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.

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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.

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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.

http://www.portyonderpress.com/issue-1—2015.html

EIJ

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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.

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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.

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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.

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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.

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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.

Wedding

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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
Dozy
Agitated
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?
Perhaps
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
Negotiate
Conspire
To make a journey
Into turmoil
Confusion
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?

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Filed under Caregiving Backstage, Personal Journeys, Poetry