Posts Tagged ‘Men Caregivers’

On my Soapbox to Two Men  Caregivers

“Never ever take care of an Alzheimer’s patient. Institutionalize them for your own sanity.”

“You don’t do anyone favors by keeping them home. You’re forgotten the minute you walk out of the nursing home.”

I’m shouting through a megaphone on a soap box after reading the above comments from two men on giving care to loved ones with Alzheimer’s disease. I’ll try to remain calm.

1.Some sons (and daughters) are not meant to become caregivers.

2. No, they don’t remember but they deserve dignity, compassion and love from us because this is what it means to be human. Being human doesn’t end because one has no memory or speech or whose bodily functions have been eliminated.

3. Better said than done, it may seem,  but as  a caregiver for my mother the daily discoveries on how to be the best possible caregiver brought many answers not yet found in medical offices. I couldn’t change the physical and medical aspects of this disease, but I could change my attitude and this dictated to me, what caregiving was going to be about. Never, you say? There are as many circles to caregiving as there are families. Never or Always denies the individuality of each situation.

4. Above everything else that goes on in caregiving, we must preserve human dignity because whatever we do to others, we do to ourselves.

Some of my discoveries:

There are two normal worlds, mine and hers. I entered her world instead of trying to bring her into mine because the disease doesn’t allow this. So when she said, “My sister was here,” and in my world,  her sister  has been gone for years, I entered her world and asked,”Did you have a good visit?” And she shared her hallucinations with me. We flowed together, she and I, in her normal world. I often brought her into mine when we went to restaurants or walked or wheeled the mall or sat at the beach.

Yes, the constant repetitions do hit many nerves. In her world, she was asking it for the first time so I entered her world and answered each repetitive question as though it were being asked for the first time.

I also embraced the new person who was evolving before me and I learned to love this new person, perhaps more than the one before Alzheimer’s because of the care she needed and of who we were before Alzheimer’s. The changes in our roles transformed our relationship,  and had I  held on to the former, it would have evoked  helplessness and negative human emotions.

Words. Words make such a difference. They create attitudes and attitudes become part of how we perceive caregiving. To call any of her behavior  abnormal creates frustration. To call that exact behavior as her attempt to retain her own dignity brings compassion. Words.

To those  two men, I’ll put my megaphone down after I repeat my Emily Dickinson  poem, the poem written when I asked myself one day,  if my mother  could speak, what would she say?

Emily Dickinson, I Am Somebody 
If I could speak, this is what 
My voice would say: 
Do not let this thief scare you away. 
Do not let this thief intimidate you 
Into thinking I am no longer here. 
When you see me, tell me quickly who you are. 
Do not ask me, “Do you know me?” 
Help me retain my own dignity by not forcing me 
To say, “No, I don’t know who you are.” 
Save my face by greeting me with your name 
Even if the thief has stolen all that from me. 
It shames me to such indignities to know 
I do not know you. Help me 
In this game of pretension that the thief 
Has not stolen your name from me. 
My words have all forsaken me, 
My thoughts are all gone. But do not 
Let this thief forsake you from me. 
Speak to me for I am still here. 
I understand hugs and smiles and loving kindness. 
When I soil my clothing or do something absurd, 
Do not ask me “Why didn’t you?” 
If I could, I would. 
I know I have turned into a monstrous baby, 
If I could, I would not allow this thief 
To let you live and see what he 
Has stolen from me. 
I know my repeated questions 
Are like a record player gone bad, 
But my words are gone and this is  
The only way I know to make contact 
With you. It is my sole way of saying, 
Yes, I know you are here. This thief has stolen 
Everything else except for these questions 
And soon they, too, will be stolen away. 
I am still here 
Help me remain a human being 
In this shell of a woman I have become. 
In my world of silence, I am still here. 
Oh, I am still here. 

Gloria Steinem recently said that changing the way we think about masculinity is one of feminism’s great remaining challenges. After decades of feminism, she said, “we know that women can do what men can do… But we don’t know that men can do what women can do.” And that needs to change, because “it’s really important that kids grow up knowing that men can be as loving and nurturing as women can.”

I’m reacting to those two men alone  tonight because I know many men caregivers who are as compassionate, caring and capable as women. These men obliterate gender. I hope these caregivers, along with women caregivers,   will add their stories to this post so we can  reassure Gloria Steinem that what she suggested has been happening for decades. And more importantly, we  reach those caregivers whose voices echo those two men above.

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Many months ago, I was interviewed by Nina Wu of the Honolulu Star-Advertiser about male caregivers. Nina was interested in writing an article about the rise in men caregiving for their wives. I told Nina, “caregiving makes no distinction, the demands are the same for spouses, brothers, sons.”

And I told her about Rod Masumoto, who is in Breaking the Silence, and who I have talked about here on my blog before. Rod is a very special caregiver, and I am so proud of how he came to be a better caregiver by finding his voice through poetry. Even though he said he would never write poems!

Here is the photograph of Rod and his mother, Fusae, that ran in the newspaper:


It must have been fate that inspired Nina to do this story because at the same time she reached out to me, Rod had just contacted me to say that his mother had passed away. I am happy for Rod and his mother that their story was shared. Here is what Rod told Nina:

When he first walked into her workshop three years ago, he told her flat out that he wasn’t into poetry. And yet he penned his first poem that day, titled “What Do I Feel?” and went on to write 30 more.

Today, Masumoto, a retired safety system specialist, will tell you writing those poems saved his life.

He cared for his mother, Fusae, for 14 years until her death from Alz­hei­mer’s in September.

Before going to the workshop, he felt isolated in his daily challenges, which included helping his mother bathe, get dressed and eat. It was painful to him that she didn’t recognize her son or recall the things she had taught him.

Masumoto’s anger at the situation was growing, and he was overwhelmed.

“It’s a daily battle trying to survive, and (writing) helped me vent the anger and frustration,” he said.

As he wrote poem after poem, Masu­moto found not only an outlet for his emotions, but began to find acceptance for his mother’s situation, as well as a willingness to open up to changes.

“When you take care of somebody and remain in the box (isolated), you cannot survive,” he said. “You have to allow yourself to expand and to be flexible.”

Support groups can help you see that you are not alone, he said, or offer solutions you may not have considered. His advice is to be open to whatever services are available, whether it be home care, hospice or help around the house, so you’ll have more quality time with your loved one.

Rod and I talked to Nina back in October, but the newspaper article just ran yesterday. If you have paid access to the Star-Advertiser website, you can see the whole thing. Rod and I are at the very end.

In case you can’t read the article, here is a little bit more from the article, the part where she quotes me:

“We think caregiving is more for women because it demands so much nurturing, cleaning and tasks like giving baths,” she said. ”But at the end these men become the most compassionate, most capable caregivers.”

Caregiving is physically exhausting, according to Kaku­gawa, but other aspects of it, such as handling finances and legal matters, can be stressful as well.

Men may better be able to compartmentalize their feelings in order to focus on caregiving tasks at hand, she said, but it does not necessarily mean they experience fewer emotions.  Caregiving rises above all gender and brings us all to the humanities of  caring for a person with compassion and dignity. “

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Sons as Caregivers for Mothers

Someone recently asked me whether I knew of sons who are caregivers for their mothers.
Let me introduce you to three male caregivers through their own voices.

Red Slider, poet/writer, was the sole caregiver for his mother Isobel for over ten years. The following excerpt is from his ‘Notebook #1’.

…Half-past-three-with-searchlight: Even so, she warns from somewhere in the lightless muddle, Don’t hurt me! I check my defenses. Mom, I’d never hurt you. But I know I do,
a hundred times every day. Pouring her hand into the sleeve of her robe, patting her on
the shoulder after pushing the chair up to the table, a sock-snag on a toenail (and when,
I wince, should I treat her to the agony of cutting them?). A simple difference, the
gradient a couple of molecules make scurrying one way or the other over open skin
registers like a shard of ice drilled through her chest, my fingers just grazing her throat
throws her head back against the chair, the last button on her blouse is lost and I will
have to start over…

by Red Slider,
first published in Andre Codrescu’s _Exquisite Corpse _, issue 4, April, 2004.
His entire Nightbook #1 and #2 will appear in my forth-coming book: A Caregivers’ Voice: Breaking the Silence Through Writing.

The Day You Became Isobel

Not on the days you lost your keys,
or the words you couldn’t quite recall,
or the puzzles unsolved in the Sunday Times;
nor, when the refrigerator got lost,
or the steps home unretracable,
or the faces of your children unrecognized.
It was on the day I returned to your name
for the sake of my memory as much as yours.
I said, ‘Isobel’ to remember the you of you,
and whenever I spoke about you to them,
or to myself about you; or called out to you,
“Isobel, it’s time for lunch. Isobel, I’m here.”
That was the day you become so much more
than the ghost of a ‘changed person’,
a ‘she was’ stuck in my native thought;
more than that, so much more than ‘mom’.

By Red Slider

(From my soon-to-be-published book, A Caregiver’s Book: Breaking the Silence Through Writing)

Rod, is also the sole caregiver for his mother. He warned me before my session that he doesn’t write. Yesterday, he emailed over 30 poems written during a span of 3 months. Rod’s poems tell a story of his own development as a caregiver son. “What Do I Feel?” is the first poem he wrote at one of my workshops. “To My Mother” is one of the 30 poems he recently sent me.

What Do I Feel?

What do I see?
Do you see what I feel?
I feel more than you can ever see.
It hurts to feel,
I feel too too much,
Minutes become hours,
Hours become days,
Days become years,
Years become a lifetime!
So sad to see,
So sad to feel,
I wish to feel nothing!

To My Mother

So many years ago
You gave me life
And the bond was made.
This life to see, to hear,
To taste, to touch
But the greatest gift,
You allowed me to feel.
Through this deepest darkened night
I will hold the light
To take away all your fears.
Just know I will always be near
Through this tangled webbed maze you travel.
Have no fear, I will always be near.
I will hold this light steadfast
To make everything clear.
Just know I will always be near
Always near, no fears.

By Rod Masumoto

Caregiving takes on such an intimate role that for many sons, the act of bathing mothers are very difficult.

Steward, whose name I’ve changed, felt a lot of anxieties when he had to bathe his mother for the first time. “I discovered my sexuality is in the mind” he said. “ I was so scared I would be sexually aroused. Do you know what beast that would turn me into? When it didn’t happen, I felt such relief.”

I sent the following email to a bachelor son, caring for his mother.

“You need to relax and just think of her private parts as just another part of her body…like her hands or face. It’s all very natural. I know you feel uncomfortable about all this and it’s understandable but see if you can reprogram your mind and detach your thoughts from any sexual innuendos. She’s a woman who needs to be bathed and cleaned. If you feel uncomfortable, those feelings may be transferred to your mom.”

(I gave him specific instructions on bathing and cleaning a woman.)

I have seen sons openly weep for their mothers out of love and helplessness. And I have seen them take full control and become competent  and compassionate caregivers.

Mother Into Child, Child Into Mother

The same umbilical cord

That once set me free

Now pulls and tugs me back

To where I had begun.

There must be hidden

Somewhere, a gift very divine

In this journey back.

frances kakugawa from Mosaic Moon: Caregiving Through Poetry

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