An Alzheimer’s Love Letter I wish I had sent to my Dad

If I’d have known then what I know now, I’d have sent this Alzheimer’s Love Letter to my Dad.

 

Dear Dad,

Thank you for sharing the news that Mom has been diagnosed with Alzheimer’s. This means that today Mom is the best she will ever be. We should enjoy every moment we have together.
We also need to prepare for what is ahead.

While Alzheimer’s is different in each person, there are common patterns that families with a Loved One with Alzheimer’s share.

Since we would all like Mom to live at home as long as possible, it means that every member of the family will need to lend a hand in Mom’s care. And we will need a lot of outside help too.

The scariest thing I’ve heard is that Alzheimer’s Caregivers usually pass before their Loved One with the disease. The strain of caregiving coupled with normal aging is significant. Given your excellent health today, I agree this sounds unlikely to happen to us.  Yet I’ve heard from adult children who’ve seen their parents go through it. They say that Alzheimer’s care-needs are like an avalanche leaving the Caregiver buried at the bottom.

Research shows that whatever the caregiver’s plan is at the beginning, at some point during Alzheimer’s, an adult daughter or daughter-in-law shoulders some caregiving duties. I know you plan to care for Mom to the end by yourself.  What I’m saying is that since adult children often end up providing care, I want you to keep me in the loop from the start.

Please share Mom’s behaviors as they change.  Keep me in the loop as you take on new chores.  Different from hearing it as complaining, I promise to hear it as an honest barometer of the progress of Mom’s Alzheimer’s.

Let’s start with little steps.  I need to have complete medical histories for you and Mom, and the names and addresses of your doctors.  I need you to sign HIPPA releases allowing me access to your medical records.

Something else I’ve learned.  This is a biggie.  I’ve been advised that since I live two-hours from you, it’s going to be easy for me to be in denial about Mom’s condition. Apparently, the less I see Mom, the less in-tune I’ll be with the progression of her disease.  It will be very easy for me to imagine that the disease is yet to progress.  Especially if I hear very little from you.
Help me make career and life choices for the next decade with complete and current information about you and Mom.

This carries a real risk. If I’m in denial, I may do something counterproductive.  I may take on a work role that requires more time in the office, or more travel time away from you.  I may say yes to an overseas assignment. Each and every one of these times, I need to remember that in the decade to come, I’ll appreciate every aspect of my life that makes me available to you. My flexible schedule. Money in the bank. My work benefits.

Consider the alternative. I could wait for a crisis, then jump in with both feet.  At that point my learning curve will be so steep it will be like the anvil that falls on Wyle E. Coyote’s head in the old Road Runner cartoons.  I’ll be laying on the ground, with stars and bird spinning over my head just when you are most ready to accept my help.

There is one goal we can both aim for.  If you and I do this right, you can survive Mom’s Alzheimer’s.   That’s what I want. I hope it’s what you want too.

Can you support me in these?

Other big picture things we need to address:

  • Updating your wills
  • Putting a Health-care Power of Attorney in place for you both
  • Reviewing your Long-Term-Care Insurance coverage

Next week, we can start talking about you two living closer to me.

I love you Dad,

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

 

Accepting an Alzheimer’s-friendly holiday

ALZHEIMER’S, YOUR PARENTS AND NEW REALITIES


Will Dad ever concede? 

These days Dad is a sapling in an ice storm, twig-thin and stooped under his burdens.  Meanwhile, Alzheimer’s has appropriated Mom’s remaining joys.  

For five grueling days at Thanksgiving, Mom’s adult day program closes for the holidays.  On our call,  Dad sounds close to surrender.

To clear his head, Dad takes Mom for a walk in the backyard.  Mom trips, falls and sprains her knee.   The strain of loading a confused and hurting Mom into the car, coaxing her through a medical exam, and pleading with her to wear the knee brace is like a garden hose to the face.

Dad begins Mom’s application to a Memory Unit.  

A true romantic, Dad schedules Mom’s admission for January 15th, imagining a final family Christmas.  The dream passes quickly, and Dad awakens to the truth:  This Christmas is unique from all Christmases past.

Mom, to her credit, has done everything she can to help us see what suits her Christmas celebration best, given her advancing Alzheimer’s.  Mom wants to be home. Mom prefers quiet.  Mom’s is calmest in her routine.

After so many years of resistance, Dad surrenders.  We plan Christmas around what is best for Mom.   Dad decides they will stay at their home, in NC.  House guests being more than either can manage, Dad confides that my company, in small doses only, would be welcome.  Randy and I tally our hotel points and book a room nearby.      

Dad insists that the grandchildren enjoy Christmas at their own house ninety miles away.  My sister Diane invites my husband’s parents to join them.

And like that, the Acceptance Christmas plans are settled.

Up the mountain in NC with my parents, we take a fresh approach to Christmas. Dad, Randy and I calibrate all Christmas activities to Mom.  Christmas eve at home.  A duet of carols, my part with words, Mom’s part a hum.

It is a very merry Christmas.  Calm and bright. 

Medication Management: Who’s Dosing Who?

ALZHEIMER’S, YOUR PARENTS AND THEIR MEDICINE


“Chris, can you get down our vitamins?,” Dad directs Mom after breakfast.

I take a step toward Mom. “Let me help,” I offer.

“No, no. That’s your mother’s job.  Right, Chris?”

“Yep,” says Mom.

“That’s right. Every day after breakfast and lunch, your Mom gets down the basket with the vitamins.  While I do the dishes, she puts her vitamins in this cup and mine in that cup.”

“And what about Mom’s medications?”

“She does those, too,” declares Dad, with obvious pride in his orderly division of responsibilities.

We move on to other topics. But on the drive home later, something is nagging at me.

How can Mom still be managing her own medications? And Dad’s, too? During a recent dinner in her favorite restaurant, I had to go searching for Mom after an unexpectedly long trip to the Ladies’ Room, and found her wandering out the front door into the parking lot. And a couple days ago, I learned that someone in Mom’s choir has to help her follow the liturgy in the hymnal. 

This mounting body of evidence does not suggest someone who should be in charge of her own medications, much less those of her Caregiver-In-Chief.

How am I going to have this conversation with Dad?  How do I show him what things look like through my eyes?  How do I help him see how Mom is changing?  How his own life is changing?

Since Alzheimer’s affects each person differently, changes in the Alzheimer’s Loved One can elude even the most dedicated Caregiver.  And guess whose job it will be to step up and bring them to the attention of your Alzheimer’s Caregiver?

Now is the time to prepare yourself for this.  If your family is the “friendly small-talk” type, how can you initiate some shifts that allow you to begin freely discussing important matters?  Give Crucial Conversations a read; the skills you learn from this classic book will come in handy in many ways along your Alzheimer’s journey.

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Walkin’ After Midnight

ALZHEIMER’S, YOUR PARENTS AND WANDERING


“Can I help you find something?” my husband Randy asks Mom as she comes out of our guest room and starts down the dark hall.

The clock on the wall reads 12:14 AM. Mom shuffles on straight ahead.

Randy rises from the couch and calls again to Mom across the kitchen. “Chris? Do you need something?”

Mom continues on her way.

Randy dashes through the living room to intercept her. He meets her at the front door.

Mom’s eyes are wide, frightened, lost.  She tries the doorknob.

“Chris, your room is this way,” Randy says, gently redirecting her back toward the guest room. And back she goes.

The next morning, we query Dad about Mom’s wandering. His response?  Mom has yet to ever wander.  So we present last night’s evidence to Dad: Dad’s sound sleep; Randy’s eyewitness testimony; Mom testing the door knob.  But the facts fall on deaf ears. Dad dismisses the evidence as circumstantial.

Case dismissed.

Sophocles wrote in Antigone, “No one loves the messenger who brings bad news.” This is as true today as it was then. 

How are you managing your role as the bearer of unwelcome news?  For Alzheimer’s Kids who are also people-pleasers (like me), this can require triple measures of effort.  What effect is this role having on your relationship with the Alzheimer’s Caregiver in your life?

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.