Monday, April 25, 2016

Rollercoaster Ride

Dementia is such an emotional roller coaster. Lately, I feel like I've been holding everything inside. I'm not a big crier...I'm sensitive and emotional at times but I don't like crying, especially in front of people. So what do I do? I hold it all in until I end up having an emotional break down.

The past couple of months have been extremely difficult for me-with having to put my mom in a diaper and watching her decline more and more (that's just the tip of the iceberg). It's emotionally exhausting. I try to be strong: for my family and for myself. I tell myself that I can handle this and that I'm not going to let this disease break me. There are days that I do feel very strong and kept together. But then there are other days where it is just too much. The past couple months have had many days like that and it's been building and building inside my dam of emotions.

On top of the stress and heartache of my mom, I still have a life outside of caring for her. It's a balancing act to try and be everything for everyone. I try to take some of the burden off my dad by caring for my mom on my assigned days, and filling in when others can't make it, and I take care of the caregiving schedule. That seems easy enough but it can also be a headache at times. It seems like for the past two months, there are at least a couple shifts per week that are uncovered, so I'm scrambling to find someone to cover or I end up doing it myself.

Sports season is in full swing now as well. We've had baseball and acro (tumbling), swim team, GATE club (an after school program for gifted and talented education), church activity days and then my daughter wanted to do a song/dance with a group of friends for the school talent show. It ended up being a little more involved that I thought it would be, so for the past 2 1/2 months we've spent 1-2 hours every Wednesday after school teaching the girls the song and choreography for that dance. If sister is in the talent show, then brother wants to be in too so we've also been working on an act once a week with my son and his two friends. Needless to say, my plate has been full! I'm no different than any other mom; we all have a lot on our plates. But with all factors involved, I've been left feeling drained by the end of the day, physically and mentally.

Last week was the talent show (now I can mark one thing off my list) and I almost made it through seamlessly. Almost. Unfortunately, there were a couple of kinks to work out at last minute which resulted in a lot of stress the day before the show. Luckily everything worked out, but in the moment it was a little bit more than I could take and I kind of took the brunt of it for both groups. Some things were said that hurt my feelings but I know that I'm also extra sensitive right now because everything has been building. By Thursday night, the dam had broken and I locked myself in my bedroom, laid on my floor for an hour and half, un-functional, as the tears poured out, unstoppable. I felt stupid for a lot of things, including my reaction to the stress, but I guess it was inevitable with everything I'd been holding in. I cried for everything that had transpired those past couple of days but that was really just the icing on the cake. I knew many of my tears were those that I was holding back for my mom.

Today is the start of a new week. I'm ready to wipe away the tears and move forward. But I need to learn that crying is okay. I've lost a lot; I don't say that to pity myself, but rather to reassure myself to be patient with myself and know that I don't have to hold it all in all the time. Many people don't know what it's like to lose someone who is still living. I'm not perfect and I never will be. But I am doing my best!

And now, for your viewing pleasure, and to make this post a little more happy, I'm sharing my kids' videos from the talent show.

My son did a glow-in-the-dark dance with his two best friends. He is the one in the green, to the far right. Click here to see his video.

My daughter performed a song and dance to Annie's "Hard Knock Life" with 7 other friends. She is the one who starts out holding the sheet, on the left, and she does the solo part mocking Ms. Hannigan. You can view her video here.

I'm proud of my kids and for their hard work!

Thursday, April 21, 2016


While raising my children, there have been certain milestones that I've waited for them to reach as they've grown. The earliest milestones that I can remember include sitting up on their own, first words, crawling, walking, eating solid foods. As they've grown, they've learned so much within those first few years of life: developing fine and gross motor skills, learning how to socialize with their peers, how to tie their shoes, and perhaps one of my favorites: how to go potty on their own. The list of accomplishments goes on and on. With each milestone, I feel a sense a pride at the tasks my child has accomplished and I marvel in the wonder of them learning and developing into little people.

With dementia, these same sorts of "milestones" exist, only they are not so pleasing and exciting. Rather, they are quite the opposite. Each "milestone" brings us closer and closer to the end. Let me break down the "milestones" I am referring to.

I learned early on in the disease what we would be dealing with as mom's disease progressed. It was hard to share this information with my family and I think there was even a bit of denial that it would really come down to this, and so I shouldered the burden of knowledge and waited for these things to come to pass. I've said before that dementia is, in a sense, like growing backwards. While children grow and learn new things with each year of life, my mom forgets these things with each year (or even more rapidly than that). Dementia takes you from being an independent, intelligent adult to eventually becoming like a child again, fully dependent and not knowing how to care for oneself any longer. I think of it in phases: the childhood phase, then the preschool phase, then down to toddler and finally infancy. With each of these phases, mom seems to be on the developmental level of each of these age brackets as she forgets what she knew just months before.

First, she was losing her social inhibition (this tends to be one of the later skills that children master). Slowly, she has been losing the ability of doing her hair and make up until finally, it looks as if a toddler has gotten into mother's make up box and smeared color all over her face. She's gone from dressing herself to being super obsessive about matching (not being able to distinguish between matching and coordinating), dressing herself with clothes inside out and backwards to now needing assistance at times to get her clothes on and off. Her fine motor skills have gone by the wayside; it started with misspelling, partial sentences and sloppy writing. I haven't seen her read or write in close to a couple years now. Her speech is very minimal; most words are gibberish and difficult to understand; comprehension is gone.

The later phases of the disease look a lot like infancy. A person affected by dementia will eventually start losing balance and the ability to walk. Chewing and swallowing become difficult and choking becomes a real concern. As a result, many people end up with a liquid diet or pureed foods, much like baby food. Incontinence sets in which results, most often, in adult diapers. Speech regresses until there are no words left to speak. They spend a lot of time sleeping, much like a newborn Indeed, it is like caring for a newborn child in an adult's body until finally, their body completely shuts down.

As you can imagine, it's been difficult to come to terms with all of this and I know my dad has remained the forever optimist, thinking maybe she won't get to those phases. If she is spared from going through the complete course of the disease, it would only be because grace steps in and takes her from something else instead (a heart attack, stroke, etc).

I can't tell you how long my mom has left. That question goes through our brains everyday. I try to make the most of the time I do have with her because truly, we don't know how long until the disease rips away the rest of what is left. And truthfully, I pray that when/if it gets to the point where she is completely bedridden, that it goes faster rather than slower. At any rate, what I can tell you right now is my observations of what has been happening as of late.

For a while now, it seems like mom simply inhales her sandwiches and doesn't take the time to chew. The other day I stopped to observe her while she ate her sandwich and I've noticed that she isn't really biting down when she chews. She moves her jaw but what she does resembles more of "gumming" her food, like you'd see in a toddler. I guess in this way it's somewhat of a blessing that all she'll eat is pb&j sandwiches because at least it's a soft food and harder to choke on than say, a steak. Even still, she eats quickly, swallowing large bits of sandwich that aren't chewed (this evidence was found in her vomit a few weeks ago) which results in coughing while she eats. She often ends up with big hiccups by the end of her meal. We won't talk about the mess that is made while she eats; if you've had a toddler, you can imagine.

We've also noticed several occasions where she has ensure spilled all down the front of her shirt. She seems to be having problems drinking out of the bottle. She will not drink out of cups; I'm not sure how that would go over if we tried. She only drinks out of water bottles and ensure bottles and like I said, it's getting harder for her to make it all in her mouth.

We've been lucky that she's had no falls. But I can tell that her balance and coordination is worsening. When I help her to get her legs into her pants, she has to hold onto the wall of the bathroom to steady herself and prevent from falling over. She can't raise her legs very high, so I bunch up the legs of the pants and bring them as far down to meet her foot as possible. She has been struggling to get her socks on as well. I usually bunch them up and help her get them on over her heel. If I don't do this, she oftentimes can't get the sock on over her heel and she ends up with the sock hanging halfway off her foot and bunching up inside her shoe.

And one of the hardest things of all: incontinence. This has been hard to talk about because it's like stripping away the last of her pride. Of course, we know it's not her fault; it is the disease. Nevertheless, it breaks my heart that she is struggling with getting to the bathroom in time; most times she doesn't seem to even notice that she's had an accident. This issue began six months ago and has been progressing since then. In times where she isn't feeling good (if she has a cold or something) it gets worse during that time period. In fact, a couple of weeks ago, mom had a rough week. The worst of it was on a Monday, when I was sitting with her. She had a little bit of a cough and she had had several accidents between that Friday before and the Monday that I was there. By Monday afternoon, she'd had an accident within an hour of her last accident and I was down to one dry pair of pants for her. I knew what I should do, but it was really difficult in doing it. My dad hasn't wanted to put my mom in diapers. He wants her to be as independent as possible and I think there's a fear that once we put her in them, she'll become dependent and not use the toilet anymore. I was really worried that he would be upset with my decision, but not knowing what else to do, I changed my mom into an adult diaper (I had brought over a pack months ago, just in case). I can't describe to you how difficult it was for me to put that on her or to step back and look at my mom wearing it; she was resembling a grown toddler in every sense now. My heart broke for her, but it was necessary.

Fortunately, the accidents lessened up by the end of that week so we went back to underwear and incontinence pads, but it is a battle that I'm afraid is not going away. Additionally, we have struggled with her flushing things down the toilet (washcloths, pads, etc) and using towels in place of toilet paper...that is her new norm. It's unpleasant and smelly but at least she is using something. I've heard horror stories from other people.

I fear that it's truly the beginning of the end. What I have described is typically what you see in the later phases of the disease, though there's no real guess as to how long the later phases can go on. I think (from what I've read and heard from others' experiences) this phase can last a few years. I speculate that we may have a couple years left at most. But...she could surprise us all.

Thursday, April 14, 2016

Where The Light Gets In

It's been exactly 4 years, 1 month and 1 week since mom's diagnosis of semantic dementia. I still remember it like it was yesterday. I had been anxiously waiting all day to talk to dad about how mom's visit at UCLA went. When I called him for a report that evening, he responded that he'd rather not talk about it over the phone and suggested that I come over a little later to talk. My stomach was in knots, a mixture of anxiousness and hesitation to hear the results, but also hope that they had figured out what was going on with mom-and were able to help her get better. I helped my husband tuck the kids in bed and raced over my dad's house. Though we suspected (due to our research on her symptoms) that there was something affecting the frontotemporal region of her brain, nothing could have prepared me for the news I was about to hear.

I remember walking in the front door and meeting my dad in the kitchen where he sat at the table. He got up and busied himself with a few things while I stood nervously nearby, waiting for him to spit it out.

"So?" I asked. "What did they say?"

The image of my dad revealing the news will forever be seared into my memory.

"Well," he started, picking up a pamphlet from the table beside him. "There's good news and there's bad news," he said, looking down at the pamphlet. "The good news is that they are pretty sure they figured out what is wrong with her. The bad news is that they say she has a brain disease called semantic dementia. And, it's not going to get any better."

His eyes wouldn't meet mine when he said it. He looked down at the floor, tears welling in his eyes as he fought the downward frown of his mouth in an effort to keep a brave front. He dabbed at the corner of his and then finally brought his eyes to meet mine; I stared back at him speechless.

Semantic dementia. Dementia. The words played over and over in my mind. What does that mean? I didn't understand. It couldn't have been dementia. It was damage as a result of her surgery, and it was supposed to get better.

Dad handed me the pamphlet and recounted their day at UCLA: the tests, the questions, the explanations from the doctor, the plan for the next steps. I felt confused and was left with many questions. I went home that night and over the next several weeks I scoured the internet for any information on FTD, specifically semantic dementia. Every medical article I read left me feeling more and more helpless, afraid and full of even more questions. Additionally, I wasn't ready yet to tell my dad everything I was learning-and he wasn't ready to hear it- because the outlook was bleak. Words and phrases such as "incontinence" and "difficulty swallowing" and "inability to speak" continually appeared over and over in my searches. I remember feeling so overwhelmed and wanting someone to talk to-someone who had been through this themselves. That search, however, was much more difficult. Aside from a yahoo support group about PPA (a variant of FTD that closely resembles SD), my search came up empty. There were plenty of people talking about Alzheimer's, but I couldn't find anyone writing or opening up about FTD.

In my state of loneliness, I decided it might be therapeutic for me to write down what was happening and how I was feeling. It was an outlet for me and also a way to track mom's progression. I wrote it in the form of a blog (this blog) but had it set to private; it was only for my eyes. A short time later, however, I mentioned to my sister about my writings and I sent her an invitation to read my private blog. She was relieved to see it written out in a way that people could easily understand what was going on with mom and she asked my permission to share it with a few of her friends. At that point, few people knew of my mom's diagnosis and it was really difficult to articulate and explain to people what that meant. Along with that, several friends and family members were put off by mom's odd behavior. After talking with my sister, I decided to send my blog along to family members to read so they could gain an understanding and empathy for what mom was going through (note: by the time mom had received a diagnosis, she did not understand what the word dementia meant).

My family thanked me for opening up and sharing and were sympathetic to what was happening. Furthermore, they were able to see my mom in a different light; rather than being put off by her oddities, they began to understand that her behavior was beyond her control and they made more efforts to be kind and understanding.

Shortly after that, my sister sent my blog to a good friend of hers, and this friend messaged me and said,

"You have a true talent for writing. Have you considered opening up this blog for others to read? You could probably help a lot of other people."

The thought hadn't crossed my mind; I didn't want to do anything to further my dad's pain or make him uncomfortable. Yet, I couldn't forget the feeling of isolation and loneliness I felt those months after mom's diagnosis; a feeling that nobody around me understood the heartache I was going through. I thought on the idea for a couple of weeks before mustering up enough courage to talk to my dad. With his blessing, I opened up my blog to share with other people. Over the [nearly] past 4 years, I have had many people email and reach out to me to thank me for writing while sharing their own experiences of their mom/dad/brother/grandma/etc with FTD. It has been such a blessing to me to connect with all of these people. There are moments I have doubted myself for writing, but every time I receive a new message of gratitude from someone else across the globe who is struggling like me, I know I am doing the right thing. By sharing their stories with me, it helps me to know that I am not alone in this either. There are other people out there who understand exactly the heartache my family is experiencing.

That was a bit of a long introduction to what this post is really about. But the past few days have brought up a lot of past memories and recollections and I feel it's an important background for what I'm going to write about next.

Several months ago, a friend sent me a link to an interview in Redbook magazine with Kimberly Williams-Paisley (who you all know as the adorable bride on the screen hit "Father of the Bride" of my and my dad's favorite movies!!) It was a heartwrenching interview, actually written a few years ago, about Kimberly's mother's disease: FTD (specifically, primary progressive aphasia, which is the sister disease to my mom's semantic dementia). As I read her interview, I felt a connection to this person, who I had never met. I could relate to so much of what she said and at times I felt like I was reading something that I had written myself! It was an indescribable feeling to know that I wasn't alone in what I was dealing with and the personal battles I was facing. I thought to myself, finally! Someone who know exactly what I am going through and that could relate to me! (nevermind that she's a celebrity who I'll never meet, ha ha).

After a little more research, I learned that she was a writing a book-a memoir about her family's journey with this disease. I haven't admitted this on my blog before...but I actually started writing my own memoir of our family's journey a couple of years ago, using excerpts of my blog, after the promptings and encouragement of several readers and family members (it's a long work in progress). I couldn't wait to read her book. As soon as I learned of the release date and preorders were made available, I ordered a copy of her book, entitled: "Where The Light Gets In." The day the book was released, it arrived on my doorstep.

I have spent the past few days engrossed in this book; every quiet moment I could sneak in, I buried my nose in her words. There were parts where I literally laughed out loud and exclaimed to my husband "Jeff, this is just like mom!" And other parts where I had to hold back the tears (I couldn't have any other parents at swim practice see tears sliding down my cheeks!). I could relate to all of the emotions she wrote about in her journey: the fear, the anger, the denial, the acceptance of her mom (in fact, one section of the book reminded me of the blog post I wrote for another site, about learning to love my mom again). I could especially relate to Kimberly's sister, Ashley, who like me, bore the burden of knowledge from reading and educating herself on what was to come, while other family members weren't quite ready to hear it. I believe Ashley and I were even on the same yahoo ppa support group!

I appreciate that Kimberly put it all out there; she didn't hold back. I know from experience how vulnerable you become when you open up and share with the world, especially not knowing how people will receive it. But I appreciate that she did this. Her words have helped me and I know they have/will help so many others who are going through this. (And, she's inspired me to start writing again!)

I wish this book would have been available the minute I learned of my mom's disease. It would've been such a comfort to me in those lonely times to know that I was, in fact, not alone in what I was facing. I am sharing and recommending this book to all of my readers: whether you are just starting out in your journey, whether you find yourselves in the later stages, or even if you are a reader not stricken by this tragedy known as dementia, Kimberly's book was an uplifting book and sent an inspiring message of family and unconditional love.

So, if you haven't gotten your copy yet, go buy it. In fact, go buy it on Amazon. And when you do, please take 20 seconds to register yourself on Amazon Smile as your gateway to enter Amazon shopping (bookmark it!) You can select The DEANA Foundation as your favorite charity and every time you shop, the foundation will receive a small portion of what you spend. It is such an easy and practically effortless way that you can help the foundation, in turn helping families affected by dementia.

Monday, April 4, 2016

New Hair

I've been struggling with writing over the past month or so. To be honest, I've been in a bit of a funk and been feeling really down about things regarding mom. Her disease continues to progress, we've struggled with having consistent help (which has resulted in a lot of extra shifts for me). Don't get me wrong-I don't resent being here to help. In fact, I am grateful that I have the flexibility much of the time to come over and be with her. But there are times that it all gets to be a bit overwhelming. Sometimes it's hard to not think about all that we've lost and imagine what life would be like if mom had never met this fate. I find my thoughts drifting and imagining how different life would be for my children if they had their grandma here to love them and nurture them, and me having a mom to guide me with her wisdom. This is where my mind has been over the past month and I just haven't felt up to writing about all of my woes.

So today the pity party must end. It's time to get back on track and be the strength that my family needs. I figure it's okay to cry about it now and then, but I have to pick myself up and move forward.

Today I'll share something a little more lighthearted. To begin with, mom's hair has grown out very long. This is the longest I've ever seen her hair! For a while it was kind of fun to see her hair long, but she no longer brushes it and even more recently, she is struggling with washing it. It used to be that I could get her into the shower and she'd wash her hair by herself. Now, she doesn't even get her hair wet. She pours half a bottle of shampoo on her dry head and leaves it at that. Needless to say, I've had to get in there and be more proactive at helping her wash and the length has added a challenge to both the washing and combing/drying process (she doesn't stand still long enough for me to dry it all the way). My dad and I figured it was time to get her a hair cut, but of course that it is another problem in and of itself. She has completely forgotten about going to the salon and if we try it at home, how do we get her to sit still long enough to cut it? I suggested to my dad that we try while she is outside sitting in her chair, since that seems to be her new favorite past time. We thought about bringing a professional in, but that would be challenging for them and since we know her best, I decided I could make an attempt at cutting her hair. I'm no professional by any means, but I've trimmed before and at the end of the day, it probably doesn't matter much if it's a perfect cut.

Yesterday was the big day. When I went to dad's house, we got out the scissors and lured mom out into the front yard and into her chair. The second I touched her hair, she protested. I had my nephew and my husband for back up while I tried to quickly cut the bulk of her hair. She wasn't too happy with it, but in the end I succeeded in getting her hair cut above her shoulders.

I took off quite a bit of hair!

It was near impossible to touch it up and get it perfect. I spent the remainder of the afternoon following her around with the scissors and cutting long stragglers. I was able to get her sitting down a couple more times as I quickly attempted to even out parts of her hair. The back ended up a little layered and it almost has an A-line effect. It's not perfection by a long shot but still, I think it suits her. I love all the natural wave she has in her hair. She has spent so many years drying and curling her hair with a curling iron that I never realized how much natural curl she has! That must be where I get it from! All in all, it worked out and I think it will be a whole lot easier managing mom's hair!