Day 3 of Food for Thought – Alice’s Fruit Crisp

Each day from October 5-12, I will post one of my mother’s recipes (my favorites of course), how FTD has affected my family and a little bit about the AFTD.

What is Frontotemporal Degeneration?

The behavioral form of FTD is characterized by loss of empathy and increasingly inappropriate social behavior.  People gradually become less involved in routine daily activities and withdraw emotionally from others.  Unusual behaviors may include swearing, overeating or drinking, impulsivity, repetitive behavior, sexually inappropriate behavior or deterioration in personal hygiene habits.  The person may show little awareness of these behavior changes and little or no concern for their effects on others.

How has FTD affected my family?

For me the most difficult part of FTD is mourning the loss of my mother over and over and over.  I remember sitting in bed with her one evening crying to her that I missed my mother and wanted her back.  She said, “I’m right here, Zoy.”  And what do you say when your loved one says they feel like they are disappearing and you know that there is nothing you can do about it except to comfort her.  I’ve learned over the past several years to try and live in the moment and make the most of each and every moment with her and hold those memories close. 

How can I help?

The first thing you can do to help is to learn as much as you can about FTD and the Association for Frontotemporal Degeneration or AFTD (www.theaftd.org).  The AFTD is a not-for-profit organization founded to advocate for more funding into the causes and treatments of FTD as well as provide caregivers and patients with a dependable source of accurate, reliable information and support.  The second thing you can do is make a donation to the AFTD.  Your support helps to promote and fund research into finding the cause, therapies and cures for FTD.  Please go tohttp://theaftd.givezooks.com/grassroots_fundraisers/alice-s-angels-food-for-thought-2014 and make a donation during our 2^nd Annual Food for Thought week, October 5-12.

I love this recipe because it speaks to my mother’s simplicity in life.  She could always make the simplest of ingredients taste amazing.

Fruit Crisp

Topping:

1/3 cup flour

1 cup uncooked oats

½ cup brown sugar

½ teaspoon salt

1 teaspoon cinnamon

½ cup melted butter

Fruit:

4 cups fruit (apples diced or berries)

½ cup sugar

2 tablespoons of the topping

Preheat oven to 375 degrees.

Mix the topping ingredients together and set aside.

Mix the fruit ingredients together.  Pour into an 8x8 inch baking dish sprayed with non-stick spray.  Sprinkle the topping over the fruit.  Bake for 30 minutes or until bubbly and topping begins to brown.

Serve warm with vanilla ice cream.

Day 2 of Food for Thought – Alice’s Italian Buttered Rice

Each day from October 5-12, I will post one of my mother’s recipes (my favorites of course), how FTD has affected my family and a little bit about the AFTD.

What is Frontotemporal Degeneration?

The behavioral form of FTD is characterized by loss of empathy and increasingly inappropriate social behavior.  People gradually become less involved in routine daily activities and withdraw emotionally from others.  Unusual behaviors may include swearing, overeating or drinking, impulsivity, repetitive behavior, sexually inappropriate behavior or deterioration in personal hygiene habits.  The person may show little awareness of these behavior changes and little or no concern for their effects on others.

How has FTD affected my family?

My mother didn't always love the holidays, particularly Christmas.  For years it brought back feelings of loss, but once her kids were grown, on their own and beginning to have children of their own, my mom’s love for the holidays really grew.  I remember one Christmas around 2000 when she had lit about 15 Christmas trees in and around their home.  She had a tree decorated with crystals, one with cars, one with Hallmark ornaments and one with handmade ornaments.  She hung lights and decorated just about every corner of the house.  Christmas dinner was carefully planned a good month in advance.  We incorporated traditions from both my mom’s and dad’s sides of the family with the same courses each year.  My mother always made Italian Buttered Rice among many other delicious foods for our Christmas meal.  There was an abundance of food with plenty of leftovers for the next day.  My mother’s love for the holidays filtered over into each of our families.  We loved seeing our mother so happy.  Then in 2010 we almost ran out of food and she didn't buy gifts for the new grandchildren and she just really didn't care.  FTD took away her emotional connection to the holiday and family.  We scrambled to find last minute gifts.  There isn't much open on Christmas day in a town of only 2,500.  It was a nightmare.  By the time the next year rolled around, we were tasked with making sure that didn't happen again.  My mom participated in the preparation of the food but she mostly supervised the cooking.  She was only able to decorate one tree with the help of the grandchildren.  Each year has gotten progressively worse.  Last year at Christmas as we were sitting down to eat, we didn't realize that she was stuffing her mouth.  She choked right there at the table in front of everyone.  Fortunately we were able to come to my mother’s aid, but we have to always be on our toes when food is involved.

How can I help?

The first thing you can do to help is to learn as much as you can about FTD and the Association for Frontotemporal Degeneration or AFTD (www.theaftd.org).  The AFTD is a not-for-profit organization founded to advocate for more funding into the causes and treatments of FTD as well as provide caregivers and patients with a dependable source of accurate, reliable information and support.  The second thing you can do is make a donation to the AFTD.  Your support helps to promote and fund research into finding the cause, therapies and cures for FTD.  Please go to http://theaftd.givezooks.com/grassroots_fundraisers/alice-s-angels-food-for-thought-2014 and make a donation during our 2^nd Annual Food for Thought week, October 5-12.

Italian Buttered Rice - Serves 4

1 cup long grain rice

1-2 T butter

1/4 t garlic powder

1/2 tsp dried oregano leaves

1 tsp dried basil leaves

1/4 tsp marjoram powder

6-8 ounces sliced fresh mushrooms or 2 ounce jar of mushrooms

2 cups vegetable, chicken or beef stock

Salt to taste

Preheat oven to 350 degrees.

Melt butter in a 10-12 inch heavy oven proof skillet that has a tight fitting lid over medium heat.  Add the rice and minced garlic and cook stirring frequently until the rice begins to turn golden and the garlic is fragrant.  If using garlic powder, add it with the herbs in the next step.

Add the herbs, mushrooms and chicken stock.  Bring to a simmer.  Taste liquid and add salt if necessary. 

Cover and place in preheated oven.  Cook for 30 minutes or until rice is tender and all of the liquid has been absorbed.

You can serve this dish with chopped fresh herbs and Parmesan cheese.  Or you can do what my sisters and I used to do and drizzle a little Italian vinaigrette on it.

Day 1 of Food for Thought – Alice’s Squash Casserole

Each day from October 5-12, I will post one of my mother’s recipes (my favorites of course), how FTD has affected my family and a little bit about the AFTD.  My mother has this terrible disease.

What is Frontotemporal Degeneration? 

Frontotemporal Degeneration (FTD) is a disease process that affects the frontal and temporal lobes of the brain.  It causes a group of brain disorders that are characterized by changes in behavior and personality, language and/or motor skills, and an inevitable deterioration in a person’s ability to function.  FTD is often diagnosed in the mid- to late-50s, when a person is actively parenting and nearing the height of his or her career. 

How has FTD affected my family? 

My mother loved to cook.  She grew up helping her mom cook the food that came from their garden and fields.  One of my earliest memories of my mother cooking was preparing and delivering supper to my dad who was working the night shift at the bus station (chicken fried steak, green beans and macaroni and cheese).  My last memory of my mom cooking was horrible.  We were getting ready to go to a family reunion.  She hadn’t been diagnosed with FTD yet, but the FTD was in high gear…inappropriate comments were flying out of her mouth.  We had put a squash casserole in the oven to take to the reunion.  While we were waiting for it to cook, my mom decided the casserole needed toasted bread crumbs on top.  She had done this many times successfully.  She proceeded to turn the burner on under the skillet, melt the butter and pour in the breadcrumbs to toast.  She then walked away.  When I got back to the kitchen, the bread crumbs were burned.  I lost my patience which didn’t even phase my mother.  When I removed the casserole from the oven and before I could set the potholders down, my mother poured the burned bread crumbs over the casserole.  I lost it and screamed at her.  I just knew she had done this on purpose.  Little did I know that she had no control over this behavior.  Six months later we found out that she had the behavioral variant of FTD.

How can I help?

The first thing you can do to help is to learn as much as you can about FTD and the Association for Frontotemporal Degeneration or AFTD (www.theaftd.org).  The AFTD is a not-for-profit organization founded to advocate for more funding into the causes and treatments of FTD as well as provide caregivers and patients with a dependable source of accurate, reliable information and support.  The second thing you can do is make a donation to the AFTD.  Your support helps to promote and fund research into finding the cause, therapies and cures for FTD.  Please go to http://theaftd.givezooks.com/grassroots_fundraisers/alice-s-angels-food-for-thought-2014 and make a donation during our 2^nd Annual Food for Thought week, October 5-12.

Squash Casserole – 6 servings (side dish)

My mother used to make this recipe with the abundance of yellow squash in their garden.  She would make it in large batches and put into smaller freezer-to-oven containers to save for a later date.

3 medium yellow squash, sliced into ½ inch rounds

1 medium onion, diced

½ cup crushed crackers (like Saltines)

3 Tablespoons butter, divided in half

1 egg, beaten

½ cup shredded cheddar cheese

½ teaspoon salt

¼ teaspoon pepper

½ cup dried breadcrumbs

Preheat oven to 375 degrees.

Place the squash in a saucepan and cover with water.  Bring the water to a boil and cook the squash till just tender.  Drain well.  Transfer to mixing bowl.  Using a potato masher or a large spoon, mash about ½ of the squash.

In a 10 inch skillet, saute onions in one tablespoon of butter till tender.  Add to squash.

Melt one tablespoon of butter in the skillet and lightly brown the crackers.  Add the crackers to the squash mixture.

Add the remaining ingredients and mix to combine everything.  Spray an 8x8 inch baking dish with cooking spray and fill with the squash mixture.  Bake for 20 minutes or until center is hot and bubbly.

Melt remaining tablespoon of butter in the skillet and brown the breadcrumbs.  Sprinkle breadcrumbs over the top of the casserole and serve.

So Where Do We Go From Here?

Ever since Kiley asked me if I was going to get FTD and if that meant she also would get FTD, I've been a little troubled.  I know there is a test that can identify the genetic markers for FTD and that if my mom has those genetic markers then I have a 50/50 shot of getting or not getting FTD, but do I really want to know?

That question brings me to the presentation I heard today at our monthly FTD support group meeting.  The presenter was Dr. Ronald Devere, an Austin area neurologist specializing in memory loss and dementia.  He really tried to drive home the likelihood or should I say the unlikelihood of developing genetic dementia.

So here are the numbers I heard:

Only 15-20% of FTD cases are genetic.
.5% of Alzheimer's disease cases are genetic.
10% of people over 65 have mild cognitive impairment.
60% of people with mild cognitive impairment develop dementia.
40% of people with mild cognitive impairment don't develop dementia.

Stress is the biggest cause of memory loss.

Let's say that someone is predisposed to getting FTD or another type of dementia, something like surgery or anesthesia can trigger the development.  This happened with my mother who had a stint put in a few years ago.  She experienced extreme stress before, during and after her surgery and as she recovered, her personality and behavior went downhill.  Another person could live out their life and never develop dementia but only experience mild cognitive impairment.

So needless to say, I am not as stressed out about getting FTD. 

More of the same...

So I went to Hallettsville to work a party on Thursday. I stayed with my parents. My mom has been calm the last few times I've seen her. Little things that seem to be getting worse...pocketing food in her cheek as she eats. She eats really fast and her chewing and swallowing can't keep up. Another thing is her messing in her pants. She was on a med for a little while that caused this problem, and she got better when the doc switched that med, but she's doing it again. Daddy is a little more prepared this time around. Even gives her Imodium before a road trip. I'm more sad for my dad that he has to deal with that aspect. One thing that has been helpful for him is an online support group called Dementia, The Journey Ahead. It's on Facebook and gives info in little spurts so it doesn't get too overwhelming. Of course our monthly support group can't be beat.

Usually on my visits, the mornings are the most difficult with mother. She seems a little more scattered than normal, but as the day progresses she seems to calm down.

I'm really glad I still have both my parents and it would be great if they aged according to the plan I had, but it hasn't.

I guess the saying, "It is what it is," is an appropriate slogan for FTD.

Alice's Angels

We've just about come to the one year anniversary of my mother's diagnosis of FTD (frontotemporal degeneration).  This year also brings around the 2nd Annual "With Love" Campaign.  My daughter and I decided to jump on the band wagon and start a page in honor of my mother and all the angels supporting her...We are calling it Alice's Angels.  We hope you take a moment to click on the link to learn a little more about our cause.  The organization is trying to raise $50,000 between now and February 14, 2013.  Kiley and I are trying to raise $1,000.

Some important links:

The Association for Frontotemporal Degeneration - www.theaftd.org
Alice's Angels - http://theaftd.givezooks.com/grassroots_fundraisers/alice-s-angels

Symptoms, Side-effects, Medications...Oh My!!!

So it was great seeing my parents again this past weekend.  My mom has her ups and downs with FTD...we seem to be in a slightly "down" time right now.  We spent Saturday at Kolache Fest with my in-laws.  It was so nice seeing some of my mom's friends who are all concerned about both my mom and my dad.

At mother's last neurology appointment, Dr. Schulz prescribed 250mg of Depakote.  Depakote is used to help FTD patients slow down just enough to think before they speak.  I think it is also supposed to slow her ADHD brain down just a little.  Anyway, Daddy was supposed to increase the dose by 250mg each week if her symptoms didn't improve.  She could have up to 1000mg per day.  The reason Daddy increased the medication from 500mg to 750mg was because he hadn't seen improvement in her ability to "put on the brakes" with her thought-to-mouth process.  It has done nothing to help...instead, we are thinking that it might be making her hallucinations/delusions worse.

She is visiting the guest house behind their home (where her mom lived while she was sick with Alzheimer's) to talk with her mom. She opened the front door to let her mom in her house. She sees one of their former employees all the time. She even drew a picture of him with a Sharpie on the sliding glass door.

So Daddy is making some notes in preparation to talk either with Dr. Schulz's nurse or Dr. Schulz himself about the medication and what could be causing the hallucinations/delusions.

On a better note, my mom's blood sugar and blook pressure are ideal according to the endocrinologist.  She just needs to kick up the exercise a bit.