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Our FTD Journey

Hello Everybody! I am so glad you are here with me today. I am the Proactive Caregiver and I specialize in educating others on how to be proactive by empowering YOU - the caregiver. If you cannot take care of yourself, then you cannot take care of your loved one.

I shared with you in previous blogs and Podcast shows how we dismissed many of Mom's early signs of Dementia because of her Manic Depressive Bipolar tendencies. Another reason was that we knew so little about Dementia overall during the 1990s and very little about Alzheimer's. The limited information about Alzheimer's did not seem to fit with what we were witnessing in Mom nor did her age and behaviors match up. That is because Frontotemporal Dementia, also referred to as FTD, is associated with personality, behavior, and language.

FTD is the most common dementia under the age of 60 but is not well known at all. It is a degenerative brain disorder that primarily affects the frontal and temporal lobes of the brain. FTD is a gradual, progressive decline in behavior, language, or movement, with memory usually relatively preserved until later stages. According to the Association of Frontotemporal Degeneration (AFTD), it typically strikes younger with onset ranges from 21 to 80. The majority of FTD cases occur between the ages of 45 and 64 which creates a substantially greater impact on work, family, and economic burden faced by families than Alzheimer's.

Today's guest, caregiver Candace Williams, will share her story in connection with Frontotemporal Dementia. Candace has been caring for her mother Robin since her diagnosis of FTD for over 7 years. Robin was diagnosed at 57 years old and now at 64 is entirely dependent on Candace. While caring for her mother has been a challenge, Candace also finds it quite rewarding. Candace and I recently bonded over our experiences including our frustrations with the lack of education and resources available for those diagnosed with Early Onset Dementia at a younger age in life.

This is why Candace and her mother created a blog called Our FTD Journey. They wanted to create a space to offer support and build a community, where others dealing with the same thing could have a safe place to share and express themselves.

Part of my early struggles with dementia was not so much caring for Mom but getting others to believe me that something was wrong. I had so many moments that I was able to compare what a normal behavior looked like or felt like witnessing in comparison to someone that was mentally challenged. When I began to explain what I felt was wrong with Mom and which form of Dementia she most likely was living with I was told that I was wrong. It would take a couple of years later when Mom did undergo Pet and CT scans in addition to several other neurological forensic tests to confirm the diagnosis.

The problem with FTD is like any other form of dementia in that it varies by individual. It does not present with memory problems so someone living with FTD, like Mom, can become quite the actor in an attempt to hide the progressions. The length of progression can be anywhere from 2 to over 20 years. FTD is far more aggressive than Alzheimer's and creates more difficulty for the caregivers because of the behavior variants. Mom gradually became difficult to be out in public or social settings when her judgment or language was gradually more inappropriate.

One afternoon after church on Sunday we all went to lunch at a Japanese restaurant. Mom sat down and immediately picked up her menu to read through her options. I left her with the menu as something for her to do knowing I would have to order for her when the time came. While we were waiting for our order an infant at a table nearby started to get fussy and cry. Any other time in church Mom usually makes faces at the infant to make them smile. This time she said, "Shut that Fu…baby up already." After feeling incredibly embarrassed we decided it was time to pay the check and take her back home. I knew why it happened but to those around us she was seen as a rude inconsiderate person.

As Mom progressed it was not uncommon for her to throw a temper tantrum like that of a 3 or 5-year-old child. Because our loved ones living with FTD cannot change their behaviors then the caregiver has to manage their own expectations and learn how to confront their loved one to reduce the risk of escalating the behaviors or anyone getting harmed.

FTD is incurably leaving those diagnosed with it an average life expectancy of 7 to 13 years after the symptoms start. The most common cause of death with FTD is pneumonia. FTD includes compulsive and sexual behaviors that range from simple actions (clapping, scratching, finger pilling) to hoarding, compulsive eating, or obsessing over sweets. Sexual behaviors can range from a total loss of sexual interest to a sharply increased sex drive or hypersexuality. Both ranges in behaviors can cause problems within marriages. As time passes and stages progress then they may also experience difficulties with communication by losing the ability to form words, sentences, or use disruptive vocalizations. Mom began to cuss a ton more than she ever did her entire life.

Roaming is also a form of compulsive behavior that needs to be addressed if your love is still insisting on driving. Mom often could find her way to my house which was less than a mile away but could not find her way back home in her early stages. She would drive for hours before she would stop to ask for help or call the family. Putting GPS trackers on the car or having them wear something to track their whereabouts is very important.

There are several things you can do for your loved one to help have as normal of a life as possible as symptoms and behaviors change. There is also a few reminders for caregivers to keep in mind with FTD.

1. Maintain a daily routine - predictable patterns and activities around meals, household tasks, physical activity, hobbies, social interaction, spiritual development, and most importantly regular sleep schedule.

2. Engage in activities often - simple activities to bring enjoyment will help to keep their skills, thinking, or physical abilities available as much as possible. If the activities become frustrating or trigger unwanted behaviors then it is time to adjust and reevaluate before they become compulsive, aggressive, or completely out of character.

3. Do not take it personally. FTD takes away self-control and the rational mind from our loved ones. Their actions are not personal attacks even though it may feel like it at times.

4. FTD is not well known. You will find doctors will misdiagnose or confuse it with other forms of dementia such as Alzheimer's. Like me, you may find yourself educating healthcare and other service providers on the differences as you learn more first hand.

5. Trust yourself. You are advocating for someone with a serious medical condition who deserves respect and competent care no matter how poorly others understand their symptoms. Your opinion is valuable.

6. Take care of yourself. You must continue to reenergize your mind, body, and spirit as you find ways to navigate the continually changing world you and your loved one live in.

7. Keep educating yourself. Knowledge is your best tool for finding quality care, more advocates, and other caregivers who understand what you are going through.

8. Tend to grief sooner than later. Often times we experience the loss of our loved ones as they progress with FTD but do not recognize the signs of situational depression. Grief can become depression and depression can impede your ability to care so do not hesitate to schedule an appointment with a therapist.

Be sure to subscribe to the podcast on your favorite app. If you're not finding it there, then let me know and I will do what I can to get it added!

I hope this gave you more food for thought. Until next time, BE PROACTIVE. Take care, everybody.



Intro: Vacation Time by Khris Paradise

Outro: Misty by Khris Paradise

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