Category Archives: Caregiving Backstage

My journey as a caregiver

Who I Am Yesterday finds Barnes & Noble, and a lot of new friends

Over the past month, I have been working towards a book signing arranged for me by Greta King, a magical marketing agent. My debut run at this activity was at Barnes and Noble on Black Lake Blvd in Western Olympia, Washington. Since my book is about caregiving and the things one must learn to live with a loved one with dementia, I chose to expand my influence.


I spent some time in the offices of Council on Aging in both Aberdeen and Olympia, and collected a substantial amount of literature about support groups, resources, and organizations. That collection followed me to the signing, and will become a permanent part of any signing or speaking engagement I secure in the future.

In addition, I put together a short resource guide that included several book titles, and links to sources of clothing, medical equipment, and care supplies. That guide is available here. My list of reading material includes the literature provided by the Council on Aging, along with links to acquire additional information. Even if SW Washington is not where you live, the list is broad enough it will provide a starting point to locate support closer to home.

My local newspaper also published a brief article about the event and something about my book.

For this event, Barnes and Noble used my resource list to locate titles within their store that might be of help. These became part of my display. The store management was very gracious and mentioned several times how happy they were to be a part of my mission to inform, to comfort, and to share.

Then, of course, the event. Yes, I sold a few books. The store will continue to stock my book, at least for a while. I also had a chance to talk with people who needed and wanted what I had to offer. One group of ladies had traveled to hear me speak and when they realized I was not speaking, asked for contact information so that they could invite me to speak to their group. They left well supplied with materials, a signed copy of my book, and a few answers I could offer based on my own experience.

Another lady stopped in mid-stride as she came through the door and announced she had just decided she needed a cup of coffee and had no idea why; until she saw my table. Again, after having a cup of coffee and reading through a few things, she left well supplied with information, and a signed copy of my book.

John McBride, from the office of the Lewis-Mason-Thurston Council on Aging, stopped by with his wife to get my autograph on the copy I had left with his office. From what I hear, both his office and Aberdeen may be contacting me about acquiring more copies for their people and to share. There are also hints of a speaking thing or two in the future.

I would say, all in all, the event was a success. I know I thoroughly enjoyed meeting the people that stopped to say hi and talk (or grab a bit of candy). I think I will be a welcome guest at the store in the future, and I have made contacts that may well expand my reach and my ability to share. Not a bad start; not bad at all.

Choose to Dance – find the way that clearly defines your needs as a caregiver, and the needs of the person being cared for – and dance to your own tune.



Filed under Caregiving Backstage, Stuff about Writing

Cuddles at Midnight

The fate of an author. Finding that place between tooting your own horn and blatant self-aggrandizement. In this case I get to use the platform to introduce folks to a wonderful publication. One I am quite honored to be a part of.

My creative non-fiction essay, Cuddles at Midnight, was published in the Eastern Iowa Review. I’ve read the entire issue and found a thought-provoking, fun, and evocative group of authors.  It is a publication that looks for “good spaces” in whatever the circumstances may be, something that is right up my alley.

Please check it out, including a sampling of the works included.—2015.html


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Filed under Authored Works, Caregiving Backstage

Reviews ~ Maria, in Film and Life

History. A subject I have always been thoroughly fascinated with. Not just the dates, places and people often forced upon us by rote in mandatory classes. No, my research has always been from the perspective of what I might have done, thought, or felt. What might have caused these people to do as they did? What human frailty became the pivot, the fulcrum of history?

That inquisitiveness drew me to the tale of Maria Altmann. Her battle with the Austrian government is portrayed in the movie, Woman in Gold. I highly recommend it. Yes, it speaks of the Nazi invasion and possession of Austria and the events that followed, but it goes far deeper. The movie sheds some light on the Vienna of the late 1800s and early 1900s. This was a time of the literati, when parties and recitals were a nightly affair and the accomplished and the affluent of Austria met in private homes. Even reviews that find fault consider it a movie well worth the effort.


Maria Altmann was a child of the elite. She was raised in a home where personages such as Johannes Brahms, Gustav Klimt, Giacomo Puccini, Max Reinhardt, Arnold Schoenberg, Richard Strauss, and others who are no longer household names, were frequent visitors. It is Klimt who was commissioned by her uncle to paint her aunt Adele. This world was shattered the day Hitler marched into Vienna.

The movie portrays those dark months in flashbacks as it dramatizes Altmann’s battle with Austria to gain acknowledgement of her family’s title to the paintings. Randol Schoenberg, the grandson of Arnold, waged the battle in Austria and in the U. S. The case was heard by the Supreme Court. What I found most interesting was that key I always look for; the human side.

The Nazi’s were infamous in their looting of the treasures of Europe. The paintings, among other assets, held by the Bloch-Bauer’s were no exception. Originally entitled Adele Bloch-Bauer I, the name of the painting was changed in the Nazi effort to eradicate all things Jewish. Eventually, it acquired the status of the Austrian Mona Lisa. But, this was not a state treasure of the Austrian government, proudly displayed in the Belvedere Palace in Vienna. To Maria it was a family portrait. A piece that represented something very special about a happy, secure and intellectually challenging childhood. It was a painting of a fondly remembered aunt.

In later years, Maria discovered that her aunt’s jewelry was given to Hermann Goering’s wife. She said she didn’t feel too badly since she had heard the lady had done some good for people. One of these pieces was the diamond choker depicted in the painting.

That brings us to the more personal side of Maria Altmann. The Maria not dressed up in Hollywood depictions and poetic license. For that you must visit the memoir of Gregor Collins, The Accidental Caregiver.

accidental caregiver

It doesn’t matter if you are a caregiver, this is a delightful book with genuine insights into the woman, and the process of aging. Collins is a member of a team hired to look after Maria in the last three years of her life. He chronicles their relationship, their conversations, and the lessons learned from a woman that simply would not let life get her down. An invigorating personality that you could well see standing up against the governments of two nations and demanding whatever small part of her childhood could still be touched, without ever letting go of living life to its fullest right now, right here.

Again, I am reminded of her whole outlook. The money was never the real issue with her. In fact, the family gave large portions of the proceeds to charity. The division of what was kept was settled quickly and without squabble. Testimony to the grace and noblesse oblige which permeated the upbringing of many generations of Bloch-Bauers.

Collins does not dwell on the failings of the disease, he spotlights his charge and allows her spirit to shine through the day to day management of physical therapy, doctor’s visits, medications and moments of realization that the end was surely on the way. Having been a caregiver for 4 years, I chuckled as he described corralling three elderly ladies with the intent of getting them to a shared meal. I cried as I read the last days of Maria’s life, reliving those same experiences with my husband. He walked through those days with beauty, honesty, and genuine love for the woman.

Accidental Caregiver is not an instruction book on how to be a caregiver. It is a story of how one caregiver learned to see more than the diminished capacity of his charge. It is about seeing the humanity in all of us and of grasping that bit that makes us individuals in all circumstances and to all ends. It is a lesson in finding the good in life, however that good may masquerade.

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Filed under Caregiving Backstage, My Bookshelf ~ Current Era

Reviews ~ Losing a Mind

Still Alice by Lisa Genova available for $7-18

Still AliceI was introduced to this title through a Facebook support group of folks dealing primarily with the various forms of dementia and primarily as caregivers. There are a few professionals in the group, as well as a few who have been recently diagnosed with one of the many forms of the disease. If you are a caregiver reading this I highly recommend the group. There are now over 20,000 members from around the world. This means that among the many quick little supporting hugs and prayers, you rarely have to wait long for a practical idea (or several) if you post a specific issue. Many members have contributed to the files section with information, books and suppliers. It is a place to rant, to cry to share funny stories, to seek advice. The group is quite diverse and not all things are for all people but that is what scrolling, hiding and even blocking are for. I lived in that group for several months and still visit when I feel I can contribute something of value.

It took me awhile to get around to reading this book. I tend to be more centered on nonfiction and direct application. I was, in the end, surprised and feel that it is a work well worth the read. Still Alice is not based on real events, it is a work of fiction. It is, however, well researched and the events and reactions within the tale are portrayed in an accurate manner.

Alice is a brilliant and sought after psychologist and linguist that begins to notice issues with memory, her sense of direction and general mental function. After losing her way and her thoughts far too frequently, she seeks the advice of a neurologist and is diagnosed with early onset Alzheimer’s. The story is a beautifully depicted tale of her decent into the disease.

I appreciated this book because it brought out several issues directly related to Alzheimer’s, such as the chance of inheritance of the related genes and how to be tested. It also brought out the very real issues with dementia and the problems of caregivers. For instance, it is not an issue that you forget where your keys are, the issue arises when you can’t recall what a key is. Getting lost is one thing, but staring at the same street signs you have seen for years within a block or two of your own home and having no idea where you are – well that may be another matter.

Genova’s research is also evident within the plot line in other ways. We know that dementia can strike the brilliant as well as the average mind – simply “exercising” your brain is no guard against the disease. However, in the words of one of the doctors in the story, when someone spends their lives in active pursuit of knowledge, he or she develops multiple pathways to the same bit of information. When brain cells begin to die, there still remains pathways or pieces of pathways to the same conclusions; it just takes longer to get there.

This last is something that I and others noted in my husband. Until he became bedridden he pushed to learn. He was an active participant in the care that I and the hospice team provided. Perhaps he could no longer walk, but he would turn on the bathroom light when I would wheel him in. On more than one occasion his team would state, “He knows, you can see it in his eyes.”

We were not wishing it true. There was one instance when a volunteer was sitting with him and they were singing. I was in my office working. Suddenly I heard him say, “Oh, Shut up!” I flew out of my office to the dining room and leaned over to eye level. I told him I knew he felt like shit and I was sorry that was the case. However, he had never allowed that to make him rude in the past and now was no time to start. I left and returned to my office. Things seemed to calm down and later, when I went to the kitchen for something to drink, he motioned to me. Drawing me close he gave me a hug. No longer able to walk or take care of any of his needs and fast losing the ability to eat or drink – he still thought, he still reasoned, he still accepted responsibility.

The human mind is the most amazing thing. We know so very little of how it works, how it dies. It is way past time we learn how to care for and protect this most precious gift.

If you have any interest or connection with the world of dementia, give it a read. Through tears and chuckles I think you’ll find it worthwhile.


Filed under Caregiving Backstage, My Bookshelf ~ Fiction

Reflections ~ What is a Mind?

The Mind

Did we ever decide, my dear,
What it was that makes a mind?

These last several days, with you
Sometimes intense and sometimes numb.

Moments uplifting, some devastating
And forever to be remembered.

Who were you, my dear,
That I loved you so?

What bit of cosmic consciousness
Merged our paths and bound us so?

Our journey together was both
Long and short, too short.

Heart-wrenching & beautiful
Sometimes stormy, always passionate.

So where, my dear
Have you gone?

Are you off exploring
Your beloved universe?

Arguing with God
As you often did here?

Don’t wander too far,
But if you do

I’ll meet you someday
Deep in the heart of a nearby nebula

Where bright and shining stars
Are born from the dust of yesterdays.

To my beloved shining star, Douglas C. Dorrough

January 13, 1927 ~ March 29, 2015

I will be creating a memorial site for my husband over the next several days.

It will have information regarding appropriate recipients of donations in his honor as well as a history of his life and work.

The link will be added to this site.


Filed under Caregiving Backstage, Personal Journeys, Poetry

Reflections ~ Journeys, Great and Small

I see that I have been inattentive to my audience in my little alcove. Please accept my apologies. Life’s journeys have kept me very preoccupied of late and it’s time I express some of those experiences since they bear greatly on one of the themes in my rooms here: caregiving.

Way back in January I posted that I had made the decision to seek out a new home, a place nearer the ocean that both my spouse and I love so very much. It started with a day trip to Aberdeen, Washington in search of a place we could call home. It was the first time I had been out of the house to actually go somewhere since bringing him home on January 9. Nearly a month at the time. A very odd experience.

I found a place that suited all of my requirements. A one-owner home that had been well cared for but never upgraded. A project house, if you will, to help me bridge the space between caregiving and, well, “after.” It also provided a comfortable arrangement for my office and library so that I could build my practice and be able to work with clients without anyone invading my private home. Perfect in so many ways.

Then the stuff of contracts and negotiations and inspections and appraisals and all the other commotion required in such things began. It’s been a rocky road. It’s still not over. But we are closer. And while the wheels of real estate deals grind, many changes have continued to occur in my life.

One of the advantages of being certified for hospice care is that you suddenly have an army of people to help you. Volunteers are limited in what they are permitted to do. They are not permitted to transfer the patient, feed them, or change them. They can, however, spend hours reading, talking, sharing music, or simply watching. Without them there is no conceivable way I could have hoped to have us packed in any reasonable length of time. I also managed to acquire a volunteer that was a professional mover. The woman was a machine. I would sort for hours and she would come in and have it all packed in no time at all. She ran stuff to Goodwill, the post office, the UPS store and helped me try to find homes for things I no longer needed. Between my volunteers and my truly amazing hospice care team, the last two months have been manageable. The dream of a home of our own truly possible.

In that process, though, it has become increasingly apparent that the love of my life is declining at an ever increasing pace. You don’t notice quite so much from day to day until you sit down to talk to the nurse about the changes since her last visit. With amazing rapidity he has developed many of the end-stage conditions of dementia and related ailments. It is now a balancing act between what must be done for one condition versus what must be done for something else. I face the stark reality of palliative care decisions each and every day.

The hardest part of my journey thus far was this past week. As I anxiously waited to find out if the seller was going to accept the value assessed by the appraiser (an answer I still don’t have at this moment) I had to take myself quite firmly by the emotions and acknowledge that he just might not be with me on my journey to the sea. The prognosis at this point is weeks, not months. With that acknowledgement I was able to turn down the stress meter on myself, my agent, and my loan officer. They have been working so hard to make this happen and every little bump caused everyone so much stress I was afraid we would start to make decisions that were not wise for anyone. So, I took a step back and accepted that I may be finishing this particular journey on my own.

I have thought about care options in these last difficult weeks. It is not that I am completely adverse to professional and caring facilities. I know that when I checked him into rehab what seems so very long ago, we were both in tears. Leaving him there was one of the hardest things I had ever done. The issue is that the tie between us is so tight that even outsiders observe it and often mention it. He has not known my name or who I am for nearly four years; and yet it is me that he reaches for, me that he holds close and wants to hug, me that he wants to touch, and me that receives his kisses. For both our sakes, I shall do my best to keep us as one to the very end.



Filed under Caregiving Backstage, Personal Journeys

Reflections ~ Paths to the Sea

Oh, the journey that we’re on,

By Fotosearch

By Fotosearch

Good days — bad days —
days that break the heart.
days that seem so wicked
in the hope that they bring.
You slip away,
then gain your strength.
You call me close,
push me away
Certain you must go
and stay.

Am I crazy to keep trying?
To get us to the sea?
To plan a great safari?
To upend us from our roost?
and yet
I find it all consuming.
If I lose you,
I must keep you
And that can only be
In a place that’s ours
not borrowed
a place that’s by the sea.

And so we pack
And organize
To make a journey
Into turmoil
Sometimes despair.
All to hold you close
To know you as I do.
To smell the sea,
or mountain air.
A place that I
can care for you
as only I can do.

But where,
my dear
do I pack away
my ever present tears?


Filed under Caregiving Backstage, Personal Journeys, Poetry

Memories that Strangle

Rings. Symbols of promised love, a symbol of taste or status, a gift. A gift that can turn ugly with little or no warning. I tell this story because it is something easily missed in the rush to care for someone suffering from some form of dementia. One more hazard in life’s ever more restrictive path.


When my husband and I got married, we decided to do something a bit different. We selected titanium rings. This is an extremely hard metal that does not yield to much in this world. Just about the only way to do much more than scar it is to use a diamond blade. We loved the cool, gray metal, the uniqueness, and the idea of endurance.

There was a bit of a problem. His ring finger was sort of in between things. He lost the ring twice (and found it again) and we even purchased a replacement (only to find the lost one). We were told that to have a smaller one on his hand would risk not being able to remove it over his knuckle. Well, he solved that and wore the ring on his middle finger – for years. Until a couple weeks ago.

One morning as he reached for my hand he jerked back and seemed pained. On closer inspection I realized that I had missed a gout episode in the making. It was his ring finger, and it was already quite swollen and warm. Knowing the strength of the metal and the impossibility of removing it if things got worse – off to urgent care we went.

They did take us in immediately. It was obvious there was an issue. And they tried. Squishing, squeezing, the thread trick (I don’t think they did that one right), the ring cutters (even the electric ones) and nothing. It was only getting tighter. My poor husband was in pain and the ring was going nowhere. Someone got the bright idea to call orthopedics.

Some 30-40 minutes later (while I kept hand up and cold pack on the finger) here came the bone doctor with the one thing I knew we needed; a diamond bladed saw. It was really quite an operation. I held a couple of supports under the ring to protect the finger as best I could, the doctor sawed, and a nurse ran a saline drip to keep things as cool as possible. The doctor passed out eye protection against sparks and spray. And we cut. Twice. We couldn’t force the thing open with only one side cut. When the ring came off my poor husband had a second degree burn. The metal had heated up even though we did our best to avoid it. Interesting that the only time he took his hand away is when we stuck it in a bucket of ice. With all the ignominies he had suffered that morning, ice water was one step too far.

There was a point while we were waiting for the orthopedic fellow that someone was floating the idea of visiting the jeweler. Really? Do YOU know a jeweler that would take the liability of taking in some poor bloke with dementia, saw off his ring leaving a 2nd degree burn, all the while hoping the wife had the right whatevers at home to care for it? Um, maybe somewhere the lawyer count is lower but not in my neck of the woods.

The moral, of course, it to be a bit more watchful of those who can no longer understand or communicate when they see a problem coming. In years gone by, any hint of gout and the ring would have been off until things were back to normal.

Be wary the midnight strangler. Put jewelry safely away. If it is missed find a flexible substitute. It really is a near thing that we lost a ring, and not a finger.

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Filed under Caregiving Backstage

My visit to the Health eBrain Study

Well, this time my poking around really got me into things. I had written Meryl Comer, author of Slow Dancing with a Stranger, because I was so touched by her experience. She just happens to be a very reachable kind of lady and full of passion for her focus; mental health. During our chat she asked if I would share the press release for the Health eBrain Study around noon EDT, September 29, 2014. And I did. Everywhere I could think of. I also went one step further – I took the test.


It’s a simple test that really doesn’t take all that long to do. You do provide some demographic information, mainly so that the researchers can compare apples with apples, sort of. It is NOT an IQ test. It tests your response time, the ability to remember a sequence (both forwards and backwards) and your ability to assess changing information based on some really simple parameters. Your score is provided at the end of each section and you are allowed to practice – how many times I’m don’t really know. If you do decide to take the test, I suggest you close everything else on your computer (yes, even Facebook) so that you can focus and do your best. It also helps the response time on some of your answers. My mouse got stuck in a couple of places and caused me to register a few errors. Which is okay; you aren’t competing for a scholarship or a vacation or anything, but it is a nice thing to provide the most accurate information you can.

So what is all the fuss about? Let me quote from the press release.

Changes in cognitive efficiency are closely linked and can occur with depression, fatigue, stress, and long-term chronic illness. This impact is particularly severe for caregivers of individuals with complex chronic conditions like Alzheimer’s and other dementias, two-thirds of whom are women. The physical, mental and emotional burden over time can take as much as ten years off a family caregiver’s life. It also can increase the caregiver’s own risk for dementia. [The numbers Meryl gave me are 6-1].

“Over fifteen million unpaid individuals provide care to the 5.4 million victims with Alzheimer’s or other dementias. [Just to point out the math, that is less than 3 individuals per patient which means that most of us are working far more than one 8-hour shift, seven days a week, 52 weeks a year.] We form the backbone of all unpaid long-term care in the U. S. What happens to our loved ones if something happens to us?” (Meryl Comer, a 17-year veteran of caregiving and President of the Geoffrey Beene Foundation Alzheimer’s Initiative.)

I really urge caregivers to take this opportunity to contribute to serious research about the impact of caregiving. It can give us much needed tools to mitigate or defer the impacts of a mind on holiday.

I have attached the press release for the study. The list of supporters for the program read like a who’s who in the world of caregiving and dementia. You will also find links to the video and to the survey itself. Again, no money is required – just a few minutes of your time to increase the pool of information that researchers need so desperately to find ways to help the caregiving community and those they care for.

Health-eBrain Study link:

Geoffrey Beene Foundation Alzheimer’s Initiative:

US Against Alzheimer’s:

Meryl Comer on Facebook (great news feed on things going on):

What it is all about:



Filed under Caregiving Backstage

Book Review ~ The Dance of the Absent Mind

Slow Dancing With a Stranger, Meryl Comer, Available on Amazon for $13-20

Slow Dancing CoverAs strange as it may seem, I don’t often read books about dementia. I do read a great deal about the brain, memory, and where we are in researching the functions of the mind. I am certainly not aware of my reason for following up on a generally posted suggestion to read this particular title. A brief post stating it was a “must read” (aren’t they all) in a Facebook support group for caregivers of those with dementia caught my attention. Well, why not?

Meryl both stunned and encouraged me with her account of two decades of care for her husband who suffered from early-onset Alzheimer’s. She has faced many things I have not had to deal with, including anger, violence and very public battles as her husband slipped into the disease at a high point in his illustrious career. Dr. Harvey Gralnick was a brilliant NIH scientist working on the leading edge of Leukemia research. Suddenly, he was showing changes in his behavior. Anger and confusion, and fixations on things no longer relevant. In search of an answer Meryl spent hours in doctors’ offices with few if any answers. When care became necessary, she burned through hospitals and facilities until the only choice was home with herself as lead to a caregiving team. In later years she added her mother to the already monumental financial and emotional burden.

In her own words, when given the opportunity to return to work as an advocate for the disease and direct a foundation fund, she saw it as a lifeline. Not only would she have income again if she could manage to take the challenge on; she had a place for “the sound of (her) pain (to) go.” US Against Alzheimer’s is an organization that strives to establish awareness in two ways; early detection and research on prevention.

There is no cure. Dementia, and there are several types, destroys various parts of the brain. Different dementia affect the brain in different ways. But once those cells or neuro-connections are destroyed, we know of no way to restore them or their functions. We barely understand functions of only parts of the brain and some of the interactions between the various areas of the brain. We are only beginning to understand the function of memory, how it relates to who we are, how it is built and maintained and what sorts of things impact how it operates. Reconstructing this vital piece of who we are is simply beyond us at this point.

This means that we have to get better at knowing risks, understanding early signs, and finding ways of mitigating or forestalling the onset. As an example we have been able to beat back the effects of many types of cancer through one crucial factor: early detection. We know that it is no longer an automatic death sentence to hear the words: “You have cancer.” We can treat it, at least some forms of it. But nobody wants to hear that they are predisposed to dementia. That who and what they are can be stolen away from them in slow motion or overnight. With the misunderstanding and discomfort our society has for any mental disability or challenge; the last thing we want to admit is that we might be “losing it.” It is long past time we stopped playing games.

Meryl points out in her book that France, Britain, the EU, Japan, Canada, China and India have all announced national plans to fight Alzheimer’s. Where are we in this battle with all of our vaunted medical expertise? Somehow we have to bring our country back to open debate on real issues affecting ourselves and our future. It is not just the cost of the various forms of dementia; the financial and medical cost doubles or more with the impact on caregivers. Lost employment, lost coverage, and asset depletion all create a burden on families and the country as a whole. Care in a facility can range from $50,000 to over $100,000 a year. In the state of Washington Medicaid will not kick in for the first two years in a facility. In home costs include medical supplies and durable medical equipment. Then there is in-home nursing or caregiving support and, if the caregiver cannot find a way to earn money from home, loss of income from outside employment.

Can we really afford not to be aware? Not to know ourselves enough that our family and friends know our preferences for care before we can no longer decide? Not to take responsibility for the road that may be ahead? I love my husband dearly and I will care for him as long as I am physically able. I would not, however, wish this on anyone else. I know that I may one day be in need of some kind of care and that drives me to work ever harder to build a safety net. There really is no one left for me to fall back on and those that I know of should not be burdened. Let’s find a way to learn when and how to prepare until we know when and how to cure.

Meryl’s organization can be found on the web at:


Filed under Caregiving Backstage