Five Years

Today marks exactly 5 years since my dad took mom to UCLA and received the dreaded diagnosis: semantic dementia. I remember it like it was yesterday; the tears in my dad's eyes as he delivered the news that night while standing in his kitchen. The struggle to understand and come to terms with what the diagnosis meant. The grief, the anger, the acceptance (still working on that one). The course of my and my family's life was altered drastically that day. The past 5 years have brought about the greatest heartbreak and deepest challenges of my life. Yet, I know that the worst is still to come.

Five years ago, I wouldn't have guessed that Mom would still be with us today. According to the pamphlet that UCLA sent home, the average duration of FTD is around 7 years (at a follow-up appointment, the UCLA doctor told us the average for semantic dementia is 12 years, though it's different for everyone). Although it's hard to know exactly when this all started for Mom, we can trace signs back as far as 2007. By late 2009, we knew there was definitely a problem. That means that, while it's been 5 years since diagnosis, Mom has been dealing with this disease for 8-10 years now.

At this point, she is in the later phases of the disease, nearing the last stage but not quite there yet. Cognitively, she is very late stage, but the final phase brings about a disconnect between body and mind; the mind stops telling the body what to do (walking, talking, swallowing, eating, etc). Mom is still ambulatory (mobile) but I believe we are starting to see swallowing issues now. I would say that a majority of the time that she eats and drinks her water, she ends up coughing on the water. She isn't completely chewing her food either. Sometimes when she coughs, she will spit out chunks of her sandwich. A few times, she has coughed so hard that she's thrown up and we've seen the same issue with her partially chewed food. Other times, remnants of her food remain in her mouth and she doesn't swallow it all. Luckily, all she eats is pb&j and that is pretty soft going down and dissolves after being in her mouth for a while. If she were eating meats or vegetables this would be much more problematic.

If I'm just being completely honest here, it's a blessing and a curse (maybe curse is too strong of a word) that she is still here with us, 5 years later. It's a blessing because we've had time to make preparations and process what is to come-although I don't know if I will ever be fully prepared for "the end". It's a blessing to be able to serve her and care for her, even though she may not understand it now; it is a growing and learning experience for all of us. This has stretched me in ways that I didn't know I could be stretched. It's a blessing because she is still here physically to hug and love on (even though she pushes us away, lol), to say I love you to, to remember. I think one of the things I fear when she's gone is that people will just forget her. The hard part with this disease dragging on is watching her suffer and lose all quality of life, watching her forget everyone around her, watching the tears as she struggles. It's hard to see my dad go through this; I know he struggles but he handles it like a champ. He doesn't ever complain about her, even when he's up 20 times a night with her (no joke!) In fact, just last night we were talking on the phone and he told me that if she wants to get up 10 times a night and fix sandwiches or look out the front door, he'll get up with her 10 times a night and he will re-tuck her into bed just as many times. "One day I will miss it," he told me. His strength, love and dedication is a great lesson to me (it brings tears to my eyes just thinking about it). [He is probably going to be embarrassed that I write this, he is very humble and doesn't see himself as the inspiration that others do].

Five years goes by in a blink. I'm fairly certain that we don't have another five years with her; I'd be surprised if we have two (although I never thought we'd make it this long!) But as long as she is here, I will continue to love her and care for her to the best of my ability. Like my dad said, one day we'll miss this.

Below are pictures of her progression, from before diagnosis and then from 2010-2016.


Before diagnosis


2010- right around the time when we knew something was wrong and were seeking answers


2011-a year before diagnosis


2012- her birthday, the year she was diagnosed


2013-our last family camping trip


2014-the year of dark make-up and (later) the blue eyebrows


2015-the best picture I could get for Mother's Day


2016-taken last Mother's Day


Not quite 2017, but close enough (taken at Thanksgiving)

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?

UCLA Follow-up

When my mom was given the probable diagnosis in March, of semantic dementia, a hundred questions raced through my mind. Of course I wasn't going to wait until a follow-up appointment to learn about her disease; I began reading everything I could find on FTD and semantic dementia. Between March and now, she has had an MRI to confirm the diagnosis. I suppose this visit was a follow up to discuss the results of the MRI (although they had already confirmed over email that the findings were consistent with semantic dementia). Though I feel as if many of my questions have been answered over the past few months of research, I have still been anticipating this visit to UCLA. I guess sometimes it helps to hear the answers straight from the horse's mouth.

I walked into the extremely cool, air-conditioned building of UCLA medical around 10:15 this morning. My dad was parking the car (we were running a tad bit late...good ol' LA traffic); he dropped us off in the front to get mom checked in while he parked. I don't know if it was the chilly air or my nerves, or maybe both, but my teeth would not stop chattering. Why was I so nervous? I knew what to expect, but coming face-to-face with reality was a bit overwhelming for me at that moment.

I saw an older, short woman with short grayish hair approach the waiting room, her eyes searching for someone. I looked at her nametag that read "Jill" and knew she was looking for us (I've heard all about nurse-practitioner, Jill, since the last visit. I felt like I knew her already!) She finally recognized my mom and started to say hi just as I told her that we were the people she was searching for. My mom gave her a blank look.

"Hi Deana, do you remember me? I'm Jill, your nurse."

My mom looked at her with a blank expression on her face for several seconds. She finally uttered an "oh yeah" as she began to remember her last visit.

"How was your drive?" Jill asked my mom, remembering that the last drive out there had wreaked havoc in my mom's stomach, and consequently in the car and on her clothes.

Wrong question. All mom heard was the word "drive".

"Driving? Oh yeah, I was really so sad the last time I came out here and you guys cancelled my driving even though I'm really a good driver. I was always a good driver, I don't know why you had to cancel me, I was really sad about that too..."

She went on for a good minute or two and Jill just gave me the "uh-oh" look as she realized she had just opened a can of worms. She tried to gently redirect her and change the subject. She finally told us to have a seat and wait a few more minutes while she checked to see if the doctor was ready.

After a few minutes, we were called into the doctor's office with Jill, Dr. Mendez and another guy who wasn't introduced to us (I believe he was a neurology professor who was there for observation). Dr. Mendez reviewed some things with us from the past visit and asked my mom some questions. She had a difficult time understanding why she was there; she asked them to help her with her headache medicine and went on many tangents throughout the meeting about her driving situation.

Dr. Mendez pulled out a big book that contained pictures of objects. The beginning pages were sketches of everyday items. He asked her if he knew what the items were for and what they were called. She identified that the sketch of the comb was for "combing hair", but couldn't name it as a comb. He showed her a sketch of a toothbrush.

She stared hard at the picture and finally said, "Hmph. It looks familiar" and then shook her head.

He showed her a picture of an octopus and asked her if she knew what it was. She didn't know. He showed her several more pictures of animals: a camel, a horse...I really can't remember what else because at some point I finally had to look away; my heart couldn't take it. Tears welled in my eyes as I watched my mother struggle with each answer (every answer was either "I don't know" or "a dog"). I took a deep breath, looked at the door of the room and told myself that I would not break down in front of these people.

The next round of pictures was of celebrities: Ronald Reagan, Elizabeth Taylor, Marilyn Monroe, etc. She could not recall who one of those people were. My mom has always been a big classic movie fan. I remember watching many movies with her which featured Elizabeth Taylor and Marilyn Monroe; she had no clue who they were. She kept asking "How would I know these people?..."are these people I know?" and she would read the headline on the page: "famous people". She finally looked up at the doctor very suspiciously and said,

"This isn't you, is it?" Then she glanced around the room, as if we were all tricking her. "These aren't pictures of all of you people, is it?"

I have to admit we did get a few chuckles out of it, mom included. We assured her that none of our pictures were in the book.

Dr. Mendez then showed us the results of the MRI. He explained the findings in the brain and how they were consistent with semantic dementia. In the picture of her brain was a dark circle. He explained that it was a hole in her brain. That part of her brain is disintegrating.

Basically, semantic dementia is caused by a protein called TDP 43. This has only been discovered in 2006, so there is still a lot unknown in this particular form of dementia. From what I can conclude, it seems that this protein eats away at the lobes in the brain. There have been recent clinical trials of medicine to treat this disease; it was concluded as being ineffective. There is no treatment at this time. Based on the cognitive testing (and I'm guessing what he saw on the MRI), Dr. Mendez categorized her as "moderately advanced" in this process.

Now for the good news. How can there be any good news in this??? What I really loved about Jill was that she wanted to focus on the positive. There is so much negative, and news like this is devastating. So she took time with us to point out the positives in our situation.

#1. There is NO genetic link in semantic dementia. What a huge sigh of relief I breathed today. Most of the information I've read points to no genetic link, but there have been a couple things I've read that say there is a higher chance of carrying the gene for children of people with dementia. Jill reassured me not to waste any time worrying that this will happen to me or my siblings, kids, etc. Whew!

#2. In my research, I've read over and over that the duration of this disease is generally 6-8 years. She says the duration is longer with semantic dementia. It is generally 12 years, but there is no definitive answer as it varies case by case. It could be longer, or it could be shorter. To be honest, I don't know if this is good news or not. I don't want my mom to suffer. For now I will view this as a positive because it means that we have more time left, to make memories, than I had originally anticipated.

#3. Mom has a lot of obsessive behaviors. It doesn't seem like a positive, I know. But many dementia patients have safety issues (due to extremes in their behaviors), problems with hygeine, eating (weight loss), taking medicines, etc. Because my mom is obsessed with taking her medicines on time, sleeping for certain lengths of time, showering and "decorating" her hair and make-up, this works for our and her benefit. She does not have the problematic behaviors that so many others face.

#4. Along with #3, the frontal parts of her lobes are not as damaged. That part of the brain is the part that focuses on behaviors. Though her behavior and personality has changed with this disease, it is not the same changes in behavior you will see when this part of the brain is damaged. When or if the damage spreads to this part of the brain, we may see more mean and aggressive behavior, outbursts, etc.

#5. She is still classifying things in categories. For example, aside from the octopus, she still identified the animals as such. Even though she thought most of the pictures were of dogs, she still recognized that they were animals. She identifies food in the food category, even if she's not sure what the name of it is, and so on.

Out of all the forms of semantic dementia, this is the most rare. Jill gave me some resources to find support for people with this specific disease, which I fully intend on utilizing. They will follow up with us every 6 months, to check on her progression and help us in whatever difficulties we face.

After an hour and a half consulting with Jill and Dr. Mendez, we left UCLA. Our questions are answered...for now...until we think of new ones to ask. It wasn't all doom and gloom as I had expected. Yet I still find myself emotionally exhausted, as I try to sort everything out in my mind. Aside from my husband and my Aunt (who I'm very close to), I haven't talked about this with anybody. In fact, I've kind of been avoiding talking about it. I'm usually pretty open and don't mind talking. Today, I just needed my space to take it all in and process it. I find it easier to share through writing than by speaking. I wanted to write while it was fresh in my mind. And I needed to write for my own therapy today. I'm sure there is a lot of information I've forgotten to write in, but it's all I can manage for now.