Surviving Alzheimer Together – The #1 Cure for Sibling Joy & Peace

 

Siblings are the easiest people in the world to resent.

“You always were Mom’s favorite.”

“Dad’s never bought ME a car.”

“You’ve been living off Mom and Dad for years.”

Sadly, the older we get, the deeper resentment can grow.

 

A parent’s Alzheimer’s diagnosis adds strain to every sibling relationship.

“I’m helping out at Mom & Dad’s every day.”

“I’ve funded their mortgage for years.”

“I manage all their bills and checkbooks.”

My life experience has taught me the value of using Alzheimer’s as the opportunity to improve cooperation and communication among you and your siblings.  You see, Alzheimer’s is a make-or-break family experience. Get through Alzheimer’s with a ‘me vs. you guys’ mindset and the divisive wedge of sibling resentment is pounded deeper. (Think decades of likely future estrangement.) Get through Alzheimer’s by prioritizing working together and you will lighten parents’ load plus you’ll enjoy at least 7 kinds of support and peace from your siblings. Take these for example:

1. A sibling is your first responder.

Who does the care partner call when Mom refuses to dress? Or when she burns a pot on the stove or needs a ride to the doctor?  Usually a sibling or family member, often the one who lives nearest, serves as the family’s first responder.  It’s common for siblings and their partners to assume they are aware of all the times the local family member is dispatched. In truth they only hear about the five alarm fires. Like fire-fighters who hand out carbon monoxide and smoke detectors, first-responder siblings triage hundreds of safety situations that go unmentioned. They assess situations like: who is best to drive to today’s doctor appointment? Who actually ate lunch? And when were the sheets were last changed? Show appreciation and respect to your first responder. The recognition you give them will strengthen your relationship and provide the extra dose of joy they need to bear up under first-responder stress.

To understand how siblings contribute to caregiving while living at a distance, read: Are You a Caregiver? Why it matters for you to know .

2. A sibling is an eyewitness to your past.

“Memory…is the diary we all carry about with us.” Oscar Wilde

What would it be like to see someone change right before your very eyes? With Alzheimer’s, a person can look the same on the outside while inside they are transforming into a completely different person . A coffee-addicts quits cold turkey; an introvert becomes an extrovert; a minister begins to swear freely; a peaceful person becomes violent.

There will be times when you will want to remember your Mom the way she was when she raised you. Surviving Alzheimer’s together with your siblings connects you with others who are experts on your Mom. Even memories of the most imperfect mother, and the way she was, will bring you joy and peace when shared with your siblings.

3. A sibling is a comfort to you in your grief.

“… [Mom’s] personality has changed ever so much, and it is a process of change for me as a daughter. And unlike other illnesses, that change means loss - a lot of the time - and loss means grief. So, if I’m looking at it in the negative way, it’s a lot of grief over and over and over again, which is the hard part of this.” Sarah Mitchell, daughter of Wendy Mitchell, NY Times Best Selling Author of “Someone I Used to Know” on BBC Sounds podcast, April 2, 2019  

Alzheimer’s is a subtraction disease. It takes small parts of our loved-one away bit by bit. As Mom’s abilities, hobbies and preferences diminish Mom eventually gets better at accepting the change. We on the other hand seem to get worse. Maybe it’s because we are the ones who need to adapt to her losses. We long for the good old days when Mom weeded the flower garden with Old-Testament vengeance and ruled the house with a wooden spoon. We miss our Mom. We grieve the loss of the house-blend that made Mom so uniquely Mom. Because we are human, we grieve. Grief over Mom’s losses is normal. Grief will continue for as long as Mom lives with Alzheimer’s (and likely beyond). Sharing your grief with siblings can offer peace and solace for all of you.

4. A sibling can give you a firm reality check.

“Doctor, my eyes/ Tell me what you see. / I hear their cries. Just say if it’s too late for me.” – Jackson Browne

During Alzheimer’s your loved one is guaranteed to say or do things you find unbelievable. Next thing you know their care-partner will join in doing it too. What’s on earth is going on?

Changes in the Alzheimer’s brain are changing their reality. The good news is that often their ‘unusual’ behavior can be a sign that they are appropriately adapting to their new realities.

Now take a look at yourself in the mirror. How are you adapting to these changes? Somehow by standing still, you’re now the one out of step.

A great way to find peace in these moments is to talk them over with a sibling. In this case your sibling (even one on the opposite end of the political spectrum) may be the only one who can give you the reality check you really need. They can confirm that yes, in fact, this is a new behavior (rather than something you missed seeing all these years).  And reassure you that yes you can (and must) pay closer attention to your parents than you have been.

5. A sibling can help you know when to stop fixing and start accepting.

“If there's a single lesson that life teaches us, it's that wishing doesn't make it so.” ― Lev Grossman.

After your reality check, a natural response is to try to fix everything. To de-clutter the house. To organize the medications, to move Mom and Dad somewhere safer, and on, and on. These can be sound impulses, especially when put in place in concert with your siblings.

There will come a day when all the busyness and change become the problem. Your care partner is too frazzled to put your plans into action. Your loved one is less able than you realize. Alzheimer’s is at least 3 steps ahead of you.

This is when a sibling can give you the wake up call you need. A sibling can help you realize that the only positive way forward is to work on your own acceptance. To accept that your fixes are agitating and frightening for your loved one. That your fixes are exhausting for your carer. This is the time when you need to accept that entering your loved ones’ new world is the perfect gift to give them.

6. A sibling relationship creates opportunities to be merciful.

“The quality of mercy is not strain’d,
It droppeth as the gentle rain from heaven
Upon the place beneath. It is twice blest:
It blesseth him that gives and him that takes.”

The Merchant of Venice by William Shakespeare, Act 4, Scene 1 

When your sibling deserves anger, punishment, or retribution and you choose not to give them what they deserve, you are exercising mercy.  Mercy is a gift to you both. Mercy is a gift you will feel great giving, because it will free you from your resentment. And it’s a gift that feels great to receive because it is an undeserved surprise and also reminds us to return the gift of mercy.

7. A sibling is a travel companion on the long Alzheimer’s road.

“When you go out into the world, watch out for traffic, hold hands, and stick together.”
- Robert Fulghum

True, even when your sister has cooties.

CONCLUSION

Siblings can be compassionate support resources for parents  – (and for each other) during Alzheimer’s.

Sustaining each other brings you, your siblings and your care partner safely over the Alzheimer’s finish line. The healthier, stronger connections gained are a gift that helps us better appreciate the imperfect people we love.

RECOMMENDATION

Every effort you make to get you and your siblings on the same page during a loved one’s Alzheimer’s is valuable. Many siblings navigate the relationship and well-being changes related to Alzheimer’s on their own. Other siblings find it helpful to have a neutral third-party facilitate discussion and learning. They find a third-party gets them on the same page at a faster rate with stronger, lasting results.

The Perfect Thing now offers a solution for these siblings. Siblings Surviving Alzheimer’s brings siblings together to learn about Alzheimer’s and its impact on families. Sessions provide answers to your hows and whys, include facilitated discussions to strengthen sibling respect, collaboration and connection. This is your opportunity to work directly with Barbara Ivey, an expert who has been in your shoes.

Sessions are available on evenings and weekends. Online meetings make it possible for siblings who live in different towns or time zones to participate easily. Perfect for the closest of families or families who are physically or emotionally distant. For more details, and to book your first appointment, see Siblings Surviving Alzheimer’s.

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

 

Alzheimer’s, family relationships and Caregiver survival

ALZHEIMER’S, YOU AND YOUR FAMILY RELATIONSHIPS


By the time you’ve found this post, you’ve probably learned a thing or two about Alzheimer’s. You probably know that today – in March 2018 – there is no way to stop, slow or reverse this disease. Perhaps you’ve read a few terrifying statistics.  You’ve probably already seen enough photos of frail, gray-haired people to last a lifetime. If your heart is pounding and your palms are sweating, you are in good company.

Alzheimer’s is a tough diagnosis to hear.  It requires effort to accept. While Alzheimer’s is busy degenerating the brain of one family member, caring for that person chips away at the physical and mental well-being of other family members. 

I had a Mom with Alzheimer’s and a Dad who was her Caregiver. Through our fifteen-year journey, I learned first-hand that we children will be involved in our parent’s Alzheimer’s.  Our choice is whether to raise our hands to volunteer or wait to be conscripted.

I’m here to prepare (adult) children for family-life with a parent with Alzheimer’s. What good is preparing?  Preparation gets you ready to respond to the daily surprises that come with Alzheimer’s.

What kind of surprises are on the way?  Here’s one that flipped my thinking around for good.  I realized that my Mom’s Alzheimer’s diagnosis actually meant that two (2) family members needed extra care:  my Mom AND my Dad (Mom’s Caregiver). 

How serious is the Caregiver’s need for care?  Research shows that the Caregiver usually dies before the person with Alzheimer’s. So, pretty serious.

If you’d like to give your Caregiver a chance to survive Alzheimer’s, you’ve come to right place. I’m sharing what I’ve learned from fifteen years of trial-and-error. How about we move forward together?

If you’re curious about what Alzheimer’s might bring in the next decade of your life, watch this short (less-than-6-minute) interview. Guess which of us is more nervous talking about Alzheimer’s. Maybe we have something in common with you?

Your Friend on the Journey,

Barbara



PATTERNS IN TIME Order today

  • 10 year timeline
  • Changes in caregiving
  • Resources that helped
  • How out-of-town children can help

 

Next for you

Adult children need support through Alzheimer’s too


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How my birthday party raised $20K for Alzheimer’s Research and changed my life

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 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 that The Perfect Thing has matured.  Our first two publications for families getting through Alzheimer’s will be available in March 2017:  Patterns at Hand & Patterns at Time

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 Ivey

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.