I Wish I Knew Then What I Know Now

I may raise a little controversy here with this post, but I'm writing it anyway.

A couple of months ago, I wrote about the autoimmune disease that I've been dealing with for the past year. I've really become proactive in my health and in healing my body and eliminating the debilitating symptoms that the medication is not helping. I've also written before about my fears of developing demetia. It's a fate that I do not ever want to inherit. As I have been reading and researching (and I've been doing a lot of this), I'm learning more and more that there could very well be a connection between our diet/lifestyle and dementia.

I've suggested some of these ideas to some of my family members; most are either in denial or think I'm a little crazy (although they haven't read these books themselves). I recently read this book, called "Grain Brain". It may sound silly, but it almost brought me to tears as I read it, thinking about my mom all the while. If I had only known 7 or 10 years ago what I know today, maybe we could have prevented all of this from happening or at the very least, slowed it down. There is way too much information that I've studied to relay in one simple post, but if dementia is in your family I HIGHLY recommend you read this book. And even if it's not...I highly recommend you read this book! So many of my health issues (including my brain fog and migraines) have gone away after changing my diet and lifestyle. [You can read more about symptoms and whatnot in my new health blog]. It's true that genetics can play a factor in dementia and Alzheimer's, but it doesn't have to be your fate! Break the cycle!! After all of my research, I really do believe there are things you can do to prevent this awful disease from happening.

Nobody knows yet what causes semantic dementia. What they do know is that a protein in the body "gets loose" and deposits on the brain, eating it away. But how it gets loose is the mystery. What I have learned is that food plays a huge role in your body and affects the proteins in your body; foods such as carbs, wheats and sugars in particular. Of course everyone's bodies are different; some people are more predisposed to certain illnesses, but all of these foods can affect your brain and neurological system. I've often wondered why there is such a dramatic increase in all of the different health epidemics we see today: obesity, diabetes, heart disease, dementia....what is the common link? I'll tell you what it is. Food. The foods we eat today are so processed and chemically altered and filled with harmful toxins; it's no wonder we are seeing all of these epidemics! Even foods such as wheat, which are considered healthy, have been so genetically engineered and processed that it doesn't even resemble the wheat that our ancestors ate. I know from personal experience that by changing my diet, I have eliminated a lot of the health problems I've been dealing with. I just wish that it wasn't too late for my mom. I will forever wonder what could have been.

Before you criticize this post, I encourage you to do the research yourself. Start with this book. There are many other great books that I have read, but this one spoke to me the most in regards to dementia (it was written by a neurologist, who also happens to be a nutritionist...he has included stories of his own practice and how he has helped people with specific neurological issues they've faced, all by managing diet). I know this post may get mixed reviews. Change is hard. But I feel an obligation to my readers, especially those who worry about their fate to dementia, to share everything I've learned throughout this journey.

A Drastic Change

I wasn’t ready for this stage quite yet.

I’ve tried to prepare myself for our future with dementia by educating myself on the disease. I have read books. I have gone to support groups. I network with others online. I think, for most part, I know what to expect. Yet I did not expect to have this issue at this phase in the game. I thought this part wouldn’t come until the end. That’s usually when a person refuses to eat. Or, at least, that’s what I thought.

I know that mom could pass through many phases in this diseases. I’ve read about others who regress back to toddlerhood and infancy, putting non-food objects in their mouth, getting into things they shouldn’t be touching. I know many caregivers have to “childproof” their living spaces to keep their loved one safe. Most, if not all, lose the ability to toilet themselves, shower themselves or take care of any hygiene for that matter. Towards the end phases, many have trouble walking, talking (some lose language completely), and many develop problems swallowing and lose the ability to eat.

Mom hasn’t passed through any of these phases yet. She still takes care of her own hygiene. She toilets and showers herself. She puts on a face of make-up and attempts to curl her hair everyday (though not quite like she used to). Aside from hiding car keys, medicines and credit cards, we haven’t had to childproof anything from mom. I thought she would have to pass through all of these phases before she struggled with the eating phase. I expected it. I guess it’s true what they say. No two cases of dementia are exactly alike.

Over the past couple of months, mom has altered her diet once again. One thing always remains the same, and that is her morning Slim Fast. [Although one minor modification to that is that sometimes she will skip it in the morning now and drink it for lunch instead]. A typical day consists of: Slim Fast in the morning, a sandwich for lunch (with turkey, tomato, sliced American cheese, mayo and lots of sandwich oil), occasionally fruit (strawberries or canned pineapple) or Poppycock for an afternoon snack, and an Ensure for dinner. If we are lucky, she might go out to dinner with us but that has almost become non-existent as well. We can’t even get her to go out to her favorite restaurant (Miguel’s) anymore!

In the past week, the only solid food mom has eaten is some strawberries (twice) and 1 1/2 or 2 sandwiches; this is total for the entire week. She might have tried to eat a handful of Poppycock popcorn once or twice. Half of that food was thrown up. She drinks her Slim Fast everyday, once a day, and drinks a small can of Ensure most nights for dinner. Half of that has been thrown up as well. She only drinks water (about 6-8 oz) when she takes her medication, 3 times a day (as far as I’ve noticed). Try as we might, we cannot get her to eat anything. We’ve tried soups, Gatorade, popsicles, lemon-ginger tea, breads, toast...we’ve even offered to take her shopping to pick out what she thought would sit well in her stomach. It’s no use. Mom has it in her head that if she eats, she will throw up. And when mom has something in her head, you cannot convince her otherwise.

My dad took her to a follow-up appointment with the doctor yesterday…if that did any good. All they did was order more lab work and give her more medicine: one medication to prevent her from throwing up, and one medication to help increase her appetite.

My dad is willing to do anything at this point to get her to eat, including to try this medication. I suppose it is worth a shot, but I’m a bit more hesitant-with good reason. With mom’s disease, the body loses it’s ability to make sense of bodily functions and signals. For example, mom cannot understand why her eyes water all the time; she thinks she’s “so weird” when she burps or yawns or if her stomach makes noises. She doesn’t understand these things anymore or what these functions represent. Along with this, they (those with semantic dementia) lose the sense of knowing when they are hungry or full. I firmly believe that mom’s ability to decode hunger is lost. I think a part of her stomach pains could actually be attributed to hunger pain. But she doesn’t recognize it as such. Instead of eating and ending the hunger pains, she skips meals because she’s afraid of upsetting her stomach.

If my hypothesis is correct, wouldn’t it be logical, then, to say that this medication will only worsen her stomach problems?

Mom now weighs in at 126 pounds. That means she has lost another 14 pounds in the past 5 months and I would say most of that has been in the past 2 months. If this drastic change in her eating continues, at what point will the doctors do more than just prescribe a pill? I’m not sure what this means for the future. Is it just a phase? Will she eventually start to eat again? Or has she taken a drastic turn?

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!