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
- 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.
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.
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.
How can I help?
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.
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.