Careblazer, there are some things about dementia caregiving that most people will never tell you.
They can blindside you. They can leave you second-guessing yourself, or make you feel completely alone. But once you know them, you’ll be stronger, more prepared and more confident.
Here are five facts about dementia caregiving I want you to know.
1. Most Healthcare Providers Have Little to No Dementia Training
You might assume that doctors, nurses and other professionals automatically understand dementia. That’s not the case. Most receive little to no training in dementia care at all.
That means you will often know your loved one’s condition better than the professionals do.
And yes, it means you’ll have to advocate. Sometimes you’ll have to push to make sure your loved one gets the right care. It can feel scary at first. But remember, you are your loved one’s best voice.
I share what I wish doctors understood about family caregivers in 3 things I wish every doctor understood about dementia caregiving.
2. People Will Disagree With Your Caregiving Decisions
No matter what choice you make, and no matter how much preparation, thought and deliberation you give it, someone is likely to say, “I wouldn’t do it that way.” Or, “Are you sure that’s best?”
It can come from family members, friends, even professionals.
But those people don’t live your day-to-day life. They’re not in your reality.
So other people having other opinions doesn’t mean you’re making the wrong decision. Often it means you’re making hard decisions that most other people don’t have to face. And most other people don’t have all of the information and the full picture that you do as the main Careblazer.
I come back to this in 5 dementia caregiving truths I wish every caregiver knew, because you can’t control what other people think of your choices.
3. Other People’s Comments Might Trigger You
This one I personally struggled with when I was caring for my parents. If you’re not careful, it can rip away your relationships with other family members and friends. I don’t want that to happen to you.
Has somebody ever said to you, “Wow, he sounded so great on the phone”? Or, “Wow, she looks so good”?
They mean well. But those words can sting, because they don’t see the nighttime wandering, the arguments, the endless repetition. They don’t see the hours you put into getting your loved one ready for the appointment. They don’t see the 23 hours of the day your loved one isn’t seeming okay, compared to the 15 or 30 minutes on the phone when they sounded all right.
These comments can be so triggering because they feel a little invalidating. Like maybe the struggles we’re sharing aren’t real. Like maybe we’re exaggerating, being dramatic or overreacting.
Here’s what personally saved my relationships with my siblings when I was caring for my parents. I had to constantly remind myself that those comments, “Dad sounded so great,” “Mom looked good,” were coming from a good place. A loving place in their hearts.
I did not believe they were trying to say “you must be exaggerating,” even though that’s how it felt. I had to keep telling myself: of course that five-minute phone call or that ten-minute video chat seemed okay. It makes sense. Dementia is a confusing condition, and people who aren’t living it usually aren’t going to see what we see as the main Careblazer.
I go deeper into this in when everyone says your loved one with dementia seems fine. And if family members don’t believe what you’re seeing at all, I talk through why in when family doesn’t believe your loved one has dementia.
4. You Need to Put Your Health First or You Will Burn Out
This one can surprise caregivers the most.
Many caregivers skip their own appointments. They stop exercising. They push through exhaustion.
But research has found that spouses who feel strained by caregiving are at higher risk of dying than people their age who aren’t caregivers.
So truly, taking care of yourself is not selfish. It’s what allows you to keep caring for your loved one. That walk, that little nap, that tiny break… it matters for you, and it matters for them.
5. Guilt Shows Up in Surprising Ways
This is also something I struggled with.
You might expect guilt around the big decisions, like whether it’s time to move your loved one into a care facility, or certain big medical choices. But guilt sneaks in everywhere. You can feel guilty for needing a break, for wanting alone time, or even for feeling relief when somebody else steps in.
What surprised me is that guilt can get even louder after your loved one passes away.
When my mom died, I replayed so many situations and decisions in my mind that I felt bad about. I remember the very first moment I walked up to my mom’s casket and looked at her. The first words out of my mouth were, “I’m so sorry. I’m so sorry I wasn’t more patient. I’m so sorry I wasn’t a more loving daughter.”
I just bawled. All of it came out. It was an immense wave of guilt.
But that guilt isn’t a signal that you did the wrong things. Caregiver guilt is universal. It’s natural.
And the truth is, it’s not that you’ve done anything wrong at all. Many times it’s a signal that we care so deeply, and we know we didn’t show up perfectly all of the time. Because that is impossible.
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Visit askchapter.org/careblazers or call Chapter at 504-490-0080 for free, personalized guidance to make sure you’re on the right plan this year. Chapter sponsored the video this post comes from.
*Chapter: Chapter and its affiliates are not connected with or endorsed by any government entity or the federal Medicare program. Chapter Advisory, LLC represents Medicare Advantage HMO, PPO, and PFFS organizations and stand alone prescription drug plans that have a Medicare contract. Enrollment depends on the plan’s contract renewal. While we have a database of every Medicare plan nationwide and can help you to search among all plans, we have contracts with many but not all plans. As a result, we do not offer every plan available in your area. Currently we represent 50 organizations which offer 18,160 products nationwide. We search and recommend all plans, even those we don’t directly offer. You can contact a licensed Chapter agent to find out the number of products available in your specific area. Please contact Medicare.gov, 1-800-Medicare, or your local State Health Insurance Program (SHIP) to get information on all of your options.
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Knowing These Can Set You Free
Careblazer, these facts might sound heavy. But knowing them can actually set you free.
You’re not failing. You’re facing a reality that most people will never understand. And you’re doing it with love. That’s why it is so hard.
When the comments, the second-guessing and the guilt pile up, it helps to talk with people who see the whole picture. Inside the Care Collective, you can work with me, with other dementia experts, and with a community of caregivers who live this every day. You can learn more here.
