Posts Tagged ‘Alzheimer’s’

My blog site is included on this site for people who are caring for loved ones with various illnesses . Please go to this site for the entire sets of blogs from various caregivers.


My own is listed below.

20 Valuable Blogs for Caregivers in 2018

Caregiving for a Loved One, Young or Old, Is an Incredibly Difficult Job. These Bloggers Share Their Wisdom, Helping Any Caregiver on Their Journey

Frances Kakugawa

Frances Kakugawa is a distinguished author and poet, whose experience in caring for her late mother, Matsue – who lived with Alzheimer’s – influences much of her work. 16 years after her mother passed away, Frances remains an active voice in caregiving, and has published four books on the subject – including one for children. She writes a Dear Frances advice column for caregivers in the Hawaii Herald, and her long-standing blog has a vast amount of posts about caregiving, ranging from practical advice to profound poetry.



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It was a privilege to give the keynote address on Dignity in Caregiving at the Hawaii AARP conference yesterday. The poetry writing workshop I conducted after giving the address led to very deep probing by caregivers. Those who have attended my sessions in the past are familiar with my one blade of grass  to get ink on paper. One caregiver discovered as she wrote, that her mother was the blade of grass.

Following is an email from Linda Nagata, a former caregiver- member of my poetry writing support group in Honolulu.

Aloha FOF (Friends of Frances),


It was my honor to attend the above conference yesterday and hear our favorite keynote speaker. Frances, in her boa, once again had the crowd spellbound.  You could have heard a pin drop in the conference room.  She read her poems and talked about caring for her mother -and even things I had never heard her talk about before.  It is always emotional to hear her, and as usual there were tears in my eyes.  Frances truly does a great service for other caregivers by letting them know what they are thinking, feeling and doing all have value. 


Frances inspired me to come home and read more of our poems from Breaking the Silence.  I still laugh over Elaine’s “More Glimpses of a Daughter and Mother”,and Jason’s always are so deeply felt and thought out.  It has now been 21 years since my mother departed.  Last night was the first time I was able to read my own poems and not cry.  Imagine – 21 years it has taken me to get to this point! At least I have reached it, and I consider that an accomplishment. 

Thanks Frances for all the encouragement along this bumpy road.


Care giving, as Linda points out, does not end when our loved ones are gone. Linda explains this in her poem written after attending our poetry support group.


Sensei (Teacher)

She came notebook and pen in hand

To lead me out of my morose state,

Encouraging, cajoling, insisting

Write, write, write.

Others spoke of current dilemmas, emotions.

I was stuck in the past —a dozen years gone by.

“Why am I so emotionally delayed?” my mind asked.

Then the wiser voice said, learn and move on.

Sensei says write, write, write,

Write about one small thing

I try to focus on one small thing

Dredging up the aged memories

Like buried garbage they are not pleasant,

Helplessness, anger, resentment.

Write, write, write

A miracle happens

The bitter emotions, softened, turn

Into acceptance and peace.

Write, write, write.

        By Linda Nagata: from Breaking the Silence: A Caregiver’s Voice

Linda, after exploring her grief through poetry, left the group saying she was now ready to move on. It looks like she finally did.

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What is Normal in Alzheimer’s Disease

What is normal?

Normal is like Beauty, all  in the eyes of the beholder.

When I was a caregiver for my mother who had  Alzheimer’s disease, I saw two normal worlds between us, hers and mine. Once I acknowledged that  her world was as normal to her as mine was to me, I stopped using reason and logic to bring her into my world. I  embraced the new person who was evolving right before my eyes and stopped denying the person that she was. I stopped thinking my world was the only normal one.

When my mother saw a “black thing” coming out of a painting on her bedroom wall, I quickly put it away saying, “I’ll take it away so you won’t see the black thing.”  I dignified her world by not denying what she saw. I had to believe, there is a window to her mind that opens now and then, allowing her to know the world in which she has been reduced to live in, has become strange and scary. To remind her of this can be cruel and dehumanizing.

My mother, like Elaine Okazaki’s mother hallucinated of seeing an infant in bed with her. Look at how Elaine entered her mother’s world from an excerpt described in her poem ” Humph, I Say”

…”she shouted about that girl and that man in bed with her.

“Where’s the man?” I stammer.

“Next to me, Can’t you see?”

“And where is the girl?”

“Can’t you see? Against the wall!”

“Well,” I say, “Let the man sleep against the wall.

And put the girl next to you.”

“Oh, okay,” she utters.

Back to bed……”

from Breaking the Silence: A Caregiver’s Voice


Mary, caregiver for her aunt, discovered caregiving to be a whole different world once she accepted her aunt’s world.

“My aunt has an imaginary lover. We got into many confrontations when I told her, ‘What lover? I don’t see anyone here.’ She’d shout back, ‘Can’t you see? He’s right here?’ And we’d go back and forth like a pendulum, creating such frustration in both of us. Once I accepted her world and told her “Wow, Auntie, he’s pretty good looking, huh?” past animosities ended and we got along fine. Now when I visit her, I also  visit her lover for he’s always there.”

People afflicted with dementia often turn to babbling in later stages of the disease. Have we thought that maybe we are the ones with language deficiency?  Perhaps if we learn to see through their eyes and hear through their ears, we will learn more of their world instead of being stuck in our own. This may lead us to find a way to give care with less conflict. Once we believe both worlds are “normal”, once we open the doors to both our worlds, we eliminate the Tug of War that often erupts between two parties. By doing so ,we  dignify the new person who is evolving and by so doing, we dignify ourselves.

A loved one says, “John came to see me today.” In your world, John has been dead for over ten years. Enter her world and a comment similar to, “Did you have a good visit?” will bring peace and dignity to that moment. To argue and tell her, “John is dead, Mom. You must have had a dream,” drops a jagged rock in the middle of that stream that was flowing so smoothly until you arrived.

But what of our world? Are our loved ones incapable of entering our world? At certain stages of the disease, they will not be able to, not with logic and reason, but there is a place in our world that offers them  a front row seat: dining in restaurants or around family gatherings,  feeling the wind on their faces, hearing happy voices of family, feeling love and affection through human touch,  being connected through  conversations, even if they eventually are reduced to monologues. Our world offers the humanity of what it means to be human.

Enjoy both worlds for we are all as normal as we can be.

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