon on her way over.
We took advantage of the family time and took some pictures; mom with her twins and a full family shot with all the kids and grandkids (the grandkids are taking over!!)
I admit that I felt frustrated with mom; I think we all felt unsettled with the way she had behaved over the weekend. Joe had traveled miles and hours to see us; he hadn't been here in over 4 months yet she spent more time alone at home than she did with us as a family. Logically we know that we can't blame her, for it isn't truly "mom" that is behaving this way. It is the disease. So we know that we can't be mad at her for choosing to pull away from our precious family time, but it still hurts all the same. She is slipping away from us day by day, little by little. For those of us who are around regularly, the changes seem more gradual. For Joe and Natalie, whose visits are few and far between, the changes are much more noticable. While I enjoyed my short time with my brother and his family enormously, I miss my mom's presence. In the blink of an eye, our family has changed. We cannot bring back the times we once had and enjoyed together. One thing I have learned is to never pass up an opportunity to spend time with the people you love.
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