Mom’s Heroic Advocate

ALZHEIMER’S, YOUR PARENTS AND THEIR SAFETY

“You need to know what is going on at the Rehab center,” says Gabriela over my speaker phone.  “I know I’m risking my job to tell you this, but I think you really need to know.” Gabriela is the fourth, maybe fifth, Director of the Memory Unit since Mom moved in eleven months ago.

“Thanks for calling,” I say.  “What’s going on?”

What it would take to make the Director of one facility call about the care provided in another, I wonder.

“I went to Rehab to visit Christa this morning.  I arrived at eleven.” Gabriela continues, “Christa was wearing her nightgown. She had yet to be bathed, and her hair had yet to be combed. Her breakfast tray stood in the corner of the room, untouched.  When I asked the male aide if Christa had been fed her breakfast he said that she didn’t ask for help.”  

“They know she needs assistance eating,” I say.  “They know she has yet to be able to ask for help.  After all, I had them mark her chart “Advanced Alzheimer’s”.

“There’s more,” Gabriela continues. “A few minutes later a female aide came in. I asked her to dress Christa.  When the aide opened the closet door, the shelves and hangers were empty and the floor was piled knee-high with dirty clothes.”

“But we signed up for daily laundry service,” I say.

“As I was straightening Christa’s blanket, I noticed her feet.  Barbara, Christa’s heels have big bedsores on them.  No ways she has been doing physical therapy with sores like that on her feet.”

“Dear Lord,” I pray.

Gabriela continues, “I was so outraged, I went straight to the nurse’s station and asked to speak to the Director.  She poked her head from her office and introduced herself.  I asked her to come with me to Christa’s room and she did.   As we walked she explained that she is actually the interim director – on the job for only a week. Since it is the week between Christmas and New Year’s many regular staff members are out for the holiday.”

I try to find my breathe.

“I explained to her that Christa has advanced Alzheimer’s.  That she is yet to be able to tell them what she needs,” Gabriela continues.  “I showed her Christa’s condition – bedsores, unwashed, bedclothes on, clean clothes yet to be available.  Her jaw dropped.  She marched into the hallway, called both the aides, and ordered a fresh breakfast for Christa.”

I force myself to breathe.  Once, then again.  Suddenly I see it in a clear equation.  The Rehab staff are yet to be properly trained on how to work with an Alzheimer’s patient.  They are short staffed during the holidays.  Mom is not receiving physical therapy at the Rehab. Mom is barely being cared for.  Correction: Mom is being neglected.

“Gabriela,” I ask.   “Can your team at the Memory Unit care for Mom in her current condition?”

“Absolutely.”

“Can your team be ready for her to come back today?”

“Absolutely.”

“Please give me the name of the interim director you spoke to,” I ask Gabriela. “Mom is coming home to you today.”

The need for care giving from family members continues, even after an Alzheimer’s Loved One is admitted to the hospital, rehabilitation or other care facility. What is your plan for ongoing care giving of your Alzheimer’s Loved One?  When are frequent visits frequent enough? 

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?

Your parents keep secrets: The Great Cover-Up

ALZHEIMER’S, YOUR PARENTS AND THEIR SECRETS


“The first sign I can remember? It was when Mom got lost driving home from the dentist,” Dad says.

“When was that?” I ask.

“After her first hip replacement.”

My forehead wrinkles as I do the math. “That was…fourteen years ago, Dad.”

“Yes.  That’s right.  She had worked really hard on a beautiful fruit salad, and she was supposed to be delivering it to the church.  But eventually, one of the church ladies called because they were expecting her and she never arrived.”

I am mesmerized.  This is the first time I have heard this story.  Mom is in hospice now, preparing for her journey to heaven.

“So what did you do?”

“Well, I kept an eye out for her.  And when she got home about an hour later, the fruit salad was beside her in the passenger seat.  I asked her what happened, and she told me that she decided to run an errand instead.  But I could see she was shook up.”

That makes two of us.

My mind floods with questions.  Why had I never heard this story before? Had Diane heard it? Had Dad taken action on this red flag to keep Mom safe on the road? To keep others safe on the road? 

A lifetime as his daughter helps me conjure up a quick list of possibilities why we are just now having this conversation:  1) Dad was resisting the truth, as I’ve done so often in recent years; 2) Dad was protecting us kids from what was happening with Mom; 3) Dad was worried about tipping us off and the impact that two meddling daughters would have on their privacy.  Whatever the reason, it all adds up to The Great Cover Up.

Dad is too sad tonight for me to probe any further. 

What can you do to get past your Caregiver’s Cover Up and learn the truth of what’s happening?  And if you never do, how can you learn to forgive yourself…and them?

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.