University of Washington

What you hope for is worth the wait

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Contemplating high hopes for the new year | Local News | The Seattle Times.

The Seattle Times newspaper has a Saturday column, Faith & Values, that spotlights a variety of religious denominations. One week there might be an article by a Catholic priest, another week, from a Rabbi, another, an Imam from the Islam faith.  On Saturday, January 11th, the one who submitted her article is a minister with the Northwest Ministry Network (Assemblies of God), Jodi Detrick.

Ms. Detrick quotes several of the more well-known scriptures from the Bible that focus on hope, one of which is: “But hope that is seen is no hope at all.  Who hopes for what they already have?” Romans 8:24

In my experience, I’ve found that there are many messages of hope out in the universe, and not all of them come from a spiritual text.  Take Astronaut Mark Kelly’s response to Diane Sawyer on ABC’s 20/20 program a couple years ago.  When talking about his wife Gabrielle Gifford’s chances for recovery from a gunshot wound to her brain, Diane Sawyer suggested that he was holding out too much hope for his wife’s successful recovery from the bullet’s onslaught.  His response:

“You can’t have too much hope!  That’s not practical!”

Isn’t that the truth?  How limiting it would be to portion out a wee bit of hope, but not invest fully in that state of being.  “In other words, it’s OK to be filled with anticipation for things that seem way out of sight and out of reach … Uncertainty is where hope does its best work,” says the columnist Jodi Detrick.  Two years after the 20/20 interview, Gabrielle Giffords is doing “miraculously” better and she would argue that her day-to-day life is very complete, and very worthwhile.  Thank goodness neither she, nor her husband, gave up hope!

“Hope outlasts disappointments.  Not everything we hope for, happens, it’s true … Unrealized expectations can be an open door to new possibilities – options we hadn’t previously considered.”  Jodi Detrick again.  I agree with her statement because I’ve experienced those other possibilities.  I’ve certainly couched my hopes and dreams to look a certain way, only to discover that the options I hadn’t previously considered managed to transform my hope into something better than I could have imagined.

Writing while on vacation a couple years ago.
Writing while on vacation a couple years ago.

Interestingly enough, the first hope that Jodi Detrick mentioned when she listed the types of dreams that  hopeful people think about, was writing a book.  I happen to be writing a book about the effects of Alzheimer’s on family caregivers and the ones for whom they are providing care – a project I started on December 29th, 2012.  In the year since then, my novel has been through numerous edits – some of a substantive nature, and many that were grammar related.  The mission for my book has always been to put a personal face on Alzheimer’s disease; to expand on the impressive, yet horrific, statistics on this fatal condition by making it more personal, and therefore more real.

One of my first “friendly editors” happens to have the same name as the protagonist in my book, Colleen.  When Colleen read the very first draft of the very first 150 pages of my book, her first question was, “Who is your reader?”  I insisted then, and I insisted for the past year, that my reader is the current or former caregiver, or the soon-to-be-caregiver who will find themselves amongst the millions of family members caring for a loved one with Alzheimer’s or other dementia.  “But does the caregiver have time for the luxury of reading a novel?  Or does the caregiver even want yet something else that reeks of the challenges they are currently facing?”

Crap.  Of course not.  But I kept on structuring the novel in my original – and stubborn – way.  My second friendly editor was a coworker who was dying of cancer.  Dennis wanted me to hurry up and finish my book so he could read it – “before it’s too late.”  I gave him what I had.  A week later I met with him and one of the constructive suggestions he gave me was, “You should be considering this novel as a textbook.”  My response: “Dennis, I’m not writing a textbook.  I’m not even writing non-fiction.  I chose fiction as the genre because I don’t have any sophisticated initials that signify astute knowledge, such as: MD, PhD, MSW (Masters of Social Work), and the like.”

Dennis responded, “I do have a MSW and I think your novel should be required reading for medical professionals and others directly involved in Alzheimer’s care.”  I continued writing, thinking that a textbook might be a secondary use for my novel, but it would primarily be a vehicle that provides hope and promise for those intimately involved on the Alzheimer’s disease journey.  (Didn’t I tell you I can be a little stubborn?)

Fast forward ten months.  I had lunch two weeks ago with a friend of mine, Gwen, and a woman who lives in the same apartment building as she.  This woman, Liz, works for a company that provides a remarkable early-detection testing and monitoring system for those suspected of having mild cognitive impairment.  I’m not here to promote the company, I’m merely providing the background of the person I met.

My friend, Gwen, brought up the fact that I was writing a novel about Alzheimer’s with a focus on the caregiver and patient journey.  Immediately, Liz suggested that the founder of her company, who among other qualifications, has a PhD in Clinical Psychology, should read my manuscript.  The Curriculum Vitae for each member of this company’s scientific advisory board contains more initials after their names than letters in the alphabet.  These professionals know their stuff and most of it focuses on Alzheimer’s and other dementia.

I insisted that if the founder were to read my manuscript, Liz had to pave the way and do so without putting any pressure or sense of obligation on this very busy doctor.  She met with him and that afternoon, Liz e-mailed me his contact information.  Phew!  Very long story, short, he is now in possession of the first 150 pages (the much revised version which I printed and overnighted to him) and he is taking it with him on vacation.  What?!

Indeed, what?  Also – what does this mean?  Can I throw all caution to the wind and have even greater hopes that he and/or his advisory board will provide valuable input so that my manuscript carries more credible weight?  Can I also wonder if my manuscript’s exposure to these professionals may segue into what my now deceased friend, Dennis, suggested it should be?  Required reading?  Whoa!  The institutions of higher learning to which these professionals are attached, to name a few, are: Duke University Medical Center, University of Washington (Seattle) Medical Center and Memory Disorder Clinic, Stanford University School of Medicine, and UC San Diego School of Medicine.

I know what you’re thinking.  “Aren’t you getting way ahead of yourself Irene?  You could be setting yourself up for a huge disappointment.”  My response to that is: Haven’t you heard?  Hope outlasts disappointments.

And so I keep on hoping.

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Adjustment disorder: a long-term care facility side-effect.

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Duct-tape Moving Van

Think of a moving/relocating experience you’ve had with all of its inherent tasks of purging of items, packing what remains, and leaving all that is familiar as you move into uncharted territory.  In your new neighborhood you’re starting all over again to find: new friends;  a new supermarket with the best deals; perhaps the best school(s) for your children; a new church; and new ties to the community.  Not exactly an enjoyable experience.  It took you some time to adjust to your new community and feel that you fit in, didn’t it?

Now imagine doing the same thing as someone who is at least 70 years old with failing health, no family nearby, and perhaps with a compromised cognition level.  Vulnerable adults move into a long-term care (LTC) housing environment because of a condition, or combination of conditions, that make living independently no longer an optionBecause of this disruptive move, another disorder – adjustment disorder – makes their move a perilous one.

A loss of context in a new environment.  In my work as an advocate for vulnerable adults, I had the privilege of hearing a wonderful speaker, George Dicks.  At the time, Mr. Dicks supervised the Geriatric Psychiatry Service clinic at Harborview Medical Center in Seattle, WA.  He was also a contracted instructor for the University of Washington, teaching courses on Gerontology, Psychiatric Consultation, and Mental Health.  He emphasized that residents living in nursing homes and assisted living facilities struggle to look for context within their new environment.  For example, context is hard to come by when your daily bath occurs at 2:00 in the afternoon instead of in the morning or evening as was the case prior to the move.  And forget about finding comfort in routine because the demands on LTC staff are such that caring for numerous residents on their shift can’t possibly assure a routine on which the residents can rely.

Just providing care doesn’t mean that a staff person is caring.  Everyone who moves into a long-term care facility will have difficulties, but those who are cognitively impaired face an especially arduous adjustment.  As I previously mentioned, staff are hard pressed to provide individual care to their residents, and oftentimes are poorly prepared to handle the disorders that walk through the door.  Just getting through their daily shift is troublesome so trying to learn the habits and routines that are so vital for quality of life of the resident with dementia is a very time-consuming task.

a hand holding unidentified white pills
(Photo credit: Wikipedia)

Quite frequently, the only contact a staff person has with a resident is when they are making demands of that resident: “time to take your medicines Mrs. Jones;” “let’s get that soiled clothing changed Mr. Smith;” “open your mouth Mrs. Clark so I can feed you.”  Providing for  basic needs is not providing care.  Why?   Because the staff are requiring something of the resident.  There is no connection.  When a staff person interacts with a resident, absent a provision of care, that’s a better definition of care.

How to lessen the effects of adjustment disorder.  Those living in a long-term care housing situation oftentimes feel as though they left all their power, and all of their basic human rights, at the door.  They are constantly surrounded with reminders of their condition – all those other residents who look as lost and helpless as they do – and it seems that the only time anyone pays attention to them is when someone is demanding something of them in the form of providing some sort of assistance with their care needs.  If every staff person spent just five minutes of non-task-oriented time with each resident during their shift, those residents just might start feeling better about themselves.

  • Walk with a resident for a few minutes by simply accompanying them in the hallway and reassuring them along the way.
  • Play music the residents like in the common areas and in their rooms – and don’t assume that you know what they like to hear.  Take the time to find out what gets their feet tapping.
  • When you walk past a resident, greet them, smile at them, just as you would if you were in a social environment instead of a clinical environment.  Again, do so even when you’re not providing a care service.  Your friendly, heart-felt greeting may just make their day.
  • Start a dialogue with residents that allows them to open up to you about who they are; what their lives were like prior to arriving at the facility.  If you need to jot down some of their stories so you’ll remember them later, do so and continue the dialogue the next time you see them.  Wouldn’t it be a pleasant surprise to a resident when you asked them, “Tell me more about your grandson Charlie.  He seems like a real character!”  Wow – you were actually listening, and it shows.  Now you’re connecting with the resident.

If you are a staff person in a long-term care facility, can you put your grandma or grandpa’s face on your patients/residents faces thereby having a greater incentive to connect with those receiving your care?  Or if that doesn’t work for you, do what you must in order to add an element of care to those you serve.  Just because you’re helping the resident perform a task, doesn’t mean that you’re providing the care that they really need.