Day 7 of Food for Thought – Alice’s Swiss Steak

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?  People ask me all the time, "Is FTD like Alzheimer's Disease?"  FTD affects different parts of the brain initially.  Here are the main differences.

Key Differences between FTD and Alzheimer's

From www.alz.org

• Age at diagnosis may be an important clue. Most people with FTD are diagnosed in their 50s and early 60s. Only about 10 percent are diagnosed after age 70. Alzheimer's, on the other hand, grows more common with increasing age.
• Memory loss tends to be a more prominent symptom in early Alzheimer's than in early FTD, although advanced FTD often causes memory loss in addition to its more characteristic effects on behavior and language.
• Behavior changes are often the first noticeable symptoms in bvFTD, the most common form of FTD. Behavior changes are also common as Alzheimer's progresses, but they tend to occur later in the disease.
• Problems with spatial orientation — for example, getting lost in familiar places — are more common in Alzheimer's than in FTD.
• Problems with speech. Although people with Alzheimer's may have trouble thinking of the right word or remembering names, they tend to have less difficulty making sense when they speak, understanding the speech of others, or reading than those with FTD.
• Hallucinations and delusions are relatively common as Alzheimer's progresses, but relatively uncommon in FTD.

How has FTD affected my family?

Wow, what a week!!!  I am wrapping up this week of posts sitting at my parents’ kitchen table and reflecting on the weekend spent with them.  My mom spent the weekend pacing back and forth without uttering a word during my visit.  My dad spent the weekend cleaning up after her.  Daddy and I got to cook together, drink wine together and just hang out and visit.  The saying…Life goes on…applies to most people.  It doesn’t really apply to a caregiver.  Life starts and stops repeatedly for the caregiver.  I admire my dad for taking care of my mother.  My dad surprises me each and every day with is ability to adapt to whatever my mom throws his way.  I know that my mother would have done the same thing if the tables were turned.

The hardest thing right now is her incontinence.  FTD has robbed her of her ability to know when she needs to go to the bathroom or even know that she has gone to the bathroom.  When we go to visit my mom and dad, their whole routine gets off track.  Bathroom breaks don’t happen as regularly, meal time changes, medications get missed, bed-time gets later.  Even though it is the weekend for me and my family, it is not for my dad.

I asked my daughter this week how FTD has affected her and she said that it makes her think of life in a different way.  She no longer thinks the little things are that important.  I’m really proud of her for feeling that way.

As far as me, I miss my mother every day.  Sometimes I wish that I had made an even bigger effort to enjoy every moment I had with her, but then I have to remind myself that I did what I could in the moment. 

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 2nd Annual Food for Thought week, October 5-12.

Swiss Steak

Swiss steak was always one of my favorite meals growing up.  I never understood why my mom called it “Swiss” steak though.  The only thing Swiss that I knew of was cheese and this had nothing to do with cheese.  It did have a rich tomato gravy with green bell peppers and sliced steak.  Every time my mom served it (with mashed potatoes) I was in heaven. 

Ingredients:

1.5 pounds sirloin steak or round steak sliced into ¼ inch slices

Salt and pepper to taste

Flour for dredging

2 teaspoon olive oil

1 small onion, diced

2 ribs celery, diced

1 green bell pepper, sliced

1 28 ounce can diced tomatoes

1 tablespoon Worcestershire sauce

3 cloves garlic, smashed and peeled

½ teaspoon dried oregano leaves

1 bay leaf

Season meat with salt and pepper.  Dredge in flour.  Brown meat in hot oil.  Add remaining ingredients, bring to a boil, reduce heat and cook slowly for about 1 ½ hours or until tender stirring occasionally.  Serve with mashed potatoes.  Serves 4.

Day 6 of Food for Thought – Alice’s Sundried Tomato Pesto

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?

At this time, there are no cures for this devastating disease.  However, the pace of research is increasing rapidly.  Scientists are energized by advances in understanding these disorders and the first drugs for FTD are entering clinical testing.  Funding for continued research is critical.  Participation of patients and families in studies is essential.  A cure will only be found through expanding partnerships between families and physicians, scientists and funders, and policy makers and the public.

How has FTD affected my family?

One blessing that has come out of this experience was seeing my dad becoming the nurturer.  It comes natural for women being moms and wives to take care of the personal needs of their families.  It didn’t come easy for my dad.  This evolution of caregiving has given me the opportunity to see my dad take care of my mom.  Like I said, this was an evolution.  When my mom was still capable of taking care of her basic needs, my dad would get upset when she would not finish a task, like unloading and reloading the dishwasher or folding and putting away the laundry.  We kept telling him to hire someone to help around the house, but I think he thought that he and my mom could take care of everything on their own.  The FTD support group we attended saw the fatigue in my dad’s face.  They kept insisting that he get help…and he finally did.  Through a group in their town he found a wonderful caregiver.  She fit right in and loved my parents as her own.  Now my dad has an opportunity to do the things around the house that he hadn’t been able to and learn how to be a better caregiver.

As challenging as it may be at times and as resistant as your loved one may be, it is so important to get help.  That can be a support group, someone to come help with housework, someone to take care of your loved one’s basic needs, skilled nursing or even nursing home care.  Asking for help doesn’t mean you are a failure, it means that you love the person you are caring for and you are taking care of you.

Sun Dried Tomato Pesto

1 jar 7-8 oz. oil packed sun dried tomatoes

Olive Oil (enough to make ¼ to ½ cup when combined with the oil from the tomatoes)

4-8 cloves garlic

¼ cup pine nuts (toasted)

¼ cup fresh basil (packed)

½ t salt

¼ cup grated Parmesan cheese

Drain tomatoes, reserving oil.  Add olive oil to reserved oil to equal ½ cup (I eyeball this and never use ½ cup of oil…more like ¼ to ½ cup of oil).

Combine drained tomatoes, garlic, pine nuts, basil, salt and Parmesan cheese in a food processor.

Cover and process until finely chopped.  With machine running, gradually add the oil.  Process until smooth, scraping down sides of processor as needed. 

Tip:  The mixture will initially clump in a ball and as you add the oil it will smooth out and spread around the base of the food processor.  That’s when I know it is done.  You can save any remaining oil for sautéing veggies or meat.

Day 5 of Food for Thought – Alice’s Black Eyed Peas

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?

FTD can affect language and ability to communicate.  The person with FTD may develop problems speaking fluently, understanding words, reading and writing.  This is known as primary progressive aphasia or PPA and there are several forms.  Some people become hesitant in their speech and begin to talk less, but appear to retain the meaning of words longer (non-fluent variant).  Others have difficulty understanding words and recognizing objects, but retain the ability to produce fluent speech (semantic variant).

How has FTD affected my family?

Two of the scariest things about this disease began shortly after my mom’s diagnosis.  She began having hallucinations and she began wandering.  She would see rats in the corners inside the house and snakes outside.  She would also see people watching her.  She would go to the guest house on their property where my grandmother had lived years ago.  She would go there to visit with her.  My grandmother died back in the ‘80s.  She also had a difficult time sleeping and would get up in the middle of the night and turn on all the lights.  This was frustrating for my dad who was losing sleep afraid that my mom would wander off in the middle of the night.  Some of this could have been from new medications or it could have been from her brain deteriorating. 

Before she got sick, my mom was faithful about walking every day.  When the disease set in, she would take their dog and go for walks around their property.  She stayed on the path that my dad had carefully manicured.  As the disease got worse, she would forget to put her shoes on or tell my dad where she was going.  She quit taking the dog with her.  One day my dad found her walking down the middle of the street on a hot day, barefooted.  A couple of concerned drivers pulled over to make sure she didn’t get hit by a car and called 911.  Thank goodness the sheriff’s department was understanding and let my dad get her back to the house.

My dad has had to modify the house to keep my mom from doing something that might injure her or someone else.  He has put locks on the doors, he has turned off the hot water faucets to some of the sinks in the house, he’s recently put up a gate blocking off the kitchen so she doesn’t turn on the gas burners.  He also found a guardrail for the bed that keeps her from getting up in the middle of the night.  This has helped my dad get a better night’s sleep.

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 2nd Annual Food for Thought week, October 5-12.

Alice’s Black-Eyed Peas

Serves 4

2 slices of lean smoked bacon

6 ounces ham, ¼ inch dice

½ cup red onion, chopped

1 jalapeno, seeded and chopped

1 clove garlic, minced

¼ tsp. salt plus more to taste

¼ tsp. pepper

¼ tsp. smoked paprika

½ tsp. ground cumin

1 15 ounce can diced tomatoes

1 15 ounce can black-eyed peas, drained and rinsed

In a 10-12 inch skillet over medium-high heat, sauté the bacon and ham till it begins to caramelize, stirring occasionally, about 5 minutes. 

Add the red onion, jalapeno and garlic.  Sauté with the meat till veggies begin to soften, about 3 minutes.

Add the dry seasonings and stir till fragrant, about 1 minute.

Add the tomatoes and bring to a boil.  Cook stirring occasionally for about 3 minutes. 

Add black-eyed peas.  Stir, bring to boil, reduce heat to low and simmer for about 5 minutes.

Day 4 of Food for Thought – Alice’s Favorite Pancakes

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?

Damage to the brain’s frontal and temporal lobes affects complex thinking and reasoning.  These problems in “executive function” alter a person’s ability to plan, organize and execute activities.  People gradually become less involved in routine daily activities and withdraw emotionally from others.  Symptoms may include distractibility, inflexibility, reduced initiative, apathy, poor judgment and abrupt mood changes.

How has FTD affected my family?

On the weekends when my mom had more time around the house, she would make us girls pancakes for breakfast.  Then later when we had our own families and would visit on the weekends, she would make pancakes for the grandkids and us.  She had that recipe memorized and she would whip up a batch in no time at all.  And no one had to worry if we ran out because if we did, she would just make another batch. 

When the symptoms of FTD began to appear, she would have to be coaxed to make those pancakes.  As she got worse, she was unable to plan and prepare the pancakes so one of us would make them for her.  She just didn’t have the initiative anymore.  This was particularly hard on the grandchildren. 

We were very open with the grandkids about her degenerative disease, but it was still sad for them as well.  My younger niece and nephew don’t concern themselves with the fact that she rarely says a word or even smiles anymore.  They just hop up in her lap and love on her.  My daughter has said many times how much she misses her Grammy.  It is very important not to shield the children from the progression.  Depending on their age, there are many ways to approach the topic.  The AFTD has valuable resources for approaching the topic with children and teens at http://www.aftdkidsandteens.org/.

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 2nd Annual Food for Thought week, October 5-12.

Favorite Pancakes

Sift together:

1 ¼ cup sifted all-purpose flour

3 teaspoons baking powder

1 tablespoon sugar

1 teaspoon salt

Combine:

1 egg beaten

1 cup milk

1 tablespoon oil

Pour wet ingredients into the dry ingredients and stir to combine until flour is moistened and batter is lumpy.

Pour ¼ cup batter onto hot, oiled griddle.  Flip when bubbles begin to form and break.  Continue cooking till the center is cooked and pancakes are browned.  Makes 12-16 small pancakes.

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.