Say It Ain’t So

Her doctor’s words echoed in my brain:

Your Mother will never go home again.

I refused to believe him.

(Not go home? No way. You were right the first time; she will dance out of here.

You’ll see. She will show you!

We will show you.)

I was determined. I was defiant.

I sent an email to everyone I knew in LA; does anyone know anyone who knows anything about eldercare?

Someone did.

Through my all points bulletin, I found a team of geriatric social workers. They recommended a new doctor, and off she went to a new team of specialists.

Her original doctor wasn’t happy with me. I didn’t care.

The new doctors put her in special program to improve her cognitive skills. (Yes…a program… that’s what we need…)

My Mother gleefully shared reports about her commute across LA. The van driver sang her name. She looked forward to seeing him.

At the program’s conclusion, she got a certificate.

When I tried to enroll her in the next level, the hospital declined; we are sorry, but you see, we are funded by grant. Our participants have to show progress. If they don’t progress, we don’t get our funding. And well, we can’t have your Mother back. She didn’t show progress.

She didn’t show progress? But she has a certificate!

She can’t come back.

I found another program: a senior center with classes to improve memory skills. (Yes, a better program…that’s what we need…)

We are sorry; your mother doesn’t exhibit the cognitive ability…

NO. NO. NO.

You are wrong. You are all wrong.

I convinced the nursing home to move her to the “assisted living” section. The residents live in cute little rooms and occasionally need a helping hand. She would prove she could be on her own. She looks so much better than the other patients… certainly my Mother doesn’t need around-the-clock care…after all, she’s not really sick…is she?

And my Mother moved to assisted living…not once, not twice, but three times.

And each time, within a few hours, she fell. After the third attempt, the nursing home administrator referred to my Mother’s “staged falls.”

Excuse me?

Staged fallsshe “falls” gently; she’s not hurt and she knows we will find her. He explained that subconsciously she knows that she can’t be on her own, so she “stages” the fall, and back she goes to full-time care.

Do you think it was starting to sink in?

Do you think I was ready to admit defeat?

Do you think despite her plaintive pleas to go home and my willful determination to make it happen, my Mother actually knew she needed to be there…in a nursing home?

Help me, Hallie!

How do I help you, Mama?

The answer came from the nursing home’s new director/head nurse.

In fact, there was nothing new about her. She had retired from the same job–in the same facility–a few years earlier.

But retirement bored her.

She was back.

She was tough.

She looked me straight in the eyes.

Her words were direct, unequivocal, uncompromising.

Your Mother is the best of the worst, she said.

You are right. In comparison to the others you see around here, she looks good.

But your mother has dementia. She is not able to function on her own. Her falls are cries for help.

Dementia.

No one had used that word before.

OK. I am ready.

Tell me, please. Tell me what I need to know.

Your Mother is the best of the worst.

She will not get better.

And she will not go home.

A Swift Current || Reflections on Elderly Parents || Say It Ain't So

Photo by Hallie Swift

Advertisements

You Can’t Go Home Again

Summary: My elderly mother was living in her beloved home with the concerted help of friends, family and home health aides.  But after knee replacement surgery, her dementia emerged– fully developed.  Our family was completely unprepared for our new reality; one of the many issues addressed by Caring Across Generation’s #blog4care as together we confront our national eldercare health crisis. Here is our story:

Her home was the culmination of her dreams.

And as my mother encountered the increasing physical challenges of her later years, she clung fiercely to her independence and her refuge.

I remember one particular attempt to discuss her emerging limitations:

Maybe we should look into a retirement community…?

Maybe I should just die.

And so, from 3000 miles away, we cobbled together a ragtag but reliable network of friends and cousins, neighbors and home health aides, church volunteers and Meals on Wheels. It took a village, but our mother would remain in the place she loved best.

And for more than a year, it seemed to work. But her knee started to hurt; then it started to buckle; then she started to fall.

Her doctor’s proposal: knee replacement surgery. But my mother was apprehensive, fearful.

Should I do this, girls?

We set out to answer that question during our annual Christmas visit, weighing her options in a brief, upbeat examination with her doctor. He countered her doubts; happily assuring us

you will be dancing out of the hospital.”

It’s alarming how charming a doctor can be.

After the surgery, my mother reported from her hospital bed that she was living in an opulent room, decorated with crystal chandeliers, gold damask drapes and a heavy red brocade bedspread. It was a castle, she giggled; her every wish was their command.

I thought it was bit unusual, but I didn’t worry; clearly she was still under the effects of the anesthesia.

But the fantastical descriptions continued. I didn’t know anesthesia could last so long. Her conversations made no sense.

She could not stay at the hospital. After multiple discussions with doctors and social workers, we moved her to a “convalescent” home. It was described as a temporary interlude; the best place to learn physical therapy for her new knee.

I called her. She burst into tears.

Oh Hallie, I am so glad it is you. Last night I slept on a park bench! Now I am trapped in a school!

…a bench…a school…?

Call the police, Hallie. I am lost!

But Mama, I called the number for nursing home. They answered. And they put you on the line. You’re where you’re supposed to be.

Hallie, please help me.  I am lost! Call the police!

But…

Hallie, HELP!

(Time out…is this still the anesthesia? OK…I can get her through this. If I keep telling her where she is– what is going on–my smart, stubborn mother will come out of this. The anesthesia will wear off. She will wake up; learn the physical therapy; go home.)

Yes, Mama. I will help you.

I called again.

Oh Hallie, you are missing a fun party. I am at Aunt Mary’s house and there are lots of people. I can’t find Mary, but there are so many people here. I am sure I will find her.

Mama, you are at the nursing home.


Hallie, don’t be silly. I am at Mary’s house. It’s a party. Lots of Mary’s friends are here.

My uncle called me a few days later. I spoke to your mother. She thinks she is at Aunt Mary’s…at a party!

(That must be some party…)

But I still didn’t get it.

I thought her mental lapses were temporary. I thought it was the anesthesia. I thought she was going home.

Do your exercises, I implored; my sister implored; our cousins implored. Our village was unanimous: Do your physical therapy and you will go home!

The nursing home notified us; Medicare will not cover her care unless her doctor prescribes more days…(Yes, I thought, she needs more days to learn her exercises; more days so she can go home!)

I called the charming doctor. I would convince him to prescribe more treatment; give her more days. I know she will get better…

I heard his hesitation, and then I heard his words.

Your mother had me fooled; she was so bright and bubbly; funny and sweet.

My mother had you fooled..?

I didn’t ask the right questions. I didn’t realize that her mind was gone.

What?

I would never have done this surgery if I had known her mind was gone.

WHAT? What are you saying to me?

I am saying your mother will never go home.

A Swift Current || Reflections on Elderly Parents || You Can't Go Home Again

California Dream– Photo by Hallie Swift