When my family received the FTD diagnosis, our lives shifted dramatically. Our core unit of three lost a pillar and the homeostasis that was solid for decades had to shift. We had to modify our family system to acknowledge the loss and essentially learn a new to relate and be. At the same time, I had to learn how to take care of myself in a different way. I had to make sure my mask was securely fastened so that I could properly fasten my dads (shout out that airplane analogy, gotta love it!). I had to make sure my cup was properly filled before I could pour from it. I had to make sure I was living well.

You get me?

After a 10+ year journey with my dad’s FTD, I’m not expert, but I do fancy myself a huge proponent of Living Well vs. Self Care. During this time, i tuned in to myself, I learned things about myself, I tried (and failed) new activities to help myself live well. I listened to my gut as often as I could, I did everything to set myself up for success. It’s really pretty simple but we treat it like an indulgence. It’s not. It’s completely normal to take care of your self. It’s not selfish to want to live well, nor is it a luxury. Moreover, living well doesn’t need to happen after a life altering experience - you can want to live well because you want to live well. And because you want my advice on how to take care of yourself while taking care of a loved one with FTD, I am happy to share what helped me.

1. I let go of certain expectations

   Now, let me tell you. It’s not easy, it was probably the most challenging goal i set for myself. I’m STILLLLLL working on it. But, you guys. it’s crucial. I couldn’t fill my head, my time, and my thoughts with consuming feelings of what others “should” be doing. It was an “energy waster” and only left me feeling upset and resentful. When I was thinking “why isn’t x,y, or z doing x,y, or z,” I was not in a healthy headspace. So I did my very best to extinguish those thoughts and focus on “my friends are doing their best,” or “So and so isn’t trying to hurt my feelings.” I instead thought the people who were in my corner still had their day - to - day lives and I wasn’t always on the forefront (and that is ok!) By l etting go of “shoulds” and “well, I would have …” you are making more room for healthy, productive thoughts. A small hint to get started on this : when your brain starts to spiral down that should/would path, just be aware that it’s heading in that direction. Awareness is the first step in change.

2. I used my voice.

   During this time of my life, I had to use my voice in more ways than one. I had to become an advocate, I had to become a teacher, I had to research and learn and then explain what I learned to a care team. I had to find the balance of becoming my dads voice and still remaining his daughter. I used my voice to express my needs and wants and also to create boundaries around things that needed them. Beyond that, I used my voice to speak gently to myself. I learned how to accept help with my voice, to express and gently delegate where I needed more support and how. I spoke up against things that didn’t make sense and used my voice when things didn’t sit right. This part, just like the above, took time and tons of practice. I apologized if i used my voice harshly and I got louder if my voice wasn’t heard. Through this I learned that what I have to say matters AND (sometimes) how I saw it matters more. A small hint to get started on this: greet yourself with love in the morning. Use your voice to start the day off with a simple “good morning.”

3. I listened.

   Not only to others, but more to myself. I really got to know myself - my morals, what makes me tick, when i feel my best, where my mind goes when i allow it to wander… - and I learned how to listen to that little voice inside (a.k.a. my gut). To me, living well included tuning in, not out. I wanted to make decisions about my life and my dads life under the umbrella idea of living well. I wanted to make sure I trusted myself and my intuition and that meant i had to ignore the noise and chaos that life can bring. I had to be solid. So I learned how to stop looking for affirmation from others and make sure I stayed true to myself and my hope to live well. A small hint to get started on this: Be aware of when things “don’t feel right.” They’re probably not.

4. I lived in limbo and learned to slow down.

   I feel like I say “this was a really challenging part” at least once in each different aspect of living well, but the idea of living in the unknown drove my anxiety crazy and left me feeling untethered. I felt like I never knew what was coming, when my dad was going to die or even progress further in to the disease. I never knew if my phone was ringing if it was that dreaded call. I never knew if he was being cared for the way i wanted him to be, or if he was content. On the flip side, some aspects of me remained in tact. I was still a woman, a wife, a mom, a daughter, a student, etc. I was still me. But I was used to having a plan, to knowing what to expect. So when my dad started to act so different - my knowing, my stability and my calculated sense of what was to come fell apart. And that security continued to dwindle and I had to be comfortable living in “I don’t know.” I had to be ok with unknown and slowing my thoughts and my life down enough to live day by day. Not an easy feat, my friend.

5. I ACCEPT(ed) THE GOOD.

   This one came the most natural to me as it’s something I heard all my life. My dad constantly reminded me as I was growing to look for and accept the good. Don’t fight the light or ignore all the amazing things that walk in to your life and gently urge you to pay attention. To overlook the beautiful pink sky as the sun sets in to the vast ocean. Don’t take for granted when your favorite song comes on the radio or when your loved one that is slipping away in to the place beyond gives your hand a big squeeze. There is good in almost everything we come across. It’s just up to us to find it, let it in and accept that good. Always… always, accept the good.

This battle against an invisible enemy is consuming. It’s scary, it’s taxing and very overwhelming. Watching my dad slowly succumb to a disease that took away everything he was, was the hardest thing I have done in my life. But I’m here to tell about it. It’ll knock you down, it’ll cause you to second guess yourself, it’ll keep you up at night but it’ll also teach you alot about love, about yourself and about who you want to be.

Just watch.

Keep on, keepin’ on….

Xx,

Rachael