Tag Archives: End-of-Life Decisions

THE LEISURE SEEKER: a novel

John and Ella Robina have shared a wonderful life for more than fifty years. Now in their eighties, Ella suffers from cancer and has chosen to stop treatment. John has Alzheimer’s. Yearning for one last adventure, the self-proclaimed “down-on-their-luck geezers” kidnap themselves from the adult children and doctors  who seem to run their lives to steal away from their home in suburban Detroit on a forbidden vacation of rediscovery.

“We are all tourists.
I have recently come to terms with this. . .
I guess we always knew. . .”, Ella Robina

Oh boy. Having to deal with the deaths of my own parents and struggling to accept their individual end-of-life choices, I sense that Ella and John’s story will strike a nerve with readers- some will understand and other’s will have reservations and a critical view of two old geezer’s reaching out to one last good time on their own terms. End-of-life discussion is the pinnacle hot-topic issue in most families.

John’s best friend had been warehoused in a nursing home, tethered to life support, terrified, and living the same events over and over in Groundhog Day style. After his friend’s death, John feared, he too, would follow in his friend’s footsteps. He made Ella vow that if the aperture in his own mind closed, she would not leave him staked out to die a lonely and prolonged death in a nursing home.

In time, John’s memory did begin to fade. At first it was gradual and Ella was able to provide home care. As his Alzheimer’s disease suddenly accelerated, Ella’s physical health collapsed. She was diagnosed with a rapidly progressing cancer. She endured the initial poking and prodding of family and the medical system with the goal to prolong her life. When the cancer became more aggressive, she was pressed to undergo more advanced medical interventions. She drew a line in the sand and refused to do anything more.

These are parents, having expressed their wishes and needs to end their lives without invasive medical intervention, finding themselves at odds with those who care for them. These are common, everyday folks, your neighbors -perhaps much like your own family.

While the children are only concerned for our well-being, it’s still really none of their business. Durable power of attorney doesn’t mean you get to run the whole show. . . Is this [trip] a good idea? Don’t be stupid. Of course it’s not a good idea.

They gassed up their old Winnebago “Leisure Seeker” and left without a word to anyone. Flight – no more fight. Ella knew they were headed from Michigan to California for one last road-trip and a thrill ride at Disneyland. Their slow journey cross country followed the old route of Route 66 across country replicating the path of past family vacations. John was along for the ride; not sure where he is going.  “Are we going home?” What could go wrong with an Alzheimer’s patient behind the wheel?

Ella had been planning this trip for sometime; back when she first knew that her death would end John’s home care. She knew what lay ahead for John after her death. His worst nightmare realized.

She had carefully packed John’s slide projector and boxes of family slides, gathered up road maps, stocked the RV’s pantry, stashed cash and plotted a route through familiar towns and past small town landmarks. At night, settled in some out-of-the-way campground, Ella would hoist a white sheet outside and the pair would reminisce as their children romped in the ocean or played in the yard. Simple pleasures that warmed the heart strings; often sharing the slides with transfixed strangers.

Let me step into Ella’s story for a word or two. This is not a maudlin tale; nor unloving parents isolating their children at life’s end. I had more than one belly laugh and a familiarity with the micro-bursts of emotions that occur between two long married partners. I’ll admit, in those moments when John is aware of his situation, the dialogue gets a bit crusty. He’s angry and scared. Ella is feisty and unwilling to kowtow to anyone – including John. Each has to have the last word. Yet, in a split second, Ella is left fuming and John’s anger switches off, argument lost in the ether. Their relationship exposes the pain and anguish Alzeheimer’s brings to the lost and the left behind. And fear not. . . there are plenty of very tender moments that reveal the deep affection and love these two have shared in over fifty years of marriage.

Not everyone will like Ella’s plan; but most will probably agree it was right for Ella and John. May I have courage to enter that long good night, a life well lived on my own terms, with humor and hopes for everlasting peace.

A good read. Might be too hot for some folks struggling with end-of-life issues.

Side note: The Leisure Seeker was made into a movie in 2018. The movie, renamed the main characters, and changed the story line to reflect more humor than time spent examining the intimate bonds between the couple.

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The Alzheimer’s Medical Advisor: a caregiver’s guide

Do you know who I am?

A girl?

Yes, I was your first baby.

You were my #1? 

My mother was a cut-up, an RN, an ambulance squad leader, a mother of four and the last living senior member of my family. When she died, I popped to the top of the old age squad.

alzheimer's medical advisor coverBefore she died, she lost her marbles. All of them. But she never lost her humor or her love of ice cream and her hatred of bananas.

In spite of having 2 RNs and a certified EMT as children, my mother was able to hide her failing memory for a long time. She developed tricks of the trade so to speak. She was always sneaky with her memory so she knew the ropes.

mom and ice cream infoWe faced her fading memory and faltering physical health as best we could right up to the end. Alzheimer’s and good old standard full-blown dementia never come with a manual.

The Alzheimer’s Medical Advisor: a caregiver’s guide comes about as close as a layman can get to a manual. I have had this book for a couple of years; negligent in my responsibility to Sunrise River Press and LibraryThing to provide a review in exchange for this advanced reader’s copy.

Now that my brother faces a severe form of early onset fronto-temporal dementia, I find myself reaching for the book for answers to so many questions. And in doing so, I remembered I owed a review, so here it is.

dementia table of contentsThis book is a gold mine of information. You won’t be smothered in fifty-cent size medical lingo that makes you feel overwhelmed.

The initial chapters cover dementia, general care information, setting goals and stresses the importance of taking care of yourself.

The heart of the book discusses 54 common issues encountered in the care of the patient. Each issue is covered in a two-page spread beginning with basic facts and highlights signs of a possible emergency, lists other important things to observe, identifies ways to handle the issue at home and when to contact medical health professionals.

sampleOne concluding chapter deals with general health issues and gives tips to accomplish the tasks, like taking the temperature or pulse of a confused and scared person, and when monitoring vitals can be helpful.

Another chapter tackles the tricky subject of medical safety and management and does so in great detail.

Quoting the book, “Throughout the course of illness, persons with dementia often require services from multiple types of health care providers in many different settings.” Each level of care is covered from selecting a primary care provider through emergency and general hospitalization all the way to full-time residential care.

The hardest chapter deals with end of life decisions. Everyone and every family must explore their own feelings about the end of life wishes of a person no longer able to make their own decisions. These pages are more of an outline of topics helpful in developing a course of action working with the person while still capable of decisions and understanding the course of their disease or in the case that incapacity precludes that discussion.

The final pages are worksheets that can be reproduced and deal with gathering information necessary before consult with a health care professional. Filling out the personal information and preferences in advance makes a stressful time easier.

I hope this review is helpful. I encourage anyone with ANY long-term illness, not just dementia, to look at this invaluable resource.

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