Caregiving, Incontinence, and Frontotemporal Dementia
June 26, 2020
By Nathan Sheffer
In this feature, we conducted an interview with Candace Williams, a caregiver to her mother and blogger. Candace started the blog OurFTDJourney shortly after she became a full-time caregiver for her mother who was diagnosed with frontotemporal dementia.
- About Frontotemporal Dementia (FTD)
- FTD, Incontinence, and Tranquility
- Caregiver Perspective and Tips
Candace is 44 years old and is providing full-time care to her 63-year-old mother. Her mother, Robin, was diagnosed with frontotemporal dementia (FTD) in October 2013, at the age of 57. While her mom’s diagnosis was a shock, Candace had been noticing obscure behavior from her mom for a few years. “The signs seemed like Alzheimer’s, but she was so young,” Candace explained. “I didn’t think it could be.”
What is FTD?
Frontotemporal dementia, also known as FTD, is a group of disorders caused by cell loss in the frontal and temporal lobes of the brain. The frontal and temporal lobes of the brain are generally responsible for language, behavior/decision-making, and personality. FTD is the most common form of dementia found in younger adults. About 60% of adults with FTD are between the ages of 40 and 65.
“Mom got in 3 car accidents in the span of a couple months. Plus, her behavior changed, which I later understood was part of the disease,” Candace said. “But her other mental health problems made it hard to know what was going on.”
Candace stressed that FTD can break up relationships with family and friends because the disease can cause behavior and personality changes. These changes can be misunderstood, so she urges people to consider what else may be going on in that person’s life. “I was close to distancing myself from my mom,” Candace said. “Before I knew what was going on inside her brain, I thought she was just being rude and disrespectful to me. But that was not mom, that was the disease.”
Candace created her blog to help others who may be going through similar situations and need advice or support. “There wasn’t much out there on FTD at the time,” Candace commented. So, she wanted to help people through the struggle and share what she has learned with others.
Our FTD Journey
“Shortly after her diagnosis, Mom said she wanted to do a project together,” Candace said. “I didn’t know what it would be, but mom was a teacher and enjoyed educating others. So, I thought maybe a blog or website to document our journey and share with others.”
And that is what she did. Candace and her mom created OurFTDJourney.com and are documenting their journey together. “It’s been a fun thing to do together. While the caregiving is challenging, I enjoy sharing my experience with others. And she may not be able to say it, but I think mom would be proud of it too,” said Candace.
FTD and Incontinence
Before Candace and Robin found Tranquility, incontinence management was not easy. With FTD and other types of dementia, the person often experiences functional incontinence. Functional incontinence is when the body is still sending appropriate signals of the need to urinate, but the person either cannot get to the bathroom fast enough or the person no longer understands the signal the body sends.
This was the situation with Robin. As her FTD progressed, she began having accidents at night. But it took a little time for Candace and others to understand the need for absorbent products. “It started out with wetness here and there at night, but overtime I knew we needed something to protect my mom and the mattress and sheets,” Candace said. “We started off using [competitor] brands, but we continued to have leaks.”
Candace said she would be up multiple times at night to help her mom change her product. Candace would strip the bed, start laundry, and hope it wouldn’t happen again in a few hours. Once mom started having accidents during the day, and the nights were getting worse, she knew she had to find something better.
The Tranquility Difference
Once Candace started using Tranquility with her mom, the incontinence aspect of caregiving got a lot easier. “I ordered samples from your website, and you know what? Mom and the bed were bone dry the first night!” Candace exclaimed.
Candace explained that Tranquility has given her peace of mind about incontinence. “We both sleep better at night now. Mom because she is dry, and I sleep better knowing she isn’t going to develop a rash or sit in wetness”, said Candace.
Finding the right absorbent solution that works to keep skin dry, minimize leaks, and allow for hours of protection can allow caregivers more time to focus on the many other aspects of caregiving and provide a little more time for self-care. The right absorbent product is not only great for the person providing care, it is also best for the person with incontinence. Proper incontinence management will help protect against negative health outcomes like skin breakdown, pressure sores, UTI, slips and falls, and more.
Tranquility products are designed for maximum protection, allowing for hours of uninterrupted sleep or hours of activity. There are many challenges of caregiving, however, hundreds of caregivers have shared stories with us about how Tranquility helped make caregiving easier.
The Challenges of Caregiving
“It has been harder to take care of myself since caregiving for mom,” Candace explained. “So much time and energy goes into doing my best with mom that I forget my own needs.” Making time for self-care is certainly a challenge for many caregivers.
Another area that can be difficult for caregivers of adults with dementia is support from others. Often, adults with dementia lose touch with friends and community members because of the disease progression. Whether it is due to being less active and social, or because friends find it challenging to watch another friend decline, people lose touch and support.
“Friends don’t come around to see mom much anymore,” explained Candace. “What is hard is they didn’t just leave mom, they left me too. Lack of support from friends and family makes it challenging.” Candace also explained that a lack on information about FTD online and in her community were lacking; this was another motivator to start OurFTDJourney.
While caregiving is certainly challenging, Candace made sure to express that it is rewarding, and she wouldn’t have it any other way. “Mom took care of me, and I feel I should now take care of her,” said Candace. “Even on a bad day mom is happy to be with me. Her hugs, kisses, and smile make it all worth it.”
Advice for Caregivers
We also discussed what advice Candace would give to caregivers, and specifically caregivers for people with dementia.
“If the environment is right and peaceful, life will be easier,” Candace explains. “You need to observe situations and be able to react”. Candace explained an example of adjusting an environment to create a better situation for her mom. Robin was watching TV and a family member turned the volume up too high. Robin started to get fidgety and seemingly upset, but Candace didn’t quite know why. A few minutes later, Robin threw something at the TV, breaking it. Candace came to realize it was the volume on the TV that was upsetting her mom, but Robin couldn’t find the words to express it, so she took action. “I quickly learned to keep the TV at an appropriate volume,” said Candace. “Little changes to the environment can make a big difference.”
Candace next explained how perspective can help caregivers overcome the challenges of difficult days or events. “On bad days, what good things happened? Try to think about the positive parts of the day, and not focus on the negative”, Candace said. “Celebrate the little things. Perspective is everything. If you think negatively, you will be miserable”.
- Pick Your Battles
Picking your battles, or letting go of little challenges or difficulties to save strength and energy for more important things, was Candaces’ last piece of advice. As dementia progresses, the individuals short term memory will continue to decline, and this can be difficult for caregivers to understand. Too often, caregivers attempt to correct or interject the right information, when it’s not beneficial. “Let it go,” Candace explained, “there are bigger fish to fry. Getting in arguments over little things just isn’t worth it. Pick your battles.”
“I Wouldn’t Have it Any Other Way”
The challenges and hardships of caregiving are quickly realized among those who have provided care to a family member or someone in need. Caregiving is time-consuming, stressful, physically demanding, and complex. However, so often we hear how rewarding the caregiving experience is and how caregivers wouldn’t have it any other way. While the United States is not known for filial piety, defined as the innate responsibility to care for your aging parents, those who do care for their aging parents often cherish that time.
If you are a caregiver and are struggling to manage incontinence, trust Tranquility to make life a bit easier! Our variety of superabsorbent incontinence solutions will help you and your loved one sleep better at night and enjoy more of each day. Plus, less laundry, fewer changes, and fewer overnight interruptions will give you more time and energy for other caregiving activities or even self-care. If you want to learn more about our products, need advice on what products to try, or have questions about incontinence, our Care Team is available M-F 8 a.m. to 5 p.m. ET at 1-866-865-6101.
A special thank you to Candace and her mother, Robin, for sharing their story with us! Check out their blog, OurFTDJourney, to follow their journey and learn more about caregiving and frontotemporal dementia.
To learn more about the various types of dementia, incontinence, and more, visit our Alzheimer’s and Incontinence Resources Page.
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