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. 

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? 

Alzheimer’s at Lunch: Jack and Mrs. Spratt

ALZHEIMER’S, YOUR PARENTS AND THEIR DIET


“…And let thy gifts to us be blessed.  Amen.” 

The aroma of a big German hug of bratwurst and sauerkraut welcomes us to lunch.

Dad stands up and slips from the sun room to the kitchen. He has recently taken on host duties.  As he gains experience setting tables, he gets a lot of exercise during meals fetching missing things..

In Dad’s absence, a bowl of coleslaw is passed around the table.  Next, the sauerkraut. Then the salt and vinegar potato chips, Mom’s favorite.  I notice the first round of dishes pass by Dad’s empty plate. As he returns brandishing the brown mustard, I serve him a brat. 

Dad cuts and spears his first bite.  As he brings it to his lips, Mom says, “Please pass the brats, and the coleslaw.”

I lay down my fork and eye Mom’s plate. Yes indeed, it is already empty.  Randy passes the plate of brats to me, and I pass them to Mom.  Mom happily takes another.  Same thing for the coleslaw. I eat a few bites, and ask Dad about his neighbor’s health.

Dad barely gets to the neighbor’s diagnosis, when Mom interrupts his story, “Please pass the sauerkraut.”

I glance over.  Mom’s plate is spotless again.  I pass the sauerkraut.  This time when Mom accepts the bowl, she empties it directly onto her plate.  A quick glance at Dad’s full plate confirms that Mom is far ahead of all of us in lunching speed.

“Please pass the coleslaw,” Mom asks.

Dad passes the bowl and Mom accepts it.  To our surprise, Mom picks up her fork and begins to eat direct from the serving bowl.  When the bowl next meets the tablecloth, it is empty and sparkling clean. I blink my eyes in amazement.

Dad remembers something suddenly.  He jumps up and slips into the kitchen again. Quick as a flash Mom rises from her chair, reaches across the table, and stabs the brat on Dad’s plate.  With a swift and practiced hand, she drops it on her plate. In the time it takes Dad to grab a handful of napkins and return to the table, Mom has eaten every morsel of his entire brat.

Dad returns,  looks at his plate, and then at Mom.  Mom is busy searching the table for something else to eat.  Resigned, Dad picks up his fork and starts in on the remnants of coleslaw, kraut and chips that survive on his plate.

I catch Randy’s eye.  I think we’ve uncovered the secret behind Mom’s weight gain … and Dad’s weight loss.  

Alzheimer’s is a brain disease that is different in every person it touches.  What unusual behaviors has Alzheimer’s brought out in your loved one?   How are you doing in your acceptance that this behavior is simply part of the disease?   How are you handling the reality that behavior changes due to Alzheimer’s are beyond your control?

 

Can clothing choices can impact a Loved One’s health?

ALZHEIMER’S, YOUR PARENTS AND THEIR CLOTHES


Mom walks out of my guest room dressed for Christmas Eve service.  She’s wearing a big smile.  And her favorite red summer dress.  It’s 30 degrees outside.

“Who made this wardrobe choice?” I wonder.  Dad says that Mom chose the dress herself. 

During the service, the church heat kicks on, and the temperature rises to beach conditions. As I fan myself, the congregation stands for prayer.  Suddenly, Mom leans on me.  Heavily.  Then she crumples. Mom? Mom! What is happening?  My heart stops.

As I panic a young man from the congregation rushes over to help.  He’s a paramedic he tells me, and before I know it, he revives Mom.  Mom is perspiring heavily, so the paramedic and I each take an arm and walk her into the narthex.  Together we help Mom out of the linen jacket of her dress.  I search for something else that I can to remove to cool her off.  Then I see the insulated undershirt I gave her four years ago.  Mom is wearing it under her summer dress.  I guess this wardrobe choice was Mom’s, too.

It occurs to me that my Dad has yet to ever dress a woman for Christmas Eve church service.  Even if he had, he is impervious to weather –  cold, heat, rain, snow it is all the same to him..  I remember Dad getting in the car for church when I was a child.  Snow a foot high. Me shivering in the back seat, watching my breath.  Dad wearing just his Sunday suit.  I wonder, does Dad even know that women have different summer and winter wardrobes?  Can he tell the difference between a summer dress and a winter dress?  Has he ever heard of “layering”?

Before bed, I consider what I can do to help.  Maybe I just need to rotate Mom’s clothes twice a year like I do mine.  I can make sure that her closet only has clothes that fit, are in good condition and are the right weight for the season.  This way, whoever makes the wardrobe choices, chances are good Mom will be wearing something seasonally appropriate.

What wardrobe or fashion challenges has your Alzheimer’s Caregiver experienced with your Alzheimer’s Loved One?  What suggestions do you have for helping Alzheimer’s Caregivers make appropriate clothing choices?

Alzheimer’s evidence in a Loved One’s hobby

ALZHEIMER’S, YOUR PARENTS AND THEIR HOBBIES

“As I sorted through Mom’s Granny Squares I noticed something odd,” says my sister Diane.  She has volunteered to see what she can do with the three trash bags full of Granny Squares that Mom crocheted last month.  “Some of the ‘squares’…well, they’re not really square.”

“What do you mean?” I ask, wishing I had inherited even a little of the needlework talent that all went Diane’s way in our generation.

“With a crocheted Granny Square, each side needs to have the same number of stitches, and the same for each corner. That’s what makes it square.  Look, 1, 2, 3…,” Diane leans over me and begins to count stitches on a red square to illustrate, as though I can see what she sees. “See here? Mom has added stitches.  See on this side?  Extra stitches again.  It’s not a square.”

Mom crochets from a Granny square pattern she memorized years ago.  How long has she crocheted Granny Squares from memory?  Twenty years?  Thirty?  Longer? 

“Out of three trash bags of squares, Emma and I really had to hunt for enough square ones to use in her quilt.” Diane continues. “I was going to send the others to Project Linus.  But now…well, now I think they may yet to be good enough.”

“And that’s because…?” I say, still in need of clarity.

“In order to connect the squares, they all have to be symmetrical.  They have to be perfect.  That way they line up and fit together as a quilt.”

“Ok,” I say as my mind jumps from the square to its meaning.  This ‘square’ means that Mom’s memory of the Granny Square pattern is gone.  

 “How many are like this?” I ask.

“One trash bag full,” Diane replies.

“I’ll keep them.  I think they’re funky and interesting,” I say.  “One thing is for sure – Mom put a lot more effort into on any one of these than she ever needed to put in to a symmetrical perfect square. Look at them.  Look at the ingenuity.”

“What will you do with them?” asks Diane.

“I’ll think of something.”

To me Mom’s “squares” have become evidence.  Evidence of the memories that Alzheimer’s has taken.

Is your Alzheimer’s Loved One creating “other-than-perfect” efforts?  Burnt toast?  Unclean ‘fresh’ laundry?   Are you open to see their creations for what they truly are – the best effort of someone with a disease that is destroying their brain and taking their memories?  Try on this perspective and see if it increases your compassion for those living with Alzheimer’s.

 

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?

 

We try to outsmart Alzheimer’s

ALZHEIMER’S, YOUR PARENTS AND THEIR NEW REALITIES


“You’re not going to believe this,” Dad tells me, with a half-smile. “This morning, your Mom hands me the ring and says, ‘I found this on my dresser.’”

Dad and I had hoped that, just once, Mom’s spotty memory would work in our favor. 

I have an idea as to where this is going. “What did you say?” I ask him.

 “I said, ‘That’s your ring, Chris.’”

“And?”

“And she looked me straight in the eye and said, ‘NO. No it’s not.’ Then she stuffed the ring into my hand and walked away.”

“You’re kidding.”

“Nope. Turns out your Mom really can tell the difference between her real wedding ring and the fake.”

I’m taking this all in with a strange blend of curiosity and amusement. “Are you going to give her real ring back?”

“Heck no,” he shoots back. “If Chris has it, it will no doubt end up behind the toilet or in the kitchen sink again. It needs to be safe – safer than that.”

Mom’s wedding ring holds a lot of memories for Dad.  The many times it has been found in unlikely places has moved him to consider ways to take special care with it.  That’s when the idea of a replacement ring came up.

“Anyway, thanks for buying it for me, Barbara.”

“Well, it was worth a try, Dad.”

Was this escapade Dad’s idea or mine?  It hardly matters. It’s like asking if the crazy bit came from Lucy or Ricky – it’s comedy all the same. And I’m Dad’s sidekick in our little slapstick hijinx show. 

What madcap capers have you and your Alzheimer’s Caregiver found yourselves caught up in, all in the name of doing something kind for your Alzheimer’s Loved One? 

Invite visitors two at a time

YOUR PARENTS, THEIR ALZHEIMER’S AND THEIR FRIENDS


“We had a great day yesterday.”

I can literally hear Dad’s smile over the telephone.

 “Kay and Jo came over,” he continued. “Kay visited with Mom.  They laughed and laughed.”

“And Jo?” I ask.

“Jo and I worked in my office, getting the prescription refills figured out.”

This last comment pokes at my curiosity. “What was up with the refills?”

“Oh nothing,” he replies.  “I just have so many bottles of some of these medicines in the closet.  I mean, why on earth would I need three months of Omeprazole at one time?  That’s nuts.  Anyway, Jo talked to the pharmacy and helped me get it all straightened out.”

“Well,” I begin, intending to explain (yet again) the 90-day refill policy used by today’s mail-order pharmacies.  Then I stop myself for a breath.  I remind myself that Dad sounds happy.  Relieved.  Calm.

I change directions. “So is there anything else I can do to help with that?”

“Nope, we’re all set now.  Oh, and best of all, they brought lunch and even left me with some dinners for the week!”

Mom and Dad’s friends are both nurses.  They have a lot of history with my parents, and a lot of experience helping people traverse the Alzheimer’s journey.  This was another chance for me to watch and learn from their expertise.  To witness how two strategic visitors at one time can “divide and conquer,” providing an opportunity for the Alzheimer’s Caregiver to get something else important done.

Have you tried the “two-on-two match-up” approach to create some uniquely powerful support for both your Alzheimer’s Loved One and the Alzheimer’s Caregiver?  If not, who in their life (or yours) could you recruit onto this all-important special team?

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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