Are you a Caregiver? Why it matters for you to know

It took me fourteen-years and nine-months to figure out that I was a caregiver. One hurdle was the terminology. To me, the word “caregiver” described my Dad. During Mom’s Alzheimer’s, Dad cared for Mom 24-hours a day, 7-days a week. Using “caregiver’ to describe what I did, well, it just felt wrong. How could the encouragement, love and resources I gave to Dad, measure up to the laundry, meals and baths Dad gave to Mom?

Fourteen-years and nine-months later, I’ve finally accepted that the same word is used to for both Dad’s role and my role. [i] I’ve also realized something more important.

Caregiving is something other than a competition.

What matters in caregiving is 1) that you care and 2) that you give care.

WHY IT MATTERS FOR YOU TO CALL YOURSELF A CAREGIVER

Alzheimer’s caregiving catches almost everyone by surprise. We quickly realize that there is a lot to learn. And that everyone involved has a different perspective about what is best for your loved one with Alzheimer’s.

One thing is for sure. Something happens when you embrace the title of Alzheimer’s caregiver. Doors begin to open. You notice things you’ve yet to notice before. Announcements for events, advertisements for support groups, and registrations for caregiver classes. They seem to almost jump out and call your name. This is because your brain now sees these as pertaining to you. You type ‘Alzheimer’s family caregiver’ or ‘family caregiver support [state]’ into BING, and your odds of finding relevant resources improve dramatically.

Even more doors open when you attend events for ‘Alzheimer’s Caregivers’ in person.  Doors to resources that help with the emotions of Alzheimer’s caregiving. Doors to services you can test out to see if they might help.  Doors to resources that provide breaks from caregiving.

Whether these sound valuable today is of little consequence. They will be valuable someday.

WHEN ONLY A SPOUSE OR LEGAL GUARDIAN WILL DO

Of course, there are situations when only the caregiver who is the legal spouse or guardian will do. In healthcare decisions, durable power of attorney decisions, matters around guardianship of property, financial matters and others. Your attorney and advisors will alert you.

WHEN ANY CAREGIVER WILL DO

Know this: In over fifteen years of my mother’s Alzheimer’s, the occasions that required Mom’s spouse or legal guardian totaled up to a maximum of maybe 36 hours.

Every other minute of every day, if Mom could have defined what she needed in a caregiver, it would have been something like this:

Wanted: A well-rested, patient, alert, informed, cheerful person-to-treat-me-with-love.

Remember:

Everything you do to be this person counts as caregiving.

Everything you do to help the primary caregiver be this person counts as caregiving.

DRAW YOUR CURRENT STATE

To prove to yourself once and for all that you are a caregiver, try drawing a picture of your life right now.  This your current state. Get detailed. Get messy. Have fun.

Put your drawing aside for a day or two. The next time you pick it up, imagine someone else drew it. Try to see the drawing with fresh eyes. From what you see, would you say you are looking at the life of a caregiver?

If your answer is yes, start thinking of yourself as an Alzheimer’s Caregiver now. Someday you’ll agree it made all the difference.


Related Articles:

What your caregiver really wants from you

https://www.theperfectthing.info/2018/05/30/2017-5-31-what-you-caregiver-really-wants-from-you/

Phone support for an Alzheimer’s caregiver parent (Plus/Delta Review) https://www.theperfectthing.info/2018/07/26/phone-support-for-an-alzheimers-caregiver-parent-plus-delta-review/

What 24 hours in your parents’ home can teach you

https://www.theperfectthing.info/2018/07/05/2018-7-5-what-24-hours-in-your-parents-home-can-teach-you/


[i] Denise Brown identifies six different stages of caregiving. Learn about each in Denise’s book: The Caregiving Years, Six Stages to a Meaningful Journey. Available at: https://www.caregiving.com/store/#!/The-Caregiving-Years-Six-Stages-to-a-Meaningful-Journey/p/110722781/category=29969901 and on https://www.caregiving.com

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/