Friday, April 18, 2014

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.


Wednesday, April 9, 2014

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?

Sunday, April 6, 2014

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 :)


10154387_10152101965378772_611877002_nAfter 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.

Monday, March 31, 2014

Another Funny

Both my dad and my sister shared a funny story with me that was too good to not share with my readers. This should give you a good chuckle ;)

Last week, dad arrived home from work one evening and was greeted by mom. She was talking a mile a minute as she filled him in on her day. She was very pleased with herself for accomplishing some chores around the house.

"It was so good too, I washed some dishes too...but something so weird happened, one plate disappeared and one plate broke apart it was so weird. Come here and see what happened it was so weird..."

Mom led dad into the kitchen and dad was trying to make sense of what mom was saying. He was preparing himself to find a broken dish; wondering how she would have managed to break the dish while washing it. He peered into the sink and, first, saw one plate washed and drying in the dish drainer. He then looked into the "washing" side of the sink and saw some sort of mess under the faucet. He looked a little closer, picked up the mess in his hand to inspect it further, and started to laugh. Mom had tried washing a paper plate!

Wednesday, March 19, 2014

Confidence to Care

Part of sharing this journey with my readers is passing along information that I have found helpful.

Recently, I read a book entitled "Confidence to Care" by Molly Carpenter. This book was written as a resource for families struggling with dementia and Alzheimer's. It was a very easy read, easy to comprehend and was broken in to chapters addressing different behaviors and difficulties while dealing with this disease. For somebody who has a loved one in the beginning to mid phases of dementia, this book could be quite helpful in showing what to expect in the disease. There are also suggestions on how to handle certain behaviors. I think for many people who are new to dementia or don't quite understand all that it entails, this book would be very helpful and insightful.

Something else that I liked about the book was that it gave dialogue to help guide in dealing with different scenarios. For people (especially) who are struggling to handle these behaviors, this is incredibly helpful! With that said, I think the dialogue portion is geared more towards Alzheimer's or dementias other than mom's (which is semantic). Mom's specific type of dementia makes it incredibly difficult for her to understand most of what we say to her (though it might have been more helpful in the beginning stages). The dialogue won't really help much in our specific situation.

All in all, if you are new to dementia, or even struggling to understand certain behaviors, unsure of what to expect, etc, I would recommend this book to read. Like I said, it's easy-not filled with a bunch of medical mumbo jumbo that regular people like you and me can't understand-and there are many helpful tips. You can find it here at this link and for future reference, I will also list it under my "books to read" tab at the top of the page.

Monday, March 17, 2014

What’s Wrong With This Picture?

Can anyone see what is wrong with this picture?

20140317_102028I was chuckling this morning when I walked into mom’s room and found her wearing her shirt backwards. I tried to tell her, knowing full well that she wasn’t going to understand what I was saying. So I did the only thing I could do…I showed her the tag on the front of her shirt. It took a minute to get her attention (even with me tugging at her shirt) but she finally looked down at the tag I was pulling out from the inside of her shirt and started to connect the dots…sort of.

“Oh yeah, I was gonna ask you about this if this was right,” she said, seeming unsure of how to solve the problem.

I took her arm and tried to show her that it needed to come out of the sleeve and the shirt turned around. She finally figured it out, turned it around and then went back to her hair curling. It gave me a good morning chuckle.

Tuesday, March 11, 2014

Just For Mom

Part of mom's disease (semantic dementia) is obsession or fixation on certain things. One of the things she became fixated on early in her disease was going to the LA County Fair in the fall and buying earrings for my sister and picture frames for everyone; not just any ol' picture frames, but specific frames that had each person's name carved out of wood and made into a matting inside the frame. Years ago, she bought these frames with both her and my dad's names as well as each of her three children's names. Inside the frame, she inserted a baby picture of each person. She must have done this right before she was developing her dementia because it was shortly after she had done her own wall that she started buying the frames for each of her children and grandchildren. Every year a new grandbaby was born, she would wait for months until it was time to go to the fair and buy another picture frame. One year, she even became obsessed with going to the fair so that she could buy one for her sister for her upcoming birthday.

Every time mom would come to one of our houses, she would hound us about the picture frames. She wanted to know where they were at, why they were on a shelf rather than a wall, why one of the frames was blank (with no picture). I remember one holiday season (2012) I had put my picture frames away in order to display my holiday decorations. Mom was confused at why I had moved the picture frames. Everytime she came over, she would ask about the pictures and was very disappointed that I didn't have them on display.

"I just put them away for the holidays mom; I'll bring them back out after Christmas," I would explain.

Even after I brought them back out, she was dissatisfied. You see, I displayed them all wrong. I used current pictures of my kids, and I hadn't even gotten around to putting a picture in my or my husband's frame. Mom would usually say something like,

"You need to put in baby pictures like I did on my wall, it's so good too. That's how you're supposed to do it."

Well...for the past couple months I've been working on redecorating the downstairs of my house. I finally figured out a good wall for those pictures and decided to do it "right", just for mom. The sad thing is, I don't know if mom will even notice them now; I haven't heard about it in quite a while. Nevertheless, I dedicate this wall to my mom and think of her everytime I look at it. What a fun idea to display all of our baby pictures! I can't wait for mom to come over to my house again and see my new wall.