Interview with Ben Darr on giving care on open caregiving.com

Stay Connected to the Person You’re Caring For

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Open Letter to the Press and Dr Oz:

Suddenly Alzheimer’s Disease is given prominent space on television and in our news media because a famous person’s mother has Alzheimers’. There are thousands of us who have and are living this life without fame, without the finances, without the help that is given to caregivers.  We live without recognition but  live with compassion, dignity and love, caring for our loved ones. They deserve more recognition than those in the public eye. They deserve all the assistance needed in caring for someone every hour of the day. There are families who depend on Meals on Wheels, need scholarship programs to participate in adult care, have no health insurance, can’t afford professional caregivers, but their humanity of knowing what it means to care for someone with Alzheimer’s and other forms of dementia and illness is constant behind the scenes, behind cameras.  We are insulting the caregivers who are not Dr Oz or any of the public figures. I have worked with caregivers for over 20 years since my mother’s Alzheimer’s diagnosis and I hope we do not forget families who live outside the public eye. Why aren’t they the breaking news of the day? I sympathize with Dr. Oz’s mother but I applaud those who are the true heroes of our Alzheimer’s world.

Dr Oz, you are invited to join us at our monthly poetry writing support group for Caregivers at the Alzheimer’s Office in Sacramento.

Frances Kakugawa

Frances conducts workshops and lectures on helping caregivers give care with compassion, dignity and love. Her books on caregiving are:

Mosaic Moon: Caregiving Through Poetry

I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving

Breaking the Silence: A Caregiver’s Voice

Wordsworth Dances the Waltz: an illustrated book for children on memory loss

Her Dear Frances advice column for caregivers appears monthly in the Hawaii Herald

 

 

 

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A star for my blog

I'm honored, Scott@Graying With Grace for the following honor.
I can't figure out why the print is appearing so tiny.


Just wanted to give you a heads up that  https://franceskakugawa.wordpress.com 
has been featured in my Top Caregiving Blogs Awards post.

Here's the URL: https://www.grayingwithgrace.com/caregiving-blogs/

Congrats and keep up the awesome work you do for the caregivers of 
seniors, the elderly, and disabled!

Have a good one!

Scott @ Graying With Grace

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Caregivers Sing

A group of us from my Sacramento Poetry Writing support group for caregivers met for a holiday/oldies sing-a-long at caregiver Mary’s home yesterday. Yes, that’s me on the only available male lap of Bob.

Raj, thank you for bringing your mom. She reminded us about the beauty of dignity that still resides in our loved ones.

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Maui Caregiving Session (May 2015)

I will be making my first visit to offer a caregiving workshop session on Maui next month. For those of you on Maui (or with family or friends there who could use some insight), please consider attending. Thank you to Lynsey and the Maui chapter of the Alzheimers Association for inviting me.

May 23, 2015 |  9am to 11am
Hale Mahaolu Elima Community Hall | 11 Mahaolu St. Kahului, Maui
(Please park in unnumbered stalls or outside of the housing facility along the road.)
For more information call Lynsey 242-8636 or Kathleen 871-5804

Refreshments provided for attendees
Open to the public. No reservation required.

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Coming Soon…a new book

Yes, please make a line twice around the block.

from: a shameless dreamer

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Modesto Workshop (Calendar Correction)

My marketing manager at my publisher’s office says she wants to apologize for working on my event calendar before having coffee. The wrong date for my Modesto workshop was posted on my web calendar for a few days. (Thank you to Alison H. for calling this to our attention!)

The correct date is Wednesday, November 12. The session will be held at the Alzheimer/Dementia Support Center in Modesto, California (700 McHenry Avenue, Suite B). I will be sharing tips on caregiving and how writing can help you on your caregiving journey (even if you’ve never written anything longer than a grocery list). Check-in and refreshments start at 10am. Lecture begins at 10:30, followed by resources and book signing at noon. To register, please call 209.577.0018. Respite will be available.

This event is presented by the Alzheimer’s Association and co-sponsored by the Alzheimer/Dementia Support Center. Refreshments provided by The Stratford at Beyer Park.

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Up-coming Lecture Dates

Drop by and say hello…these are my Fall lecture events:

 

Sat., Sept. 20 at 1:30 pm

Basically Books

160 Kamehameha Ave., Hilo, Hawaii 96720

I will be on a panel with other authors to discuss memoir writing based on Writing the Hawai’i Memoir by Darien Gee

Contact:Christine Reed

808-961-0144, Fax: 808-935-1553

Toll-free: 1-800-903-6277

bbinfo@hawaiiantel.net

www.basicallybooks.com

 

Wed., Sept 24: Hilo Hawaii @ 5 p.m.

The Art of Caregiving…

Hilo Alzheimer’s Association

County Office of Aging: Kinoole St.
Contact: Chris Ridley: 808-443-7360
Mon., Tues., Sept 29 & 30: Honolulu HI

Hawaii Pacific Gerontological Society 18th Biennial Conference: Imagine 2030…Mobilizing

Our Communities Across Generations.

My session: The Future of Caregiving: Writing and Poetry to Preserve Our Humanity”

Hyatt Regency Waikiki Beach
Tues., Oct 7: Honolulu HI

Kapoho, Memoir of a Modern Pompeii

15 Craigside, 3:30pm

Contact: Cookie Nakai: cookie.nakai@15craigside.org

 

Fri., Oct 17: Leeza Gibbons radio Talk Show: Leeza’s Care Connection

Poetry and Caregiving

Time: 10 – 11 a.m.

 

Mon., Nov 17: San Mateo

Kimochi: 453 North San Mateo Dr

Time: 1 – 2:30

Title: I Am Somebody: Dignity in Caregiving

Contact: Liz Bissell (650-346-0849)

 

Tues. Nov 18: San Francisco

San Francisco Family Caregiver Alliance

1715 Buchanan St San Francisco

Title: I Am Somebody: The Art of Caregiving

Contact: Fumiko DiDomizio (425-931-2294) ex.127

 

 2015 ( Details to follow )
Maui

May:

Tri-Isle Resource Conservation and Development Council. Inc.
Kahului, Maui
Executive Dir: John Tomoso

November:

Maui County Office of Aging

 

 

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“Dear Frances…” Hawaii Herald Column (June 20, 2014)

Here is an excerpt from my “Dear Frances…” column in the Hawaii Herald newspaper from last month. For my newest column every month, be sure to get your copy of the Hawaii Herald by subscribing.

Dear Frances,

I’m taking care of my mother, who has Alzheimer’s. My sister and brother live out of town and criticize many of the things I do when they come to visit. How can I get them to understand and help me out?

Sally
Honolulu

Dear Sally,

I find this common among many families, so I’m going to address this to out-of-town siblings: Become a pillar of support. This means, do not give advice to or judge the primary caregiver. Their job is all consuming and they are doing the best they can.

Unless you live with the person being cared for, you will not know what caregiving encompasses. Telephone conversations with loved ones reveal very little because of social graces. My mother had a standard conversation:

Okasan: “Hello . . .”
Caller: “Long time no see. How are you?”
Okasan: “Oh, I’m fine.”

This conversation did not give a clue as to where she was in the stages of the disease, nor the demands being made of the caregiver. Asking questions requiring very little memory tells us hardly anything about the state of their dementia. For example:

Caller: “Did you have breakfast?”
Loved one: “Yes.”
Caller: “How are you doing?”
Loved one: “Good.”
Caller: “What are you going to do today?”
Loved one: “Oh, not much.”

Do not judge so easily that the caregiver is exaggerating because the loved one sounds so normal on the telephone. To find out what’s really going on, spend a few weeks, or even months, with your loved one without the primary caregiver in the house. Find out for yourself by taking on the role of primary caregiver.

Before visiting, please check to see what dates are best for your loved one and his or her caregiver. There are schedules and appointments and unless you are able to take care of these, your visit needs to be coordinated with the caregiver — not made at your convenience. We need to respect the world created by the caregiver and the loved one.

If you are unable to become an active caregiver, there are many other ways you can help. Ask the caregiver about:

• Finances: Contribute your share of expenses.
• Household: Pay for someone to do house cleaning or to take care of the yard.
• Carpentry: Work to make the house safe and Alzheimer’s-friendly.
• Express and show gratitude: For example, give gift cards for restaurants, massages, manicures, etc.
• Join a support group to learn about the disease and the demands it places on the caregiver so that you will have a better understanding of the situation. Educate yourself about the disease and its symptoms so that you will be able to converse on the same wavelength.

This is now addressed to you, the caregiver: Be honest when you are offered help. Asking for help does not mean that you are not the perfect caregiver. We often feel that others will not be able to give care like we do because of the structure and schedule we have established.

I often felt that it was too much of a bother to explain to someone else how to give care to my mother because she was so used to me. There are many ways of giving care, as long as no one is hurt or mistreated. When a sibling helps with caregiving, try to get out of the house; ideally, take a vacation when they’re visiting. Write out the schedule for your siblings to follow, as change will confuse the one being cared for. A list with the following information will help:

• Physician’s name, office phone number (cell, if available) and address
• Names and phone numbers of people who may have to be called upon in the event of a crisis (plumber, electrician, medical personnel, neighbors, friends, etc.)
• Shower/bath time
• Meal times
• Outings
• Favorite foods, TV shows, music and activities.

Both primary and out-of-town caregivers: Not everyone is cut out to be a caregiver, so be honest if you feel that you cannot handle the demands of being a caregiver and give help in other ways.

Aloha,
Frances

Dear Frances,

My husband was just diagnosed with Alzheimer’s. I’m at a loss, and I’m scared. I know there is so much mis-information. Where do I begin to obtain good information? What kinds of meds? How do I make our house Alzheimer’s friendly?

Roberta
Hilo

Dear Roberta,

Whoa! One day at a time. One need at a time. We need to progress with his needs as the disease follow its course; otherwise, we will be overwhelmed and frozen with stress.

To begin with, your husband’s neurologist is the best source for all of your medical questions.

For information: Put together a list of your concerns and visit the Alzheimer’s Association office in your community. They can direct you to the right resources. If you cannot get through the neighbor island numbers listed below, call the Honolulu office for information.

Hawai‘i Alzheimer’s Association Contact Numbers

Maui: (808) 242-8636
Hilo: (808) 981-2111
Kaua‘i: (808) 245-3200
O‘ahu: (808) 591-2771

The National Alzheimer’s Association contact number and website are: 1-800-272-3900, www.alz.org. Call them for help.

Another good source is the Eldercare Locator, which you can reach by calling 1-800-677-1116, or visiting www.eldercare.gov. Eldercare Locator helps families find resources and services in their own community (home care, adult day care and nursing homes). Eldercare Locator is a public service of the U.S. Department of Health and Human Services’ Administration on Aging.

If there are support groups in your area, consider joining one, for it is here that you will not feel alone. You will learn how others are resolving some of the same problems you are facing. When I joined a support group at the Alzheimer’s Association, there were caregivers with loved ones at all stages of the diseases. That gave me insight into what to expect on a general level. I say “general” because there are individual differences in how this disease affects each person. Caregivers are very creative and these support groups are filled with them.

Most of the Alzheimer’s Association offices have a library. Here are some book titles that may be helpful:

• On Alzheimer’s disease: The A to Z of Alzheimer’s Disease by Carol Turkington and Deborah Mitchell
• On caregiving: The 36-Hour Day by Nancy L. Mace and Peter V. Rabins; and my books, Mosaic Moon and Breaking the Silence
• On Alzheimer’s and children: Getting to Know Ruben Plotnick by Roz Rosenbluth, and my book, Wordsworth Dances the Waltz
• On legal issues: Long-term Care: How to Plan & Pay for It by Joseph L. Matthews

The local libraries probably have these books on their shelves, too.

Remember: Take a deep breath . . . one day at a time.

Aloha,
Frances

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