Handle your Caregiver with Care

ALZHEIMER’S, YOUR PARENTS AND THEIR STRESS


We’ve all been there. That moment you strike up a conversation, and the other person seems to explode in anger all over you. Maybe it’s their boss, or their spouse, or the guy that just cut them off in traffic. Whatever fired them up is history.  The present is that you showed up in time for the explosion.  Usually, once it’s over, there’s a moment between the two of you.  A shrug acknowledging the mutual understanding that you were the undeserving recipient of emotions triggered by someone or something else.

During my Mom’s Alzheimer’s, I stumbled into this situation again and again.  As my Mom’s Caregiver, Dad wisely refrained from unloading his frustration, his worry, his sadness or his stress onto Mom or onto his friends.  So the first person to call (often me) to innocently check in – perhaps to ask if he had found the time to visit the Adult Day Program – would be rewarded with the explosion. When I hung up I’d be numb. And also full of questions.  What the heck just happened?  What did I do to deserve that?  What is so terrible about visiting the Adult Day Program that it would make Dad respond like this?

In hindsight I see these calls were versions of the old familiar experience. Except, with one difference.  In the Alzheimer’s setting, the satisfactory moment of mutual understanding has yet to ever come.

This week I have been poring over the results of a very recent survey conducted by the Alzheimer’s Association. Survey results are as mouth-watering as dark chocolate to a lifelong researcher like me.  Hungrily, I dug into this study, conducted on-line this April 2017. Among the respondents were 252 people who had previously given care to someone with Alzheimer’s and 250 people currently giving care to someone with Alzheimer’s.

In the survey respondents were asked to put into words their feelings about caregiving. The mixed bag of emotions they identified has given me new insight into the emotional explosions I used to get from Dad on our calls. 

Current and former Caregivers reported a complex blend of emotions.  On the one hand, they report that caregiving made them feel helpful, productive, strong, supported, confident.  On the other, they report that caregiving made them feel worried, sad, stressed / overwhelmed.  43% report they frequently feel guilty.

 Caregiving brings a range of emotions.  Always handle your Caregiver with extra care.
Caregiving brings a range of emotions.  Always handle your Caregiver with extra care.

So now, let’s revisit my phone call to Dad, where I ask if he has found an opportunity to visit the Adult Day Program, and try to imagine what emotions my questions triggered in him.

Maybe the thought of this visit made Dad feel sad.  Maybe he had convinced himself that Mom would always be too sharp to fit in with the others at the Adult Day program. Maybe Dad was feeling under-appreciated for all the things he has done to care for Mom already this week.. Maybe Dad felt overwhelmed by the list of household chores waiting for him today.

Stir together the emotions of sadness, under-appreciation and overwhelm, and you get a powder keg. And right then, on cue, the phone rings…and it is me.

One small, life-changing thing you can do, is to hold a picture in your mind of your Caregiver beside a “Handle with Care” sign. This way you always remember the emotions brewing in the Caregiver on the other end of the phone, and treat your Caregiver with care.

Peace,

Barbara

 

Review results of the “Alzheimer’s & Brain Awareness Month 2017, Alzheimer’s Association Survey” here.

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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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?

Alzheimer’s and dental health – Dad looks for the root cause

ALZHEIMER’S, YOUR PARENTS AND THEIR DENTAL HEALTH


“Your Mom is definitely going to need two new crowns. And we’ll need to scrape her gums again in a month or so.” I am here today, at Dad’s request, to get answers to the questions he has yet to be able to ask Mom’s dentist.

“What’s causing Mom to need so much recurring dental work?” I ask.

“It’s the plaque,” the Dentist says.

“Plaque?  What plaque?”

“See?” he says, showing me Mom’s gums. “Due to poor brushing.”

Dad goes pale for a moment.  As a genuine, grade-A, dental hygiene advocate, Dad brushes his teeth three or four times a day.  And he tells Mom to brush her teeth three or four times a day too.  He even bought her an electric toothbrush and a timer to help her keep brushing long enough for all her teeth to be clean.

A prior conversation with the doctor at MemoryCare comes to mind. Dad had voiced concern that Mom had yet to help him clean the bathroom sink anymore. 

“Dad, remember the Memory Care Doctor said Mom probably forgets what she’s doing in the middle of the chore?  Mom wants to help…it’s remembering the steps and the sequence of the steps that’s the challenge.   Could it be the same thing with brushing her teeth?”

Dad is silent.  In time, I say out loud what we’re both thinking:

“From now on, Mom is going to need you to keep her focused while she brushes.”

Dad sums it up. “So now I am a tooth-brushing monitor.”

Have you thought about the impact on your Alzheimer’s Caregiver of becoming a hands-on care provider? What would it be like to get involved with a mate’s “activities of daily living” like brushing teeth?  Has your Alzheimer’s Caregiver shared any stories with you of moving from helpmate role to caretaker role?  Consider ways you can help your Caregiver cross a milestone like this, and move forward with acceptance.  Is there a space for joy and humor in it all?