Graduation

When I started having babies, I always imagined my mom being there for the big milestones in their lives. I was very close to my grandma while growing up. She was there for everything…from the smaller things such as birthdays and choir concerts and piano recitals to the bigger life events-my baptism, graduations and weddings. I suppose I took for granted the fact that I had a loving, active grandma in my life and I naively assumed nothing would be different when I had my own kids.

Every year brings about changes with dementia. This is the first year that my mom is declining to come to her grandchildren’s birthday parties. While she did come to my son’s birthday (in April), she has not made an appearance at any other grandchild’s birthday.

This past month, our two oldest girls graduated high school. This, of course, was a big deal and I spent hours preparing not only for the graduation itself, but for a party in their honor. Even though the girls are not my children by birth (Amber is my stepdaughter and Maurina is my husband’s niece who we adopted), my family has never differentiated them from the rest of our kids. My parents have always accepted them and treated them just as their own biological grandkids. I had always imagined my mom being there for these big life moments. But the concept is gone. This is the first big milestone that she’s missed with her grandkids. I could not even get her to understand the concept of graduation, let alone get her out to a graduation ceremony or family party. I admit it was hard not having my mom there with us. It is becoming a part of life-to not have her there. Though we are adjusting and accepting the fact that mom cannot be “there” for us anymore, every holiday, every birthday, every life milestone has an emptiness without her presence.

On a side note, this post wouldn’t be complete without thanking those people in my life who are always there for me in times when I need them most. I miss not having my mom here to help prepare for holidays, parties, etc; not just physically, but emotionally as well. Thank you to the people who are there for me emotionally and a big thank you to my amazing Aunt Peggy and Uncle David who took time off work and drove down from Northern California for graduation week. While they were here, they made a point to come not only to graduation, but also to my son’s baseball game and my daughter’s swim meet. There were here with me all day on Friday prepping for the party and my Aunt stayed up until midnight the night before their drive down to make cake pops for the party. I am truly grateful that my Aunt takes the time to be there for me and for my children in the absence of my mom. She’s probably the closest thing I have to a mother figure right now and I love her dearly! Also, my sister-in-law, Amber, spent her entire morning the day of the party to help me out with decorating cupcakes and food prep. Anytime I have a big event like this going on, she is always there to help. I appreciate that so much. And, even though my Aunt Ellen was sick and unable to attend the party, her husband brought by a couple of platters of food. She had offered to bring something “since [my] mom isn’t around to help” any longer. That was a very meaningful gesture. Though I will always miss my mom, I am so grateful for the people in my life who try to help fill that void; both those that I’ve listed and many more that I haven’t!

And of course thank you to the rest of the family and friends who came to celebrate with us and shower the girls with gifts and love!

What A Difference A Month Makes

About a month or so ago, we went to eat with my parents at mom’s favorite place: Miguel’s. Dad ordered mom her usual burrito and mom ate it up.

Last week, my sister and my Aunt took mom out to Miguel’s as a birthday present from my Aunt. My sister called me later that afternoon to give me a surprising report: mom did not know how to eat her burrito. I know nothing should be a surprise with this disease, but it had only been a month since her last visit. And what a difference a month makes.

 

“I don’t eat this part, no,” mom said, as she laid open her burrito and used a fork to eat the filling. Despite coaxing and explanations from my Aunt and sister, mom could not be convinced that she was supposed to eat the tortilla.

To make my sister’s experience even more eventful, the burrito evidently did not agree with mom. They were almost home when she motioned to my sister to pull over the car. She opened the car door (after Christina had pulled over, of course) and threw up the contents of her burrito. It didn’t all make it outside of the car, however. The upholstery of my sister’s new car was sprayed and mom made a mess on her pants. The smell was apparently too much for my Aunt to handle; it wasn’t long before she joined in the action and started to throw up in a bag in the back seat of the car. Poor Christina!!

Mom’s 53rd Birthday

This year, Mother’s Day landed on my mom’s birthday. Mom has no understanding of what Mother’s Day is anymore (last year she still did). But she sure did know it was her birthday! We went to church with her in the morning and with everyone person she approached, she told them it was her birthday.

“Today is my birthday and I’m 53, but how old are you?” she asked. It was too cute. It reminded me of my kids when they have birthdays- excited to let everyone know about their special day! She also let us all know that what she wanted for her birthday was money.

Later that afternoon, mom came over for a little birthday celebration. Only one of her siblings was able to come (her sister, Claudia) as well as my sister’s family. We all feel like this is probably the last year that she will understand the significance of her birthday. So it was important to us that we got together and celebrated with her.

Of course she didn’t eat any of our food; she brought over her “Slim Fast”. But that’s okay. I don’t think she really understood what birthday cake was (nor would she eat it), but we lit candles and sang to her anyway. As we sang, she seemed so happy, a grin appearing on her face. When it came time to blow out the candles, she had no idea what we were coaching her to do. The grandkids helped her blow them out.

   

After we sang Happy Birthday, we tried to get the grandkids to take a picture with grandma (well…half the grandkids, anyway). We couldn’t get mom to look at the camera. It’s been a challenge for a while, but this time there wasn’t one shot where she looked at the camera and smiled. I suppose that concept is lost with many others. The kids were pretty funny though, pointing at the camera and making noises to get grandma to look at us.

  

My dad thought he would be funny and he waved a dollar at mom from the opposite side of the table, in an effort to draw her attention towards the camera. No sooner than mom laid eyes on the dollar than she jumped up out her seat to try and retrieve it from dad. We were busting up with laughter.

Mom was a bit confused at what presents were. We led her to the rocking chair and practically forced her to sit down while we hurriedly brought over her presents before she moved out of her seat. She opened my sister’s present first and kept asking what the tissue paper was and what it was for. My sister knelt beside her and helped her to open the gifts as she showed/explained to her what each item was. After opening each one, she tried to get out of her seat as we gently sat her back down to tell her there was more. It reminded me of when each of my kids had their first birthdays. They hardly knew what to do with the beautifully wrapped packages placed before them. I coaxed them to tear the paper and eventually ended up ripping the paper off for them. Once they were done with that gift, they wanted to get up and run around or play with their new toy. It was with much protesting that I held them down to open their next gift. That was exactly how it played out with mom. Only instead of becoming excited about her presents, she would sigh and whine, 

“Oh darn it, I really wanted money, I really need money.”

 

[Of course we didn’t take it personal; we could only laugh.]

Even though mom was slightly disappointed in her presents, even though she didn’t eat food or cake, I think she enjoyed her special day. It’s rare to get her to engage with us these days. It was nice to have her over and spend some time with her for her birthday.

Happy Birthday Mom!! I love you!!

Catching Up

I have been a little inconsistent lately with my blog; I apologize to my readers. I don’t mean to overdramatize anything by writing this post and I’m not seeking sympathy; this blog isn’t really about me so much as it’s about my mom, but I felt like I could share with my readers why I’ve been absent.

Last summer I was diagnosed with an autoimmune disease called Hashimotos. I hadn’t been feeling like myself since before my last son was born (he just turned 3) and some things came up during a routine physical last June which ultimately led to the discovery of this disease. Hashimotos is when the immune system launches an attack on the thyroid, eventually causing full destruction. Let me just tell you, when the thyroid is in trouble, it wreaks havoc on your entire well being…physical and mental!! At the time of diagnosis, the doctor told me that they don’t know the cause, there is no cure, it’s a progressive disease and all I needed to do was take a pill for the rest of my life. I suppose I put a little too much trust in what the doctor said and it was left at that-me, taking a pill.

The problem is, the pills haven’t worked. Truly, a pill is simply a band-aid for the disease. It doesn’t fix anything. It’s been a rollercoaster and over the past few months my symptoms have reached a peak. I won’t get into it all the details, but let’s just say I have been feeling pretty lousy; I have no energy or motivation to do anything (which is NOT like me at all!!), I have terrible “brain fog” (which has caused me so much worry about developing dementia), anxiety, and the list goes on. When my last blood results came back as “normal” (while I was feeling worse than ever) I realized that I need to take control of my own health and not leave it solely in the hands of a doctor. Over the past few weeks, I have been reading everything I can find and get my hands on about Hashimotos and autoimmune diseases. I’ve found that diet plays a huge role in overcoming debilitating symptoms and even putting autoimmune diseases into remission. It’s an intense process so it seems like most of my spare time (when I’m not tending to my family) has been spent reading and educating myself, preparing menus and meals, etc. Needless to say, my blog has been put on the back burner while I figure things out.

I still have a very long way to go, but I will say that I am slowly starting to see changes. So I feel very hopeful and optimistic that by continuing to make the necessary changes, I can heal my body, gain my life back and kick Hashimotos butt!!!

Now for what you all really want to read about…mom. Here’s an overview of the last few weeks.

The blow dryer is becoming a huge problem. When mom is finished getting ready for the day (doing her hair and make up), she is often sweaty. Her solution is to stick the blow dryer under her shirt to dry herself off. Last Monday, I heard the blow dryer go off and I knew she had already done her hair, so I knew exactly what she was up to. I raced back to her bedroom to find the blow dryer under the back of her shirt. And this is what her shirt looked like:

Thankfully she didn’t burn herself. Clearly, it’s time to take the blow dryer away. That is a fight that I know dad is not looking forward to.

Another “event” that took place was removing the lock from her bedroom door. She is NOT happy about it, to say the least. Aside from constantly locking my dad out of their room, in the event of an emergency we would not be able to get in there quickly while fumbling with keys. She’s very paranoid about people coming in and seeing her naked, he he. I keep assuring her that we will not disturb her while she is getting ready in the morning, unless of course there is an emergency.

My dad had a birthday a couple of weeks ago. We had him over for dinner and despite my urgings for mom to come, she wouldn’t budge. I don’t think she remembered it was his birthday until I called her and told her we were having dinner to celebrate (which took a few repetitions before she caught on). She did leave him a card when she remembered the date and noted that it was only 21 days until her birthday (in actuality, it was only 13 days until her birthday).

Which brings me to another issue: numbers. Mom is losing her ability to make sense of numbers. The countdown to her birthday is one example. Another example is a conversation she had with my dad the other day. She asked if Jeremy (my nephew) was turning 52 this year.

“No dear, you are 52. How could Jeremy be 52?” Dad asked.

“No…he’s going to be 22. Yeah, he’s in his 20’s”.

“Dear, he’s 10. He was baptized two years ago when he turned 8, remember? That means he’s 10 now.”

“No he was baptized when he was 18, he’s in his 20’s now,” mom insisted.

This came as somewhat of a surprise to me, as mom has been pretty aware of all of our ages. Just one more reminder of how this disease is taking her away from us.

This weekend is her birthday; it falls on the same day as Mother’s Day. I don’t think she understands Mother’s Day in the least. Last year she did…but since that time she seems to have forgotten every holiday except Christmas. She does know that it’s her birthday. With her decline over the past year, we suspect it could very well be her last birthday that she is aware of. I don’t know if she will peel herself away from her computer to spend time with us, but our plan is to have dinner with her and try as hard as we can to bring her out and spend time with us for what could be her last birthday celebration.

Birth Day Memories

I’m a little late with this post, but this past weekend my baby turned 3 years old. I can hardly believe it. Isn’t he a cutie? I’m so in love with this little guy.

As we celebrated Ryder’s birthday, I was reflecting back to 3 years ago, as I preparing for his birth. My mom had been in the delivery room for all her grandbabies up to that point (except for my niece, who was born in Florida). I anticipated she would be there with me for Ryder as well. At that time, mom was exhibiting odd behaviors but we didn’t have a diagnosis for her yet. I admit I was a little annoyed with her when the issue of the delivery room came up. Although she wanted to be there, she couldn’t commit to it if I had happened to go into labor in the early hours of the morning because it was “too hard” for her to get up early. I was hurt, at the time, because it was so unlike her. Nevertheless, everything worked out when delivery day came. I ended up being admitted around noon and that worked out nicely for mom.

This was the last grandbaby that mom was in the delivery room for. Two more grandsons have been born since, and mom wasn’t there for either of them. In fact, she hasn’t even met my nephew who was born this past February. Sadly, she doesn’t seem very concerned about it. It’s all part of the disease…it’s definitely not the mom we once knew, who was ecstatic to be a grandma.

I am really grateful that, even though I “lost” my mom early on and my kids never really got to know their grandma for the person she once was, she was present for each of their births. These pictures will certainly be cherished for years to come.

Some Notable Changes

At one of my early visits with mom at UCLA, the doctor and nurse practitioner discussed semantic dementia with my dad and me and what it entailed. One of the difficulties with the disease is obsession about certain things. Obsessive was definitely a struggle that we had with mom at that point. For the past few years, mom had been obsessed about quite a few things. A few things really stand out to me that would drive us a bit crazy which mom would constantly obsess about:

1) Her “fibromyalgia” (I put quotes on it because we aren’t sure if she was experiencing real pains or if they were phantom pains brought on by the disease). Mom complained constantly about every ache and pain that she felt and was very exaggerative when she thought she was feeling some sort of pain shoot through her body. Almost every conversation revolved around these aches and pains.

2) Church. She loved to talk about her Mormon pioneer heritage with anyone and everyone. She would talk about church/beliefs with anyone she encountered to the point where sometimes it was a bit uncomfortable. She was determined to bring her friend from up the street, Maria, to church with her. She was obsessed with The Mormon Tabernacle Choir (she would BLAST the music from her stereo, sometimes singing along).

3) Her job. Everyone she met had to hear the story about what a great teacher she was and how they “picked” on her at work, eventually leading to a suspension and then a resignation on mom’s part (of course all of these problems were due to her disease, we just didn’t know it at the time).

Jill (the nurse practitioner at UCLA) told us that as the disease progressed, these obsessions would slowly go away. It would be a blessing and a curse: a blessing because we had become wary of so many of these obsessions and conversations; a curse because it just means she is farther into the progression of the disease.

A few weeks ago, a realization dawned on me. These major obsessions have gone away. There are some other obsessions that have remained; for example, her daily rigid routine, her hair and make-up regime. She talks about the same things to everyone she sees: how much she is changing in her 50’s, how upset she is about not driving, asking people to take her to Sam’s Club. Indeed, those are obsessions or fixations for her at this time. But those few things that once consumed her and used to drive us crazy the most have nearly disappeared.

Sometimes the changes are so gradual that, unless we look back to compare, we don’t realize how much mom is changing. Most definitely, the disease has progressed a lot in the past 6 months. The disappearing obsessions being one thing, her appearance being another. Her eating is becoming worse and worse; her daily menu now consists of: one “Slim Fast” in the morning (which we’ve swapped with Instant Breakfast to get some nutrition in her), a sandwich (usually pb&j) for lunch, an Ensure for afternoon snack, a Slim Fast for dinner (every 3rd day she will eat a solid meal, either a sandwich or tortellini, and skip the Slim Fast) and an Ensure before bedtime. Rarely does she deviate from this diet, despite all of our efforts to get her to eat actual FOOD. Her speech has drastically declined; even more since my last post about it.  All of these changes make me a bit nervous as I sit and wonder, what is lurking around the corner?

Memories of Mom

Last week was Spring Break for the kiddos. Spending time with them on breaks makes me reflect back and remember all the fun we had as kids. My mom always planned trips to amusement parks, to the beach, etc when we were home from school. I remember staying up late and watching old classic movies with her. Those memories are precious and I hope to make many memories with my kids that they will someday cherish.

We started out our break with a trip to Disneyland. Here’s a fun picture to share with you :)

 

After lunch, we went on the Winnie-The-Pooh ride.  As I sat next to my daughter in the “honey pot”, I couldn’t help but remember the last time I had been on that ride. My daughter was only a year old and my entire family had gone to Disneyland for my birthday. My mom was Winnie-The-Pooh’s biggest fan. She was a Head Start teacher and had lots of Pooh shirts, toys, collectibles, etc. So it goes without saying that she insisted on going on the ride that day. She was thrilled to sit with her grandbabies, singing and grinning and sharing in the magic of the ride.

Sitting on the ride (back to present day), my mind began to wander a little bit. Sometimes I can’t help but to think about what life would be like if mom didn’t have dementia. I know I shouldn’t torture myself like that, but some days it’s hard to push those thoughts away. We used to do so much together as a family. I found myself wondering, if mom were still “here”, would she have been with us that day? Would she be sitting on the ride with us right then? I could almost picture her beside me, singing Tigger’s song, “The wonderful thing about Tiggers…”

There was another night during spring break when my husband went to a hockey game with a friend. I decided to have a movie night with the kids and that sentimental part of me longed for those days when I had movie nights with my own mom over break. I wanted to give my kids some culture and expose them to the classics, like my mom did for me. Our movie pick that night was “West Side Story”. That movie became one of my and mom’s favorite movies to watch together. I found myself, sprawled out on the couch with my kids, singing along to all of the songs as if it had been merely days since I’d last seen the movie, rather than years. My kids indulged me and seemed amused with my singing and dramatics and it dawned on me: I was becoming my mom! She used to do the same thing- dramatically sing along to the movie, sometimes with gestures and all! I can still see her standing in our living room, fist to her chest, chin tilted up with a smirk on her face as she belted out the words (in a fake Puerto Rican accent) to the song “I feel pretty”. In fact, she didn’t need the movie rolling in the background to sing that one; she sang that song to me frequently.

I miss my mom a lot; I miss her so much that sometimes (oftentimes) it hurts. But there are little memories of her everywhere. I’m so grateful for all the fun memories that she has left me with. When my kids seem slightly embarrassed that I’m making them wear matching shirts to Disneyland or that I’m being a cheese-ball and singing during our movie nights, I know that someday they will look back at these memories with a fondness in their hearts.