Should Mom be living alone?

However healthy your Mom is, if she is living alone, she needs to care for herself and her well-being. When you and your Mom disagree about whether this is happening, a neutral third-party tool helps settle the question.

The Lawton Instrumental Activities of Daily Living Scale (ADL) is designed to rate Mom’s ability to:

  • Use the telephone
  • Shop
  • Prepare food
  • Do Housekeeping
  • Do Laundry
  • Obtain transportation
  • Be responsible for own medications
  • Handle finances

The Lawton Instrumental Activities of Daily Living Scale (ADL) gives you clarity around whether Mom needs additional support to get through a normal day.

If you are reading this before Mom experiences a serious health event (such as a stroke or a serious infection) commit to working through this assessment together every six months. This discipline gives you and your Mom the chance to track her changes over time. It also exercises your relationship muscles by starting regular conversations about life-changing and emotionally charged topics before an urgent decision needs to be made.

If you determine that Mom’s abilities are at the point where she needs support in order to live at home, the time has come to discuss next steps.

What considerations factor into Mom’s next living arrangement?

  • What does Mom want?

    Most older adults want to age in place by continuing to live at home. Is this what Mom wants? If so, what supports will Mom need to live a safe, healthy life? Will Mom welcome these resources into her home?

  • Care

    What level of care does Mom need now? How quickly is her condition accelerating?

  • Cost

    What financial resources are needed? Where will they come from?

  • Convenience to friends & family

    Does family intend to visit? If so, will Mom’s new living arrangement be convenient for family visits? Would being located near friends provide more emotional connection than locating near family?

Who gets a vote?

Who gets a vote on Mom’s next living arrangement? How will votes be weighed? Does Mom’s vote count? Do the votes of adult children / family members count? Does anyone else get a vote? If so, who?

Does the vote of the adult child footing the bills count the same as the vote of the adult child providing the most care? Do all adult children get a vote or only the adult children who have been involved in care?

Alternatives

Search engines give the impression that someone living with dementia either lives at home or in a skilled nursing home. In truth, there are a range of care alternatives that may be successful depending on the unique factors of each situation.

 
Contact your local Area Agency on Aging for resources near you.

When Your Parent Won’t Ask for Help

Occasionally, your dementia-caregiver Dad needs a hand.

He always resists asking for it.

Here’s a research-based approach you can use to 1) recruit support for Dad, and 2) follow up to let helpers know they made a difference.

Man driving open convertible with 2 dog
Photo by Tim Mossholder on Unsplash

Why Dad feels vulnerable asking for help

In her book Reinforcements, researcher Heidi Grant finds that we help others because we see ourselves as helpful. When we ask for help (and when we ask the right way) people say yes for their own reasons.
One thing stands in the way. Asking for help means taking a risk.

When Dad says he’s avoid asking for help because it’s easier to do things himself, he’s right.

The “I’ll do it myself” approach helps Dad avoid something called social pain. What Dad is yet to realize is that there are risks that come with a lone wolf approach to Alzheimer’s caregiving, both physical and emotional.

Imagine what a great gift you’d be giving if you stepped in and managed support for him.

How to get the help Dad needs

1. Make Explicit, direct requests for help

2. Be Reasonable

You are likely to find a helper to bring a hot meal on a specific night.

You are less likely to find a helper to bring a hot meal every Thursday night.

3. Take what you get

Maybe your potential helper is available at a different time of day, another week, or alternate month. Perhaps they are better at visiting with your loved-one than preparing meals. Listen. Consider if you can accept what helpers offer.

4. Respect your potential helpers. Know the reasons helpers help.

  • They help because it’s who they are
  • They help because they choose to help
  • They’ve been there
  • They’re there right now
  • They feel the same way

ALWAYS Let the helper know their help was effective

Helpers are most satisfied when they know their help was effective. You make this happen when you communicate with those who helped through thank you texts / emails / calls or snail-mailed notes.

  • Let the helper know the test they drove Mom to was successfully completed on time, and why that was important.
  • Let the helper know how comforting it was to Dad to have a hot meal waiting after a long day at the hospital.
  • Let the helper know that the get-well card campaign she started has lifted your parents’ spirits day after day.

 

To learn to effectively overcome social pain in order to ask for support, read:
Halvorson, H. G. (2018). Reinforcements: How to get people to help you. Boston, MA: Harvard Business Review Press.

The Perfect Thing Blog

I never cared for my mother during her Alzheimer’s. 

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

Still, from the start, I knew there were ways I could contribute.  My challenge was to figure out how to do so, from where I lived ninety-miles away. Having had remarkable results using Lean in my consulting practice, I wondered how I could apply those principles to this situation.
In Lean, processes can be improved when defects and other kinds of excess are identified. I set my mind to contributing in different ways and learning from the resultsSA.

Defects in the contributions I made were easy for my Dad to spot and point out. I overstayed my welcome several afternoons, unaware that Dad was clearing the decks before Mom began sundowning and Dad exploded in anger. I pushed Dad to consider care options that he had yet to believe would benefit Mom and Dad pushed back.

Each time, I improved on the defects that Dad identified, and tried again. Each time, the lessons I learned by identifying and addressing the defects were treasures. I learned that at times my father knew best. I learned that at times I knew best. I learned that Dad needed more patience, more compassion, more forgiveness, and more love during caregiving than I ever imagined. And I learned that at times I needed the same from my husband as he supported me in my unique brand of Caregiving.

The Perfect Thing Blog is for you if you are in a similar place in your life.  If you have a parent diagnosed with Alzheimer’s and a parent who is their Caregiver.  In the blog, I share true stories of my family events during my Mom’s Alzheimer’s. I share my defects and what I learned by identifying and improving on them. I offer questions you can ask yourself to challenge your assumptions.  I share things that improved my family’s journey, or that would have had they been available back then.

In addition to the blog, I also create resources for Alzheimer’s Kids. In my first title, Patterns in Time, you can find answers to questions that come up when a family member is diagnosed with Alzheimer’s: What can I expect?  What might happen next? How can I find help?  What should I look out for? What do terms like respite and sundowning mean in the context of Alzheimer’s?

In my second title, Patterns at Hand, an overview of Alzheimer’s is shared with a spoonful of sugar to help it go down.  In this case, the sweetener is colorful photographs of the granny squares my Mom crocheted during her years with Alzheimer’s. My family’s story threads through it and is gently told in verse. The combination of the two is impactful and I hope memorable.

When Alzheimer’s took my Mom, my life was spared.  Every day I marvel at God’s grace and mercy. Every day I am truly thankful.  I believe that the resources I share in The Perfect Thing blog are Alzheimer’s life-preservers. I believe they might actually help save your life during your Alzheimer’s journey. 

Your Friend on the Journey,

Barbara

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To My Hero, My Dad

Dear Dad,

Thank you for being a loving husbandand and caregiver to Mom throughout her fifteen-year journey with Alzheimer’s. 

Alzheimer’s took Mom through so many changes.  You adapted daily to her ever-changing needs.

You learned to wear so many new hats…

• Daily Wardrobe Stylist
• Manicurist / Pedicurist
• Dental Hygienist
• Cruise Director
• Translator
• Counterintelligence Officer
• Chauffeur & Escort
• Receptionist / Secretary
• Personal Chef
• Maid
• Laundress
• Treasure Hunter
• Physical Therapist
• Bookkeeper
• Personal Shopper
• Strategist
• Innovator…

You mastered so many new skills.  Skills an Army drill instructor and pump-and-tank man may have barely envisioned for himself…

• Preparing meals
• Shopping for groceries
• Answering the phone
• Scheduling doctor appointments
• Paying bills
• Balancing the checkbook
• Dispensing vitamins & medications
• Trimming toenails & fingernails
• Scheduling hairdresser appointments
• Doing laundry
• Sending birthday, anniversary & Christmas cards
• Giving daily baths & supervise hygiene
• Supervising tooth-brushing
• Buying bras and panties…

This growth took strength, loyalty and honor. It was the right thing to do.  Just what I expect from you.

This effort is what love looks like.

I want you to know that I noticed.

Thank you Dad!

Happy Father’s Day to My Hero –  My Dad.

Love always,

Barbara

Patterns

I am programmed for pattern recognition. Something happens more than once, and I notice. I used to believe that everyone is like this. As I live longer, I understand that this is part of my secret sauce – a special gift that God entrusted to me.

My gift of pattern recognition may explain why the experience of my mother’s Alzheimer’s and my father’s Caregiving is such a compelling story for me to tell. 

During our Alzheimer’s journey, curious things would happened once. Then they would spin in my mind in a holding pattern, waiting for a second occurrence.

Emotions veil much. Only now, in sharing the stories from a place – just beyond the urgency of the daily Alzheimer’s walk – am I finally able to recognize patterns from the journey that my emotions of the moment had concealed.

Two patterns I have recognized flavor everything I write.

  1. Alzheimer’s is a family disease because it impacts everyone in the family. 
  2. Alzheimer’s Caregivers and Alzheimer’s Caregiver Kids need to be wrapped in love during their Loved One’s Alzheimer’s journey.

Today, I am proud to share two new collections of patterns I have recognized on this journey.   My prayer – my dream – is that these find their way into the hands of Alzheimer’s Caregivers, adult children of parents with Alzheimer’s in their household (Alzheimer’s Kids) and Caregiver Kids.  That these titles achieve my publishing goal of providing the ideal blend of information, support and compassion for families on an Alzheimer’s journey.

Patterns in Time    

Patterns at Hand

Patterns in Time™ and Patterns at Hand are exclusively available online from the www.ThePerfectThing.info store. 

By publishing and selling these titles independently, I can offer beautiful, custom titles written, illustrated and printed in the United States. 

AND OF COURSE,

Your purchase helps me continue volunteering to find a cure for Alzheimer’s through The CART Fund. #ImCuringAlz #CARTFUND

*For your protection, this website is hosted by Squarespace and secure credit card processing is done through Stripe.  Read more about this in our Purchase Terms & Conditions.

The online store is open. I proudly invite you to shop our first editions today! 

Your Friend on the Journey,

 

Barbara

 

 

 

Mother’s Day Joy

“A-ha!” Mom exclaims as she gives the Mylar smiley-face balloon a poke. Back it floats, as she lets out a triumphant chuckle.

Up he comes again. “Umph!” she says, poking him away.  She shakes her head and grins as Smiley floats back into her reach.

Dad is sitting across from us.  His smile is the biggest I’ve seen in years. 

“Take that!” Mom gives Smiley another playful poke. Her grin erupts into a smile as he returns, as if asking her to keep the game going.

By now, Dad is laughing out loud.  Mom obliges him, and for his amusement she keeps Smiley dancing.

I hand Dad my phone and give him a brief camera lesson.  He fiddles with it, while Mom and I give Smiley a real workout.

Click.

I exhale and smile.  Today, this one time,  I chose the perfect Mother’s Day gift.  Perfect for my Mom.  Perfect for how she is today. Perfect for Mom’s first Mother’s Day in the Memory Cottage.

I find myself feeling thankful for creating this moment of joy for all of us.  I lean in and give Mom a kiss.

Click.

Life with an Alzheimer’s Loved One brings so many moments.  When you are blessed with a great one, try to remember to pause, notice and give thanks.

If you are struggling for a gift idea for your Alzheimer’s Loved One, consider bringing something playful and fun.  A good laugh can work miracles.   Creating Moments of Joy for the Person with Alzheimer’s or Dementia by Jolene Brackey is super resource for ideas.

Get Busy Living…Service Above Self

I guess it comes down to a simple choice:
Get busy living, or get busy dying.

— Andy Dufresne in The Shawshank Redemption

             The year that my Mom turned 75, I was staring down my 50th birthday.  In every free moment, my mind filled with one subject: Alzheimer’s.  Mom has it.  Will I?  Has it started already? When will I start showing signs?  Is there a way to be diagnosed?

              At just the right moment, I was given what turned out to be a life-changing gift.  The President of my Rotary Club had made a commitment that every member of the Board would attend the District Conference in Pawley’s Island, SC that year.   I really should have been at my parent’s house that April weekend, putting away Mom’s wool pants and sweaters, and bringing out her summer blouses.  Instead, I was at the coast, in a blustery storm for the weekend.  Great.

               By Saturday night, the temperature had dipped so low I wore slacks under my gown to the banquet.  After dinner, District Governor Kim Gramling was introduced and stepped to the podium.  She began her introduction of the keynote speaker.  DG Kim introduced the speaker as someone she admired so much that she had invited him to be here tonight four years ago.  The speaker’s topic would be Rotary’s effort to cure Alzheimer’s disease.  And then she introduced Roger Ackerman, the founder of a project called “Coins for Alzheimer’s Research Trust”  or CART.

              Roger Ackerman began with these words:  “My mother-in-law had Alzheimer’s for 18 years, the last five of which she knew none of us.”   Her story inspired Roger and his Rotary Club to set their sights on making an impact in the cure for Alzheimer’s.  Back in 1995, Roger identified the need for seed money to test cutting edge Alzheimer’s research ideas. His club, the Sumter SC Rotary, began collecting pocket change with the goal of one day bestowing a grant for cutting edge Alzheimer’s research.  The first grant of $100,000 was awarded in 1999.  Since then, grants have been made every year.  100% of each donation goes to Alzheimer’s research, and the program is run by volunteer Rotarians.  (Learn all about it at www.cartfund.org )

            During Roger’s talk, my clouds parted.  I could see that rather than dreading my birthday, and feeding my fear, it was time for me to get busy living.  If one Rotarian could ignite such a crucial project – and pay for it with pocket change – I could certainly invite my friends to support CART Alzheimer’s research grants in lieu of birthday gifts. 

           I invested about five weeks in July and August 2013 to put together a benefit for The CART Fund in honor of my Mom.  Makin’ Memories for Alzheimer’s Research was held on August 23, and a private house concert was held on August 24th.  Together they raised $20,000 for Alzheimer’s research grants from The CART Fund.

          I thought this was the happy ending of my Alzheimer’s story. 

         As it turned out, it was just the beginning…

         Grief is a mighty fuel.   The next time you are living with it, I encourage you to direct it to a good purpose.  I began to put my grief-fuel into curing Alzheimer’s disease.  I found that the more I volunteered for CART, the more I learned about Alzheimer’s.  The more I learned, the more I could contribute, and the more I wanted to share the story.  I met the researchers who received the CART grants funded by my birthday donation. I learned what sparked their research. I learned what motivated them.  I shared these things when I visited Rotary clubs, and they inspired individuals and clubs to new levels of support.  On these visits, I met people traveling their own Alzheimer’s journeys.  They shared their stories, I shared mine. And as I shared my stories I saw that they gave others comfort.

           On December 6, 2014, I launched The Perfect Thing  blog website.  As stories from my family’s Alzheimer’s journey came to mind I would share them on the blog.  Even thought I told these stories out of chronological order, people really connected with them.

          Which brings me to February 2017.

          I am very proud to announce that I have authored two publications for families getting through Alzheimer’s in collaboration with artist BO Haynes.  Patterns at Hand & Patterns at Time will be available on March 20, 2017.  

           I invite you to continue to share my journey of supporting Alzheimer’s families and curing Alzheimer’s with me.  My sense is that I’ll be on this road for a long time to come.

           Your Friend on the Journey,

           Barbara

 

You may also enjoy…

Makin’ Memories to Benefit Alzheimer’s Research

 

A MOMENT FROM MY JOURNEY:  Thirteen days after my mother passed,  I was scheduled to tell my story at the D7750 Conference.  Emotionally drained and physically exhausted, it took all the strength I had to stand up and address the 200+ people in attendance. I wore something from my closet – the best this Alzheimer’s Kid could do under the circumstances.  Later that evening,  District Governor Lorraine Angelino called me back to the stage and made me a Paul Harris Fellow.  I treasure that honor.

Some who wander are found

ALZHEIMER’S, YOUR PARENTS AND THEIR BEHAVIORS


“One day, out of the blue, your Mom knocked on our door and asked if we had a cup of coffee!” said Tom and Nancy, just after Mom’s Memorial service.  They were Mom’s neighbors’ four doors down.  “We said yes, and her face lit up.  We had never met before, but your Mom walked right into the house and made a beeline for the kitchen.  After coffee and a chat, she said, ‘Well, I better get home. Buzzy will be looking for me!’  And off she went.  After that, we made sure to keep coffee in the house.  And she came by almost every day for a cup!”

As Tom and Nancy reveled in the memory, only one question kept racing through my mind: “Dad sent her out for a walk…by herself?”

Even with Mom now gone, my heart pounded with anxiety at the idea that she wandered off and ended up inside a stranger’s house.

Protecting Mom from wandering out of the house had been an ongoing project for my sister Diane and me.  We knew that Dad, and only Dad, her daily Caregiver, could keep a “Mom-safety-system” in place.  So we put a great deal of effort into making it easy.  We lobbied for the house doors to be kept locked. Diane got Mom a medic alert bracelet.  I printed out photos for us all to keep on hand for showing emergency workers in case a Mom-hunt was ever necessary. 

It took more than a year before Dad really believed Mom might become lost on their street someday. Slowly, Dad began to enforce the “Mom-safety-system” and lock the doors, and see that she wore her bracelet. 

Has your Caregiver begun living as though it is necessary to help your Alzheimer’s Loved One stay safely at home?  Has your Caregiver begun enforcing a safety system to ensure your Loved One’s safe return in case of wandering when out shopping or at a restaurant? Sharing research and tips is one way to begin the conversation.  Perhaps in time your Caregiver will accept that wandering is common and could happen one day with your Alzheimer’s Loved One. 

For tips from the Alzheimer’s Association on keeping your Alzheimer’s Loved One safely at home, click here.