I was 28 when my dad was first diagnosed with Mild Cognitive Impairment (MCI). I was a single young professional, working my first management job in a D.C. nonprofit (my dream). At that point in my life, I felt like my future held a world of possibilities. I would move up in my career to become a CEO, find the love of my life, get married, and have two kids (a boy and a girl). Those dreams disappeared when I read that my dad’s diagnosis would likely progress to dementia. My mom wasn’t ready to accept Dad’s diagnosis. So as the only child, I stepped up. The only problem was my parents lived 3 1/2 hours away from me.
I was devastated that I couldn’t be there for my parents the way I wanted to be. How would I handle taking care of both of them, work a job in downtown D.C., and live my own life? I felt helpless from so far away, and there was no one my age to empathize. What else could I do, besides read depressing articles about how there’s no cure for dementia?
But here’s what I learned, several years later. Living long distance from your parents can actually be a good thing! Geographic distance also means emotional distance. While that can cause us to feel helpless, it’s actually better for our own emotional wellness. While our caregiving parents are overwhelmed and surviving day-to-day, we can take breaks. We can go on vacation, spend time with friends, get a pretty full night of sleep, and take a relaxing shower. We can visit our parents and enter the world of dementia, and then head back home when it gets to be too much. As long-distance daughters, we can also see the forest through the trees. We can learn what steps are coming in the future for both of our parents. That way, we can help our families stop reacting, and start responding to dementia.
Here’s what I recommend you do as a long-distance daughter, based on my personal and professional experience:
1) Start exploring and investigating
First, investigate and understand the wider scope of your parents’ finances, so you can know what they can afford. Do they have enough money to hire a financial planner, elder law attorney, or pay for long-term care? Then, encourage them to update their legal wills, since they will likely need to change the power of attorney to you. This way, you can learn about and honor your parents’ final wishes before dementia prevents reasoned decision-making. Finally, when you visit, try to observe your parents. Is your parent with dementia still driving safely? If not, they are a danger to themselves, to you, and to everyone on the road.
Knowing all of this information ahead of time is invaluable. It will save you and your parents a ton of stress and money in the long run, and it will help you feel empowered.
2) Find local resources and vet professionals
You’ve no doubt seen a ton of dementia resources out there. But you’re not sure what to search for first. Here’s a tip — try to narrow down all the available options online by searching in your parents’ Zip code.
Google “Area Agency on Aging” to find the closest location to your parents. Next, call that agency, and tell them that your mom or dad has dementia. They will connect you with dementia-specific resources, which you should check and decide if they would be a good fit for your parents, now or in the future.
Then, start to identify local professionals, starting with a financial planner, elder law attorney, accountant, neurologist, geriatrician, and grief counselor. Check all online reviews for these professionals (Yelp, Google, Healthgrades, etc.). Find out if they currently work with clients who have dementia. Share this information with your parents and then go with them to meet these professionals. Look for red flags, and trust your gut to ensure it’s a good fit for everyone.
3) Be patient
Taking the steps above will lessen your guilt and feelings of helplessness. But your parents may not be ready to be proactive. It’s frustrating, it’s expected, and it’s OK. You can still make the best plan for your parents’ future and have it ready for when a crisis does happen (and it will!). At that point, you’ll be calm and prepared one. And the best part? Your caregiving parent will be more likely to listen to what you have to say.