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

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10 thoughts on “Say It Ain’t So

  1. Your writings are amazing and I am enjoying each and every one. It is so good you are sharing-it is helping each of your readers.

    • Thank you. I am heartened by the feedback. People have said here as well as in private messages that our story is helping them and I am so grateful that I appear to be accomplishing what I set out to do! Onward! Hallie

  2. With dementia its so hard to find that line of demarcation when the plea for independence is no longer the best for them. And it must have been so difficult trying to help her from afar…and needing to rely on the assessments of people that were there with her on a daily basis. Thank you for your words.

    • I have no doubt that our difficulty in initially assessing our Mother’s situation was compounded by the fact that we were not on the scene on a daily basis. However, ironically the team of geriatric social workers were specifically designed to help families who were out of town; as I look back, they played a significant role in giving us what turned out to be false hope that her confusion was a temporary condition. It also is interesting to me that often people on the scene “band together” to paint a rosier picture than what is actually happening; it is as though it is in everyone’s best interest to maintain the status quo. But most important is your observation that there is a fine line between what the patient wants (independence) and what is in their best interest. I think this points to a profound moral dilemma. It seems to me that if my mother had gone home, it is likely she would have died many years earlier (a fall? another type of accident?). It seems to me there are some schools of thought that would say perhaps that is what she would have wanted. On the other hand, as I said before, there were many moments, if not whole periods, of grace, joy and love during that last decade. How do you do “the right thing” when you have no idea what it is? Thank you once again for your comments; you always get me thinking and I appeciate it. Hallie

  3. Dementia…..that is a word that I fear. Once again you have given me insight into my future wth my 90 year old mother. So far so good. In a way, the reality of dementia is more devestating than actual physical illness. I could feel that fear and denial in your words and I am sure I will respond in a similar manner. Thank you so much for your perspective.

    • If I had a bottom line for this post, it is to counsel you to ask-ask-ask the doctors, social workers, and especially the nurses (who in my experience had boundless wisdom and compassion and knowledge). Clear and direct communication is the key. And secondly, I would observe that I found an unexpected relief when I finally accepted what I did not want to know. Again, I can only speak from my experience, but when I finally ‘understood’ what was unfolding, I felt a certain peace, and no remorse, as we moved forward in the dance with this awful disease.

  4. As I find words unable to form, words I know, but cannot quite recall the exact one I need to make the sentence and meaning perfectly clear, make a quick substitution – yes, I have a large vocabulary on hand. But it bothers me because when I look at my teenage daughters, I really see myself – still able to do everything including share their clothes which sort of tricks you to think you are really still so young. It is odd to get older – turning 50 this year. It is a very strange sensation to feel so young, but knowing that time is starting to wear the veneer thin.

    • Donna C, you have beautifully described the invariable feeling of loss that accompanies the celebration of each new year. I remember my vibrant, vital Uncle confiding with sadness the many indignities of getting older. Now I too slowly but surely am discovering what he meant (did I respond to that email; I meant to; I thought I did; but no, I guess I didn’t…).

      I am telling my Mother’s story here from my point of view, but I often think about what it must have been like for her—thinking she was having knee surgery and then never again seeing the inside of her home. Just the thought of that brings tears to my eyes.

      There is a quote from poet Cynthia Zarin in today’s NY Times that sums it up: “That is what getting old is…we think we will learn Sanskrit, learn Greek. Instead, what we learn is more than we ever wanted to know about things we wish we’d never heard of.” Perhaps that sounds overly pessimistic on a beautiful Saturday morning, but one of the hopes for my writing is to share and indeed embrace both the joys and sorrows of these often overlooked and forgotten decades, where time– in your words–wears veneer thin…

  5. Thanks so much for sharing your journey! I went through a similar, but different, process with my mom years ago, and it is so sweet to read your words.

    • That the process with your Mom was “similar but different” is actually one of the reasons I hesitated to do this; I realize that every experience with aging-eldercare-dementia et al is unique, and can only hope that what I share here will have a broader resonance. So I was immensely gratified by your comment that it is “sweet” to read these words. That hits home for me; even though our experiences were different, there is still enough in common that my observations and words have meaning for you. I cannot thank you enough, Hallie

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