Caregiver Help, Pt. 2: The Why and How of Respite

Are you a family caregiver?  Or related to one?  If so, you know about stress.  And you likely know how important it is to get a break from that stress now and then.  A respite could be your answer.

In the last post, I wrote about Barb.  She's a hard worker, to put it mildly, with employment outside the home, plus caring for her husband who has dementia.  She's a high energy, take charge woman, and she's a good friend.  But like all caregivers, she feels she needs a break, now and then.

Respite--a break from caregiving--takes several forms.  Sometimes it's a day a week when the loved one who needs care attends a day care program.  Other times it's for a longer length of time, when the caregiver is free to visit grandchildren, go on a trip, relax, or do anything they've been wanting to do but couldn't.

Barb is planning on flying to Iowa to visit friends in the area where she grew up.  Her husband will be cared for at home through a home care agency.  He is used to his home and his schedule, and their daughter, who lives nearby, will be part of the caregiving team during this time.

A respite can also be done in an assisted living community, an adult family home or a nursing facility.  It's often a two-week stay but can be as long as a month.  Sometimes the respite works so well that the family decides to transfer to move-in status.

Why is a respite such a good thing?  One family I worked with several years ago wanted Mom to have a temporary break from her eight-year-stint caring for her husband who had Parkinson's.  She and her four daughters put their heads together in my presence, and came up with a plan:  They all wanted to go to Vancouver, British Columbia, for a "Girl's Celebration."  Dad was quiet social.  I helped them find an assisted living community that would do respite.  He enjoyed the staff, the food and the camraderie.  The women returned refreshed, especially Mom, vowing they would do this again.

About progress on my book proposal for "Eldercare Journey:  Help and Hope for Your Aging Parent?"  I will turn it in by the end of next week.  And then there's the waiting and waiting.  Why did I compare this process to a marriage proposal?  Only because it's not a done deal.  The publisher can say 'No.'  We shall see.

Caregiver Help, Pt. 1: A Respite Stay May Be What the Doctor Ordered

Barb and I were cleaning sinks and toilets when we both thought thought of the same thing.  It's called respite.

We don't normally clean bathrooms within shouting distance.   But last week they were our assignment as we worked to help ready my mother-in-law's manufactured home for the upcoming sale.  Mom has moved to assisted living.

Respite is something Barb has toyed with for awhile.  She cares for her husband, who has dementia, and she also works part-time outside their home. Barb is also a great friend. A high energy woman, she's been carrying this load and wearing many hats for years.  Understandingly, though, she said it might be nice to take a little break.

Specifically Barb wants to connect with relatives and friends in Iowa, where she grew up.  Her husband's dementia puts him at risk for falls and confusion in strange places such as airport terminals.

As we talked, it became apparent that if Barb were to leave, say for a week or two, her husband would need the security of their home plus the safety of a caregiver.  A caregiver from a home care agency might be best.  Their daughter could sleep at her parent's home at night, and a caregiver could watch him during the day.

Barb is thinking about the respite idea.  I gave her the name of an excellent home care company.  She can inch into this decision a little at a time, by having an assessment with the Care Manager in her home.  She can discuss her husband's likes and dislikes,  plus his care needs.

If she goes ahead with the respite, I'm pretty sure she will be able to come home refreshed, sharing photos and memories with her husband and with her friends.

Coming up:  Another respite story with a different venue.  Also, a teeny report on my book proposal.  I have two publishers who have expressed interest.  And I have a lot of work to do to finish the next step.  Thanks for your support.

Rest, Rest. Rest. Great Words for Caregivers and Others

Rest. Rest. Rest.  If we repeat a word three times, it's not magic.  But the repetition helps us remember.

Are you caring for an aging parent, or possibly a spouse?  All the more reason to repeat that word--rest--and actually put it into practice.

The statistics on caregiver burnout are frightening

• 40% to $70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meeting the diagnostic criteria for major depression, according to Zant S. Assessment of Family Caregivers:  A Research Perspective.  
• Family caregivers experiencing extreme stress have been shown to age prematurely.  The level of stress can take as much as 10 years off a caregiver's life.  From the Proceedings of the National Academy of Sciences, Dec. 7, 2004.  

By resting--taking breaks, exercising, or whatever you do to calm yourself, you can help beat the odds.

We all have Achille's heels--areas of weakness that are prone to injury, disease or breakdown.  Some of us are worriers, borrowing trouble from tomorrow, which robs us of joy today.  I'll raise my hand to that one.

At one point my worry over my aging parents' health, especially Daddy's progresssing Parkinson's Disease, got so out of control that I asked myself, "What do I do?"  I had read about people breaking habits by wearing a rubber band on a wrist.  When a "bad" thought came to mind, the person would snap the rubber band to gently remind him or her to stop.  My rubber band experiment started at the beginning of Lent.  For 40 days my wrists got snapped multiple times a day. The pain was sufficient to get my attention, but not enough to torture me.  On Easter, the end of the experiment, I took stock of my thoughts.   I wasn't worry free.  The rubber band did leave an impression, though.  It awakened me to the extent of my worry.

I still fight it.  I do know that if I stop and rest, whatever rest may look like at the moment, I find peace and calm.

Rest. Rest. Rest

On Eldercare: A Few of My Favorite Days

"What day is my favorite on the job?

That's an easy question.  I work for Silver Age Referrals. I help families find the best assisted living communities, memory care and adult family homes that fit their budget, their desired location, and of course, the level of care their loved one needs.

I have two favorite days:  the day that culminates my work with the family to find a great home for their loved one.  That's move-in day.  My other favorite day is the day I visit that same new resident in their new digs.  They have been there a week or so and are often in the process of settling in.  My job that day is to bring them a move-in gift:  usually flowers, a potted plant or chocolates.

The reasons elders move to a new community vary.  Often they're no longer safe at home due to falls or rising care needs.  So they move to an adult family home or assisted living community. Or they're living in an assisted living community but their dementia is advancing and they need more caregivers who have special dementia training.  It's called memory care.

Take Anne.  I saw her in the room her family had decorated for her.  Pointing to familiar pictures, an afghan, a plant, and more, she was all smiles.  We took the elevator down to the first floor where we strolled to the garden area and walking path.  I helped her name some of the flowers.  Marigolds, zinnias, roses. That made her happy.

It's amazing how a good situation can calm anxiety and make elders feel at home.

These are two of my favorite days.

I'm going to propose...a book on eldercare! Am I scared? YES

In a couple of days, I'll be at the Northwest Christian Writers Renewal Conference, a two-day conference for writers.  I'll be at the mercy of an editor, who will tell me,"Yes, your book proposal on eldercare has merit, but there are no promises.  Continue to work on it." or "No, try something else other than writing."  No binding agreement, at least for now.  And yes, I'm a little scared.

A book proposal is much like a marriage proposal.  A writer puts heart and soul, hours and hours, into this package of papers that represents his life, or at least much of his life.  I've been working with families of seniors and seniors themselves for 25 years, helping them with transitions to independent living, assisted living, adult family homes and skilled nursing.  Along the way, I've met many heroes who sacrifice themselves on behalf their parents. I've also learned from older folks who despite their years, take their journey one step at a time, banking on the spiritual, physical and emotional strength, they receive from God and others.  Oh yes, I've met a few scoundrels, too, in both generations, but not many.  And a few cranky old men.

My working title is "Eldercare Journey:  Help and Hope for your Aging Parent and You."  I've  read comparable books, and I'm starting to look at marketing very seriously.  Who will read this book?  Good question.  And what will they learn from its pages?

During my personal journey in eldercare, with my own parents, who died in 2003 and 2004, I've learned to see the losses virtually all elders face, and to understand myself, and what I bring to the relationship, both positive and negative.The book will tackle the hard questions we deal with:  "Safety at Home and on the Road, " Leaving Home?", "Many Care Settings:  Who Goes Where?" "Advocacy 101:  How to do it?"  and "Saying Goodbye," plus more.

Those of you who read this blog will recognize some of the words in the book.  Much of it is taken from the posts I've published since 2010.  I've appreciated your questions and questions.

.I'll keep you posted on the outcome of my Friday appointment with the editor. I'm bringing "my ring," in the form of an idea and some chapters.  We'll see what happens.  For better or for worse.

Mother's Day tomorrow; Moving Day today

Mom and Lauren

Tomorrow is Mother’s Day.  Today is moving day for Mom. It’s a mixed blessing.

Mom is 91.  She hadn’t counted on moving to assisted living the day before Mother’s Day, but her husband’s broken pelvis a month ago tipped the scales.  Both of them had fallen one too many times, and other safety issues surfaced as well.  Today the room was ready and it was time to move.

The studio is much smaller than she or her family imagined.  She is moving from a 1500 square foot mobile home where she lived for 22 years, with her first husband until his death in 2001, and until now with her second husband, whom she married in 2004.

For the last month until today, her daughter Carolyn stayed round the clock with Mom, spelled by her son Don, my husband..  Meanwhile, Mom visited her husband three times a day in the nursing home just down the hall from the room that would soon be theirs.   Now she is surrounded by boxes, and slowly but surely, progress is being made, thanks to her crew headed by Carolyn and helped by Don plus three of Mom’s stepsons.  I am the daughter-in-law, checking in by phone and getting our house ready for Mother’s Day, tomorrow.

Practically no one shouts “Hooray!” when moving to assisted living.  Even though it’s needed and the staff is caring, many people don’t enjoy the move at least initially.  How do I know?  I’ve worked with seniors and their families for years, and I know that’s often their response.  I also know that it’s easier for me to help a family with this kind of transition than to be a family member, even though this time I’ve helped from afar..

Only Mom knows the extent of her losses.  She has mentioned the beautiful furniture and treasures she can’t take with her.  In her generation’s words, “Her home was neat as a pin.”  She will likely miss her yard with its azaleas and rhododendrons, its lilies and hydrangea.  Not to mention the cedars and firs.  To quote one of her neighbors, who has excellent taste, her yard was “the most beautiful in the park, and no one could compete with it.”

There are likely other losses that most people over 90 face:  a slower pace, memories that go in and out of one’s mind, and a body that doesn’t respond like it used to.

Last Sunday Don attended services with Mom at Warm Beach Senior Community, where Mom lives. I was at in Seattle at First Free Methodist Church.  We celebrate communion every Sunday, and afterwards, people can move to the side aisle where a pastor or leader is available to pray.  I approached Bonnie Brann, one of our pastors, and told her about the move.   She laid her hand on my head and prayed,

“Thank you. God, for Marge.  She is your child.  She is grieving a big transition in her life.  Help her to know your peace and love during this time.  And help those around her to be patient with her grieving.  In Jesus’ name, Amen.”

I know this time has also been stressful for Don and for Carolyn.  They have been real troopers!  Tomorrow, on Mother’s Day, all of us will gather around the table and show our appreciation for each other.  Mom will be there; she will have a different address, but she’ll be there.

I'm ready for Easter, for the sake of all generations!

Forgive me for preaching a bit.  My father was a pastor, so I came by it naturally. There's a difference, though.  While a typical pastor's sermon takes 30 minutes to prepare for every minute in the pulpit, my thoughts swirl while I'm filling plastic Easter eggs for 7 grandchildren and making pies for the whole crew.

My title could be "Easter is for everyone!"  We'll have four generations at our son and daughter's home, including Great Grandma, who is 91.  After the food is demolished,  the kids will find "Resurrection Eggs," a dozen eggs filled with symbols of the Passion Week.  There's the donkey inside the blue egg, the cup inside the light purple egg and on and on until the final egg is empty, signifying the empty tomb.  We tell the old, old story and ask questions as we go.

I started this tradition about 12 years ago, and now the oldest grandchildren tell the story to the others.  It's a sweet sight to behold.  This year, though, I'm going to introduce the word "Generations," and there's a reason  for that.  Great Grandma Margie and Step Great Grandpa Don, our oldest family members, may feel somewhat neglected in the hoopla of any holiday, including Easter. And this year Don won't be able to join us, as he is in a nursing rehab 38 miles away.

I want the older folks to feel included in the celebration, hence my little sermon.

"Do you know what a generation is?"  I will ask the kids.  The older ones will know, and the younger ones likely not.

"It's a big word.  Can you say it?  GENERATION.  It means groups of people who are close in age."  

Then we will enumerate the generations in our family:  great-parents, grandparents, parents and children.  Every family has generations

"Is any generation better than the others?"  Hopefully at least one of them will answer , "No."

Jesus' death and resurrection are for all of us, young and old alike, and the power He brings us enables us to weather any storm that comes along.

My final comment to the children:  "Remember the word generations.  Everyone is important to God."

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