# When Children Become the Caregivers

By  
Brandon F., AllStripes VCP Ambassador

Feb 12, 2021 • 4 min read

_Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._

Perhaps every son thinks his mother is deserving of a “Best Mom” award. My sister and I certainly do! As a single mom, she ran the world: raising us, working as a nurse, running a business and volunteering. But it all changed five years ago, when at the age of 56, she began experiencing the symptoms of what we would later learn was early-onset frontotemporal dementia (FTD). After being a parent for 18 years, she lost the capacity to be a “mother” to her children.

My mom left little undone with the time she had before the disease took hold of her. She was a skilled oncology nurse as well as a case manager for several hospitals and health insurance companies for 33 years. But in 2015, she had a seizure with no warning. In the months that followed, we saw a multitude of changes occur. It began with speech changes where she would substitute commonly used words for ones that were technically correct but not consistent with how she spoke. Her emotions changed. Every emotion was more pronounced and more intense: joy, sadness, excitement and anger. Initially, these changes were so subtle that anyone who had just met her or even someone who had known her as a friend would not have even noticed. As her children, we noticed but had no idea what to make of it or what to do about the changes we saw.

She then began having periods of confusion. She could speak and communicate her ideas, but her ideas did not make sense. She also seemed to be fixated on working late into the night, and her sleep pattern was completely off-cycle. She sometimes called friends at odd hours, like 2 a.m., to speak with them about some event she heard on the news.

This confusion began to affect all aspects of her life, especially her work-related duties as a nurse case manager. One year after her first seizure, she had to take medical leave from her position and was placed on permanent disability.

Ultimately, the confusion became constant. She could not perform ordinary household tasks, like planning meals or paying bills. This all became my responsibility. As her children, we gradually took over all of the things that a parent normally does for a child. We began not only taking care of ourselves but also taking care of our mother.

Throughout this process, my mom had a strange awareness of what was happening to her. She was aware enough to feel the anxiety of not being able to control her own mind, but she did not have the ability to do anything about it.

For three years, my sister and I spent all of our time responding to the effects of something we could not see, identify or do anything about. My mom underwent numerous tests that suggested some abnormal processes in the frontal lobe; however, the inclusion of increasing seizures suggested an aggressive and rapidly progressing disease.

It wasn’t until three years later that we received a conclusive diagnosis after her doctor ordered whole-exome sequencing: it was a rare mutation of the VCP gene. This mutation is thought to cause an increase in protein TDP-43, which produces brain tissue degeneration causing the disease’s symptoms. There are many intricacies in the way VCP mutation variants affect the body. Some affect the cell structures of the brain and others affect muscle and bone.

Currently, there is no treatment or cure for this disease. This diagnosis is devastating because we know how it will progress, from the experiences of those who have had this disease before, but it also provides an amazing opportunity to target the VCP mutation and to cure this debilitating illness. If we are able to increase our understanding of this genetic mutation and apply advancements in medical technology now and in the future, there is absolutely no reason this disease will not become as treatable as other diseases.

Like anyone with or caring for a person with a rare, currently untreatable disease, I, as my mom’s caregiver, have two goals. The first being a short-term goal: to do everything I can to treat the visible symptoms of the disease and make sure she has the absolute best quality of life. The second is the long-term goal to treat the root cause of the disease. Treatments for rare diseases do not just appear; it takes an enormous amount of concerted effort by many motivated researchers, clinicians, patients, and advocates, to learn about the possible interventions and to fund their development.

I signed my mom up for the [AllStripes’ VCP disease research program](/content/program/vcp/index.html) because it enables us to actively contribute to the knowledge of her disease and will help our patient advocacy organization, Cure VCP Disease, better engage with researchers and pharmaceutical companies who will create the treatment. The AllStripes platform makes it easy for patients of rare diseases to contribute their health information to their disease’s body of knowledge — a crucial first step in achieving the goal of a treatment.

My sister and I grieve that we did not get to ask our mom the type of questions whose answers can only be appreciated by young adults. Some days she sheds tears of frustration and grief, and other days we see glimmers of who she used to be in small things and in little ways. Like our mom, we too shed tears of frustration and grief. Although she cannot communicate with words, her eyes with a single look can tell you all you need to know: she deserves the “Best Mom” award. Thank you, Mom!

## We know that every person's story is unique and deserves to be heard.

### Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

#### Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

#### Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

#### Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

### 1. Build a support network.  
When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

### 2. Stay organized.  
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

### 3. Explore treatments and clinical trials.  
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

### 4. Make time for self-care.  
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.