When Mom Kemper died, our world changed drastically and quickly.  While planning the funeral, we also had to find a memory care facility with an immediate opening where we could transfer Dad.  We had to tend to out-of-town guests, empty Mom and Dad’s apartment, prepare a new place for Dad, and deal with some of health issues.  Since the weather was cold, we postponed having an interment ceremony until warmer weather came.

But once summer came a variety of other life issues needed tending and again the interment was postponed.  We finally got everyone together and scheduled a date to have Mom’s ashes placed at Fort Custer National Cemetery in Battle Creek.  Mike’s sister came to town from out of state, and Mom’s brother and his wife met us at the cemetery.

When we had started out from Grand Rapids, it had been overcast and cool.  But as we sat in the shelter while the deacon spoke words of comfort, the sun was out and it was a lovely autumn day.  A good day to remember Mom and I was thankful for that small blessing.

Of course, Dad had no idea what was happening.  As Mike drove, I sat with him in the back seat and he’d ask me where Donna was (that would be me), where were we going, where’s Mom, what were we doing, and some other questions that didn’t make sense.  I kept distracting him by pointing out the changing colors of the trees which he really didn’t engage with.  But he was really interested in any truck dealerships or RV dealerships we passed.  When I spotted one, I’d point it out and exclaim, “Wow, Dad!  Look at all those trucks!” and that would help for about a minute or two before he started wondering what was happening.

After our time at the cemetery we had a late lunch together and by the time we were finished it was getting to be about four in the afternoon. Dad was beginning to go deeper into his confused state.  A couple evenings before we’d had an episode of sundowners syndrome and it looked like we’d be having another.  Sundowning is a state of confusion and agitation that occurs in the late afternoon into the night with dementia patients.  We’d had a very busy week and it was taking a toll on Dad.  We did our best to get him home and settled.

All the traveling is done now, the visitors are gone, and Dad is getting back to his regular schedule.  But he still asks me where Mom is.

If you want to know more about sundowners syndrome there’s a helpful description of it on Mayo Clinic’s website.  You can find it here:  http://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-answers/sundowning/faq-20058511

It’s 5:30 a.m. and the phone is ringing again.  Mike is so exhausted he doesn’t hear this time and I don’t hear his sister stirring, either.  This is an answer to prayer because I want them to be able to rest.  I get up to take the early morning shift.

I’m not quick enough and the answering machine is getting it, but I’m not concerned.  It will ring again and as I reach the bottom of the stairs, it starts.  I’m thankful he’s forgotten about the cell phones.  Mike’s is in the bedroom and it’s jolted him awake several times already.

“Hello?” I answer.

“Uh, well…uh, is this Mike?”

“No, Dad.  It’s Donna.”

“Can I talk to Mike?”

“No, Dad.  It’s 5:30 and he’s in bed.  He needs to sleep and I’m not waking him up.”

“Oh.  Uh.  Well, do you have a minute?”

“Yes, Dad,” and I sit on the stairs.  It will be a while.

“I’m completely bewildered.  I can’t find Anne.”

“No, Dad.  She died.”

“Who died.”

“Mom died.”

“My mother?”

“No, Mike’s mother.  Anne.  Your Anne has died.”

“My mother, Anne?”

“No, Dad.  Your wife.”  His mother’s name was not Anne.

“My wife?”

“Yes.”

“How did that happen.”

“Her lungs wore out, Dad.”

“Where was I?”

“You were holding her hand.”

“Here in the house?”

“Yes, Dad, the apartment.  You were holding her hand, I was reading the psalms to her, and Mike was stroking her hair.”

“Did she suffer?”

“No, Dad.  It was peaceful.”

“Why can’t I remember?”

“Your memory has been bad for a few years, now.”  He will accept this from me.  He called Mike a liar last night.

“I can’t remember any of this.” 

“I know.”

“Is Mother with you?”

“No, Dad.  She died.”

“Was there a funeral?”

“No, Dad.  It will be Friday.”

“What day is today?”

“It’s Wednesday.”

“What should I do?”

“Go back to bed, Dad.”

“I found a note here.  Did something happen?”

“Mom’s gone, Dad.”

“I have to go get her.”

“You can’t, Dad.  She’s died.  We’ll have a private viewing today.  Your daughter came to town yesterday and spent the day with you and we’re going to go see Mom one last time.”

“When?”

“At 11 o’clock.”

“Will I go?”

“Yes, Dad.  We’ll come get you.”

“Has there been a funeral?”

“Not yet.”

“Has something happened?”

And on it goes for another five minutes or so.  Suddenly he’s done and hangs up.  

I go to make a cup of coffee and clean up the kitchen a bit.  

The phone rings. ​

The other evening, my husband and I were driving together.  It’s rare these days to have a moment of privacy so I took the opportunity to ask him how he was doing.  At first he gave me the standard, “Fine” answer but I dug deeper.  With all that’s coming at us with Mom in rehab and trying to keep Dad safe on his own, work and the daily situations of life like car repair, I wanted to know what was really on his heart.

“No,” I said.  “How are you really doing?  How are you handling all that’s coming at you right now?”

He looked ahead and sighed.  “I feel as if I’m watching a train wreck in slow motion and there’s nothing I can do to stop it,” he said.

Tears welled up in my eyes and I reached over for his hand.  There was nothing I could say.  It was an apt description of watching a parent succumb to Alzheimer’s.

Meanwhile, across town, a friend of mine was coming home after being at the hospital all day with her mother.  She was exhausted, developing a sore throat and deeply discouraged.  Her mother had driven into a tree in the parking lot of her apartment complex.  She had a broken nose, the front end of the car was a mess but she had no recollection of the accident.  She doesn’t understand why everyone keeps telling her her memory isn’t good, nor why they want her to stop driving.

In yet another part of town, a niece was trying to spend time recollecting with her confused uncle who had severely broken a hip after a fall and would pass away a couple days later, leaving a wife who also has dementia.

And on it goes.  I could tell you about an aunt who lives in Texas and was found in Oklahoma after driving for a day and a half, forgetting where she was going, or the woman who left her apartment in Ohio on foot, trying to find her house in Chicago.  She hadn’t lived there in over fifty years.  Currently, there are over 5 million people in America with Alzheimer’s and each of them have a story.  Their story, in turn, ripples out to touch others.  Millions of people are involved with either developing this disease or caring for someone with it.

Dementia is taking a huge toll on individuals, families, communities and the nation.  And yet, a chronic underinvestment in Alzheimer’s research persists.  If you are interested in advocating for more funding for a disease that none of us is safe from, please consider writing your representative.  You can go to https://act.alz.org/site/Advocacy?cmd=display&page=UserAction&id=1295 to fill out a form urging action.