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/

Phone support for an Alzheimer’s caregiver parent (Plus/Delta Review)

ALZHEIMER’S, YOU AND YOUR SUPPORT

IMPROVEMENT OPPORTUNITY: BUILDING TRUST

My Dad considered Mom’s Alzheimer’s care to be his duty. To Dad’s credit, he took full command of Mom’s care and served her with honor.

I knew Dad would eventually need to trust others to help him. One countermeasure I tested to build this trust was to encourage Dad to call me for help.

HOW IT WORKED

Back then, Dad was yet to own a smartphone or a computer.  He also had yet to understand how these tools could make his life easier. I invited Dad to call me to ask for help getting things he needed.  He could call when he needed the phone number of the local shop that sharpened lawn mower blades. He could call when he was yet to have the time to go from store to store to shop for replacement vacuum cleaner bags only Mom knew where to find. I’d do the research and call Dad back, always careful to swap the information he requested for updates on Mom, her behaviors and her well-being.

As the strain of caregiving increased, and Dad’s trust that I was there for him grew, he began to call me for other kinds of support.  Dad’s calls took on a new tone. Mom had misplaced her engagement ring that morning and Dad had spent three hours on the hunt.  Mom had wandered away in the middle of cleaning the bathroom sink and now Dad had to finish his chores and hers as well. Dad was exasperated and needed a friendly ear.

As Mom’s Alzheimer’s progressed, and Dad’s trust in me to support him grew, so grew the complexity of the support issues.  How can Mom get an accurate eyeglass prescription when she always tells the Optometrist her vision is fine? Is cataract surgery a good idea for Mom considering that she has Alzheimer’s?

WHAT WENT WELL (Plus)

  • Phone support kept parent/adult-child lines of communication open.
  • Frequent calls kept me in the loop on daily events in my parent’s lives.
  • Gathered valuable intelligence during daily chats that would have been missed with a once-a-week call.
  • Built Dad’s trust that help could be found to meet his caregiving needs.
  • Built Dad’s trust that I could help from 2 hours away.
  • Became an ear-witness (we had yet to have video chat) to Dad’s need for more sleep.
  • Became an ear-witness to Dad’s need for more private time.
  • Kept up-to-date on new evidence that the Alzheimer’s was progressing.

WHAT I’D CHANGE IF I COULD DO IT OVER (Delta)

  • I’d set firm boundaries around the days and times that I could welcome Dad’s calls.
  • I’d provide Dad an emergency plan to follow when he needed support on my off hours. (For example, the phone numbers for The Alzheimer’s Association’s National 24 x 7 hotline (1-800-273-3900); Dad’s local Area Agency on Aging; Dad’s local Department of Social Services.)
  • I’d keep a log of call date / time / topic.
    • Use to identify our knowledge gaps
    • Use to spot trends in calls
    • Use to identify when to bring in outside expertise
  • I’d care for my own emotional and physical health by involving others sooner.

Your friend on the journey,

Barbara

Finding your best during Caregiving

I found Denise Brown and her Caregiving.com community in the fall of 2017.  It was more than three years since my Mom had passed from Alzheimer’s. Sometimes I still needed reassurance that the ways my life had changed were normal. I had read a bit about the National Caregiving Conference and decided to tune in to the Livestream to see what value it might have for us Alzheimer’s Kids. 

The presenters and panelists I saw were all positive survivors. They made me feel accepted. They made me feel normal. I realized I had found my tribe.

This year I’m thrilled to be a presenter myself at that same event.

Recently, NCC18 host Denise Brown led a Virtual Caregiving Summit to give Caregivers a taste of what they can expect at the conference. Denise invited Stephanie Antoine, Karen Laing and me for a late-afternoon virtual cup-of-tea and a chat about finding our best during Caregiving.  Here it is for you to enjoy.

If this was helpful, I invite you to watch the other 2018 Virtual Caregiving Conference videos. All of the interviews are with real Caregivers like you.  Their varied perspectives are likely to resonate with you, and may even spark some fresh ways of thinking.  Watch all the 2018 Virtual Caregiving Conference videos here. 

Mark your calendar for November 9-10, 2018. The Third Annual National Caregiving Conference (NCC18) will be held on those days at the Chicago Marriott O’Hare in Chicago Illinois.  Family caregivers and former family caregivers will share their experiences, insights and solutions. The great news is that the conference is available to both those who can travel to Chicago and those who benefit from attending via Livestream.  The preliminary agenda for the Third Annual National Caregiving Conference can be found here.

 I’ll be presenting Curiosity and Learning: Evidence you are doing a good job caregiving.  Often, Caregiving is a life-long vocation. I’ll be encouraging healthy Caregivers to measure success by what they learn.  I’ll introduce proven Lean Process Improvement principles and tools to make this a simple and rewarding practice. Join me on the COPING track on Saturday, November 10, 2018

I encourage you to check out Caregiving.com. I love the fresh perspectives of those caring for Loved Ones in varying conditions; and the reminder that Caregiver needs are the same even when our Loved One’s diagnosis is different. Caregiving.com was founded by Denise Brown in 1996 to help and support family caregivers.  Caregiving.com is a community of supportive individuals caring for a family member or friend. This community cares for parents, spouses, siblings, grandparents and anyone we consider family. Caregiving.com cares for you before, during and after caregiving.  http://www.caregiving.com

Your Friend on the Journey,

Barbara

 

Yes – Professional Women and Men Need Alzheimer’s Support Groups!

ALZHEIMER’S, YOU AND YOUR SUPPORT


Recently, I had the honor of meeting two fine people who each had been an Alzheimer’s Caregiver to a Loved One. The woman had cared for her husband through Alzheimer’s; the man cared for his wife through Frontotemporal Dementia (FTD). Their stories, their bravery, and their strength reminded me of the sturdy threads of love that link together all Caregiving efforts.

These lovely Caregivers gave me a special gift that day: a special moment of being understood.  A moment where I could share my experiences as an adult child of someone with Alzheimer’s (I call myself an ‘Alzheimer’s Kid’).  A moment when each one of us could nod in agreement that – yes – we had indeed all lived through many similar experiences.

It left me wondering…”Is this what it feels like to be part of a support group?”

You see, somehow, I stumbled through my Mom’s entire Alzheimer’s journey without ever knowing that all family members benefit from participating in an Alzheimer’s Support Group. 

So today, I’m extending the invitation to you.  If you are a Caregiver, or a Caregiver-to-the-Caregiver – call your local chapter of the Alzheimer’s Association (or your local Hospice or your local Assisted Living Facility) and ask for the time and location of an Alzheimer’s Support Group near you. Support Group acceptance helps you be more accepting with your Alzheimer’s Loved One.  Is there a better gift can you give your Loved One than that?

As you look forward to your first meeting, re-read the stories below, and look forward to being part of a community of people who ‘get’ where you are and what you are living through.

Alzheimer’s Kids Can Join Support Groups Too

Support Dad with his support group
 

~Peace,

Barbara

 

Alzheimer’s Kids Can Join Support Groups Too

ALZHEIMER’S, YOU AND YOUR WELL-BEING

Sometimes the way to get a clean look at something is to see it in the rear-view mirror.

It is two-and-a-half years since my Mother’s Alzheimer’s journey reached its end.  At the oddest moment it is like a cog spins and a gumball rolls through the chute and spits out another lesson I wish I had learned during those crazybusyjampackedeverchanging Alzheimer’s years.  

In a recent conversation with a friend, I mentioned that my Dad’s Alzheimer’s Support Group had been a terrific resource to him during Mom’s illness.  It became a place of acceptance and a place of honesty for him.  My friend asked in response, if I had attended a Support Group during my Mother’s Alzheimer’s also. 

 

Only once did the possibility that I actually could join a Support Group cross my mind. It was when Mom was in Hospice.  That day I felt like I had been inside the dryer on an extra long cycle, spun and flipped again and again. My nerves jangled from the incoming news from the mountains.  I reached out to a friend for a support group recommendation.  She shared the name and address of her group, and mentioned that they met monthly.  This month’s meeting had been the night before, so I marked next month on the calendar. 

Within a week, Mom’s journey reached her final destination in heaven.

So with the clarity of hindsight, I now encourage all Alzheimer’s Kids – those serving as the primary Caregiver, as well as those who are in touch with their Caregiver daily, weekly, monthly or quarterly –  to find an Alzheimer’s Support Group and join.  To make it their Alzheimer’s Support Group a priority.  

Why?  Because the people at the Alzheimer’s Support Group are their people now.  These people will understand where they are, and support them where they are going.

Today I’m seeing Alzheimer’s Support groups in the rear-view mirror, from many miles down the road.  From this vantage point, it looks like a candle that may have made my trip brighter, warmer, and more peaceful.