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DearFrancesThe Hawai‘i Herald newspaper has a beautiful new website so now you can read my complete column online! Here is a condensed excerpt from this month’s column. For my complete reply, please read the column at the Hawai‘i Herald website. For my newest column every month, be sure to get your copy of the Hawaii Herald by subscribing. To visit my column archive on their site, click on my new “Dear Frances” logo to the right.

 

Dear Frances,

I’m not a caregiver, but will probably need one in my old age. Is there anything I can do now to not become a burden to my children or husband?

Helen
Kaua‘i

 

Dear Helen,

How wise of you to have such foresight. Yes, here are a few suggestions.

On Promises: Do not ask your family to make promises for the unknown future. Many caregivers live with remorse and guilt when their loved ones need to be placed outside of their own home because of promises made, such as: “Promise me you won’t put me in a nursing home.”

We cannot foresee the future. Oftentimes, nursing facilities become the only alternative due to the condition of your loved one. To leave your voice, saying you want to always remain at home may create additional grief and guilt for your family members. Why not lessen the trauma of putting you in a nursing facility by giving them permission to do whatever seems right and appropriate?

We need to be openly free and unafraid to discuss these possibilities before care is needed.

My mother and I had this conversation often in a very playful way. Yes, discuss this in casual conversations to ease the way into a subject that is a natural part of life.

Okasan: When I get old, just put me in a nursing home and you don’t need to visit me.

Me: Naah, I’ll take care of you at home. If you’re nice, I’ll give you nice warm baths. But if you get nasty, I’ll hose you down with cold water in the garage for your baths.

Laughter.

Yes, we teased and laughed a lot about her later years, but the message was clear: She gave me permission to put her in a nursing home, and when the time came for that placement, I recalled with gratitude, those conversations. And it was very OK for both of us.

On Funerals and Services: It relieves family and friends to know your wishes in advance. Do you want to be cremated? If you wish to have services, name the church of your choice. I know of people who have made all of their arrangements, right down to catering services. One creative woman had her own funeral services while she was still alive — it was a celebration of her life among family and friends.

On Advance Directives. If you have not made an advance directive, I strongly suggest that you get this done. An advance directive is a written statement about your future medical care. It is a gift to family members and friends so that they will not have to guess what you want if you can no longer speak for yourself.

These two websites can give you more information on health directives.

POLST — Physician’s Orders for Life-Sustaining Treatment — is a physician’s order that gives patients more control over their end-of-life care. It specifies the types of treatments that a patient wishes to receive towards the end of his or her life.

The Kōkua Mau website has the updated Hawai‘i POLST form that was amended during the 2014 legislative session.

A video on end-of-life care made by Kōkua Mau is also available on this site. My mother and I appear in it!

Here’s a little background story on the making of this video. The staff at my mother’s nursing facility was told that we were coming to do this video. When we arrived, the aides had painted my mother’s nails bright red and her face was made up like a woman of the streets. We had to scrub much of the makeup off and find alcohol to rub off her nail polish. They even had a tiara in her hair. They saw her as a movie star. I was deeply moved at what the ladies had done.

Take care,

Frances

sunflowersI love it when there’s that special one who “listens to its own little drummer.” Note that sunflower facing away from the sun.

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:

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

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

Aloha,
Frances

lst sunflowerAh Nature…so full of surprises. Got up this morning to the first bloom. So Tyler of Montana, look, look, your sunflower seeds are bringing such joy to us in CA.  For those new on this site, last summer my sunflowers were “stolen” and 6 year old Tyler of Montana heard about it from his grandma and asked her to send me seeds from his blossoms.  Thank you again, Tyler. Hope to meet you  and your grandma someday.

photo-4

 

Dear Tyler of Montana:

I planted those seeds you sent me and look how they’re growing. Every morning I think of you when I awake to each  plant reaching a few more inches closer to our California sun.

 

Dear Evan of  Hawaii:

How dost your sunflowers grow? It won’t be long before  our sunflowers will all be in bloom, Tyler’s, yours and mine..All under one hot summer sun.

Wheeeee!sunflower before bloom

Evan’s mom sent the following. Remember Evan, the little gardener planting his sunflower seeds. His seeds have popped out of the ground!

“We have these wild roosters and hens that like to come into our yard to eat the mulberries from our tree.  In the past week, we noticed that they had chicks. There are two hens so two  sets of chicks – 9 dark brown, and 5 light brown.  Evan was really excited as he saw them following their mom. He noticed that there’s one that’s  always left behind,just like in the cartoons.  He went to get his binoculars so he could get a closer look.  As he was watching them he also spotted a mongoose mom and two babies. He called me to take a look with his binoculars. I was enjoying watching them, too. Evan got impatient and said, “ok it’s my turn now.” I didn’t give it back, and he then said, “Mommy, give my binoculars back, this is like National Geographic! Since you don’t let me watch tv and use my ipad today, this is my National  Geographic!!!”   I love it when he is fascinated by the simple things in life, right outside our window!  And this would’ve gone unnoticed, if his head was buried in the ipad or tv. “

 

I rest my case, your Honor.

Evan and seeds

Dear Tyler of Montana,

Evan here is in Hawaii and he’s planting the sunflower seeds you sent me. He told his mom that he needs to talk to the seeds to give them extra CO2. A few days later he asked his mom to yell at the seeds to help them grow. He doesn’t like to yell at people and things so would she do that for him? A few days later, the seeds all popped. He is so excited. My friend Red told him, sunflower seeds are not deaf and they can hear whispers. My sunflowers are over 5 feet high in Sacramento, Tyler.

I wrote this poem and it’s not about you or Evan. It’s about all those children who never planted a sunflower seed.  You both hold a very special place in my heart.

 

To Children of the 21st Century

 

How do you keep your fingers so free of dirt?

How do you come in from play without

Mud on your feet, your clothes, your cheeks?

How do you not even sweat?

 

How do you live without giving eye contact

To the person sitting in front of you?

How do you spend time with your friend

Without conversation?

 

Oh Children of the 21st Century,

Why is there silence in a room filled

With family on this holiday?

How did you become so mute?

 

Do you know how rain feels

Soaking your shirt to your skin?

The smell of sea salt in your hair

After a dip in the sea?

 

Have you watched a little seed

Pushing its first breath

Out of soil you’ve patted down

A few weeks ago?

 

Can you see a cardinal, a mynah,

A crow, with your eyes closed, listening

To their signature songs they sing out to you

In your own back yard?

 

Do you know the feel of your grandpa’s hand

Warm and strong in your hand?

The story behind that long scar that runs

The length of his arm?

 

Do you ever count clouds, lying

On soft green grass, laughing

Over silly stuff shared with a friend?

Do you ever cry over a child starving

 

In Africa or in your neighborhood?

Feel upset over trees being cut

For freeways and shopping malls,

Fancy sports arenas?

 

Have you ever used the eraser

At the end of a pencil,

Writing a poem, a song, a story.

A thank you note?

 

Do you know the feel of crisp

New pages of a book, as they unfold

Moving plots, faster than your impatient

Fingers can follow your eyes?

 

Oh, Children of the 21st Century,

Forgive us, for what we have done.

 

© Frances Kakugawa

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