Saturday, June 11, 2016

Crazy Town

Dementia makes you crazy.

I'm not talking about the person diagnosed with the disease; I'm talking about the caregiver. I'm talking about myself. If there's a sane caregiver out there, I'd like to meet them. Or maybe not, because then I'd feel even worse.

Lately I feel like my emotions are all over the place. Sometimes I feel strong, resolute. I am proactive with my work in the foundation, which gives me a focus and a purpose. I am patient with my mom and I get the job done without breaking. I try to focus on all of the good things I have going on in my life, things that bring me joy: my beautiful kids, my incredible husband, my amazing and supportive friends, my home-based sewing business (which doubles as my therapy time!).

But mostly, I just put on a brave face as I face the day, going to play dates, escorting the kids to their sporting events, attending church groups. I wear a smile on my face but inside, my heart is ripping into two. The truth is, my mom is always on my mind. Always. The sadness always lingers with me, like a black cloud. I worry and think about her when I'm away and miss her when I'm with her.

It's a complicated thing-to grieve for someone who is still living. I don't think there's any way to describe it to a person who has never experienced it. You grieve for the loss of the person that was once there, while still holding on to the physical being that remains. The grief is relentless and suffocating at times. I feel on edge; any unpleasant thing can bring me to tears. I am a ticking time bomb; one wrong move can set me off.

It's a continual rollercoaster of emotions; one day I'm up, the next I'm down.

Over the weekend, we received some unpleasant news that kind of sent me into a downward spiral. It would have been upsetting even if my life weren't plagued by dementia, but that dark, hovering raincloud (called dementia) met with this other passing, dark cloud and together they brewed a nasty storm. I stewed about this particular situation for days and I was left feeling, hurt, sad, and angry. Very angry. I'm not even saying my anger is justified, but when you're already slightly unbalanced it's as if the senses are heightened and what might start out as disappointment or sadness can easily fester into some other (stronger) emotion. For me, it was a lot of anger. Anger at the situation but probably mostly triggered by this disease. I'm angry that dementia has made me such a basket case. I'm angry for the strain it has put on some of my relationships, and at the people who I feel have let me down over the years. And most of all I am ANGRY that this disease struck my mom. I am angry for her, that she has been robbed of what is supposed to be the best years of her life. I am angry that my dad is losing the love of his life, for the pain and the helplessness he feels at watching her slowly fade away each and every day; for the helplessness I feel for not being able to fix it and make it better. I am angry that I've lost my mother, who was so much more than my mom; she was also my friend, my confidant and therapist, the one person that I could talk to without fear of judgment, who could give me advice or help me navigate my way through a problem, the one person who loved me and thought the world of me. I am angry that my children have lost their grandma and will never experience what I had growing up: the grandma to spend the night with, to bake cookies with, to have at every one of their music recitals or sports events or any important life event, to be their biggest cheerleader and to be their refuge from their "mean" parents. This is the kind of grandma I had and this is the kind of grandma that my mom wanted to be. And I'm ANGRY that was all taken away from us.

I don't usually post negativity on my blog; I like to keep it away and I don't want to sound like a whiny, sniveling baby. I'm not the first person to lose their mom at a young age and I'm certainly not the last. At the same time, I think it's only fair to my readers to be real. Somebody out there might be reading this while riding their own rollercoaster of emotions and I think it's important for them to know that they aren't alone in this. Because so often with this disease, we feel alone. I feel alone. You aren't crazy. Or maybe you are. But if you are, I'm right there with you!

Wednesday, June 8, 2016

Diaper Rash

Incontinence. I hate that word.

I've known from the beginning that incontinence is part of the disease. But four years ago, it was hard to imagine that it could actually happen to my mom. I thought maybe it would skip her, or only happen in the very last weeks of her life. In fact, I prayed that when the incontinent phase did hit full swing that the end would come quick. Nobody should have to suffer like that. My dad was optimistic that maybe this phase would pass over her altogether.

Mom's incontinence started in October, but it was sporadic. She might go a few weeks without a single accident and then have accidents two or three days in a row. It's easy to say to put a diaper on her, but much harder to do. Over the past couple of months, there have been a few times that we have had to put diapers on her because on that given day she was continually wetting herself. Once she was dry for a day or two, dad would put her back in regular underwear to preserve whatever amount of dignity was left, for as long as possible.

Unfortunately, over the past two week, the incontinence has been an everyday occurrence which has resulted in Mom's use of diapers on a daily basis. It breaks my heart, yet I've known it was coming. I've expected it. I think up until a couple of weeks ago, my dad was still hoping we could bypass the constant use of diapers. Putting the diapers on mom has eliminated a lot of mess and stress of cleaning up some pretty messy accidents, but there are downsides to diapers, aside from the obvious (losing one's dignity). Today, when I bathed mom, I discovered red bumps on her bottom. I couldn't but let out a little cry when I saw them.

"Oh mom, you poor thing," I said, as she stepped into the shower.

My maternal instincts set in and I felt pained and saddened when I saw her bottom. Poor dear must be miserable! Even though we try to stay on top of things and change her when she's wet, she's still developed a rash. I didn't have any desitin on hand to treat it (I'll be making a run to the pharmacy here in a bit!), but my dad did have cornstarch in his cupboard. Linda, our caregiver, suggested we try it and I remembered how I used to use cornstarch for my babies whenever they had a bad diaper rash. After I cleaned her up, I put some cornstarch in the diaper. Tonight my dad will try desitin (or whatever the pharmacist might recommend!!) Hopefully with persistent changing and cleansing, it'll clear up quickly.

But, I'm sure this is just the beginning. I've read the horror stories of others who have been there already: diaper rashes, bed sores, frequent UTI's...I suppose it's just the next step in the disease. But it sucks all the same :/

Thursday, May 19, 2016

The Shower Struggles

Since last fall, I have been going over to Mom's house 3 times a week to help her through the shower. This was a result of her going days without showering. My dad, of course, would help her get in a couple times a week, but at that time Mom was still on somewhat of a schedule; or, at least, she knew day from night. This presented a challenge because if Dad showered her when he got home from work at night, Mom became confused. Showers signaled morning time for her. Bathing her in the morning was difficult for Dad for a couple reasons: 1. Mom was often still asleep when he left and 2. It made him run late out the door. In trying to lift my dad's load, I volunteered to go over a few times a week to help her get through the shower.

In the beginning it was pretty simple. I would help her get undressed because she wouldn't voluntarily take off her clothes to hop in. Once in the shower, she was able to go wash her hair and her body on her own. Nevermind that she used 1/4 of the bottle of shampoo, conditioner and soap each time; she was getting the job done.

Over the course of the past 9 or 10 months, Mom's abilities to shower herself have decreased. At first it was just cutting out the conditioner, then forgetting to wet her hair before she poured the shampoo on top. All of these changes have forced me to get a little more involved with the showering process. My dad put on a detachable shower head to make the job a little easier.

Our latest routine is this:

I arrive at Mom's house after I drop the kids off to school. I get all of her clothes ready and laid out on her vanity where she can see them. She gets very anxious if she doesn't see clothes laid out for her. I change out all of her towels and washcloths in the bathroom. The towels have become an issue...for some reason Mom uses them to wipe herself now. It's gotten to the point where (just this week) we bought her separate washcloths to leave in there for the sole purpose of her wiping and we take all of her shower towels out now after we are finished with showering. I get her blow dryer ready and make sure everything is set to go; once she's in the shower, I can't leave her (I used to prep everything while she was in the shower). Only once everything is ready to go do I begin the strip down. I remove her mismatched earrings and adjustable "wedding" ring from her finger. She isn't too happy about that, especially because I think she knows what is to come once the jewelry comes off. I remove her shoes and socks, then the rest of her clothing, with no help from her. It's like removing clothing from a struggling toddler, only she is bigger than me. She will sometimes try to grab the clothes back from me or out of the hamper, so I have to be assertive and redirect her. We are fortunate that she doesn't get aggressive with us (aggression is common in many forms of dementia). I have to gently push her into the bathroom, where I turn on the shower head and she shakes her head at me, "no, no."

Once I get her in the shower, she kind of stands around, not sure what to do. The bathroom is very small; there is just enough room for the shower stall and the toilet. There isn't much room to maneuver around in so I've had to be creative in getting the job done. I usually step onto the toilet and lean over the top of the shower, removing the shower head to wet down her head. Usually she will grab the empty bottle of shampoo that sits on the shelf and then I take the full shampoo bottle, which sits on the back of the toilet, and pour it into her hands. She will slap it onto her head and put her hand out for more, so I put the conditioner in her hands. She doesn't make any efforts to rub it in anymore, so I lean over while she reaches for her loofah sponge and I quickly scrub her head. She holds her sponge out for me to put soap on, which bottle also sits on the back of the toilet (we moved it all outside the shower because of the incredible amount of soaps she was using). She used to wash her whole body herself, but now she runs it quickly across her chest and then hangs the sponge back up and turns off the water, without rinsing. This is where it gets tricky. I stand overhead with the shower head, trying to rinse her hair quickly, but once that water gets shut off she is ready to get out of the shower. This leads me to opening the right side of the shower door, turning on the water again, while Mom grabs the squeegee to wipe off the shower doors. It fascinates me that with everything she's forgotten, she still attempts to wipe down the glass doors with the squeegee! While she is distracted with that, I grab her loofah sponge and quickly try to wash all of her body parts, and yes, I mean all of them. This can be a bit uncomfortable for me, but I'm learning to deal with it. Sometimes she is done before I can wash all parts, so I have to physically get in there and put my foot against the door so that she doesn't open it. Last Friday, I forgot that important step in the process (putting my foot to block the door) and in an attempt to jet out of the shower, Mom opened the left side shower door and slammed it into my head. It hurt like heck and left a pretty good goose egg just above my eyebrow! You can kind of see it in the picture, it's kind of hard because I do have make-up on, but if you look closely you can see it (I was going to an 80's dance with my son, so don't mind the gobs of make-up and 80's accessories, ha ha).
It's a struggle to get her washing and rinsing completed, but I usually win, though I'm usually wet by the time this whole process is over. I've learned to take off my shoes and socks and usually come over in my work out clothes now.

Mom then grabs the towel and begins drying off. She used to be very thorough at drying herself, getting every nook and cranny. Now, she leaves herself very wet so I take the towel and help her to dry off her body and squeeze the excess water from her hair. Just as I used to do with my children when they were toddlers, I help my mom get dressed. I prep her underwear and bring it down to her feet where she can step into them, holding onto the wall. Then I put on her undershirt as she lifts her arms over her head and dives her head in the hole of the neckline that I have stretched open for her. Next comes her pants and then her shirt. It has to be in this order or she gets confused. If I hold up the shirt before the pants then she will think she needs to step into them, so I try to keep it in the same order. Up until a couple of months ago, Mom was putting on her own shoes and socks, but that has become increasingly difficult for her. Now, she holds her foot out for me, only raising it a couple of inches and holding her balance on the wall or vanity, while I scrunch up her socks and place them on her feet, stretching them past her heel and up her ankle.

It's becoming a bit trickier to get the job done, but between my dad and me, we seem to get the job done and come up with creative ways to make it happen. We've contemplated putting her in the bathtub rather than the shower, but I think that would be harder because she doesn't know the bathtub, she knows the shower. Since she doesn't really know day from night anymore (she is up in the middle of the night almost regularly), I think it might be easier for my dad to just hop in there with her at night and shower her; not that I'm trying to get out of helping...I'm happy to help. I'm just brainstorming the most effective to handle the situation. It is working for right now...but it gets more and more difficult with each passing week.

Monday, May 16, 2016

Mother's Week


Probably the hardest week of the whole year is [what I call] Mother’s Week. Mom’s birthday always falls in the same week as Mother’s Day-sometimes even on the same day. In fact, two years ago, her birthday fell on Mother’s Day. It was the last birthday she remembered, as I had predicted in my post.

Last year,
she had no clue what Mother’s Day, OR her birthday, were. We were hopeful that something might spark her memory, but without any luck.

This year, we knew well enough that she would have no clue about any of it. She doesn’t know what day of the week it is, let alone the month or day or anything significant. She has lost concept of time, oftentimes doesn’t know the difference between day and night, and one day just runs into the next for her.

The week leading up to Mother’s Week was a little emotional, as I prepared for another year without my mom. But I didn’t want to spoil the day by feeling sorry for myself, so I prepared myself mentally and made plans to spend time with my mom, despite her lack of comprehension. I still feel the need to DO something for my mom on special occassions, but what can you do for someone who doesn’t understand and appreciate the significance of the day, or have any interest in anything?

The best thing I can do for my mom is to care for her. So I decided to sell my toffee again to raise money for her caregiving fund. I kind of put it out there last minute, but I sold about 40 pounds! Thanks to my sister and my sister-in-law, Amber, for donating some of their time to help me get this done. I tend to bite off more than I can chew ;) Doing this helped me to feel like, despite mom’s lack of understanding, I was still able to give something to her to honor her special days.


On Mother’s Day, I enjoyed a short visit with mom, at her house. I took her to do the one thing she still seems to enjoy: take a walk to her sister’s house. She only stays for 2-3 minute visits now, but that 2 minutes makes her day. Twice, as we were walking, I could make out the words “Thank you thank you” as we made our way to her sister’s. Simple as it is, it’s the best I could think of to do for her.


On her birthday, we celebrated (without her) at her favorite restaurant once again: Miguel’s Jr. We did it as our 2nd annual foundation fundraiser in honor of my mom. I’m not sure yet how we did (financially), but there were quite a few familiar faces in the dining room and people I didn’t even recognize who walked in with fliers. Word is getting out; people are hearing about the foundation and supporting our cause while friends continue to come and celebrate my mom and support us in our journey. This support means the world to me. I know it means a lot to my dad, as well.

Mother’s Week was emotional; I think it always will be. I’ve learned that it’s okay to let a few tears slide. Though there was sadness in missing my mom, there was also a beauty in celebrating her and serving her. I am continued to be touched by the friendship and the love of friends and family that surround me. For that, I feel truly blessed.

I don’t know what next year holds for us, but for this year, she was still here physically and I was able to hold her and kiss her and tell her I love her; I am grateful for that.

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

Milestones

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"...one 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.