Readers’ Letters Reveal Hopes, Frustrations

Omoiyari . . . Think of others first and good karma will return to you.
      — Frances H. Kakugawa

Dear Frances,

Your last column on compassionate care was the best you’ve written. I wish all the doctors in Hawai‘i would read this column.

Jean

Hilo, HI

Dear Jean,

Sometimes we need to begin with one. Please tell your physician about this Hawai’i Herald column. It may still be available at the KTA Super Stores on Hawai‘i Island, or you can order it from the Herald office. I hope we can all make a difference, one step at a time.

Frances

Via phone call — it was the third call I received expressing the same sentiments.

“It’s not happening, Frances. I was so happy when you spoke to us at our adult residence. But, Frances, it’s not happening. I thought we would receive more compassion and kindness after you spoke to us, but it’s not happening. I have your picture near my bed and I pray and talk to you every morning. When are you coming to Kona?

Kalani

Kona, HI

Dear Kalani,

Tell your director that, as you say, “It’s not happening.”

I’ll be speaking at the Hawaii Community Caregiver Network Conference at the Sheraton Keauhou in Kona on Sept. 9. I hope your staff members will be able to attend. Keep talking, Kalani.

Frances

Dear Frances,

I enjoyed your talk at our geriatric center two weeks ago. Is there any way you can talk to our staff and our social workers? They really need to hear you. It was a pleasure and also an honor to meet you. Thank you for teaching me the lessons of patience, friendship and warm compassion to ailing friends and to my fellow residents here.

Mary

New York City, NY

Dear Mary,

It was truly my honor. I was sorry that none of the staff members attended. You all have a stronger voice than I do, so see your director and discuss what you mentioned here. I’d be happy to return to talk to the staff members. Remember what we discussed — that you didn’t lose any of your power and your dignity when you became a resident. I, too, will get in touch with your director. Yes, please talk to other residents, because it can be a very lonely place for those who spend most of their time in their rooms. When there are activities, invite others to join you. Thank you for doing this, Mary.

Frances

Dear Frances,

A friend gave me your book, “I Am Somebody,” and I’m sorry, but I cannot embrace it. I’m too busy trying to be both a caregiver to my husband and to continue my work as an artist — and I’m not getting any help from our agencies in the state and city. It’s very frustrating to be the kind of caregiver you promote when there is such a lack of help from our state.

Judy

New York City, NY

Dear Judy,

I appreciate your note. I know the world of caregiving is one of imperfections. My belief is that this disease will take its course, whether we get the best or the worst of assistance from our state. So, what can we do until help arrives? We work on wherever each of us can to make a difference, and that is with the relationship we create between our loved ones and ourselves. When former caregivers share their remorse or guilt, I have yet to see this based on the lack of help from the city and/or state, but rather on how we cared for our loved ones. What we need — both us and our loved ones — is human connectedness, and I hope some of this frustration of not having the help you seek will make less of an impact on your daily contact with your husband.

I strongly suggest that you join a support group where you can explore all of these feelings and come to embrace part of this humanity that we seek in giving care. Support groups are rich in resources. Members can lead you to free health services available in your community. In the meantime, get in touch with your organizations so they can work with legislators to resolve the lack of services in family health.

Frances

Readers: Please allow me to become the voice of those who are unable to express themselves.

Dear Family Members:

While in New York City recently, I observed the following at the last adult care residence I visited:

A 103-year-old woman was standing in the hallway, trying to get her balance with her walker. A resident who, like me, observed this, asked her if she was going to her room. “Yes,” the woman replied. The resident saw the woman’s private caregiver and said, “Susan is down the hallway. I think she needs help going to the elevator.” The caregiver looked at her wristwatch and answered, “I go on duty at 5. It’s not 5 yet.” It was 4:45.

I heard a male caregiver yell at a man who was trying to adjust his body in his wheelchair. The caregiver seemed to be in a hurry.

Family members: When you visit your loved ones in an adult facility, observe how other residents are being treated, because when you’re not there, those residents become your loved ones.

I know from experience that these observations are not rare. I’ve also heard the “Yes, buts.” “Yes, but we’re understaffed.” “Yes, but she takes too long to move.” “Yes, but I’m tired; my baby was up all night.” “Yes, buts” are not reason enough to treat our elders as though they no longer matter. Our elders are not jobs; each of them is a unique human being who must rely on others to help them live this stage in their lives with joy, kindness and appreciation. We need to make sure that this happens.

From residents to staff members at geriatric residences:

Thank you for being my family. I am totally dependent upon you and I hope that you will help me live with dignity, loving kindness and compassion.

Thank you for your gentle touch, your patient voice.

Thank you for not talking down to me, as if I were a child. I am still that adult before you knew me.

Please call me by my name.

Know that when I don’t cooperate with you and yell or fling my arms at you, it is my way of saying, “Please help me. I don’t know where I am or who you are, and I am so confused and scared.”

When I shout at you and stop you from doing your work, I am saying, “Please help me preserve my dignity. I am so ashamed that you need to clean me like this and that you see me so helpless. Please be gentle and respect me even in this condition.”

When I keep saying “No” to you, please know that it is the disease that has taken over the person I am, for I am still a person in a place where you cannot see me. Sometimes, “No” is the only word that comes to me.

Know that once upon a time, I was a person just like you, and that person still lives inside of me. Thank you.

From staff members to residents:

I will make a difference. I believe that the trust you and your families have given me will help me to do my work with human kindness and compassion.

I believe that you are a unique human being who still receives messages from me, even if you are deaf, blind or are unable to speak. I believe that you receive messages through the tone of my voice, my touch, and my feelings regarding my job and for you.

I believe that you deserve to have your own dignity preserved and honored by me, and this I will do. If something is broken or not working, I will fix it.

To all professionals who care for our elders:

I know your work is endless and that, sometimes, you are overwhelmed. If I had a magic wand and could spin some magic, I would grant you three wishes:

First: When you get up in the morning to begin your shift, I wish for you to feel joy, because you are about to begin caring for someone whose life is totally in your hands. I wish that you not see the day ahead as a mere job, but rather as a way to live your own humanity.

Second: Throughout your shift, as you work endlessly for the sake of another person, I want you to feel so good inside that you want to weep because of the extraordinary difference you are making in people’s lives. I want that the stories you share are not of drudgery, but rather of the little joys that come between you and the ones for whom you are caring.

And, finally, third: When you leave your job at the end of your shift, besides feeling physically exhausted, I wish for you to feel exhilaration and good about yourself, because you made such a loving difference in someone’s life. When you chose this job, you chose to receive a gift every day — a gift of being a very special human being.

You may not know it or feel it, but you belong to that very select group of people who live the humanities day after day. In your busy life, you may not know the impact you are making. There is no medal or special ceremony at the end of each day, but know that your acts of compassion and human kindness are appreciated, observed and learned, and are being passed on to our children and to all in your company. All of us are learning from you. What better gift to leave to our future generations than a legacy of knowing what it takes to be a kind human being, and you are all of this and more.

Frances Kakugawa was her mother’s primary caregiver during her five-year journey with Alzheimer’s disease. A native of Kapoho on Hawai‘i island, she now lives in Sacramento. Frances has melded her professional training as a writer and educator and her personal caregiving experiences to write several books on caring for people with memory-related illnesses. She is a sought-after speaker, both in Hawai‘i and on the Mainland, sharing strategies for caregiving, as well as coping with the stresses of caregiving.