Tuesday, December 31, 2013

Christmas 2013

Another year has gone by. Christmas wasn’t the worst case scenario with mom; she remembered what the 25th represented. But the changes in mom were very obvious and we believe this is likely the last year that mom will remember what Christmas is. We decided to just make the most of what we have and I tried really hard this year to adopt an attitude of positivity and focus on what we have rather than be down about what we’ve lost.

Last year, mom was obsessed with continuing her family tradition of gathering her family together for Christmas Eve. This year, we heard not one word about Christmas Eve. As the 24th approached, we made plans to have a more intimate celebration with only my siblings (and their families) and my parents (rather than the usual extended family celebrations from the past). On Christmas Eve, we gathered at mom and dad’s house with our traditional holiday foods and gifts. Mom didn’t understand why we were there.

“Christmas is tomorrow, the 25th,” she said.

We tried to explain Christmas Eve, but the memories have seemingly disappeared. It took a lot of coaxing and convincing to get mom to sit down and open presents with us. In spite of the sad reality of the situations, we tried to find the humor and the bright spots of the night. Mom was really cute (and funny) when she opened her gifts. With each gift, she looked at it as if it were a foreign object, and then once she figured out what it was, she hurried off to put it in her room where it belonged. 

“What is this, what is this? Huh? This is the lip stuff, yeah? The lip, the Mar-the Mary-the Mary Kay stuff too for the lips? Yeah? Oh good, oh good I needed this too, that’s really good,” she said when opening my sister’s gift of the Mary Kay Satin Lips set, which she’d been nagging me for for the past two weeks. Then she stood up and hurried away to her room to put it in the little basket on her counter, beside her empty tubes of lip cream.

Each time she took her presents to their new homes, it was hard to draw her back to the living room to open some more. I was so excited to give her my gift. I got the idea during mom’s hospital stay in the summer. Her room was cold and the blankets were thin; mom was freezing the whole time. I wished that she had a nice blanket she could bring along, and so my idea for her Christmas gift was formed. That month following her hospital stay, my sister-in-law and I took all of the grandkids for a photo shoot. I selected some beautiful fabric and immediately got to work. This gift would be one-of-a-kind and I had hoped mom would love and appreciate it.

 560 By the time it was my turn to give mom my gift, she was antsy and did not want to sit down. I was able to get her next to the couch where she stood and opened my box. She held the blanket in her hand and said,

“What is this?”

I told her it was a blanket.

“A blanket, I’m confused, what’s a blanket?”

I explained to her the purpose of a blanket and pointed to the pictures of the grandchildren as she still tried to piece together the clues of what her gift was.

“Oh a blanket,” she interrupted, “the thing you put on your bed to keep warm? Is that what it is, it goes on my bed?” she asked.

“Yes mom, that’s right,” I said, holding her back for just a minute longer to show her again the pictures of the kids. She was ready to put the blanket in it’s place.

 20131220_122546 “See here, mom? These are the kids, this is Raelynn right here and her name is right next to it. And here is Ryder,” I explained, as I pointed to both the names I had embroidered as well as the pictures of each grandchild.

The lightbulb finally went on.

“Oh the kids, all the kids are on here too, all of the kids are here?” she asked, glancing momentarily at the pictures.

20131220_122726 “Yes, all the grandkids,” I replied, smiling that she had made the connection.

“Ok, I’m gonna go now,” she said, motioning towards the hallway with her blanket.

Mom took the blanket back to her bedroom and tossed it onto her bed. My sister found her back there, sitting on her bed, next to her blanket, waiting to take her medicine (which, by the way, wasn’t scheduled to be taken for another hour).

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That was the extent of our celebrating with mom. On Christmas morning, we have a traditional breakfast which dates back to when my mom was a kid; her mom created this tradition. Mom refused to come out of her room to join us. She did come over to my house later in the day for Christmas dinner with my dad’s side of the family. She brought herself a sandwich for dinner and sat at the computer. When my Aunts gave her gifts, she told them that she didn’t know what those things were and that she didn’t need them. My Aunts, understanding mom’s condition, just chuckled and gave her hugs.

Though the memories we are able to create with mom are becoming less and less, I embrace the time and the memories we do have with mom. Though it’s not the ideal situation, I do think that someday we will look back on this Christmas Eve with fondness in our hearts.

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Wednesday, December 11, 2013

Oh Christmas Tree

In my last post, I voiced my concerns about whether or not mom would remember Christmas. So far this year, she has forgotten every single holiday; though she does remember most everyone’s birthdays and anniversaries. Last year, she was very selective about what she did remember about Christmas and she didn’t participate in many of the festivities. So it goes without saying that we’ve been apprehensive to see what this Christmas season brings.

A couple weeks ago, the weekend after Thanksgiving to be exact, my siblings and I went over to mom and dad’s house to put up their Christmas tree. Mom was in her usual place: at her computer. We weren’t sure what kind of fuss she might make when she saw a tree in her living room. Would she know why it was there?

tree By the time we had all finished decorating the tree, mom strolled through the living room on her way to the kitchen. She didn’t notice the tree at all. I drew her attention to it and asked her if she remembered why we put up a Christmas tree.

“Oh yeah, there were those things too that had the pictures of the kids on it too, the grandkids too and also you kids too when you were kids and I always liked to put those on so good, too,” she responded.

She was referring to the many ornaments that have been made over the years bearing our pictures on them. Mom remembered!!

Over the past week and a half, we’ve talked about Christmas with her, as a reminder and preparation of the upcoming holiday. She has told my dad that she needs to go to Bath & Body Works (where else??) to get my sister’s present. When I was over on Monday, I was talking to her about Christmas, asking her if she remembered, and she commented,

“It’s on the 25th too.”

She was also a little annoyed that all of her holiday decorations did not make it out this year; particularly her nativity set.

“I told your dad to get that thing down too, it’s way up high, that thing with the thing and Je-Jesus too…”

I don’t know if she will remember all of the family traditions…the Christmas breakfast that her mom started with her as a child, the Christmas goodies. I don’t know she’ll venture out Christmas shopping this year with me or if she’ll even understand the concept of presents. But she remembers the most important part about Christmas-that it’s all about Jesus!

I go into this holiday knowing that it is very likely the very last Christmas that mom is aware of. It can be depressing to think about, and there’s still so much she’s unaware of; I miss her especially at this time of year. But after my “Blue Christmas” last year, I’m determined to make the best of the situation, enjoy the moments we have and make her last Christmas memorable for all of us.

Monday, December 2, 2013

Thanksgiving

The holidays are always tough when you’ve lost/are losing someone you love. Last year, my mom was very disconnected from all of the holidays festivities. BUT…at least she knew what they were. She had at least some faint memory of Thanksgiving. This year, mom had absolutely no idea what Thanksgiving was.

I tried several times prior to Thanksgiving to prompt her and spark some kind of memory about the upcoming holiday. I talked about it, explained the food, even showed her the date on her calendar. When I showed up to her house on Monday with all of the kids (who were out on Thanksgiving break), mom was confused as to why they were out of school. I tried to tell her that it was because of the holiday that week, to which she responded,

“Holiday, what? What do you mean by holiday, what are you talking about holiday. I don’t know what you’re saying.”

I suppose deep down I knew that it wasn’t going to click. I suppose I just wasn’t ready to accept it. I held hope that once all the family arrived and once she saw all of the foods that it might click. I spent the early afternoon at my in-law’s house before heading over to my parent’s house around 5:00 Thanksgiving evening. Mom, of course, was in the office, playing her computer game. I asked my family if it had finally “clicked” that it was Thanksgiving; as suspected, mom was oblivious. In fact, she couldn’t quite figure out why everybody was over in her house, though she said it was “real good” that some relatives were around often to visit. She didn’t recognize my Aunt, who she sees a couple of times a month. She was confused about who my sister was (her darker hair, recently dyed, has mom a bit confused).

I went to say hi to mom in the computer room. I sat down beside her and she asked why I was there.

“It’s a holiday today mom. It’s Thanksgiving. It’s that holiday right before Christmas when you eat all the good foods…remember?”

“Hmm? Holiday what? I’m confused what you’re saying, holiday. My stupid brain, I don’t know what you all keep saying holiday. My brain is so stupid.”

Try as I might, I could not bring her back and help her to remember Thanksgiving. The concept is gone. Thanksgiving with mom is gone.

Last year, the holidays were hard. I felt really blue. It was the first holiday season that I really didn’t have my mom there to help me with the food, the planning, etc. It was the first holiday season that we faced knowing mom had dementia. But at least she knew what the holidays were.

Seasons change. Another year has come and gone and dementia has taken more away from us. While we celebrate what we are thankful for, I am thankful to still have my mom. But I sure do miss my mom and the way life once was.

I wonder now…will she remember Christmas?

Monday, November 25, 2013

Missing Grandma

My mom has always looked forward to the day she would be a grandma. I remember when I was younger- first, dating my husband, and then engaged, and eventually married; mom was excited at the prospect of someday becoming a grandma. My grandma was the absolute best grandma a kid could ever ask for, with sleepovers and baking dates, back scratches and stories of her younger days…I am very blessed to have such great memories with my grandma. My mom was anxious to follow in her own mom’s footsteps and was determined that she would be the “favorite” grandma.

When the grandkids finally started to come, they were my mom’s greatest pride. She had pictures hanging on her filing cabinets and on her desk at work. She loved showing off her babies whenever we stopped by for a visit. She always bought them little gifts and loved spending time with them. She made up little songs for them and had lots of toys and activities for our visits. There was no doubt how much my mom loved her grandkids.

I think about this often. It’s hard to not feel “cheated” sometimes for my kids. It makes me so sad to know that they will never have the grandma experience that I had. The bond I had with my grandma was so strong…my kids will never know what that is like. They will never have a grandma for sleepovers, to bake goodies with, to take them out on little dates. They will never know the woman that my mom once was. They were too young to remember mom before the dementia days.

Last night, I was tucking my little girl into her bed and I laid down beside her. We talked about my mom and she pointed out a tender moment from earlier that evening, when my mom had stood behind me at the dinner table and scratched my back for a brief moment. How sweet that moment was. Somehow, my perceptive little girl picked up on that and could tell that I longed to have my mommy back. I expressed to her how much I missed my mom. Together, we shed a few tears as I told her how very much her grandma loved her and how overjoyed she was when she became her grandma. I reassured her that it was only the dementia that prevented her from being the best grandma in the universe. I told her to look for those small moments of love and to cherish them; a smile, a hug, a push on the swing. Hold those memories tight and know that your grandma loves you.

Earlier that evening (at family dinner), I was standing at my kitchen sink, preparing dinner, and I peered out the window to the backyard. I saw my mom sitting on a swing beside my 2 year old. Every now and then she would give him a little push and they looked like two friends, swinging side by side, smiling as they flew up and down. Swinging just happens to be one of my son’s favorite things. How happy I was that he was able to have that moment with his grandma. My brother-in-law, who was barbequing out back, noticed this sweet moment too and captured it on video with his phone. I thought I would share [sorry it’s not great quality…but you get the idea].

Friday, November 22, 2013

Mom’s Beauty Routine

hpqscan0001I always thought my mom was pretty. She always took great pride in her appearance. I think a lot of that was due to her insecurities about her fair skin, her red hair, her blonde eyebrows and eyelashes. She never left the house without a fresh face of make-up on and her hair perfectly put together
(unless it was to pick us up from early morning seminary…in which case she wore her sunglasses). She always looked beautiful and nicely put together.

I remember my mom once telling me, when I was a kid, that she wanted to look good for my dad. I always thought it was sweet that even after years of marriage, mom wanted to look her best for my dad. Of course he loved her whether her make-up was on or off, but I’m sure he appreciated the fact that she made the effort to always look her best for him.

One of my mom’s obsessions now is her looks. However, it’s much more extreme now than it was before the dementia. She hides away from us until she is no longer a “Plain Jane”. She never worried about us seeing her without her make-up on around the house when we were kids. She doesn’t even like my dad to see her without it nowadays. She keeps it on at night (her pillow is orange from the residue of her foundation), washes her face in the morning and immediately puts on a fresh face before she steps foot out of her bedroom. But…she doesn’t quite have the talent she once had in doing her hair and make-up. Those who know her have noticed the change in her abilities.

On Monday, like many other days that I have gone over there, I arrived at my mom’s house and knocked on her bedroom door before she was “put together”. It usually takes several knocks before I get a response of any kind…if I even get a response at all. This time, I had a Mary Kay lip mask and balm that she had ordered from me and has been impatiently waiting for. I used that as bribery for her to open her door for me.

Immediately upon opening the door, mom fidgeted with her bangs and shyly turned her face away from me, stating,

“I didn’t want you to see me like this like a Plain Jane.”

I reassured her that it didn’t matter to me and invited myself in her room. I stood beside her at her bathroom sink and tried to converse with her as I studied her beauty regiment. First, she squirted a half-dollar-sized amount of Mary Kay foundation into the palm of her hand (which is highly pigmented…the size of a dime would be more than enough). She rubbed it onto her face, missing underneath her eyes and not blending into her hairline or jaw line whatsoever. Next, she took the same amount of a dark tan-colored Maybelline foundation and did the same.

“Whoa mom, let’s rub that in a little better,” I remarked, trying to help her blend in the lines. “I think this color is a little too dark for you,” I added.

“No I need to do this darker too cuz I don’t like that I’m such a really white person too. This is really good too and Bud really likes this color on me too,” she said, as she slathered it on.

“I remember this lady in Corona when we lived in Corona and she taught me us how to do these things really good too…” she told me. She submerged her powder puff into a container of powder and, without tapping any of it off, patted her face, re-dipping the powder puff after each pat on the various parts of her face (cheeks, forehead, nose, etc).

“My Aunt and Uncle say I look okay too, even though I feel like I look weird and differently too now in my 50’s but they say I still look okay too thank goodness, and other women at church too say that I still look good too which is so good too,” she continued as she slathered it all on.

She turned off the light in the bathroom and turned on a small light-up mirror which sat on her counter.

“This is such a good thing too. When Joe lived in that different place I had a different kind of mirror thing like this too and I don’t know I don’t know I don’t know if he has it still too,” she said. She swirled her cheek brush in a bright colored pink blush before vigorously rubbing it on her cheeks.

“This is my most favorite color,” mom remarked, as she applied her favorite navy blue eyeliner. “And Bud really likes it too, he really likes me this way too,” she added.

Mom continued to finish up her face: mascara (which she smudged on her eyelid), dark brown eyebrows and dark, pink lipstick. When she was finished with her make-up she turned her attention to her hair. After running the curling iron through her hair, she took not just one, but two cans of hairspray and explained to me that “that girl” who does her hair uses two different kinds of hairspray. She held the first can an inch away from her hair and sprayed, making her way around her head. When she came across a rogue hair, she would comb it down and plaster it with spray! When she was finished, she repeated the process with the second can. To finish up, mom took a bottle of Bath & Body Works spray and gave her hair several close-range squirts as she narrated,

“I tell Bud I put this on my hair too, he likes it too.”

She opened her blouse and put a few squirts down there as well as sprayed her arms and her hair-again.

As I watched my mom throughout this process, my initial reaction was to dive in there and tame down her “look”. But once I realized she wasn’t listening to a word I was saying (as I tried to help smooth out that jaw line) I just stood back and watched on. I admit it was partly amusing but a larger part of it was touching. I saw that innocence in my mom as she happily put her on make-up in an effort to look good for my dad. With every stroke of her brush and comment that “Bud likes it when I do this” I couldn’t help but to smile at the sweetness of it. Before, when I looked at my mom, all I could I see were the dramatic lines and colors that were too way dark for her complexion. Now, I see things a little differently. I see a woman who wants to look good for the man she loves. I see love.

Thursday, November 14, 2013

I Need To Stop Reading The Internet

I really need to stop reading the internet. My Aunt warned me not to read any more on the internet. But I didn’t listen.

Last June, I went in for my yearly physical. Disclaimer: it had actually been 2 years since my prior physical and I figured I had better check in on myself. I had gestational diabetes with all 3 pregnancies which puts me at risk of developing type 2 diabetes in the future, so it’s kind of important to get my yearly physicals to make sure I haven’t developed the dreaded disease; I try to keep up on that.

After a quick physical inspection, the doctor then asked me a series of questions before sending me to the lab for standard blood work. One of the questions she asked was,

“Are you depressed?”

I paused for a minute, caught a little off guard. If I was being totally honest, sure, you could say I’ve been struggling with a bit of depression. For those of you who read my blog regularly, you know what I’ve been through this year. I figured it would be almost inhuman to NOT feel some sort of depression.

I was going to answer “no”. After all, it wasn’t as if I was unable to get out of bed in the morning. I had no thoughts of hurting myself or others. To be put on meds was the last thing I wanted. There was no reason to be a drama queen about it.

But when I opened my mouth, the word “yes” escaped my tongue. I surprised even myself.

I explained to her that I had gone through some traumatic events this year and that I was also dealing with the loss of my mother to dementia. She asked a few more questions [“Are you frequently tired?” “Yes”, “Do you have low energy?” “Yes”, etc]. She told me that she would add a hormone check to my lab work.

A couple of weeks later, I learned that I have hypothyroidism, meaning, my thyroid is not creating enough hormones. She put me on medication, told me I could choose to be monitored for a while or choose to meet with a specialist. Of course I chose the specialist. So, over the past 5 months I have met with the specialist, had an ultrasound on my thyroid (which revealed nodules), had even more blood work done, had a very painful biopsy which required needles going through my neck and the conclusions are this:

1. I do not have thyroid cancer (hooray!!)

2. I have an auto immune disease called Hashimoto’s Disease, which basically means that my immune system is attacking/destroying my thyroid.

It’s not the end of the world. I have to take a pill everyday for the rest of my life. Once we establish the right dose of medication (4 months and we’re still working to figure it out!!) monitoring and adjustments will continue to be needed, as it is a progressive disease. I will have to have monitoring and possibly more biopsies in the future (ick!).

When the doctor gave me the diagnosis of Hashimoto’s disease, he told me,

“You can read about Hashimoto’s on the internet.” [Really???]

I like to educate myself, so I took his advice. And this time, I wish I hadn’t because it brings back one of my greatest fears. Dementia. I read that hypothyroidism and Hashimoto’s disease can lead to dementia. Yep, it’s true. Thyroid problems can lead to memory problems. I even read posts from real people who were experiencing it. Whether being on the right dose of medication will help or not is yet to be determined; I’ve read mixed reviews. Although I did read that it can be reversed with proper medications.

The truth of the matter is this: I already find myself having “brain farts”. This isn’t made up because of my findings; for a few years now I’ve been blaming my forgetfulness on “pregnancy brain” or “mommy brain.” And maybe it is. But every time I think of that evil disease called dementia, my fears settle in. When I see “thyroid” and “dementia” used in the same sentence, I feel even more uneasy. I know that fear is no way to live life, but how can I not fear that I will share a similar fate as my mom?

For every time I walk to the cupboard only to stand there with a blank stare, unsure of what I was looking for; for every time a name slips my brain; for every night I forget to sign my son’s homework packet; for every time I just don’t have it altogether, I worry: am I headed down the same road as my mother?

Thursday, November 7, 2013

Knott’s Berry Farm

One of my fondest memories as an adult was a trip my family took to Disneyland about 11 years ago. I was dating my husband at the time; none of us (siblings) were married or had kids yet. Life was carefree and easygoing. My mom loved going to amusement parks, especially Disneyland and my parents thought it would be fun to go together as a family. We spent the day laughing, cracking jokes, taking funny pictures and just having a great time. There are a few moments, in particular, of that day that really stand out in my mind. One memory, which I will always cherish, was at the end of our day. It was probably close to 11:00 at night, and the crowd was thinning out. The roller coasters had no line and we were determined to walk on as many as we could before we left the park that night. I will never forget my dad’s excitement as we ran through the empty line of Space Mountain, hopping over bars and rushing to get on that coaster. I felt like we were all big kids. We had no worries. What a fun day we had.

I think back on that memory with great fondness; it is one that I will always hold dear in my heart. But with it also comes a certain sense of melancholy. Life will never be like that again. We will never again have those moments have as a family.

For months, mom has been wanting to go to “that place that we went to so many years ago with Jeff and Starla and it has that really big thing that goes up high….” After delving a little deeper, we discovered that mom was referring to Knott’s Berry Farm-an amusement park here in Southern California. At the beginning of the year, my siblings and I all bought season passes to Knott’s. Dad had already taken mom to Disneyland a few months ago and it wasn’t a grand adventure; he really didn’t want to take her Knott’s Berry Farm. So he tried to talk us into taking her without him. As it happens, we had been planning a “family day” at Knott’s for the day after Halloween, since my brother would be in town. I had this bright idea that it would be fun to have the entire family together for a day. But…my dad was less than enthusiastic about my plan. In fact, he wasn’t planning on coming at all. For an entire month, I tried to convince my dad to come along. I promised him we would all help with mom and that he would have fun spending time with his kids and grandkids, just like the good ol’ days. He was resistant, up until the morning we were planning to go. At last minute, he decided he would bring mom along with us and fulfill her wish, as well as mine.

I knew it was going to be a lot of work with mom. I know all too well how she is and how she’d behave. I was under no false illusion that we would have a perfectly magical day, as we had so many years before. But there’s a part of me that is still clinging to the idea of making as many meaningful memories with mom (as a family) that we can and I sense that time is running out. If mom wanted to go to Knott’s, then, in my idealistic mind, it would be perfect for us to all go together.

I could sit here and write to you about everything that went wrong throughout the day. I could tell you that my mom was very self-centered, that she was on her own agenda, that she waited impatiently for the kids to get through their rides so that we could follow her around the park to find what she was looking for. I could tell you that, despite our walking around the entire park, mom never did find what she was looking for (her memory doesn’t allow her to recognize the very things that were before her that she was so frantically searching for). I could tell you about how we finally found the roller coaster she wanted to ride (her favorite from times past) and how, at the front of the line, my sister and I had to physically restrain her from pushing through the group ahead of us to get on the coaster. I could tell you how she became so irate at our holding her back that she was yelling and smacking me and broke my necklace in the process of trying to get free. I could tell you about our fruitless efforts to get mom on rides that we knew she once loved, her refusal to eat her lunch, the tantrums and the exhaustion of keeping her where we wanted to go.

I could tell you all of those things and more. I had originally intended on sharing those things in great detail. Instead, I want to focus on the highlights of the days; the memories that will keep us smiling long after mom is gone when we look back at this family trip together.

Highlight #1: Riding Ghostrider (mom’s favorite roller coaster)

ghostrider After finding the ride and convincing mom that this was the roller coaster she was searching for, and after calming down from my anxiety at the tantrum she threw at the front of the line, this was my best memory of the day. In those few moments before the ride started, I started to fear that mom might freak out once it got going. It’s a pretty steep ride, and it goes really fast. However, when I looked over at mom, all fears began to fade away. As the ride started it’s uphill ascent, I looked over at mom to see an excitement in her eyes and a grin at the corners of her mouth. She looked like an eager child, going on her very first roller coaster and trying to hold back her excitement.

“Are you excited mom?” I asked her, matching her grin.

Mom wordlessly answered me with an expanding grin and sparkle in her eye. As we went down that first hill, mom couldn’t hold back any longer and the smile spread across her entire face, showing teeth and all! At one point, she put her head down, still smiling, and shut her eyes. And then something amazing happened. There was a tiny moment, which I will forever remember, when I glanced over at my mom and I swear I was looking at the “old mom”; the mom who loved roller coasters and knew how to let loose and have a fun time. To have that moment for even one small second made the entire day worth it to me.

Highlight #2: Moments like these

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At one point, mom became anxious and was practically running ahead of us all to find…whatever it was she was looking for. I suggested to my nephew, Jeremy, to go ahead and walk with grandma. It was such a touching sight to see that I had to take a picture.

 

 

1441245_10201490694041716_747885294_nIt took almost all day for dad to finally let loose and have fun. He sat off most rides with mom (despite our efforts to get him to ride while we took a turn with mom). But at the end of the day, he couldn’t refuse Big Foot Rapids, which is my favorite ride. I got completely soaked and dad laughed his head off so it was totally worth it.

 

Mom was pretty resistant about going on The Log Ride, even though it used to be another favorite. She was worried about getting wet. My sister and I laughed as we reminisced about how it used to be mom coaxing her into riding the log; now the roles have reversed.

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Highlight #3: The Bumper Cars

Mom kept talking about those “things that go and go like this, bump into each other…” Bumper Cars. Telling her that it was called Bumper Cars held no meaning for her. We had to visually show her. She peered over at the cars and her memory was sparked. I thought she’d love to live out her dream of driving again, but she was a little apprehensive of how to “work” them. She seemed content to ride alongside dad in the car.

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As we left the park that day, a sentimental feeling settled over me as it really hit that was likely our last trip all together to an amusement park, as an entire family. As our challenges grow with mom, so do our opportunities of getting out and taking trips. I wanted to preserve this memory forever and take a group picture, but mom was very anxious to leave. My mind took me back to that happy, carefree memory of going to Disneyland years ago (and the countless other happy amusement park trips). And then it hit me why it was so hard for dad to come that day. Though it is physically exhausting to venture out with mom, the overwhelming emotions that come with it are far more difficult; it is looking back on the good times that have past and facing the harsh realization that things will never be the same again; it is the missing and the longing for those times that hurts so much. The good days are gone. Yet, though they are gone, I know that someday I will look back on this day with some sort of fondness of the time we were able to spend together.

Tuesday, October 29, 2013

Halloween 2013

With each holiday that passes, we wonder if this is the last time mom will remember that particular holiday. She has lost memory of those smaller holidays: Memorial Day, Labor Day, even 4th of July. But as of last year, her memory was still intact for the “bigger” holidays: Halloween, Thanksgiving and Christmas. If I remember correctly, it did take some explaining to spark her memory about Halloween. But eventually, she figured out what we were talking about and remembered how we celebrate Halloween.

Saturday night, my parent’s church ward had their annual Halloween party and trunk-or-treat. Dad likes to have all the grandkids come along and be together for some Halloween fun. I got the kiddos (an myself) dressed up and headed over to my dad’s house, figuring we may as well ride over together. As I walked in the door, I asked dad if mom was going to come with us (knowing full well before I asked that she wouldn’t go).

“No, she doesn’t understand the concept of why we’re going to the church tonight. I tried explaining it; she says that she’s going to church tomorrow and she doesn’t know why we’re going tonight,” dad told me.

I knew it wouldn’t do any good to try and convince her, yet I was still determined to try. I went down the hallway into the room where I knew she was hiding; there she was, sitting at the computer.

“Mom, do you want to go with us to the Halloween party at the church?” I asked.

I explained to her what Halloween is. I pointed out that we dress up and wear costumes and say “trick-or-treat” to ask for candy. My sidekick, “Baby Jack-Jack”, walked in the room and I showed my mom his cool costume. Apparently, mom must think that I look like a superhero everyday because she was oblivious to our being dressed up, even when I pointed it out. The concept is gone.

“Your dad keeps talking to me about this but I don’t understand what you’re saying,” she said, giving me a blank look before returning to her card game on the computer.

Despite all of my attempts to explain Halloween, I couldn’t get mom to understand. I suppose it’s just one more thing to add to the list of the things she’s forgotten. Forgetting holidays is a big one. If she can’t remember Halloween, will she remember Thanksgiving or Christmas? When she forgets those, what will she forget next?

Friday, October 18, 2013

Mom the Mischief Maker

Last Friday, mom got into a little bit of trouble.

I got the phone call right after I had arrived at my husband’s work-I surprised him at the office for his birthday lunch date.

“Where are you at?” my dad asked. I knew right away what that meant.

“What trouble is mom getting into now?” I asked with a sigh.

Dad filled me in on the details of the past hour. Mom had a lady from church over “babysitting” her for the day. She called my dad after mom had revealed that she found some money and had planned to walk up to the store which, as we all know by now, means she is attempting to buy more medicine. Apparently mom ran out the front door, leaving her caregiver in the dust.

I apologized and told dad I was out (there’s no way I would make it in time even if I wanted to). I hung up the phone, wondering the same thing dad was: where the heck did mom come up with money?? Dad has gone to extra measures to make sure there is NOT money laying around for mom to get happy with. Yet somehow she found money and was off on her mission.

By the time the hubby and I arrived at our lunch location, I received another phone call from a private number. I answered the phone, knowing that somehow the call was related to mom. Yep. It was Mike from Stater Bros. [There are few cashiers at our local grocery store who are familiar with mom and our situation and have asked for my number to call me when mom wanders in alone. Mike is extra attentive, as his dad also suffers from FTD]. Mike let me know that mom had wandered in, alone, and was in the medication aisle. He asked what I wanted him to do and even went so far as to say he could refuse her the sale. But…that’s only if mom chose his check stand and I didn’t want her to create a big scene in front of everyone. I told him thank you for keeping tabs on her and that we’d confiscate the medicine when she got home.

I hung up and tried to focus on my hubby and enjoy our lunch together. Of course in the back of my mind I was worrying about what was going on with mom. A few minutes later, I got yet another call. This time it was my sister. Apparently, when I was unavailable, my dad called her to see if she could get the situation under control. Luckily, she works close by, was in-between clients and was able to go track mom down. When she arrived at the supermarket, she found mom’s caregiver-for-the-day standing outside the door (I guess she was afraid of confrontation with mom? Or she didn’t know how to handle the situation?) Christina (my sister) walked inside just as mom was approaching the check-out counter, medicine in hand. She walked up to mom, who I am sure gave her a glare as she said something like,

“Don’t you say anything to your dad about me buying this.”

Christina stood patiently by as mom proceeded to pay for her medicine. Mom handed the cashier her dollar bills and the cashier remarked,

“Wow, these are some old dollar bills. Where did you come across these?”

My sister glanced over to see an assortment of silver certificate $1 bills, $2 bills and some old coins.

Mystery solved. That’s where mom got the money from: she had found dad’s old coin/money collection.

silver dollar “I’ll just take those and pay for it with my debit card,” Christina 2 dollar said, as she retrieved the old money back from the cashier. Mom was insistent that my sister return her money, but was soon quieted when she realized that Christina would pay for her medication. As soon as she got what she wanted, she was out the door. Christina tried to convince her to take a ride home, but mom was insistent on walking. So my sister followed behind her in her car and made sure she got home safely. She followed mom into her bedroom and quietly observed her as she hid her loot.

One more disaster averted…at some point our luck is going to run out! At this stage in the game, we are looking into full-time, professional care for mom. :(

Tuesday, October 15, 2013

Some Days a Girl Just Needs Her Mom

Some days a girl just needs her mom. Even when that girl is a grown woman.

Some days a girl just needs her mom.

Like when the neighbor delivers an entire crate of plums on her doorstep; mom would know just what to do with them. Every summer, mom made homemade plum jam out of grandma’s homegrown plums-using grandma’s perfected recipe. Why didn’t I think to get that recipe when mom still knew what plum jam was? Why didn’t I pay more attention to the details while I was helping her as a young girl?

Some days a girl just needs her mom.

Like when her kids begin to test the lines; when her teenage girls detest her and all her rules. The thing grand thing about a grandma is that she is seasoned. She has been through the tests and the rebellions and the attitudes and the challenges of her own children and passes down her wisdom to them when they’ve grown. Mom was so smart. She studied child development. In my early mothering years (before dementia), she always knew the right thing to say, the right way to handle a situation.

Some days a girl just needs her mom.

Like when she wants to pick up the phone to share good news, to ask a question or just to shoot the breeze. This is probably what I miss most. Having a mom to talk to.

I know I shouldn’t complain. I had twenty-something years with my mom before dementia began to take over. Some women never even had that long. I am not the first woman to lose her mom at a young age and I am certainly not the last. Some days I feel strong, resolved; I feel like I can do this! I can take care of myself, I can figure out this parenting thing and I’m stronger for not having to rely on anyone.

And other days I feel lost. How do I navigate without my mom?

Some days a girl just needs her mom.

Today is just one of those days.

Monday, October 14, 2013

The Walk

DSCN4697 This last Saturday we participated in the Walk to End Alzheimer’s for the second year in a row. My amazing Aunt and her husband came down from San Jose once again to join us. My other Aunt from last year also came as did my sister-in-law and her family and a friend and her mom. We learned a few things from last year and worked hard to make this year even better than the last.

To start with, we figured out that we could make our own team shirts. We wanted Team Dee to stand out, so I created these t-shirts and designed my mom’s face into the purple awareness ribbon. I had originally wanted to get them professionally made, but I ran out of time. I was pleased with how my homemade shirts turned out though.

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Also, I wasn’t sure last year about how strenuous the actual walk was. So I hadn’t planned on having the kids join us (although my husband ended up bringing them). This year, we planned on all of the grandkids (minus one) participating and explained to them what we were doing and why we were walking. I love that we involved them and that they were able to learn the importance of supporting their family. My nephew, Jeremy, led us in a team spirit chant throughout our walk and all the kids had a lot of fun with that (especially since we bought mega phones to yell through).

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We also took note last year that there were awards for the most spirited team as well as the best dressed team. We tried hard to be the top earning family team, but that dang Pauline’s Angels team is hard to beat!! ;) I’ve told you before, we’re a competitive family. So we wanted to win something. We knew we needed to stand out. In case the neon shirts weren’t enough, we decided to accent our uniform with the dementia color: purple. We had purple jewelry, purple wigs, purple hair spray paint and accessories…and we sure did draw attention! Everyone was stopping us to take our pictures and our efforts paid off. We won the award for the Best Dressed Team. When we went up front to receive our award (and get our picture taken), my daughter asked me if we were famous. Ha ha. Gotta love kids!

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I am very proud of what Team Dee accomplished this year. We finished with over $4,000 in donations which put us in the #6 spot for the highest earning team. My dad was ranked at #9, my Aunt at #10 and myself at #13 as the highest individual fundraisers. Out of about 1,000 who were there walking, I would say that is quite an accomplishment!!

I know many people do not like donating to organizations such as these; they feel that the individuals affected never see a dime of the money. To each his own; however, I’d like to share a few facts about the Alzheimer’s Association that you may not know and which have influenced our decision to walk for them.

1. The Alzheimer’s Association provides resources for families who are affected by this disease. Whenever you need something, you can call the center and they can direct you where you need to go. I can’t even begin to list all of the resources that one may need in order navigate through this disease. And they help you get through it all. I would bet that most people affected with dementia have made a phone call to the Alzheimer’s Association at some point in time; if they haven’t then it’s only because they don’t know about it! Your donations help to fund this.

2. Along with #1, the Alzheimer’s Association has a respite program. That means they are allotted a certain amount of money (depending on how much they’ve earned that year) that they put aside to assist families with respite care. Earlier this year, we received some of that funding and had a temporary caregiver with mom. While I was at the walk, I ran into the case worker who helped us get on that program. She recognized me right away (wig and all!) and asked how my mom was doing. I gave her an update and told her that we were looking into full-time care. She let me know that there were still some funds available and that they may be able to help us again. It’s not anything full-time, but any little bit helps!! Though the help is there for everyone, I feel that we are “on their radar” more because of the donations we’ve raised for them. I always tell my kids: “You get what you give!” I feel a little better about getting if I am giving!! It is your donations that help to fund this and make this possible.

3. I’ve been reading a lot of articles lately on how scientists feel they might be close to a break through on Alzheimer’s treatments. In fact, I posted a link last week on an experimental drug used on rats that was successful in treating Alzheimer’s (it has yet to be tested on humans). If we can find treatment for Alzheimer’s (which will affect millions), it opens the door for other dementias as well. All of this takes funding. Your donations help to make this possible.

Though it can be frustrating at times to raise the money and find the sponsors (I hate asking people for money), I feel good about being proactive and helping in the cause. Most of all, it feels good to be united in love and support for my mom. During opening ceremonies, there was a “flower ceremony”. We had all written on different colored flowers to symbolize the person we were walking for. As we all stood together, holding our flowers for my mom and as I looked around to see so many others rally in support for their loved ones, my eyes filled with tears. It was a touching moment.

I want to give a BIG thank you to everyone who joined or donated to Team Dee this year. You have no idea how much your love and support means to us. It is what helps us get through every day. I would love to see even more FAMILY and even friends join Team Dee next year ;)

Here are some more fun pictures for you to enjoy!!

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Tuesday, October 8, 2013

Celebrating My Birthday With Mom

Yesterday was my 32nd birthday. I started my day like every other Monday: at my mom’s house. At first, mom seemed unaware of the date (she had given me my birthday card over the weekend…she just couldn’t wait!) When I prompted her, she remembered it was my birthday and reminisced about how good she did when she had two babies (I’m a twin).

My husband had arranged for my family to all go out to dinner later that evening and celebrate together. I wasn’t sure if dad had mentioned it to mom, so I decided to give her fair warning and ask her if she’d like to come. She was very happy to go out to dinner.

“That would be so good, yeah. And ask your dad too and it would be good to go do that for your birthday even though Joe won’t be here but it would be so good. Yeah. Where are we going? To that Tyler Mall place? Is that where we’re going? That would so good too, yeah…” she rambled, with a sparkle in her eye.

I tried, countless times, to explain to her that we were going to The Old Spaghetti Factory and that we’d be meeting at 5:00 to leave. Somehow, she had it in her mind that we were leaving at 4:30 to go to Miguels, which is at the Tyler Mall. It’s too exhausting to write out the entire events of the afternoon-the phone calls from mom nagging about leaving and asking me to please call my dad to let him know to be home by 4:30- but suffice it to say that she was very unhappy when 4:30 rolled around and we hadn’t left yet. She nagged and fussed and threw a stink until we loaded into the car to leave. Then, she was flustered when we drove the wrong way to the mall and even more upset when we pulled up to Spaghetti Factory.

“I don’t know why you changed it, dammit!”

The dining experience was the usual with mom: mom, giving her written list of what she wanted to eat to the waiter; mom calling the waiter from across the restaurant, unhappy that it was taking so long to get her food; mom, asking my sister to take her home before the check had arrived.

I’ve learned not to be bothered by mom’s behavior. It can be a little annoying and even embarrassing sometimes…but it’s nothing she can help. I’ve learned to find the humor in our situation, like when she sang Happy Birthday to me in full volume as soon as we sat down at the table. I can even chuckle at her little tantrums. If I don’t laugh, I’d cry, so it’s better to just laugh it off ;)

As tiring as it can sometimes be to take mom out, I am glad that she was there. We try to make the best of it and have fun with her.

Thank you mom, for giving me life and for being such a great mother to me over the years.

 

my bday

Wednesday, October 2, 2013

Problem Solving

I think you could say I’ve always been a bit of an entrepreneur. My parents taught me early on to work hard for the things I wanted in life. Even at 7 years old, I was putting my creativity and resourcefulness to good use and always had some kind of little “business venture” in the works. One summer, my cousin came and stayed at our house for a good amount of time and together we sewed hair scrunchies and sold them door-to-door in the neighborhood. My brother, sister and I would often knock on neighbor’s doors and offer them a car wash for a small fee. My friends and I used to make necklaces out of paper mache and Potpourri from flowers in our gardens which we sold. You could often find us out on the lawn, used toys and crafts scattered on top of blankets priced with tags to sell to the other neighborhood kids. I remember one time, the ice cream man stopped by one of our yard sales and I traded some of my cereal box prizes with him for ice cream.

This pattern has followed me throughout my life: as a teenager trying to earn money for my high school choir tours and driving; as a starving college student working to earn a couple extra bucks; even as a stay-at-mom working for some extra Christmas cash. My parents taught us to never look for hand-outs; HARD WORK is how you get by and help yourself and those around you.

Lately, the money issue has been keeping me up at night; not money for myself or for my immediate family. I’ve been really worried about how we will afford the professional care that mom needs. I know the time is coming that mom is going to need constant supervision. Truthfully, that time is already here. We are doing our best to have mom supervised while dad is at work. We work together as best we can, as a family, to ensure mom is safe. Right now, mom’s care is all on a volunteer basis and it only covers half of the day. We are never really sure how long our dear volunteers will be able to handle mom. The time has come that we are exploring all of our options to get mom professional care throughout the entire day while my dad is at work.

The problem? Cost. Maybe it’s not my problem to worry about. But how can I help it? My dad has always been there to help us, how can I not now worry about him? I worry about how my dad is going to be able to afford a full-time caregiver. Like I said, my dad values hard work and is NOT afraid to work. He is one of the hardest workers I know. But the fact of the matter is that professional care costs more than the average middle-class family can afford. Yet dad makes “too much” money to qualify for any assistance. He is too young to retire to take care of mom full-time. Most professional companies charge around $20 an hour for in-home care. Multiply that by 40 hours a week and that equates to $3,200 a month for professional help. To complicate it even more, dad is self-employed which means his income fluctuates month to month. Finding a solution is trickier than it seems.

There are options. We can exhaust our volunteer resources. We could hire someone privately for less. We could look into a live-in caregiver and exchange living costs for care. All of these options have pros and cons to them. One attorney told my dad that our cheapest option is to put her into a home. It could eventually get to that point, but as of right now that is not something we are ready to do. Ideally, I know my dad would like to keep mom at home as long as possible (even to the end)…that will only be possible with a lot of in-home care. And consequently, a lot of money.

I worry about the financial devastation this will bring to my dad. The emotional devastation is hard enough to deal with. My dad has always been one of the most hard-working men I’ve ever known. He has always been there to help others in need and is a very generous person. I know he would never let his children go without. And so I feel that we cannot let dad go without.

Like I said, I am a worrier. Luckily, I am also a problem solver.

It’s impossible for myself, or my two other siblings, to come up with this amount of money from our household budget. We each have our own families to take care of and support. We do not want hand-outs. I, like my dad, value working for the things we have in life. Even care for my mom.

I am putting my entrepreneur skills to good use. I’ve put my head together with my siblings and we have come up with a plan of attack. We are not going to let dementia defeat us!!!

Every month, we will be doing some sort of a fundraiser. First and foremost, I want you all to know that the purpose in this is not to be an annoying salesperson!!! If you like what you see, great! If not, scroll down and no hard feelings ;) I am not going to pester anyone to buy anything. What I will do, is post (on my blog as well as my facebook page) every month what we are offering for the month. I have created a tab at the top of my page specifically for fundraising. You can click on that tab each month to see what we are offering. We have some great ideas lined up.

Most of the money earned will go directly to my mom’s care fund (which I have already set up). I say most because I want to think outside of our family a little bit and benefit others as well. For that purpose, we will donate 10% of every penny raised to the AFTD (Association for Frontotemporal Degeneration). Like the Alzheimer’s Association, the AFTD helps provide resources and research for dementia; unlike the Alzheimer’s Association, this organization specifically helps those afflicted with FTD (which is the category mom’s dementia falls under).

Also, I like to have a little fun. :) So, for every item you purchase, your name will go in a drawing for a chance to win that particular fundraising item at the end of the month. If you share my post on your facebook page, you will also have your name written on a ticket for the drawing…even if you don’t purchase anything! Sound like fun? :)

Our first fundraiser should be up and running by the end of this week and will go through the whole month of October. You can click on this link to get you there, or you can click on the tab at the top of my page, entitled “fundraising”.

Thank you all for your love, encouragement and support!!

Monday, September 30, 2013

Becoming My Mother

dishwasher The other night, my husband loaded the dishwasher the wrong way. It was just chaos: bowls put in random places, plastic on the bottom rack, cups thrown about in no particular order.

“Honey, if you want the dishes to get clean, it’s better to alternate big plates with small plates,” I explained as I rearranged the plates on the bottom rack.

I continued to explain my method of organization for the dishwasher as Jeff stood quietly by. When I glanced up at him, his eyes were wide, eyebrows raised and a small smirk formed in the corners of his mouth.

“Are you serious?” he asked.

I stared at him for a couple of seconds as I realized what was happening. I knew what he was thinking before he even said it.

I am turning into my mother.

There comes a point in nearly every woman’s life where she feels that, in some way, she is becoming her mother. Sometimes it is realized with disdain, sometimes it is realized with pride. For me, the realization brings fear.

For every time I insist on the dishwasher being organized a certain way, I think of my mom and her obsessive way of organizing every cup, every dish, every fork. Nobody else can do it the right way.

For every morning that I put on my make-up, I reflect on my mother’s obsessive vanity and fear of being a “Plain Jane”.

For every moment that I thrive on routines and schedules; for every time I count a step when I walk, for every time I notice an ache or pain in my body or worry about a health issue I may face; for every time I say the word “too” or “severe”; for every time my brain draws a blank; for every time I want things done MY way…for all these things, I worry that I am becoming my mom. Do I share a similar fate?

As these thoughts raced through my mind that evening at the dishwasher, I immediately scrambled up the plates. My husband laughed as I returned the dishwasher to chaos and prompted him to continue as he was doing.

Over and over, I am told that semantic dementia is not hereditary. Yet, with each passing day, as I watch my mom slip away, I can’t help but to worry, will I become my mother?

Monday, September 23, 2013

Seasons Change

Fall is my favorite time of year. I love the change of the season and the nostalgic feelings it brings with it:  from the crisp, cool air to the smells of cinnamon and pumpkin and apple baking in the kitchen to the celebrations of the holidays-my birthday, Halloween, Thanksgiving.

With our temperatures in the triple digits over the past month and a half, I couldn’t have been happier with the approach of fall. Yesterday marked the first official day of fall and the past week has been kind to us Californians. The weather has been cool enough to turn the air conditioning off and to open up the windows and breathe in some fresh air.

The cool air, however, does increase some struggles we’ve been having with mom. I’ve recently written about mom’s “happy feet”; mom’s latest fixation is to go for walks.

“It’s so good for me too…It’s such good exercise for me…” she remarks about her 1/4 mile walks to the store or bank.

Now that the weather is cooling down, she is more determined than ever to get out there and go walking. One benefit of the triple digits was that we could usually talk her out of walking in the sweltering heat! (Mom hates to sweat).

All that to say, I’ve tried to nurture this newfound love for walking and have suggested to mom that we go for walks around the block. Walking is good exercise for her, but I think sometimes she points that out to manipulate us into being less suspicious about her true intentions. Unless mom has a purpose in mind, she really isn’t as interested in walking as she makes herself seem. Mom has 3 primary purposes to go for walks:

1. To visit her sister

2. To walk to the bank in an attempt to withdrawal money

3. To go up to the store to buy medicines that she’s not allowed to have

Having people with her every morning has helped immensely. We now have every morning covered so that mom is monitored during her “happy hour”. Morning has usually been the only problematic time with her; in the afternoon she naps and then wakes up to take medicine and eat a snack while playing computer games. Mom is pretty unhappy about having people looking over her shoulder every morning. It prevents her from accomplishing her aforementioned objectives. It seems that in her determination to get out without an escort, mom is taking drastic measures. Very drastic. Mom is now skipping her nap. Yes, you read that correctly: mom is skipping her naps!! If you’re an avid reader of mine, you know what a big deal this is. That one thing that has been both a pain in the neck yet a source of comfort at the same time-talking about her rigid routine-is now being broken to bits in her rebellion to get away. We used to count on the fact that at 12:00 mom eats lunch and at 1:00 she goes down for a nap. It left only a short window in the morning that mom needed supervision to prevent her from fleeing the coop.

I’ve heard of mom skipping her naps a few times in the past week. Today was the first time I witnessed it firsthand. This morning, I took mom for her long awaited haircut (it’s been a while!) I was relieved when we finished up; it was 12:00- just enough time to get her home, fed and down for a nap before I went to pick up my son from Kindergarten.

On our ride home, mom pulled out her coin purse and began counting some dollar bills. I knew, from talking to my dad yesterday, where the money had come from. Mom spent last week scrounging around the house for any change she could find in an attempt to cash it all in at the bank for dollars. Among her stash were some arcade tokens as well as old coins from dad’s coin collection. I think dad was able to retrieve the valuables before she took the rest of the change up to the bank to cash out the $8 worth of coins she had accumulated.

“Mom, what are you doing?” I asked, glancing over to the passenger seat next to me, watching her count her dollars. I didn’t even need to ask.  I knew very well what was on her mind.

When she didn’t answer, I asked,

“What are you going to do when you get home mom? Are you going to take a nap today?”

After asking several times, she finally scrunched up her shoulders and gave her head a little shake.

“I don’t know, I feel so good too when I walk, I don’t have to take naps all the time when I walk too,” she quickly said.

“But mom, you haven’t gone on any walks today. Are you planning to go for a walk?” I asked, knowing full well of her intentions. On our way to her haircut appointment, she had asked me if I would drop her off at the bank on my way home. And that’s only because I arrived to her house early; her original plan was to walk up there before I came over (I caught her off guard when I showed up “early”). When I told her I wouldn’t take her to the bank, she came up with Plan B.

Now I faced a dilemma: what to do. She refused to ride with me to get my son from Kindergarten. As it neared time for me to leave, she showed no signs of going down for her nap. In fact, she was in the bathroom putting on lipstick when I left. Nevertheless, I had to leave. I decided to drive back to the bank after I picked up my son to see what mom was up to.

Sure enough, as I drove down the street, I spotted mom scurrying along quickly up towards the shopping center. I pulled the car over and rolled down my window. Mom was surprised to see me and was quite concerned that I needed to pick up Cody from Kindergarten. She peeked in the back window to see if he was there (he was). Then she turned to me and said,

“I’m just walking to get some exercise, it’s so good for me to be walking up here.” Then she mumbled something I couldn’t make out and walked away. I let out a sigh and turned my car around to follow her into the parking lot. At one point, mom was actually sprinting along the sidewalk; strangers turned their heads to see what the big hurry was.

I stalked mom from my car and watched her pass by the grocery store (after hesitating momentarily at the door) and cross the parking lot to the bank. I drove ahead of her, parked my car and got my two boys out of their car seats. I followed behind her to the line and asked her what she was doing. She ignored me.

When it was her turn to go forward, I followed behind her. She began talking so quickly it was almost incomprehensible to the teller.

“I want to know can you check this please too and tell me is my disability in there too, they’re supposed to give me some money for disability too can you please tell me if it’s there please too?”

The teller glanced at me, standing behind mom’s left shoulder, and I mouthed to her,

“She has dementia.”

The teller nodded and I audibly told her,

“She’d like to take some money out.” Then, quietly, I added,

“Can you please tell her there’s no money there?”

The teller was very cooperative, understanding my dilemma, and told mom there was no money in the account.

“No? It’s not here yet? You mean I have no money to take out yet, no? What about my husband’s account?”

The teller apologized and told her again that there was no money.

“Oh well I have $8, I hope that’s enough,” mom said. And she quickly turned around and darted out the bank door.

I thanked the teller and followed after mom. Except that I had to put my boys back in their car seats and drive across the lot. I put a quick call in to my dad, notifying him of the situation. I was able to prevent mom was draining the bank account but I wasn’t able to prevent her from buying the medication. I caught mom just as she was entering the check-out line, “Sleep Aid” medication in hand. At this point, there was no stopping her, so I stood quietly by as mom paid $7.08 for her medicine. I offered her a ride home, but she walked past me. The only words she said were,

“Don’t tell your dad I got this, if you tell your dad I bought this I’m going to be so mad at you too. He doesn’t support me, you should support me.”

And with that she stormed off and started her walk back home. I started following her back to her house, to make sure she arrived safely, but as we turned out of the parking lot, I saw dad’s truck pulled over to the sidewalk. He had finished work up early and, knowing the situation we were in, waited for mom to follow her home. I glance back in my rearview mirror to see dad driving alongside her and mom staring intently downward seemingly oblivious to any truck driving beside her.

A while later, I called and checked in with dad. He reported that he had confiscated the medication and that mom was upset and told him she hates him. She doesn’t know what she’s saying; she is throwing a tantrum for not getting her way. Nevertheless, I am sure it hurts. It’s hard to have to take away freedoms from someone you love. As hard as it is for me, it’s tenfold for my dad to have to do this to his spouse, his partner in life.

As mom’s behavior becomes harder and harder to manage, I can’t help but to feel anxious and worried about the future. How long will dad be able to deal with this? What is our next step? Will mom be able to stay at home in the long run?

Monday, September 16, 2013

Hide and Seek

Our family has somewhat of a tradition to gather together on Sunday afternoons for family dinner. I remember when I was first married and moved away from home. I looked forward to those Sunday dinners all week; not just for the fabulous meals that mom had prepared, but for the time to visit with my family. Mom equally loved our Sunday family time together and it was important to both my parents to have their kids gather together at least one day a week.

About 5 years ago, things started to change. Mom didn’t have the same resolve about us getting together. In fact, sometimes it seemed she was actually relieved if Sunday dinner didn’t happen or she’d find excuses to not have it. Her cooking variety became slimmer and slimmer; in fact, it kind of became a joke in the family,

“What will be for family dinner this week…tacos or spaghetti?”

Of course mom hasn’t participated in preparing a meal for more than a couple years now. Nowadays she doesn’t interact much with the family at all during our time together. If dinner is at her house, she stays in the office playing Free Cell on the computer; if it’s at my house she is on my computer playing her games. More recently (within the past few months), she hasn’t wanted to come over at all when dinner is at my house. It’s been like pulling teeth to get her to come.

Yesterday, family dinner was at my house. It was no surprise when dad stopped by without mom. We asked where she was, knowing full well that she was at home. Dad got a smirk on his face and shook his head, as he told us,

“She hid from me.”

“What do you mean she hid from you?” I asked, thinking she must have just locked herself in her room.

[Disclaimer: It would be much better if dad retold this so that I don’t get anything mixed up, but I’ll do my best to write it as I remember him telling me].

Dad told us of the events of the afternoon, starting from the time he woke up from his nap in the living room. He walked back to their bedroom and found that it was locked. He knocked for mom to answer the door, telling her to open up and that it was time to come to my house. No answer. He got the bedroom key and walked into the room. To his surprise, mom was not there. He looked around and could not find her. He looked in other rooms in the house and began to panic a little, wondering if she had escaped somewhere while he was napping. He went back to his bedroom to find mom on the floor, next to his side of the bed, in-between the bed and the french door. She was laying down on a pillow. When he asked her what she was doing there, she replied,

“I’m hiding from you. I don’t want to go to Cassandra’s”.

Dad got her off the floor and she followed him to the kitchen, talking his ear off. I don’t remember what he said was going on in the kitchen, but he said that one minute they were talking and the next minute he turned around and she was gone. He went to get her; it was time to leave to come over to my house. He went to her usual afternoon retreat: the computer. She wasn’t there. He went back to his bedroom and his search came up empty once again. He called her name. No answer. Finally, he made his way into the spare bedroom, thinking maybe she had hid in the closet. And there, in front of the closet and on the side of the TV stand, mom was crouched down, hands over her head, hiding from dad.

We were all chuckling as dad told the story. I guess mom really didn’t want to come over to my house!! This is a new one for mom…hiding. If any of you caregivers are reading this, beware! Mom just might try hiding from YOU the next time you come over!!

Monday, September 9, 2013

Sound the Alarm

I am a mom to a very busy, very curious, very independent and strong-willed two-year-old. He’s adorable. He melts my heart and he brings a smile to my face each and every day. He also leaves me exhausted by the end of the day. Especially on those days that I have to take him shopping. Today was one such day. We went shopping at Kohl’s. He was adamant that he was NOT going in a cart. I was able to bribe him for a few minutes with some fruit snacks. But once those were gone, so was my two-year-old. He was able to unlatch that cheap seatbelt and climbed right out of that cart. When he’s this determined to stay out of the cart, I give him a choice,

“Hold my hand or ride in the cart” and he will choose to hold my hand.

Not today! He insisted he could walk by himself. He was like a little Tasmanian Devil, running up and down the aisles, hiding in the clothing racks (pulling clothes off the hangers in the process) and touching anything else that caught his attention. Many times throughout our trip, I *tried* to pick him up and carry him. I was sure the police were going to be coming into the store at any given moment on suspected child abduction…that’s how big of a fit he threw when I tried to carry him along. Body wrenching and wiggling, legs kicking and lungs screaming.

Now…add my 52 year-old-mom-with-dementia into the mix and you can guess how my Monday morning went. Or maybe you can’t guess. Because there’s always something new and exciting with dementia.

20130909_101152 Preparing mom for her shopping trip was exhausting enough. Before we left, we spent 15 minutes sitting in her living room as she looked through her wallet for her Kohl’s gift card. Right away she [thought] she found it. I spent the next 10 minutes trying to explain to her that what she held in her hand was NOT the gift card, but rather the cardboard that was attached to the gift card when it was purchased. I could have just as well explained it to the couch we were sitting on, with the response I was getting from mom. She tucked her “gift card”, along with her Kohl’s coupons (which she was confused about) into an envelope, zipped up her purse and was ready to go. I try to avoid a scene as best I can when I take her out, so I asked mom to get out her wallet again and find the right card. No matter which way I tried to explain it to her, she didn’t understand and she mostly ignored me. At one point, as I was trying to explain it to her, I tried to unzip her purse to show her that I needed to look through her wallet to find the card. Big mistake. She ripped her purse away from me and glaringly said,

“No, you don’t get into my purse, no! That’s mine!”

I honestly can’t even remember how it happened, but eventually I was able to convince her to get her wallet out again and we found her gift card. She placed it in the envelope along with the cardboard cut out.

Back to Kohl’s. You have the visual of my rowdy two-year-old. Now, picture my mom, racing around the store looking for something specific; me, chasing quickly behind her while pushing my toddler in a cart (he was just finishing up his fruit snacks), attempting to ask her what she was looking for. She was up one aisle and down the other as I maneuvered behind her with the cart. She was much quicker than I was and it’s hard to push those carts, so it will come as no surprise when I tell you that she disappeared from my line of vision. We were in the back of the store, in the home decor section. I turned up an aisle of picture frames just in time to see mom’s red hair flash around the corner. And then I heard an ear piercing noise. My first instinct was to cover my ears, but I knew right away that my mom was responsible for setting off the store alarm. I rushed around the corner to see mom, standing by the emergency exit, one hand still on the door, looking puzzled at where that loud sound was coming from.

I grabbed mom’s arm and pulled her away from the door, the alarm screaming so loudly that mom couldn’t hear me. In no time, there was a Kohl’s associate rushing to the back door to turn off the alarm. I apologized for the mistake (once the piercing sound was stopped) and pondered on the irony of the situation: it wasn’t my two-year-old that has set off the alarm, but rather my grown mom.

Mom seemed not to notice the commotion she had caused but rather went about her goose chase, calling across the store,

“Are you a worker??”

The sales associate (who had turned off the alarm) came back to mom at mom’s beckoned call, and patiently assisted her as mom asked her what her Kohl’s coupon mailers were for (not that I hadn’t explained it to her at least half a dozen times already!!!!!)

The rest of the shopping trip was fairly uneventful, aside from chasing a feisty two-year-old while attempting to not lose my mom. By the time we left, I felt ready for a nap!!

I have said this once before and with the holidays soon approaching I will say it again…to all those dear family members (and siblings of mine) who want to get mom a gift card for Christmas (or any other occasion): If you get her the card, you get to take her to spend it! It’s just not fair for me to have all this fun by myself ;)

Wednesday, September 4, 2013

Where’s Jeff??

Growing up, my mom was very close to her brother, Jeff. They are almost 2 years apart in age…to the day. A couple of years ago, Uncle Jeff moved to Montana. Mom always expresses her regrets at them moving and always talks about visiting him. We actually sent her up to visit a little over a year ago, for their birthday. They haven’t seen each other since that visit.

This month is Uncle Jeff’s wedding anniversary to his dear wife, my Aunt Starla. To celebrate, they booked a trip out here to California to visit their favorite places, friends and family. Mom has been anticipating this visit. On Monday, we all congregated at my sister’s house to visit with Uncle Jeff. Mom was the last to arrive. We were all standing around in the living room when mom dashed through the front door. Immediately she looked around the room and quickly made her way towards the kitchen. She was on a mission.

“Jeff? Jeff?”

I met her at the kitchen/living room entryway and directed her back to the living room, where Uncle Jeff was standing and chuckling.

“Hello, do you know who I am?” he said with a big grin.

Mom looked right past him and was trying to peek over my shoulder.

“My brother Jeff, Jeff? Have you seen him?” she said.

I know it is sad that she can’t recognize her own brother. However, it’s what we’ve come to expect with this disease. We can either cry about it or try to find some humor. Mom has such a childlike innocence about her that it’s hard to not smile sometimes. It was kind of cute to see her looking around in anticipation and excitement to find her brother. It reminded me of when people are standing in the airport, peering over shoulders in search of a loved one.

We finally clued her in to the man standing next to her.

“Mom, that is your brother,” I said, pointing to my Uncle.

“Huh, Jeff? You’re Jeff?” she said with a grin, nervously tugging at her hair. “You’re looking really differently too.”

Uncle Jeff gave his baby sister a hug, followed by Aunt Starla.

Trying to get mom to take a picture these days is quite a riot. Everyone was chuckling as we tried to get mom to pose for a picture. And more importantly…to look at the camera! She kept looking away, talking and giggling and we kept calling her name and trying to focus her attention back to the camera-much like you’d do when trying to photograph a baby! We eventually got some good shots ;)

uncle jeff and mom 20130902_161609

Friday, August 30, 2013

Happy Feet

I think I’ve written in other posts that mom’s latest fixation is taking walks. We have concerns with her walking by herself, so to prevent catastrophe, we have “babysitters” over daily to keep an eye on those happy feet.

A couple of weeks ago, on a Friday, a lady from church was over watching mom. Mom was adamant that she was walking to her sister’s house that day (about 1 - 1 1/2 miles down the road) and was quite annoyed that people were over everyday to visit when all she really wanted to do was go for a walk by herself. This sweet sister from church told mom she would be delighted to walk with her, so off they went on their walk to my Aunt’s house. Once at my Aunt’s house, my Aunt told this lady that she would make sure mom got home safely and that she need not stay with her the rest of their visit. A little after noon time, my cousin drove my mom back home to her house.

Today mom was at it again. I got a text from my Aunt Ellen to say that mom had walked over to her house. That same lady from church had gone with her and once they were at my Aunt’s house, she left mom to visit with her sister. My Aunt had planned on driving her home. However, when mom was ready to go home, Aunt Ellen couldn’t find her car keys. Waiting patiently is not an ability mom possesses any longer. As my Aunt went to change her clothes and look for her keys, mom slipped out the front door. Aunt Ellen is disabled, so she was unable to chase after her and she still hadn’t found her keys.

Meanwhile…I was picking my son up from Kindergarten and never heard the notification that I had received a new text. I had just gotten in the door, was trying to cool off from the heat outside and sat down in my chair, thinking of what to make the boys for lunch. I made a quick phone call to handle a business matter. As I was on the house phone, my cell phone rang and I saw that it was my other Aunt (Claudia). I didn’t think much about it (she wasn’t with my mom today, so I never thought it would be a call about mom) so I dismissed the call as I finished up my other phone call. When I hung up the phone, I opened up my cell phone just in time to receive a second text from my Aunt Ellen, entitled: “Urgent”. I read through the 2 texts to learn that mom had gotten away before Aunt Ellen could stop her. I texted her back to ask if she had found her keys, knowing she most likely hadn’t, and immediately loaded the boys back into their car seats.

Right as I was pulling out of the driveway, my dad called.

“I’m on my way out the door to look for mom,” I said, knowing that was exactly why he was calling.

Dad was frustrated. This was exactly the kind of fiasco that he has been worried about and has tried so hard to avoid. He tried calling mom’s cell phone, which led him straight to voicemail. His fear was that mom had become confused on her way back and lost her way. And with her not answering her phone, it added more stress to the situation.

I tried to reassure my dad that mom getting lost would be the last of our worries. I worried more about her not recognizing traffic and getting hit by a car, or collapsing from the 100 degree heat. In our meetings with UCLA, and in my research on semantic dementia, the memory of how to get from one familiar place to the next remains preserved…at least, until the later stages.

However, as I was talking with dad and driving around, I saw no signs of mom. I drove around the route that I thought she was most likely to take. Then I looped back around to try the alternative roads she could have turned down. Still no mom. I was beginning to get a little worried. I hung up with dad to call Aunt Ellen to verify what time she left her house; surely she couldn’t have made it all the way home yet. As I made my way around the loop for a 3rd time, Aunt Ellen on the line, I finally saw mom. Relief swept over me when I saw her face. I pulled the car over to the curb, where mom stopped and stood by as if she was waiting for me to drive past. She finally realized who I was and opened the passenger door.

“Oh good, it’s so good you were driving here too because I’m so sweaty and tired too and I got lost coming back; I went to Ellen’s and I took the wrong way, I went the other way instead of that way and it was so weird too and I couldn’t find the right street and then I had to go all the way back around and then I came this way too so it’s so good you found me….”

On and on she rambled, hardly pausing to breathe, let alone allow me to get a word in. Over and over I asked,

“Where is your phone? Mom, dad was trying to call you, why aren’t you answering your phone?”

When she finally heard what I was asking, she replied,

“My phone? Here, it’s broken, it wouldn’t work so I tried to fix it at Ellen’s but it won’t work so I have to take it home too and charge it…”

I tried to explain to her that she cannot leave the house without making sure her phone works and furthermore, she should not be walking alone. She didn’t hear a word I said. Instead, she rambled on and on about her walk, how much she was sweating, how the lady from church walked her to her sister’s. On and on she went until I pulled into her driveway.

“I’m glad you’re safe mom, please don’t scare us again,” I said (talking over her, of course).

Mom unlatched her seatbelt and opened her door.

“Oh I need to see if the mail’s here too. It’s so good that you saw me, I’m so sweaty I’m gonna go get the mail now and go inside.”

And with that, she shut the car door and walked away.

I am glad that mom was safe today. One thing is clear…we can’t rely on mom’s ability to navigate anymore. Sadly, that ability is declining with everything else. And now some more hard begins, as dad has to figure out how keep mom “under control” while he is gone for the day at work. :/