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? 

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?