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Posts Tagged ‘Caregivers’

To  caregivers who are using their pens to  preserve the humanities  of caring for someone with Alzheimer’s or other dementia-related illness, this is for you.

HELP!

SOS!

I’m shipwrecked

On this Isle of Caregivers

Send Help!

 

A bottle, sealed with wax

Washes up to shore. Inside,

A pen and sheets of blank paper.

©frances kakugawa

 

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Really?

Take a few hours off, take a day off, take a week off, you caregivers need to take care of yourselves. When we, who are or have been caregivers  hear this , we know these words  are spoken by non-caregivers. It is  simpler said than done to suddenly step out of the 24/7 caregiving life. Caregiving , because it involves us at the emotional, psychological, physical and social levels,  is not a job one can close a door to  at the end of a day. It is a way of life and there are just too many doors without locks. So what can we do?

I recently exchanged the following emails with Diane, a caregiver from Sacramento who went to Hawaii for a week of vacation.

Dear Frances, I’m here in Hawaii and looking at all the beautiful trees. I’ll send you a picture. In the meantime,
my mom is back in the hospital and my sister Bonnie is there taking care of her. I’m trying hard not to let it spoil my vacation.

Aloha, Diane.

Dear Diane,

I’m going to be your mother’s voice : Yes, enjoy your Hawaii. Nothing would please me more than to have you enjoy your vacation. I’ll be fine. If I’m not fine, that’s all right, too. As you enjoy your Hawaii, I’m putting my hands together in gratitude to you for being that very loving daughter. Whether you’re here or not, it doesn’t matter because your love for me is  with me. And you know, just as I know, we don’t need to say it anymore. Whatever we need,  we already had before I got ill.

I’m in the hospital not because you went on a trip, it would have happened anyway. So enjoy Hawaii for me, too.

Dear Frances, Thank you so much for this wonderful message from my mother. It is just what she would have said.] I cried when I read it. You are an angel.

Love, Diane

Yes, words can keep the river flowing  or  put boulders into our midst. Sometimes, we need to give ourselves the right message, even if we know it came from our own pen.

One Christmas Day, I went to a football game while my brother cared for my mother. Throughout the game,  I felt guilty for having such a free and fun  time at the stadium.

When my mother was placed in a nursing facility, that same guilt became a constant companion until I gave myself the following message. What would my mother say?

These are excerpts from my poem “Dear Caregiver”

We were not joined by blood or vows

For this kind of loving…  

The love that I needed, you have given

Before there was a thief…  

We have bade farewell, you and I,

When there was a me…  

To your courage, your love and loyalty

To want to rise above the burden of care,

I press my palms together to you.

But listen to my unspoken words,

It’s time to be free.

Free from guilt, sorrow,

Physical and spiritual destruction.

Let us both know peace.

Return us to who we were.      

                                   From Mosaic Moon  

 

We can use words to work for or against us.

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A Plea from Caregivers:

Last week I discovered  how easy it is to be friend.

I visited Genie who lost her mother and we just sat in the living room. We spoke if we wanted to, but most of the time, we were quiet. We didn’t need  words  to fill the silence. We didn’t need any  kind of fluff  because our friendship took care of everything. I looked at her books on the shelves and we talked books now and then. But mostly, we just sat.

When I was a caregiver for my mother, the friends who visited us were caregivers. Why do we scare the others away?  

This week, members from my support group and I had lunch together and that feeling of camaraderie was so powerful around the table, had we not spoken a word, conversation would have been heard clearly,  just as the  compassion and love that were so strongly felt.

One caregiver brought flowers from her garden to two of the caregivers who had lost their mothers recently.  There were no fancy words and we didn’t need them. We just needed to be with people who honored the friendship among us all.

Had we not spoken a word

Around the table yesterday,

We would have felt and known

Love, understanding, empathy, appreciation. Friendship.

But being the powerful and fearless woman that we are,

We added words, laughter, tears, hugs, even a toast.

Around the table, holding us close,

The golden thread of our loved ones.

And friendship.

 We were all women  but male caregivers need their friends as much as we women do.

Caregiving gradually isolates us from the world and  it  gets reduced to the same TV shows like Jeopardy and Wheel of Fortune, the same movies or music of the 50’s or 60’s of our loved ones. I played Japanese songs from WW II for my mother.

A caregiver’s world eventually turns into one of isolation because of the demands put on caregivers. Phone calls become less and less. Our conversations are reduced to monologues. We no longer have the freedom to do what friends usually do. But it doesn’t mean we don’t need our friends.

True, the ones being cared are not the persons you once knew. They may not be able to hold conversations.  But they are very aware of your presence and the conversations in the room, give comfort.

We learn to embrace the new  person who is slowly evolving and we ask our friends to do the same. There’s nothing to be scared of, believe me. Caregiving is not about dying, it’s still about living with dignity.

Friendship, the true ones, are not difficult to nurture. True friendship is for those times when someone needs a little bit of company, a little bit of caring, a little bit of friendship.

Caregivers aren’t asking for much.

1. Don’t wait for a call that will most likely never come. But a call from you saying, “Are you free for company today? I’m coming over for a few minutes” is deeply appreciated.  I felt so much braver and less scared when there was someone with me when I was caring for my mother.

2. Cut flowers from your garden,  plopped in a vase, bring so much beauty  that is often overlooked in the day’s events. I often  just sat and stared at the flowers, saying aloud, “Oh, how pretty.”   And my spirits were lifted.

2. Food. Yes, take a snack or a salad or some of your left over dinner. We are too exhausted to cook real meals so your left overs would be a feast. And don’t forget chocolate  or even a Snicker bar. Our grocery lists are usually limited to those of our loved ones. Caregivers often put themselves off the list. Bring cold beer or something that falls in the “treat” dept.

3. And make us laugh and tell us about the world out there. Tell us a joke and if we don’t get it, we’ve been out of practice. Keep talking to us.

4. Sit with our loved ones and send us to the hairdresser or barber, grocery shopping, or a masseuse. It may be too long for a golf game but it’s still possible.

  If you feel insecure about sitting with a friend’s loved one, bring a friend along for support.

5. If your friend’s loved one  is in a nursing facility, and you know your friend goes daily during  meal times, volunteer to do the same.

6. Leave a note to the caregiver when you visit their loved ones in hospitals or nursing facilities.

    We appreciate , visitors to our loved ones. It means so much to know others care.

( I had a note book for visitors to “chat” about their visits with my mother.. I had a sign on the wall, inviting visitors to “sign in.”  It touched my heart each time she had a visitor.

On behalf of all caregivers, men and women,  and all the ones they are caring for, I encourage you to continue your friendship, especially during caregiving.

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Mistakes in Caregiving

“Did you ever make a mistake?”
I looked at the caregiver who asked me this at
my last lecture. I was stunned for awhile.  Why was he seeing me as
a  perfect caregiver?

I told him about one of my giant-sized mistakes:

I looked at all the dresses and suits hanging in my mother’s closet and knew she would no longer be using them now that she needed help in dressing. Her closet  looked like springtime because lavender, pink and light blue were her favorite colors. Most of the dresses were sewn from all the floral printed material I had bought from fabric shops before her Alzheimer’s. She was a dress-maker so like her vain daughter, she enjoyed the latest in fashion.

Black was for funerals so she had a few funeral dresses. Brown was for old people
so she didn’t have any browns in her closet.

I was now dressing her in  elasticized pull –up pants and blouses
that buttoned all the way down in the front.  So I took all her dresses off the hangers and folded them in boxes. I planned to give them  to our neighbor for her family in the Philippines.
I left the boxes in her room, thinking I’d finish the task the next day.

The next morning I saw all her dresses hanging on the hangers in her closet.
I felt the splinter in my heart.

As a result of this incident and many others, I wrote the poem “Emily Dickinson, I’m Someday” which appears in Mosaic Moon. I quote the last stanza from the poem:

“Yes, I am still here.
Help me keep my dignity.
Help me remain a human being
In this shell of a woman I have become.
I beg that you not violate the person I still am.
In my world of silence,
I am still here.
Oh, I am still here.”

From Mosaic Moon: Caregiving Through Poetry
and soon to published: Breaking the Silence: A Caregiver’s Voice


 

I understood why he saw me as a caregiver who didn’t make mistakes.
Perhaps he saw, after I read this poem, that some  mistakes no longer exist if they teach us to not do the same act twice and if we use that mistake to teach others.

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