Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
When you were a caregiver, how did you keep upwith all of the information that’s out there?
I attend conferences and health fairs and pick up allthe brochures, but never get around to reading them because I’m so busy caring for my husband. I’m won- dering if I’m shortchanging both of us by not keeping up with all the current information.
When I was a caregiver, I had neither the time northe energy to read much of the literature that kept coming at me from the so-called “experts.” I went to my mother’s physician and my support group at the Alzheimer’s Association for all my information.
Keep in mind that research is ongoing and informa- tion is constantly being updated — it’s always “in progress,” so I saved only those that could be of help to me later, such as the names and phone numbers of agencies. Even these become obsolete in time, so it’s best to work through your physician and her or his staff. In an earlier column, I listed a few websites, such as eldercare.gov and phone numbers for Alzhe- imer’s offices, locally and nationally.
An article in today’s newspaper carried a promis- ing headline about Alzheimer’s. I read the last para- graph first and discovered it was all in the testing phase, so it didn’t warrant my reading glasses.
Each caregiver’s situation is unique, so generic information often needs to be sieved and adjusted to our individual needs. So, yes, do not add to your stress by thinking you are less of a caregiver because these brochures are left unread. Return to the essence of your loved one’s needs, along with your own needs. Read what has meaning to you at that particu- lar time and place.
Only one who is actually giving hands-on care to a loved one understands that the demands of caregiv- ing often leave room for nothing else.
I tried to capture this in the following poem:
ERASABLE PENCIL #2
How’s your mother?
Is she sleeping through the night?
Is she taking her Aricept daily?
Is her Health Directive in order?
Her Living Trust? Who has Power of Attorney?
How’s her appetite?
Have you thought of Adult Day Care?
Have you looked for possible nursing home care? Has her bedsore healed? Are you turning her over nightly?
Hello, this is the social worker. I still need to have the forms back.
This is all confidential, of course.
Hello, this is Medicare. Please call back. This concerns a wheelchair.
Hello, this is Medicare. Medicare doesn’t cover your last visit.
Hello, this is your insurance company. Please call back.
Are you still taking her on walks?
You’re such a good caregiver. Your mother is so lucky. Will you donate to Alzheimer’s Research?
Did you make your next appointment for your mother?
Her blood pressure’s good. Everything looks good. Stop! Stop! Stop!
You don’t see me, do you?
You are vaporizing me
Right before your eyes.
When did you become
This giant eraser?
By the way, my name is Frances with an “e.”
— From “I Am Somebody: Bringing Dignity and Compas- sion to Alzheimer’s Caregiving”
I strongly suggest attending a support group through the Alzheimer’s Association because this is where current and relevant information is issued and discussed. (Read on for a discussion on the value of sup- port groups.)
I attended your session on O‘ahu. I know you believe in support groups, as you have organized many of these, both in Hawai‘i and California. I’ve never at- tended one, mainly because I’m a very private person and am busy caring for my father who has dementia. Can you tell me what goes on in support groups?
Here are some stories from caregivers who attend support groups. The first happened when I was in Hawai‘i. What happened subsequently was handled with emails within our support group.
Caregiver Bob from Sacramento emailed the group about his wife, who, all of a sudden, could not walk and was not eating. They were sent home from the hospital emergency room without her being diag- nosed. As it turns out, she was not eating because each time Bob asked her if she were hungry, she replied, “No.” Bob was so worried he wasn’t getting any sleep.
Within hours, the caregivers in our support group stepped up to help him.
One shared similar symptoms that her mother had a year ago and suggested other avenues. Another caregiver sent him the names of agencies that could help him. Denise from the Alzheimer’s Association sat with him, offering free services. Mary, a caregiver from the group, went over to give his wife a leg and foot massage. Jill, who had previously been a caregiv- er, showed up at his house and said, “Go to sleep, I’ll stay with your wife tonight.”
Today, his wife is in adult care and Bob is using his engineering skills to renovate his house to accommo- date the changes in his wife’s condition.
To his wife’s refusal to eat, I suggested this — see if it works for you if you are having a similar problem.
Instead of asking your wife, “Are you hungry?” — tell her, “It’s dinner time,” and bring the food out for both of you, and eat your meal together. She may be at the stage where it’s difficult to process questions, so it’s easier to say, “No.” Try to refrain from question-and-answer conversations, as these may create tension and difficulty for your wife. It may be time for decisions to be made by the caregiver. Incidentally, Bob said this worked — he and his wife are now eating their meals together.
A week later, caregiver Mary’s husband fell in the kitchen and fractured his spine and suffered an injury to his head.
Bob delivered a commode to her after her medical center delayed delivery of a commode for her husband due to bureaucratic red tape. A wheelchair from our storage is also there for her husband’s use, and she is working with the Alzheimer’s Association to clear up the glitches in her long-term care insurance.
So, Lily, these are just two stories about the assistance support groups provide. Support groups are the source of the most helpful and knowledgeable information. Members come to the group with a wealth of problem-solving experiences. They come with names of agencies and their phone numbers. Attorney caregivers share their legal expertise. It is a place where you will not feel alone. The privacy clause keeps all discussions private — they are shared only with permission.
It is also a place where laughter joins our tears, be- cause we know and understand what it is to care for our loved ones — we have all been there. It is a place where we can be honest without shame or guilt.
The following is Bob’s reaction to his first visit to our support group.
I entered the Lemon Tree from the parking lot and guessed that the door to the right would take me to the group. I recognized Frances at the head of the table and knew this was the group.
It took me a year to muster the courage to join the group A year of self-doubts, what do I know about writing poetry
But the pains of caregiving was unyielding and relentless
I knew there was no other way.
I knew Frances from her blog and books and felt A kinship despite having never met her.
I looked around and saw the faces of wisdom, time, compassion and hope
I looked for men to share stories and quench My lonely journey, but there were none.
No matter, women are better listeners
And they are smarter than men
I sat down and soon began telling my story of despair Of the anger, resentment and hopelessness
I saw knowing faces and knew
I would no longer cry alone.
Bob Oyafuso, Aug. 29, 2014 — From “I Am Somebody”
The following sentiments are from Jody, who was in my first support group on O‘ahu. Her work ap- pears in three of my books on caregiving.
Instead of feeling isolated and depressed or overwhelmed, the sessions made us all feel like a mischievous group of compatriots, a secret and special society that grew to revel in our identities as caregivers. We shared this beautiful bond of compassion and even humor in our daily tasks, and we all experienced profound healing.
— Jody Mishan
From “Breaking the Silence”
In Hawai‘i, dementia-specific support groups are available through the Alzheimer’s Association – Aloha Chapter on Hawai‘i Island, Kaua‘i, Maui and O‘ahu. Call (808) 591-2771 for information.