Success Measures for Alzheimer’s Caregiving

ALZHEIMER’S, YOUR PARENTS, and YOUR SUPPORT

 “The cure for boredom is curiosity.  There is no cure for curiosity.”
– Dorothy Parker

If you’ve ever measured your success by the size of your boat, the initials after your name or the RPMs on your sportscar, you probably understand the link between success measures and motivation.

If you’ve ever spent even one day as an Alzheimer’s caregiver, you probably realize how tricky choosing an Alzheimer’s caregiving success measure can be. If we measure Alzheimer’s caregiving success by the improvements we see in our Loved Ones’ behaviors, we set ourselves up for failure. Alzheimer’s behaviors always grow more complex over time. Measuring success by capping the number of prescriptions our Loved One takes highlights little more than the minimal effectiveness of available treatments on the market.

What do we do? Give up?  Stop trying?

My caregiving story is that my Mom had Alzheimer’s for fifteen years. My father was Mom’s primary caregiver. I experimented with dozens of roles I could fill to contribute to my parent’s well-being from ninety miles away.  Finally, I stumbled on the role of ‘caregiver-to-the-Caregiver’.  I chose to support my Dad’s well-being, so he could be his very best self in caring for Mom.

Determined to find a way to maintain my positive motivation in this modern and under-recognized caregiving role, I experimented with handfuls of success measures to see what sustained my motivation best. The bonus benefit was that what motivated me best also gave me a fresh perspective on caregiving.

What worked for me was to give myself credit each time I got curious or learned something new. I made it into a game.

Give it a try and see if it gives you a fresh perspective on caregiving.


RULES OF THE GAME

  1. GET CURIOUS

In this game you get credit for doing a good job every time you get curious.

To start, challenge yourself to see things differently. Start by asking interesting questions about everything involved in your caregiving. (Interesting questions often begin with: who, what where or when).  In my case my questions were about my Mom, my Dad, their home, their interactions with me, their decisions, their medical team – everything.

For example,

  • Who is doing all the chores that Mom used to do?
  • Does Dad know how to do laundry?
  • What reasons might Dad have to kick me out of the house at 4 pm?

At this point, give yourself credit for doing a good job because…

  • You’ve followed the rules, or…
  • You’ve avoided extra work by asking questions rather than rolling up your sleeves, or…
  • You’ve put your parent’s needs first, or…
  • You’ve asked important questions that lead you to the truth.
  1. CURIOSITY = GOOD JOB

If your Dad does something as unexpected as to kick you out of the house, you can either give up out of frustration, or consider that there’s likely something more to it.

That’s why the next step in the game is to get curious about what happened. And about the events surrounding it.

For me this lead to more questions…

  • Maybe Dad is stressed about cooking dinner?
  • Maybe there is only enough food for two?
  • Maybe something happens this time of day that I am yet to understand?

Again, at this point in the game, to get credit for doing a good job all you need to do it exercise your curiosity.

  1. LEARNING = GOOD JOB

As you get curious, curiosity opens the door to learning.  Pour your curiosity into an A3 or a pair of Current State / Ideal Future State sketches.  What you create will help you see many things clearly for the first time:

  • Perhaps something does happen around 4 pm.
  • I seem to recall Dr. Noel teaching us about something called sundowning. It happens to people with Alzheimer’s at dusk.  They become agitated. Sometimes they wander.
  • Does Mom wander the house while Dad cooks dinner? Wow – that would stress him out for sure. Is Mom sundowning?
  • Maybe Dad needs ideas for simpler meals to make this time of day easier.
  • It’s been a while since I visited my folks overnight. I’ll ask Dad if I can spend the night. I should bring dinner. I’ll observe.
  • I’ll call Dad today and ask if I can come next week.

Here I learned that:

  • I need more information,
  • It’s time for an overnight visit with Mom and Dad, and…
  • I should bring dinner

Again, in this game, you get credit for doing a good job whenever you learn. For example, when…

  • You’ve created an action-plan that promises to lead to more learning, or…
  • You’ve discovered the right and only course of action through your intense research and questioning, or…
  • You’re being a good daughter/son by prioritizing your parents needs over your own, or…
  • You’ve chosen your own path forward.
  1. GET CURIOUS AGAIN

With an idea to visit Mom and Dad in mind, I now have the chance to get curious again.

  • How stressed is Dad in the morning? Afternoon? Evening?
  • How does Dad’s stress impact the way he cares for Mom?
  • What can I contribute that might make life more peaceful for Mom and Dad?

Give yourself credit for doing a good job whenever you engage your curiosity.

SCORING

Add up your credits.  These credits serve as evidence that whatever direction the health of your Loved One takes, you are in fact doing a good job caregiving. Use these credits to motivate and reward yourself.


SUMMARY

  • The opportunity to care for a Loved One with Alzheimer’s IS A GIFT.
  • IT IS NORMAL to need a fresh perspective during the darkest days of caregiving.
  • The next time you are longing for a fresh perspective, ask yourself what evidence can I use to measure the impact of my caregiving.
  • Give this a game a try. Consider that:
    • Curiosity and learning are skills we have been using since we were born.
    • Curiosity and learning fit into every schedule since they happen while we do other things.
    • Curiosity and learning fit in every budget since they are free.
    • Curiosity and learning can become good habits during and after caregiving.

Curiosity and learning became ways to reward myself with positive affirmation.   After all, usually the only one there to recognize and reward yourself for your caregiving is you. Once I believed I was doing a good job, it gave me more peace, patience and joy with Mom and Dad as I cared for them.  That’s all the evidence I need to use this approach again the next time I need a fresh perspective on caregiving.

Your friend on the journey,

Barbara


Learn more:

Want to ask better questions?  Research based recommendations are found in this Harvard Business Reviews Ideacast  https://hbr.org/ideacast/2018/05/ask-better-questions.html

Want to form a habit?  Download this free .pdf from Charles Duhigg, author of The Power of Habit  https://charlesduhigg.com/want-to-make-a-habit/

Your Caregiver needs to go to school

ALZHEIMER’S, YOUR PARENTS AND THEIR CAREGIVER EDUCATION


“Mom did really well while I was at Caregiver College last night,” Dad says proudly to me into the phone.

“Oh, that’s right,” I reply. “Your first class!  Did Mom go with you?”

“Better than that,” Dad answers. “You remember our friends Kay and Johanna?  Well, they really helped me out.  Kay stayed with Mom at the house, and Jo and I went to class together.”

“And how did Mom do with Kay?”

“She did great.  They played Rummikub, drank coffee, and sang together. Mom and Kay have always gotten along well.”

With a little trepidation, I dig deeper. “And how did class go for you and Jo?”

“There was a lot of information.  A lot of paper,” Dad says, revealing some underlying anxiety.  “Plus I was worried about your Mom.”

“Sounds like it took a lot of effort to concentrate on the class, Dad.”

“Yes. Lucky for me, Jo took all of the handouts home with her.  She is going to summarize them and mail me her notes.  You know, so I remember what I need to do.”

“Dad, you are blessed to have such good friends,” I say. (And I think to myself: so are we.)

Thank you, good Lord, for sending these dear friends to love and support both of my parents.

Often, friends want to help but have yet to know how.  Here’s a suggestion.  Encourage them to help make it possible for your Alzheimer’s Caregiver to attend caregiver education classes.  Caregiver education is critical for the Alzheimer’s Caregiver because this disease affects so many aspects of their Loved One’s life.  Caregiver classes present an opportunity for Caregivers to learn, accept and prepare for a future where their Loved One’s thinking, decision making, memory, emotions, hygiene, physical health, safety and more will be disrupted by this disease.

Can you encourage or enlist your parent’s friends to support the Alzheimer’s Caregiver in your life, as he or she prepares for the Alzheimer’s caregiving journey?