These Things Are Important, But…
Want to know the #1 key to amazingly awesome dementia care?
It’s not in this section.
But if you care for a person living with dementia, you’ve probably been focusing on (or been urged to focus on) the following list of issues. So, I’ll go ahead and quickly address them.
Without these things running on the back burner in your mind, you can give me your full attention when I get to the #1 key to amazingly awesome dementia care. Deal?
What stage are they in?
Knowing what stage someone’s in is important, for sure. That helps you set realistic expectations, as well as keep your parent or partner safe. And plan for the future.
Who’s the best doctor?
Quality medical care is also important, of course. What tends to happen when you start talking doctor, though, is you end up wondering how you’re going to get your parent or partner to the doctor. Any doctor. (Here’s how, ICYMI.)
When’s the right time/what’s the right place for placement?
The correct answer (which everybody hates) is, it depends. Doesn’t sound very helpful, I know. This post will talk you through it so you have more clarity on your particular situation and can come to a more informed decision, at least.
Who’s best to get their affairs in order: attorney, financial planner, insurance agent?
The short answer: an attorney, all day long. For a more in-depth explanation, see this, which also goes into a bit more detail on the other questions, as well.
These Things Are Important, Too…But…
Those are all great questions, and getting the answers right is extremely important. Once you’ve nailed down that list, you’ve probably been focusing on (or been urged to focus on) taking care of all these concerns, too.
So, I’ll just zip through these, too. That way you’ll be super focused when we get to the #1 key to amazingly awesome dementia care.
Respite care is necessary for your well-being. It gives you the ability to recharge your batteries and attend to other areas of your life. I discuss five things you can do for yourself when you have respite care in place in 11 Tips for Being An Awesome Care Partner.
Advance care planning
Most carers don’t like to look around the corner to see what’s coming down the pike.
Why? What’s staring you in the face right now often already feels overwhelming enough! Still, it needs to be done. This is a good place to start.
As I mentioned above in the “respite care” section, you need to take care of you. That said, in working with over 1,200 people living with dementia and their families, I’ve only ever met one (that’s right, one!) care partner who put her own self-care at the top of the list.
Here’s the truth: 4 in 10 care partners die before the person they’re caring for because care partnering is stressful and it’s all too easy to forget about yourself. Don’t be part of the 4 in 10.
Not sure if your parent or partner needs help with taking medications? This assessment tool professionals use will easily help you figure out how much help, if any, your person needs.
Note: In a long-term care setting, this assessment would be done every 90 days, or when there’s been a significant change in condition.
Okay, It’s All Important, But…
Everything I’ve mentioned so far is important. (So important that Do You Know The Right Answers to These Questions? addresses all these issues.) And yet, what I see as the #1 key to providing amazingly awesome care for a person living with dementia is almost always missing from every kind of focus-on-this/don’t-do-that/to-do list out there.
Want success as a care partner? As a human being? Focus on this one thing, because this is the really important part.
The #1 Key To Amazingly Awesome Dementia Care
The #1 key to amazingly awesome dementia care is this: LOVE.
Love is remembering this is a person.
This person is not a stage, a disease, a task, or a problem. This person is a person. A vulnerable person who depends on you to be their guide, their helper, their advocate, their partner in this.
Love is a verb.
Boston was right: it’s more than a feeling. The most loving thing you can do is to act loving even when you don’t feel loving.
Love is a habit.
Make it a habit to take a deep breath and approach every interaction with respect, kindness, and love. Can’t do it? That’s okay. Dementia will give you endless chances to practice, practice, practice until you achieve mastery.
Love is being prepared.
Love is being prepared for the doctor appointment by allowing enough time to get ready, to get out the door, and to get there without turning it into a mad dash filled with frustration and anger.
Love is knowing your limits.
Love is knowing yourself and your limits, and planning accordingly. Love is not adding “just one more thing” to an already too-long day. Love is taking care of yourself so you can be steady and strong for your parent or partner.
Love is patient.
It’s allowing extra time to answer the question. It’s answering the same question 40 times in a row, as though it was the first. Love is smiling. Love is gentle.
Love is accommodating.
It’s showing rather than telling.
Love asks “How important is it?” and realizes it just doesn’t matter if one of you thinks it’s going to rain and one of you thinks it’s going to be sunny.
Love asks “So what?” when one of you announces she’s having high tea with the Queen of England this very afternoon. Love simply says, “Wow! I can’t wait to hear the details.”
Love says “Who cares!” when she has a cowlick, yet managed to comb her own hair.
Love is loving.
Love is being silly and laughing like a loon.
Love touches with affection, not just to complete a task.
Love celebrates every little victory, every time any task is done independently (yet not perfectly).
Love is understanding.
Love is understanding he can’t help it.
Love is understanding she’s trying her best.
Love is understanding there’s no such thing as “faking it.”
Love is accepting you are the one who can change in any given interaction; your parent or partner cannot.
Love makes room for you, too.
Love is acknowledging when you’re in over your head–and then promptly seeking help.
Love is asking yourself daily, “What’s the kindest, most loving thing I can do for myself?” and then doing it.
Love is present.
Love is being present in the moment, with your parent or partner.
Love is looking for the hidden gifts in this experience, like how disinhibition causes the emotionally closed-off parent you grew up with to ‘magically’ gush about how proud he is of you, or how much she loves you.
Only love is real.
Love is patient. Love is kind. Love never dies.
ONLY LOVE IS REAL. No matter what else has changed since the disease process started, this won’t–because it can’t. People living with dementia can feel your love right up to their very last breath.
See why it’s the #1 key to amazingly awesome dementia care?
Christy Turner is a speaker and consultant, the founder of DementiaSherpa.com, and creator of the program What To Do When Your Parent or Partner Has Dementia. She’s a regular contributor on The Alzheimer’s Podcast with her segments “Guiding You Through Rough Terrain with The Dementia Sherpa.” Christy has enjoyed the privilege of working with over 1200 people living with dementia and their families.