Tuesday, July 31, 2012

Would You Like Some Veggies With That Garlic??

I've told you before and I'll tell you again, people with FTD develop an altered preference for food. Foods they once loved become untasteful to them. It is typical for them to want to eat the same foods day in and day out. I have read over and over (in my online support group) that people with FTD will eat the same thing everyday. For my mom, this is the case as well.

Her favorite meal is tortellini with LOTS of butter and garlic. And I mean lots. She uses butter and garlic on just about everything. And we're not talking a dash of garlic...we're talking "would you like some vegetables with that garlic?"
The other night, mom and dad came over for dinner. Mom brought her mixed vegetables and of course added a side of butter and garlic on top. We were all chuckling at the amount she put on top as she told us how "delicious" it was, and urged us each to try it. I couldn't resist taking a picture. You can see what I mean when I say it's more than just a dash.

Some of her other favorite foods:
-chicken with BBQ sauce: it doesn't matter what kind of chicken we make, she wants BBQ sauce. I made an Italian chicken with a tomato sauce the other night, and she brought out her BBQ sauce (much to all of our surprise, she actually tried it without the BBQ sauce and liked it).
-frozen burritos
-frozen pizza
-broccoli cauliflower salad
-pineapple (this was a strange one to me...she never cared for pineapple when I was growing up)
-costco rolls
-Ensure and Slim Fast
-chicken nuggets

Saturday, July 28, 2012

UCLA Part 2

A couple miles away from UCLA is one of our church's temples. My mom has always been religious and very active in our faith. It has been magnified since her disease has been settling in. Since we were all they way out in LA for the day, mom wanted to stop by the temple. Why not? It was something that would make her happy and you have to admit, the view is beautiful.

As we were walking through the visitor's center of the temple, my mom shared with me her feelings about her faith.

"I just definitely have so much faith in Heavenly Father and Jesus Christ, too, and I have been praying to him a lot too, so much more lately. I just talk to him, too, and hopefully he hears me. But I definitely have faith in Him."

I can't help but to smile as she shares these things with me. She has such an innocent, childlike faith. Surely this is what Jesus meant when he told us that we ought to have the faith of a little child. There is such a sweet innocence in my mom and in her pure love for and faith in her Savior. Her faith strengthens my own.

I thought it would be nice to get a picture in front of this statue of Christ. Before this picture was taken, mom had a huge grin on her face, looking upward, and her arms were in the air, pointing to Jesus as she declared,

"Jesus! We love you!"

My dad told her to put her arms down for the picture. But I almost wish we'd have gotten that shot to illustrate just how innocent and pure and childlike her love is.

After the picture, as we stood in front of the statue, mom began singing her favorite children's song,

"Jesus said love everyone,
Treat them kindly too.
When your heart is filled with love,
Others will love you."

(On a side note, she also sang this to Jill during her appointment at UCLA because it had popped into her head).

I am so grateful for the faith that my mother has instilled in me since I was a small child. It truly is what gets me through this, and all of, my trials in life. It is hard losing my mom. But I have faith that this will pass. This life is but a small speck on the endless timeline of life. Though the road ahead seems long and hard, I believe that we will be together again in the next life, where she will be free of pain and suffering. She will be in a perfect state again, this time for eternity. Without that knowledge, I don't know how I would get through the day.

I realize that not everybody reading this shares in the same faith as I do, and that's okay!! I am not writing this to offend or to preach about my beliefs. I am writing this to share what brings me peace and comfort through this difficult time, and to share something that is such an important part of my mom's life: her faith in the Lord.

Wednesday, July 25, 2012

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.

Monday, July 23, 2012

"I Hope I Don't Die Young"

I was always a very sensitive child. It didn't take much to hurt my feelings. My mom used to always tell me that, one time, when I was a toddler, she said something that had upset me (I can't remember what it was) and in response I crossed my arms, looked up at her and with a pouty lip, exclaimed,

"You huwt my feewings!" [Interpretation: "You hurt my feelings."]

[I just had to throw this cute, little pouty face picture. Because, let's face it, blogs are far more interesting when there are pictures].

When it came to any kind of reprimand, it was the same scenario. I was the kind of kid who cried anytime she got into trouble. A spanking would absolutely devastate me. If someone called me a name or said something unkind, it was hard to hold back the tears. Likewise, when I was reprimanded, it hurt my feelings as well. One of my parent's favorite stories, which my mom documented in her journal, was about a time when I was having some sort of disagreement with one of my siblings. My mom told me that I was being selfish, and through my hurt and emotional distress, I yelled,

"I'm not selfish! I'm sharing my temper with you!"

As I blossomed into a teenage girl, my sensitivity only magnified. My parents used to joke that if you even looked at me the wrong way, I would cry. I think that is a rather dramatic statement; I wasn't that bad. But I did have a tendency to wear my feelings on my sleeve, and they got hurt very easily.

Life experiences have toughened me up, so to speak. Though I am still somewhat on the sensitive side, I no longer cry at the drop of a dime. In fact, I've almost gone the opposite direction. I rarely ever cry these days. I don't know if it's necessarily a good thing, but I usually suppress all of my unpleasant feelings inside, until I can no longer hold it in anymore. I would say once every month or two, I end up having some sort of meltdown, where all the emotions that I've bottled up finally explode.

People ask me frequently, "How are you doing [emotionally] with your mom's situation?"

My younger self would be a mess. Thank goodness for those life experiences and the tougher skin it has grown me! It is definitely an emotional roller coaster. There are times when I feel very strong and put together, and other times when I feel overwhelmed at the curve ball we've been thrown.

This past week has been another drop on the rollercoaster for me. As I look through old pictures, and remember my mom the way she was, I feel sad at our loss. I miss my mom. Even though she is still here with us (and I am grateful for that) I really miss my mom for the way she was. I miss having my confidant. I miss having someone to give me parenting advice when I need it-or any advice, for that matter. I miss having my friend to shop with. I am grateful for the friends and family members who have stepped in to try and fill those gaps for me; nobody can take the place of mom.

My mom has been very tired over this past week, and having more "severe" pains due to her "degenerative disk, narrowing spine" disorder that the doctor claims she has. It seems like every day that I have seen my mom this past week, she has made comments about dying young.

"I've just been feeling so severe lately. I sure hope I'm not going to die young. That would be so sad. I just hope I get to live a long life, too, and not die young."

As she was leaving my house the other night, she stood up from the couch, wobbling a little and commenting on how "weird" it is that when she gets up she is a little unstable. I guess the "severity" of her wobbling made her think again about a young death. This time, as my dad held her arm while they walked out the door, she added a few lines to her dialogue for him,

"I sure hope I don't die young. That would be so sad. And then you would marry someone else and I don't want you to marry anybody else. That would be so sad. I would be so sad. But you could be like your grandma, she never got married again when your grandpa died when she was still so young. She never got married all those years, she was by herself and she was okay."

She has such a childlike innocence in her voice when she speaks. She has no idea about her disease (though we've tried explaining that she has dementia, she doesn't comprehend what that means). She has no idea that her life will be cut short. It breaks my heart to hear her express her anxieties about dying young. What do you say in response to those comments?

Most of the time I try to redirect the conversation and I don't go back to reflect on what she is saying. Lately, because it has been brought up in at least one conversation per visit with her, it's becoming harder to ignore. I can sense a breakdown coming on. If I just stay busy, and don't think about or dwell on it, I am okay. It is in those quiet moments, when I am alone with my thoughts, that my sensitive, emotional side returns.

I suppose that is partially why I have become so proactive in all of this. It helps to occupy my mind and my time doing something positive, rather than dwell on the negative.

One thing I know for sure, I am learning to appreciate life and the time we have left with her. Live life to the fullest. Never pass up a moment to tell someone you love them. Do not hold onto grudges, time is too short. Never put off for tomorrow what you can say or do today. Live your life with no regrets. I wish we had learned of her diagnosis earlier on, because I feel like a lot has been wasted. All we can do is move forward and make the best of what is happening now.

Saturday, July 21, 2012

2012 Walk to End Alzheimer's

Since I've learned of my mom's diagnosis, I've been searching for ways to become involved in the dementia community and help in some way. I've thought of forming some kind of walk for dementia, but have no idea how to go about doing that.

The Alzheimer's Association is the organization that deals with dementia. Though it's mostly focused on Alzheimer's, it covers dementia as a whole. I have yet to find an organization specific to FTD. I suppose that is because it is such a small percentage affected in the dementia community; Alzheimer's represents 50-60% of ALL dementias.

In response to a comment I left (on the Alzheimer's website), I received information about a walk that will be happening in the city next to mine, on October 13th. I am very excited to announce that I will be participating in my first walk!! And...I am forming a team, which means I am a team captain! I have named my team in honor of my mom, "Team Dee".

Our team goal is to raise $1,200. However...for those who know me, you know that I love a little healthy competition. I am determined to be one of the top fund raising teams! Please, please, pretty please donate for our cause, which is very near and dear to my heart. It takes only a minute to do. You can drop a check in the mail, hand it to me personally (for those who are local), or go directly online and make your donation. Even if $5 is all you are able to contribute...it does help! If every friend and family member that I knew donated $5, I could potentially raise thousands of dollars! (On a side note...it is a tax write-off!)

Millions are affected by Alzheimer's, even more affected by other forms of dementia. Those numbers are expected to double every 20 years. It is the leading cause of death in the elderly. Today, we can all make a stand against the fight on dementia! I walk for all those affected by this terrible disease; but most of all, I walk for my mom.

Go Team Dee!

Click here to donate to my team!!

Wednesday, July 18, 2012

A Day in the Life of Deana

"What does your mom do all day?"

This is a common question that I am asked whenever family or friends learn of my mom's condition (and her leave from work).

Many patients with FTD develop a set routine for their day. Mom is no exception. Here is a basic run-down of her day.

It begins at 8:00 am. Don't try to get her out of bed before then; it won't happen unless it's a Sunday morning when she has church at 9:00 am. Sometimes she might sleep in a little longer, but her typical get-out-bed time is 8:00. If she's awake at 7:00, get-out-of-bed time is still 8:00. I'll spare you all the gorey details, but suffice it to say, she takes care of her bathroom situations first and by 8:30 on the dot, she is ready to take round 1 of her medications. Following that, she will drink her Slim-Fast for breakfast. She stirs it exactly 100 times to make sure it is mixed well.

After breakfast she takes a shower and then blow-dries her hair and applies her make-up, even if her plans for the day are simply to stay home. For many dementia patients, poor hygeine and grooming habits become an issue. For some reason, this hasn't happened yet with my mom (thank goodness!). I suspect it is because FTD patients also develop obsessive behaviors; my mom is obsessive about her appearance. She's always been very self-conscious, due to her fair skin and red hair. Her vanity has been taken to new heights with this disease. She will not step even a big toe on the front porch without her hair and make-up done. No exaggeration.

Her daily routine mainly revolves around food, sleep and medication. I mentioned that she takes her medicine and eats breakfast at 8:30 am. 12:00 pm is lunch time. At 1:30 pm, she takes a nap until it's time for medication again at 2:30 pm. That leaves the afternoon free until dinner time (if she cooks anything...another blog for another day) which is at 5:30 pm. 8:30 pm is her last round of medications. She will take her meds and then spend the next half hour getting ready for bed. Bedtime is at exactly 9:00 pm.

I know it might sound a little rigid; there is little flexibility in her routine. This is why vacationing and going out places have become increasingly difficult. From what I've read, these OCD behaviors will begin to dwindle and eventually become non-existent as the disease progresses to the severe stage.

There isn't a whole lot that she does throughout the day. Once a meticulous house cleaner, she now sees beyond the mess around her and cannot function in daily and weekly chore routines that she once had. She will do loads of laundry here and there. Occassionally she will stroll into the kitchen and do a few dishes. Every once in a while, she might clean the inside of a toilet bowl. And very occasionally she might vacuum (although there have been some issues with the vacuum...again, another post for another day). This is the extent of her housecleaning. She usually works in 15-20 minute increments. Anything more than that makes her sweaty and tired and she takes a rest on the couch.

Much of her time is spent on the couch; she has her favorite spot that nobody else is allowed to take. I've gone over many times to find her sitting on the couch, arms folded across her chest, her eyes staring straight ahead. Maybe she is lost in thought, I'm not exactly sure. There is no TV on (she can't follow a plot line); she just sits and stares. This picture was obviously not taken on the couch, but it depicts what I just described to you. Sometimes she will be listening to music. She loves oldies and "The Mormon Tabernacle Choir".

More often than she sits and stares, mom plays games. She loves card games on the computer as well as crossword puzzle games-not the kind where they give you clues and you fill in the words. But the kind where you have the word already and you fill in the space. Like these:

She will spend hours in front of the computer playing games (spider solitaire is her favorite), or on the couch filling out puzzles. It sounds odd that she would be able to do these things, given her condition, but it is actually characteristic of the disease. I've heard others make the same claim about their loved ones who also suffer from FTD.

At this point, mom is okay to stay by herself throughout the day without supervision. Eventually that will change. My sister and I both live within a couple miles of our parent's house. There isn't a day that goes by that one or both of us don't stop by for some reason or another. Even when we are there, however, mom still follows her routine. She seeks no entertainment from us. Sometimes she will converse with us, sometimes she will silently play her games.

There are days where she gets out of the house. She has doctor's appointments at least a couple of times a month. She loves to go to Sam's Club with my Aunt, usually once a month. She gets out, either with my dad or me, to go grocery shopping or to run other errands. And of course we have family gatherings and outings that she attends (most of the time). Even when she gets out, there are still the 3 criteria that must be considered: food, sleep, and medication. But in a nutshell, this is how my mom fills her days.

Monday, July 16, 2012

Follow me on Facebook!

Just an fyi, for those who don't already know, you can now follow me on facebook as well. The link below will take you there:
This is just another way to keep you all connected with this journey, and to update you when I publish new posts. Spread the word! :)

I don't want to eat that!

Being a mom to 3 young kids means being creative (and somewhat flexible) with meals. I expose my children to a variety of foods and encourage trying new things. I do not cater to their whims when they are opposed to the meals I make. With that said, I have one child, in particular, who is especially picky. Though she eventually eats what is on her plate, if it's something she doesn't want to eat, she will let you know about it. If I stick to her "staple" meals (the foods that she is guaranteed to eat...pizza, hamburgers, chicken nuggets, etc), we will have no issue. But whenever I try something new, I'm prepared for the fits; "what is that?", "I don't like that", etc. I have to remind them when we go out to have good manners and be polite about the food, especially if we are eating at another person's house. Thankfully, every restaurant has a kid's meal. If there are hamburgers, chicken nuggets, or macaroni and cheese, I know I'm safe when we're eating out. Mealtime with kids can be exhausting, and even annoying!!

One of the symptoms of frontotemporal lobe dementia is an altered food preferences. This means that the person will lose their taste for things they once loved, or become overly obsessed with particular foods. Over the past couple years, my mom's food preferences have drastically been altered. Foods that she once loved have lost their place on her taste buds. In fact, like my children, there are only a few types foods that she prefers to eat.

She loves chicken and chicken nuggets. She really loves hamburgers and milkshakes. Her absolute favorite meal is tortellini with alfredo sauce and LOTS of garlic, frozen mixed vegetables on the side. My Aunt gave her a recipe for a broccoli cauliflower salad. She will make that salad every week and eat it for lunch. Every time she does, she tells us about how delicious it is and how grateful she is that Tia Tina gave her this delicious recipe. She likes tacos, pizza and burritos. She drinks a slim fast every morning for breakfast (stirring it exactly 100 times) and drinks Ensure frequently.

"It's so delicious" is her catch phrase on meals that she really enjoys. Sometimes she will even sing the preschool song "Yummy yummy yummy in my tummy tummy tummy". It doesn't matter if we are at home or out in public at a restaurant; when she's excited about her food, she will break out into song.

She has been known to offend people when acting picky about the food they've prepared for her when she's visited their home. She's even gone so far as to reject their food and go to Jack-in-the-Box instead! When I say she's offended people, this is before her diagnosis. We now have an understanding that this is beyond her control, and we don't take offense when she brings her own meals to our houses for family dinners. We anticipate beforehand that she may not always like/eat what we prepare.

When it comes to eating out, she has become more difficult than the kids. When given a choice of where to eat she will always choose from the same places: Miguel's Jr (a local fast-food Mexican place that we have been eating at our entire lives), Outback Steakhouse, or Jack-in-the-Box. When we are completely sick of those 3 places, or when those aren't an option, we know that if we find a place that has hamburgers and milkshakes, we will be okay. The picture you see was taken over the weekend at Miguels. When I call to invite her to go to Miguels, she becomes giddy like a schoolgirl.

"Oh YES! Thank you so much. I just love Miguels so much, thank you! Their food is so delicious too!" (She will usually then give me the run-down on her favorite burrito, and ask me if I've ever tried it, the "Miguel's Garbage Burrito").

Writing this doesn't capture the enthusiasm and excitement in her voice. It sounds like a kid who just opened a gift that they'd been anticipating for some time. I've learned to just smile at the childlike innocence and wonder in her voice.

This symptom of the disease can be very problematic for many dementia patients. Fortunately for us, mom loves her ensure, frozen vegetables and salads. But many people with dementia lose their desire for healthy foods and instead become obsessed with junk food. Oddly enough, my once chocolate-loving, queen-of-baking mother has lost her taste for sweets. She never eats sweets or desserts anymore.

For those who are reading this, and are struggling with keeping your loved-one healthy (whether it's a picky child or a person with an illness), I have a few suggestions.

1. Give them ensure to drink-it is packed with vitamins that will give them some nutrition.

2. Learn to cook with purees. I started doing this with my family. It's super easy to hide vegetable and fruit purees in simple meals that you make. I learned how to do when I purchased this cookbook. It was worth every penny!

3. You can crush vitamins (if they are resistant to taking them) and hide them in foods, shakes, etc. Or better yet, get liquid or powder vitamins and/or supplements to hide in their food.

4.There is a cookbook that was written specifically for people with problems chewing and swallowing (which eventually develops in dementia patients). There are some yummy and healthy recipes.

Dealing with picky eaters can be a real challenge. In all honesty, it is easier to coax my kids to eat what is put before them than it is with a dementia patient. But with the right tools and knowledge, the fight can become a little easier!

Friday, July 13, 2012


This is where I was last week; vacationing with my family in the Bahamas. Isn't it gorgeous? I know, it's a rough life.
While basking away in the sun, on the lush white sands of Cable Beach, I thought a lot about my mom. About 4 or 5 years ago, she took her first trip to the Bahamas on a cruise. I remember her excitement when she returned home, sharing photos, souvenirs and stories of the beautiful isles. She told me how much I would love it there (seeing how I'm a beach kind of gal) and talked about "one day" when we could all go together.

My mom loved to vacation. Growing up, my parents were pretty good about taking us on some sort of vacation every year. She loved visiting new places; we all did. As my siblings and I grew up and flew the coop, mom and dad started traveling more. My mom had a list of places she wanted to visit. My dream is to someday go to Italy; we talked about the prospect of someday doing a big vacation together to Europe and Italy.

Mom still talks about vacationing a lot, but her vision has narrowed. She doesn't talk about new and exciting places she wants to visit. Instead,she talks about only a few places that she has visited already. She talks about visiting her distant Aunts and Uncles in Utah, about going back East to Connecticut (where my dad spent his childhood) and especially about taking "church history" vacations. One of my mom's obsessions right now is religion (another is the past...she could talk to you about her childhood all day). She talks about religion, and her Mormon pioneer ancestors, to anyone and everyone. Lately, she's been talking to me a lot about how fun it would be to repeat a vacation her and my dad took a few years ago to Nauvoo (a historical place in our church's history). On several occassions, she has made a point to talk to me about this,

"I just wanted to ask you if you would ever want to go sometime to Nauvoo to take a vacation? It would be so fun to all go together." And then she recounts the things she did while on her first trip there.

It would be great to do a vacation there someday. But the time is ticking. We all realize, at this point, that it's only a matter of time before traveling is impossible with her. Our last trip, Easter weekend, was difficult. As each day goes by, the dream of her vacation begins to wither away.

This has been a sad reality for me. I've always enjoyed taking the kids on vacations and trips with my parents. My youngest kids are too young to even remember. I know traveling with mom is rough, but I would really like to plan just one last trip with all of her kids and grandkids, to make her dreams come true. I haven't brought this idea to light with my dad or siblings; I'm a little hesitant to because of our past experience. But maybe they will feel inspired as they read this. With the holidays just right around the corner, I think one of the best gifts we could give mom would be to take her on a family trip. Though her memory of it will soon be gone, it will live in ours forever.

Monday, July 9, 2012

A Must Read

A couple of posts ago, I mentioned a book that I had read which has helped me tremendously on this journey. I would like to share that book with my readers. If you have a loved one who is suffering from dementia, I highly recommend you reading this book. You can order it through Amazon by clicking on the link below (sorry, there is no web version available as of yet):

This book takes you through the journey of dementia (by sharing one woman's story of caring for her husband) and provides resources for the different issues you will inevitably face with this disease. I admit, there are parts of this book that are hard to read. It's difficult to read about what is to come. However, I feel that it is necessary to know what to expect so that I can prepare myself mentally, physically and emotionally. I need to be a strength to my mom and to my family; this book has helped me to gain a realistic perspective and prep for the future. Susan shares her story in simple terms; it is an easy read. I started reading this book on a Friday night and finished by late Saturday afternoon. I cannot say enough good things about this book. In my opinion, it is a MUST read for any and all who are affected by this terrible illness.