Finding solace in community support

I’m quite certain no one will be able to avoid being a member of some sort of medical support community at some point in their lives. Cancer, Parkinson’s, ALS, MS, heart disease, dementia – or any of the multitude of conditions that disrupt a person’s status quo – will eventually find most of us clinging to that common bond of support.

For my brother and I, it is Alzheimer’s disease that has been the defining community to which we both belong. My brother, Don Desonier, recently changed his career focus from family law to family caregiver consultant, a career that bloomed out of his experience with our father, to be sure, but more pointedly as a result of spousal care for his wife, Nancy, who died from a mixed dementia diagnosis on July 4, 2012. His company, Transitions in Dementia Care, provides support for a caregiver’s journey. “You don’t have to do it alone,” and “Helping you walk the path with dignity and hope” are the major tenets of his one-on-one work with individuals and families. As with all things in life, going it alone is rarely the healthiest path of least resistance a family caregiver might follow when strapped with the learn-as-you-go task of dementia caregiving. Consulting with professionals or like-experienced individuals can only enhance the caregiver’s efforts.

Several years after my father’s death, I immersed myself in providing Alzheimer’s Association group caregiver support. Concurrent with that work, I was a certified long-term care ombudsman for the State of Washington, advocating for those living in long-term care facilities. The two jobs complemented each other quite readily. When I thought I was ready, I wrote about my father’s caregiving experience, eventually publishing Requiem for the status quo, a novel that ushered my membership into the AlzAuthors writing community for which personal family Alzheimer’s experience, plus writing skills, can qualify a person for membership.

My five-year road to publication was fraught with challenges, not the least of which was trying to get into an industry that, quite frankly, was not enamored with the icky topic of Alzheimer’s disease or other dementia. Lisa Genova’s Still Alice was the big winner in the publishing world when it came to fiction about dementia. Her novel and an eventual movie filled the stories-about-Alzheimer’s gap that existed at the time, and she did so quite swimmingly. She is an extraordinary author (multiple book titles to her name) and her fictional Alzheimer’s story was done well.

But I too am privy to extraordinary literary contributors on the subject of Alzheimer’s and other dementia. The AlzAuthors bookstore contains a wealth of non-fiction and fiction titles that will most certainly meet the needs of adults and children who have experienced – or are experiencing – a life with dementia. I am personally reading each and every title – it will take me awhile because there are numerous titles – but one glance at the bookstore and you’ll be able to pinpoint the exact subject matter that will meet your particular situation and query. My own novel, Requiem for the status quo, will be added to the bookstore December 20th of this year.

As odd as it sounds, I celebrate the fact that Alzheimer’s is becoming quite mainstream.

That is a good thing because once it appears more commonly and intuitively into our lives, we will be better able to manage all that this disease dishes out. It is by no means a popular disease, but it is indeed a disease of the populous.

 

 

Caregiving 101

I’ve written several articles over the years about the importance of assembling a caregiving team when caring for a loved one – a team that doesn’t necessarily rely on family because not everyone has a participatory family when it comes to these matters. That was certainly the case for REQUIEM FOR THE STATUS QUO‘s Colleen Strand while taking care of her father, Patrick Quinn. She sought help from her brother  but that was not something with which he chose to be involved.

REQUIEM, my debut novel, is now available for pre-order from my publisher, Black Rose Writing. You will receive a 10% discount with code PREORDER2017 if purchased before its release date of July 20th. Additionally, in the days ahead, both Amazon and Barnes & Noble will be offering a pre-order option leading up to the novel’s release. Ebook options will be available at most online book retailers as of July 27th.

Of all the life-changes we encounter during our journey, caregiving is one of  – if not the most – difficult speed bumps to get over.

Caregiving: the ultimate team sport suggests how one might use the strengths of each team/family member to handle the varied needs during the caregiving journey.

Family dynamics that hamper caregiving success exposes the need to let go of stereotypes or childhood roles that don’t serve siblings well as adults. If ever there was a time to work together for the greater good, taking care of a family member with dementia or other terminal illness ranks right up there at the top.

Solo caregiving addresses the needs of the person who appears to be strapped with fulfilling all the roles needed for a successful caregiving venture. The solo caregiver need not settle into those roles, however. The help of other, well-meaning individuals, can lessen that daunting task.  Certainly, much relies on the neighbor, coworker, even casual acquaintance, but said entities are a resource from which much assistance can be found.

Here are several more articles for the caregivers out there – and those acquainted with a caregiver – to provide some wisdom and encouragement through the tough times: 

The Alzheimer’s caregiver: NOT a fictional character

REQUIEM FOR THE STATUS QUO, to be released July 2017, contains fictional characters right out of yours and my reality. If your life hasn’t been impacted by caregiving for a loved one with Alzheimer’s or other dementia, you are at least tangentially connected to someone who has been.

  • A parent’s senior moments transform into hair-raising episodes of wandering and getting lost at all hours of the day and night during varied seasonal temperatures that may very well threaten their lives.
  • The husband who was Mr. Fixit for all home repairs, big and small, no longer knows how to use a screwdriver, and becomes combative when challenged.
  • A sister’s successful writing career is derailed when she can no longer write coherently or understand the written word.
  • The middle-aged next door neighbor pounds on your front door demanding entry to his home and threatens to call the authorities if you don’t immediately vacate the premises.

Continue reading “The Alzheimer’s caregiver: NOT a fictional character”