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.

Alzheimer’s and your parents’ home at sunset

ALZHEIMER’S, YOUR PARENTS AND THEIR EVENINGS


“Hon, where are you going?” Dad asks Mom. 

As the afternoon melts into evening, Mom is on her feet.  Minutes ago, she had settled into her chair after a trip to her bedroom to change into a warmer sweatshirt.  Now she’s back on her feet again, trying to steady herself.  She turns toward the sliding door that leads into the dining room.

“Hon?” Dad tries again.

Dismissively, Mom brushes away Dad’s question with her right hand and an unmistakable ‘stay-out-of it’ expression on her face.  She begins her walk.

Ten minutes later, Mom returns to the sunroom, dressed in her light blue track suit.

“You look pretty, Mom,” I tell her.  She walks to her chair, sits down, and picks up her crocheting.

“Guess I’ll start dinner,” Dad says, rising and moving toward the kitchen.  “You stay with your Mom.”

On cue, Mom stands, steadies herself, and turns again toward the sliding door that leads into the dining room. 

Since I’m in charge now, I decide to follow Mom. I keep my distance.  I track her to the bedroom. Peeking in, I see her lay out a pink sweat suit.  I maintain my covert status by ducking back into the hall.  Finally, I hear Mom’s steps moving toward me, so I double-time it back to the sun room.  Mom enters, dressed in her favorite warn pink sweat suit.

“You look pretty, Mom,” I say.  Mom walks to her chair, sits down, and picks up her crocheting.

Exasperated, Mom asks to anyone who will listen: “Is it time for bed yet?”

Minutes later, Mom stands, steadies herself, and turns toward the sliding door that leads into the dining room. 

Has your Alzheimer’s Caregiver mentioned that your Alzheimer’s Loved One gets more restless, confused and unpredictably moody around dinnertime? If so, your Loved One is likely experiencing “Sundowning.”

Imagine the Alzheimer’s Caregiver in your life trying to manage these behaviors while preparing a meal at the same time. Every night.

How can you help? When proximity permits, bring them evening meals or invite them over to share a meal.  Our geographic distance called for another approach.  For years I ordered frozen, pre-made healthy meals and gave them to my parents for Christmas, Mother’s Day and Father’s Day. And I made sure to never call during dinnertime.

How might you support your Caregiver through the challenging phenomenon of Sundowning?

Hobbies change due to Alzheimer’s

ALZHEIMER’S, YOUR PARENTS AND THEIR HOBBIES


“How about I turn on the television for you while Dad and I make dinner?” I ask Mom.  “Maybe there’s a talk show on.”

“No good,” Dad says, poking his head into the sunroom.  “Turn on her music.”

I come to Mom’s defense.  “Come on, Dad. Mom really likes TV. Just this once.”

“Not lately.  Push play on the boom box.”

The intro to “Danny Boy” lilts from the speakers.  Mom’s smile beams. Humming along, she reaches down for her yarn and crochet needle to resume work on another granny square.

I watch in a bit of disbelief. “Dad, when did this happen?”

“Just recently,” he tells me. “Whenever I turn on the TV, she gets up and walks out of the room.  Music makes her happy now.  Just look.”

Mom is rocking back and forth in time to the music, laughing out loud to the song’s lyrical jokes.

In that moment, I pause and say a silent prayer of thanks for the gentle reminder that, even on my best day, I am merely the “Assistant to the Caregiver.” Indeed, the name of this long-running show is Caregiver Knows Best.

Who knows, if I’m smart and persistent, maybe one day I will be promoted to “Advisor to the Caregiver.” But until that day comes, Dad will truly be the resident expert on Mom.

Have you caught yourself stepping in to fill an Alzheimer’s Caregiver role that rightfully belongs to someone else?  Pretty easy to do, right?  How was it received?  If you were in the Caregiver’s shoes, how would you feel?

 

What a stressed caregiver sounds like

ALZHEIMER’S, YOUR PARENTS AND THEIR STRESS

“Give me a break,” Dad snaps.  “Do you think we keep this place a pigsty?” It is now 9pm and Mom has gone to bed. Dad’s been up since 4am.  He’s toast.

“Of course not,” I respond. “I seriously just want to know what you think about Diane coming up to put all your important papers in a fireproof box.”

“And just why would we need Diane to get our papers together? Do you think we are going to lose them or something?” Dad barks back.

Clearly, Diane’s well-intentioned offer has insulted Dad.  I take a deep breath, and then try a new approach.

“Last month, Diane moved her important papers to a fireproof box.  So she thought it would be nice to do the same thing for your papers.”

Dad pauses before replying. “I’ll have to ask your mother.  Anyway, why would she need to come all the way here do such a simple thing? I manage this place on my own just fine, you know.”

“The box is a gift Dad. A present,” I explain.  “And the visit is just because she loves you. It’s just that simple.  We love you, Dad.”

In these moments, I know that Alzheimer’s caregiving leaves Dad sleep-deprived, needing more patience, and yearning for even the smallest hint that the disease might be slowing down.  Still, it surprises me every time he comes back at me.  After all, I’m in touch. I’m trying. I care.

In time, I realize that, as Dad grows his Caregiver skills on this Alzheimer’s journey, I have an opportunity to grow my compassion and forgiveness skills. Plus patience, which has been on my growth list for years. 

We both have our work cut out for us.

Do you find your parent’s Alzheimer’s journey giving you opportunities to grow in surprising ways?  If so, how are you responding to these growth opportunities?

 

Finding a good time to chat with your Caregiver

ALZHEIMER’S, YOUR PARENTS AND THEIR CLOTHING


“Your blue eyes look so pretty when you wear this blouse, Hon.” Dad sweet-talks Mom as I wait on the phone.

“These clothes are fine.” replies Mom

“Honey, it’s laundry day.  Time to give this outfit a bath,” Dad teases.

“I wore this to bed, so it’s already clean.  Just leave me alone,” says Mom.  I hear her footsteps, loud at first, then fading as she walks away.

“Dad? Are you there?,” I ask.

“Oh for goodness sake!,” Dad snaps. “The oatmeal is burning.” I hear the click of the stove dial and the clang of the pot. “Look, I’ve got to go,” Dad says.

“I love you Dad. Talk to you soon.”

“Bye.”

I glance at the notes on my computer screen.  Today I wanted to continue our conversation about visiting the local Adult Day Program with Mom. Three years of notes on just this subject stare back at me on the screen.  Three years of phone calls with the Director, three years of planning.

Clearly, I need to put even more effort into finding a good time to have this conversation with Dad.

Does it require a lot of effort to find the right time for the important discussions you need to have with your Caregiver?  When there are only so many opportunities to be with a Caregiver in person, the list of critical conversations grows. 

The process of elimination helps. During meal preparation, meal time, and meal cleanup remember that your Caregiver is juggling chores and Caregiving, so they are twice as busy.  Try to call afterward.  Perhaps they take walks or naps every day.  Respect that.  Show your support and love for your Caregiver by putting effort into finding a good time for them to have the conversations that need to happen. 

When can your Caregiver be present for a conversation?