Are you new to caring for someone with dementia and already feeling exhausted?
I asked Careblazers on Instagram for the best piece of advice they would give a caregiver just starting out. Over a hundred comments came in the same day. This isn’t theory. These tips come from people who have lived through dementia caregiving, and people who are living through it right now.
Here are the ones that stood out to me.
Step Into Their World and Don’t Argue
This one comes from Anna: “Step into their world. Don’t argue. Be patient and know that this is not their fault.”
Her dad would ask, “Where’s my mom? Where’s my brother? Where are my parents?” In the beginning, she would tell him they had all passed away. Each time, it was as if he was learning the news for the first time. He would get sad, cry, and grieve all over again.
So she learned to say they were at home, or at work, or at the grocery store, and then redirect him. That made all the difference.
Instead of focusing on giving them all the correct information and arguing with them, learn to step into their world. Very practical, very important.
Get a Power of Attorney in Place Now
There are two types of power of attorney: healthcare power of attorney and financial power of attorney. It’s a good idea to have both. I had both for my father.
Having them in place doesn’t necessarily mean they’re in effect right away. If you don’t already have these documents, it’s something to look into immediately.
Another Careblazer put it this way: “Talk to an elder care lawyer now, not when you think you need it.”
I explain why this paperwork is the one thing with a real deadline in where to get help after a dementia diagnosis.
When People Offer to Help, Tell Them What You Need
This one’s simple but powerful. When people ask how they can help, tell them what you need.
We don’t have to wait until we need help to accept help. If anything at all would be helpful to you, ask for it. Say yes to it. We don’t need to wait until we’re totally on empty.
This can last for decades. It’s okay to start conserving your energy now and soaking up all the help and resources you can get.
Another Careblazer said: “Lean on others who offer support in any way offered. Whether it’s prayer, texts, meals, time, gift cards, a compassionate listening ear, housekeeping, running errands, learn to say yes.”
Protect a Few Interests of Your Own
I love this one from Lisa: “Ensure that you have a couple of interests that you do for yourself. Maybe an exercise class, an art class, meeting a friend for lunch.” She says it’s how you make sure you have a support network you can reach out to when the going gets tough, even if it’s just to vent.
I’ve worked with thousands of Careblazers over the years, and it is so easy to get so consumed with caregiving that years go by. Then, when you really need support, you look around and everybody is gone. No more friends. No more acquaintances. No more people checking in on you.
Unfortunately, we’re the ones who have to foster those relationships and those activities, and protect them as much as possible.
The Healthy People Rule: Let Some Routines Go
Luna says: “Suspend your own healthy people routines. If it brings nothing but stress, it’s not worth it.”
Maybe showers don’t have to be daily. Maybe mealtimes don’t have to be strictly timed. Maybe the clothing colors don’t have to match. And maybe all the meals don’t have to be perfectly nutritious and home-cooked.
I love this. Give yourself some grace. Give yourself some compassion. When we’re really struggling, we can set aside what we think is the ideal way to care and focus on just getting through the day.
Include Your Loved One in Conversations
Talk to your loved one and include them in conversations, even if they can’t respond. And don’t talk about them as if they aren’t there.
Outsource What You Can
You cannot do everything yourself. If you can, don’t be afraid to outsource tasks. Getting help with meal prep, housekeeping, and even your loved one’s personal care can make a big difference.
From Becca: “Sometimes your time and sanity is worth the additional cost of using home delivery services for things like groceries and prescriptions.”
And from another Careblazer: “Take it one day at a time, breathe, and leave the room when you get frustrated.”
Learn About Your Loved One’s Type of Dementia
Belva says: “Do your own research about your loved one’s particular kind of dementia. My experience has been that caregivers have more knowledge than most doctors and medical staff. It’s a sad truth.”
Unfortunately, this is a fact. Most healthcare providers have little to no training in dementia care specifically.
That means we have to take it upon ourselves to advocate, research, and learn as much as we can, so we can give our loved ones the best care possible.
Find People Who Understand
Another Careblazer wrote: “Join a support group. Your friends and family will try to help, but more often than not, they will make hurtful comments out of inexperience and ignorance. You need to hear from people experiencing the care of this disease.”
Don’t Take the Mean Moments Personally
This one is powerful. It’s about emotionally checking out when you can.
When your loved one says mean things or is in one of those moods, we can’t take it personally. You can attribute it to the disease, not to the person.
That means not jumping straight to “this is what they really think of me,” or “they’ve always been this way toward me,” especially if you’ve had a hard history. I know it’s incredibly hard. But put a little bit of that buffer in place, and really recognize that their brain is deteriorating. That’s the reason for some of their moods, behaviors and comments.
One Careblazer added: “Remember, you’re the one who can control your emotions. They can’t. Your feelings are valid, but start with not taking everything so personally.” I love that one.
If the meanness has become a pattern, I go deeper into what’s happening in the brain in why some people with dementia become mean.
Give Yourself Some Grace
A few of the shortest comments said a lot:
- “Let yourself cry.” Yes.
- “You’re not supposed to do it all by yourself. Get a team.”
- “Don’t beat yourself up when you lose your patience. It’s going to happen.”
- “Face one day at a time.”
- “Move to music every day.”
There Can Be Beautiful Moments, Too
Let’s leave it on this one.
“Two and a half years into daily care for my mom, there was a season it was all difficult and you didn’t know what to expect. But as we’ve been near the end, the last several months, it has been incredibly beautiful caring and loving my mom at home. So many precious memories being made, even at the end.”
I love that, because it’s a reminder that caregiving can feel like peaks and valleys. Have some grace and compassion for yourself through all of it.
I share my own list in 5 dementia caregiving truths I wish every caregiver knew.
Every Thursday I send my best tips in the Dementia Dose. It’s free, and you can sign up here.
If you want people around you who get it, the Care Collective is where Careblazers work through moments like these together, every week. You can learn more here.
