Teepa Snow Talks to Caregivers

Snow, a rare occurrence in Seattle, appeared on March 7. Beginning in the early morning, flakes of white blanketed the landscape. Soon afterward, another Snow landed in town, Teepa Snow, to be exact. Both snows were brilliant, stunning in their own way.

Teepa Snow is a dementia expert, par excellence,  At the March 7 event at Shoreline Community Church,  the nationally renown speaker deposited her words of wisdom on an audience who included adult children, spouses of people with dementia, and professionals working with seniors.

Delivering her talk with humor and warmth, Teepa gave some great advice for those caring for people with dementia.  First, empathize with the loved one who is facing loss.  For example, if a loved one is no longer safe to drive, begin by saying something like, "I know this is really hard.  It just is.  It feels unfair.  You're not going to like it and neither do I." Then edge into the safety idea with something like, "Right now we have to be safe, and driving isn't safe.  So for right now we're not going to drive."  The "Right Now" idea can be used with other losses such as moving to assisted living.

Regarding words, when dementia damages the prefrontal cortex, the brain loses the sound of hard consonants but keeps the sound of vowels.  Nouns are more difficult or impossible to understand.  So how do you speak to someone with dementia?  "Limit the number of words you say.  Slow down and shut up," Teepa says.  "You can go back and forth with words. Speaking with rhythm is good."

 Chit chat in response to a question:

 'Do you like milk?'
 'Yes.'
.'And what about cookies?' 
 'Of course.' 

Cheepa adds:  Allow your verbal cues to follow the visual, such as, in this example, offering a glass of milk or cookies as you speak.

Another interesting concept Teepa explained was dividing behavior into three categories:  annoying, risky and dangerous.  Eating too many sweets, something people with early dementia often do, isn't dangerous, unless the person is a brittle diabetic.  But it certainly can be annoying, unless the caregiver realizes that his or her loved one is reaching for the sugar to fuel his or her brain.  Categorizing behavior can help the caregiver cope or even ignore the annoying while protecting the loved one from the dangerous.

On Snow, Aging and Grief

"Snow.  It's taking over the world."   Lincoln, my six-year-old grandson, used those words two days ago to describe the scene before us.  Eight inches of snow in a week and more coming.

"It's all about snow," he said.  In Seattle snow closes schools, shuts down church services and slows traffic to a halt. Because we seldom see snow in volumes, and because we have so many hills to navigate, we can't cope.

Have you or a loved one experienced a personal snowstorm?  A debilitating accident, a lingering illness, a strained relationship or the death of a loved one?  If so, you understand.  That loss grinds life to a stop, and seems insurmountable.  Like my grandson, you may say, "It's taking over my world."

As we age, our losses can pile up like four-foot snowdrifts, laden with grime that can leave our hearts cold to the world around us.  That's true of us, of our friends and of our aging loved ones.

So what do we do about those losses?  Each of us has unique ways of handling grief in its many forms, and compounded grief, which cuts even deeper.  A few hours after I started this post, I learned that a dear friend Lupe had passed after a long bout with cancer.  Another friend is battling ALS.  So as I think about grief and share ways of dealing with it, I'm talking to myself.  The caveat is I'm not a grief counselor, just a woman slogging through life and trying to make the best of it.

Here are possibilities for dealing with grief:

1.  Slow down.  When grief is fresh, we can go into anxiety mode.  Long term, that doesn't help.  The quicker we can cut extras out of our lives, the better.  Taking advantage of the slower pace allows our bodies to begin to heal.  Yesterday when I learned about Lupe's passing, I was a basket case.  Mrs. Anxiety, with a to-do-list way longer than my strength.  My first mode of attack was to take a nap.  I slept  enough to calm myself.

2.  Identify the "snowstorm."  Is your grief anticipatory as you see your loved one changing due to chronic illness?  Or are you grieving the loss of abilities you used to have?   Or is losing a life mate or dear friend leaving a hole in your heart?  Or maybe you've lost a dream.  Perhaps it's all of the above and feels like an avalanche has hit you broadside.

3.  Decide how you will proceed to navigate the loss.  Reaching out to others is always good.  I've participated in caregiver support groups which are amazing in helping people shun isolation and connect with others.  As people share, they often say, "The grief is still there, but it's not as intense, and I don't feel alone."  Other ideas:  sharing with a friend, going to a grief support group, walking or doing other physical exercise, reading, putting words on paper.  Still other ways to combat grief are baking special recipes, planting trees in memory of your loved one and of course participating in a memorial service.  Do what works, and you'll find more ideas.

4.  Turn to God in prayer.  When grief snowballs, I read the Bible, specifically the psalms.  David spills out his pain to God in what are called Psalms of Lament.  They are raw and unpolished.  David rails over the injustices of life:  inequality, sickness, conflict in his country, etc.  Despite grief and pain, David knows that God is holding Him, and the world, in His hands.  And God will care for us, too.

Book Review: Reaching Beyond the Rail: The Blood, Sweat and Tears of Caring for Mom and Dad

Book launches are a hoot for me.  And the one last November at Shoreline Community Church was no exception.  Sue Stults, author of Reaching Beyond the Rail:  The Blood, Sweat and Tears of Caring for Mom and Dad" stood before her audience beaming.

Sue is a patient care advocate and founder of Compelled by Compassion. Since her mother and father's passing, she has used what she learned as a caregiver and from other sources to help others through workshops, support groups, one-on-one mentoring and counseling.

I'm always fascinated by book titles.  Reaching Beyond the Rail refers to the close relationship adult children and others forge with their loved ones.  Caregivers reach beyond the rail--of the walker, of the wheelchair, of the hospital bed--to provide sustenance, care and support.  But what about the caregiver's needs?

The book aims to answer the question,  "What will you do when your loved one becomes ill, or when your aging parents need you to help care for them?"

Stults' 373-page hardcover book dovetails with her previous title, "The Personal Health Care Manual"  which encourages caregivers to be proactive, gathering specific information in a binder for future use.  That information includes doctor's names and phone numbers, insurance information, medication list, recent physician's notes, power of attorneys, etc.

This new book has a lot of solid emotional advice, such as "Your parent never deserves shaming, scolding or harsh discipline." And,"One way to be an intentional and active listener is to watch your parent's facial expressions as they talk about their day."

All in all, the most important task when dealing with an aging parent, is to provide respect, honor and dignity.

Sue also has a "quiz" of sorts, in which she asks readers to list the various challenges their loved one faces.  As time goes on, she suggests they revisit the list and make changes, placing the challenges in order of difficulty, from the most difficult to the least difficult.

One mantra running through the book is "Eat, sleep, and breathe."  If caregivers get so tired they can't do these things, they can run aground.

Another interesting section involves the grief that we all face in life.  In Sue's"Grief Timeline, she asks people to list their significant losses in chronological order, periodically examining the list to see which are still sparking pain and which seem to be resolved.

This is a good read that should help many in their journey through caregiving.  You can purchase the book through Compelled by Compassion.

Sue Stults, Reaching Beyond the Rail

Faith at Life's End: Dealing With the Ups and Downs

Faith at life's end can blossom, or it can flicker.

For Karl Krienke, faith was his firm foundation.   Listening to the speakers at his memorial service a week ago, I couldn't help but pick up that theme. A professor emeritus, he taught at Seattle Pacific University for 44 years in physics, mathematics and computer science. He earned a doctorate in astronomy and felt confident that discovering the universe brings us closer to the Creator.

Ordained as a minister in the Free Methodist Church, he combined theology with his love for science and astronomy.  At one point he said, "We are in the process of discovering God as greater than we even envisioned before."  That faith carried him to the end.

Faith, for others, though, is difficult at life's end.  The minister who delivered the sermon at Karl Krienke's funeral spoke of his mother's fear she had lost her faith.  She had served God faithfully as a missionary in India for years, and had devoted her whole life to God.  But at the end, she doubted herself and wondered, "Will I go to heaven?"

"I just can't hold onto God," was how she expressed her uncertainty about the future.

That angst about being worthy enough to go to heaven isn't uncommon among those who were raised in the early to mid 1900s in conservative churches.  A brand of Christianity banned certain practices such as drinking, dancing, wearing jewelry, playing cards, etc.  The emphasis was on works; and the insinuation was that doing or not doing certain things proved you were a true Christian.

My father was raised in that culture.  In his last days, he agonized over his eternal destiny.  "I don't know if God can forgive me," he would say.  No, he hadn't committed the unpardonable sin.  Not even close.  He was a Christian pastor who had worked tirelessly in helping people understand and live the Gospel.  Somehow now he was stuck on his unworthiness.

It broke my heart to see him suffer so.  I prayed for guidance in what to say, besides "I'm so sorry."
After I finally got up the nerve to speak, I said, "Daddy, do you remember what you told us so many years ago about God's love?  That God loves us no matter what?"  I promised him that every time I spoke with him I would remind him of God's love.

And what about the elderly missionary woman who was sure she lost her hold on God?  I'm sure her son thought a bit about what to tell her.  He said, "I know you think you can't hold onto God.  I want you to know something.  God is carrying you, holding you tight, and he won't ever let you go."

Eldercare Q-A: Assisted Living, Memory Care, Which does Dad Need?

A client is asking:

My 85-year-old dad has been healthy until now.  He's beginning to shuffle which I know can be a sign of Parkinson's or Alzheimer's.  His  younger brother has Alzheimer's and lives in a Memory Care Community.  Dad hasn't been eating, he no longer drives and he lives in an isolated community near a mountain pass.

I want to know:  What's the difference between assisted living and memory care?

My answer:  

In Washington State, assisted living communities, including memory care communities, are authorized by law to do heavier care than in most states.  However, the level of care here varies.  Here's what I mean:

Light to moderate care assisted living--These communities focus on activities and provide light care such as medication management, help with bathing and dressing, and cueing.  Residents with dementia can live here as long as they have no behaviors which would potentially endanger themselves or others.  No exit-seeking, wandering into other resident's apartments, or socially inappropriate behavior.  In addition, these light to moderate care communities usually can't care for people who need a lot of help in the day or night.  If a person has a diagnosis of dementia, they might need to move to memory care in another building later. 

A building with both assisted living and memory care in the same building.  This type of building has separate areas for assisted living and memory care.  Alternately, there are two buildings--and two programs--side by side on the same property.  The memory care residents have a program specially designed for their needs.  It is a quieter setting with higher staffing than in assisted living.  It is secure so residents can't leave the building.  In memory care residents are able to receive care that includes feeding and behavior management.  People often will move into the assisted living area and move to memory care when their dementia advances.  

Stand-alone memory care communities--A resident in this type of community must have a dementia diagnosis.  Generally residents have varying degrees of dementia. Some are pleasantly confused.  Others have significant dementia.  Like other memory communities, and many assisted living communities, residents can generally stay through end of life. 

A little complicated?  I sent this brief explanation with examples to my client so we can discuss which type of community he would prefer.  Families have different priorities.  Some absolutely don't want Dad to move twice.  Others want a great fit now and if necessary will move Dad later.  Touring several communities may help spotlight the one that works best.

What experience do you have with memory care?  Has it been positive?

Eldercare Resource: 'Nancy's Lifts' does more than give rides to seniors.

Nancy Balin, owner of Nancy's Lifts

Nancy Balin owns a business, to be specific, a transportation network company.

It's called Nancy's Lifts. She drives seniors and others to places they need to go:  doctor's offices and hair stylists, meetings and outings. And even to the airport.  Many of her clients are debating on whether to give up driving altogether or to adapt to a new lifestyle that requires minimal driving, so they are relieved to have as an alternative a safe, known driver like Nancy.

There's more to this story:  a year ago Nancy worked as a lawyer while heading a fledgling not-for-profit organization called Family Jewels Foundation.  Its mission was to save young men's lives by alerting them to the symptoms of testicular cancer, the number one cancer in the 15 to 44 age group.  Nancy had been personally affected when her 20-year-old son died of the disease.  Early detection likely would have saved his life.

Speaking about testicular cancer and fundraising for her foundation  takes lots of time.  So Nancy retired from the lawyering and launched the driving business, to help pay the bills. 

First she passed an extensive  defensive driving course, got her business license and met the other state requirements.

Why do her clients--seniors and others--choose her?  Nancy has lived in the Bothell/Woodinville area--her main service area--for over 15 years. She is well acquainted with Western Washington.

"I'm local. I know how to navigate.  I speak English well, and I have references," she says.

"I have elderly parents.  So I treat my senior passengers like I'm driving with my parents."  That means reminding them about packing the C-Pap Machine, their ID and their medications.  It means Nancy putting the belongings and luggage into the car herself.  It may mean pulling the walker out of the trunk and escorting the senior into the doctor's office instead of dropping them off at the curb.  

Often her passengers will ask her about the rest of her life, and she says, "I'm doing this to help me be able to save young men's lives."  She often asks people, 'Do you have any males in your life ages 15 to 44 whom you care about?' Many of them do."  So Nancy educates them about testicular cancer, in the hopes that their families won’t have to suffer the way hers has.

Nancy is giving seniors and others a lift while working to save the lives of young men.  For more information about Nancy's Lifts, call 206-550-9570.

One Woman's Story: For the Love of Dad, She Did the Near Impossible

'Tis the season for cheerleaders.  Not always the ones waving pom poms and working the crowds at football games

Take a Boomer named Dianne.  A week ago she called me in a panic.  Her father's significant other had died just two days earlier.  Dianne's dad had dementia, and she was his only living relative.  She'd already been riding a roller coaster of emotions in the light of the recent loss when she found an elderlaw attorney a few days later.  The attorney gave Dianne my name and I found myself helping her sorting out the details that would put her dad's life back together.

1.  Step One:  Finding the money for her dad.  Dianne wanted to find an adult family home for Dad within an hour's drive of her home  But how to pay for it?  All she had was a checkbook, and credit cards with debt.  She needed a current bank statement.  And her name wasn't on the account.  So she went to the bank and pleaded their case.  Her dad was able to tell him this was his daughter and he wanted her to handle his money.  One down.

2.  Step Two:  Finding a new home.  With an accurate statement of assets--a bit more than Dianne had thought--and a statement of monthly income, Dianne was able to approach the adult family home that I had helped her find.   She and her dad visited the home and met the residents--all men.  And Dianne's dad struck up a conversation with one of them.  They liked the home.  Best of all, the owner would allow him to convert to Medicaid funding after six months.  The owner contacted the doctor and began arranging for admission.  Two down.

3.  Signing the power of attorney.  That document was needed for Diane to assume responsibility for her dad's move-in and other financial, legal and medical matters in the future.  So she set an appointment with the elderlaw attorney she had talked to a few days earlier. Her dad was losing competency, but knew her and could agree in front of the lawyer that he wanted his daughter to take care of him.   Three down.

What an amazing daughter!  She should be named "Daughter of the Year!"  Her dad will move into his new home in two days, and the whole process took eight days from start to finish.   I'm so impressed and proud to have been part of her team.

Silver Age Referrals: When High Tech and High Touch Meet, Families Win

What does a great database have to do with helping find the best assisted living and adult family homes?  What does an amazing database do for people searching for what could be their loved one's final home on earth?

Plenty. At Silver Age Housing & Care Referrals, where I work, we have a team of professionals who love to help families.  While our primary job is to work with people finding housing and care, we bring to the work an incredible array of skills and experience including occupational therapy. caregiver support, administration, finance and marketing.   We share information.  We help each other as we work with families in King, Snohomish and North Pierce Counties.  And all of us
have personal experience with helping our family member or members with a difficult transition.

Did I forget to mention our extra team member?  It's a super database, without which we'd be lost, frustrated or at the very least hampered in our efforts.  And while the database isn't human, it gives us the information we need to seem superhuman.

In King County alone, there are 1100 adult family homes, plus several hundred assisted living communities.  We're able to update records on our 600-plus partnering organizations, and search for so many categories.  We can find an adult family home in Bellevue where caregivers speak Japanese.  And other homes with experience in Huntington's Disease, Multiple Sclerosis and more.

We know which adult family homes can take Medicaid funding immediately.  I wish there were more!  And homes that take Medicaid after a certain number of months or years.

It's so gratifying for us to find just the right fit for a person's unique needs.  Even if someone has the same diagnosis as another client, they each have a different combination of needs.  This summer we celebrated 10 years of serving seniors, and we are still finding this to be true.

How did we get such an incredible database?  Our owner, Abby Durr, founded Silver Age in 2008.  After a year or two of working with spreadsheets, she realize she needed something more sophisticated to track all the vital information.

Hence the fancy data base.  She got some help, big time, from her husband, an IT specialist.  We like to call him our 12th Man. And while the work of Silver Age is high touch--we meet face to face or voice to voice with people whenever we can--the high tech feature can't be beat.

Senior communities: For profit? Not-for-profit? The Kenney tells the story well.

When it comes to eldercare, be it retirement and assisted living  or home care, many people choose the not-for-profit model.

I'm on the Board of Directors for The Kenney, a continuing care retirement community in West Seattle.  I've also been employed by three other not-for-profits since I began working in the eldercare field in 1994.   Here's what I've discovered:

What sets not-for-profits apart?

1. Not-for-profits are mission-driven and accountable to the community at large. Many are connected with a church or a hospital, and their responsibility to the broader community is well defined. Their tax exempt status presupposes the practice of "giving back." That's certainly true of The Kenney, a faith-based community.  If residents run out of money, or outlive their money, a benevolence fund through The Kenney Foundation may be available to help them pay their monthly fees.  This allows them to stay and continue to live a purposeful lifestyle.  The Kenney also gives back to West Seattle.  Groups including the West Seattle Pastors Group, Tiny Tots and West Seattle Chamber of Commerce meet here regularly. The Kenney Foundation will soon be sponsoring a fundraiser for veterans.

2. Corporate investors don't set the organization's policy. Boards of directors, who are community volunteers, work with management and administration to make the key decisions which are in line with the community's mission. At The Kenney, as in other not-for-profits, board members are experts in their respective fields of finance, education, health care and ministry.  Another difference: extra dollars go, not to stockholders or owners, but back into the organization, to improve staffing ratios, train employees and build innovative programs that make seniors smile.

2. 3. In general, not-for-profits do a better job of retaining their high quality employees. I've watched the senior communities I've worked in do many things--big and small--to attract excellent caregivers and other employees and to keep them. In-services, scholarship opportunities and specialized training build staff morale and increase tenure. So do simpler things like the monthly staff meetings where all departments can set common goals and celebrate those with five years of service, ten years, etc.  At The Kenney, many staff in the dining services and caregiving staff have worked there more than 15 years.  The Kenney has a staff member celebrating 34 years of service this month!  The big plus?  She knows every resident by name.

For more information on not-for-profit eldercare organizations, contact their national association, Leading Age.

Certified Senior Advisors Offer Ethics Plus Knowledge to Their Clients

"Are you a nurse?"

I'm asked that question from time to time.  My answer:

"If I were a nurse, all the patients would die the next day."

I have a fair amount of medical knowledge, most of it acquired through osmosis by working in a nursing home for 12 years with seniors and their families.  But I'm not a nurse.  I have great respect for nurses, though, and I work alongside of them as our company Silver Age Referrals  helps families find assisted living and adult family homes for their loved ones.

I'm not an elderlaw attorney, either, yet I refer people to those experts in the law on subjects including Medicaid.  Neither am I a physical or occupational therapist, yet I know how valuable these professionals are to what Washington law calls "vulnerable adults."

From the organizers/planners, to the Realtors specializing in working with seniors, to the Geriatric Care Managers who oversee the care of elders on behalf of families, professionals helping seniors run the gamut. 

In the best of worlds, we work together, pooling our skills and expertise to benefits seniors.

If my client needs help I can't provide, I refer to a professional.  But how do I know that this person will have, in addition to knowledge and expertise, the ethics needed to work with "vulnerable adults" and their families?

One helpful factor is the CSA alongside the professional's name.  That stands for Certified Senior Advisor.  It means membership in a national organization called the Society of Certified Senior Advisors.

Members study and pass a test on a broad-based curriculum that includes senior-related topics including:  Trends in Aging, Physiological Changes in Aging, Mental Health, Grief and Loss, Caregivers and Caregiving, Chronic Illness, Cognitive, Aging, End of Life Planning, etc.  There are also segments on Estate Planning, Financial Choices, Long-term Care Coverage, etc.

The organization requires continuing education, as well.  One of the most important aspects of the Society is its strong emphasis on ethics.  If members get into trouble ethically, there's a process which can lead to censorship or ousting from the organization.

I'm delighted when I can refer to a professional who is a CSA.  Not because they're perfect, but because they know how to treat seniors and their families ethically.  They know how to do the right thing.