living your best to the end

Zal Press: Mr Patient Commando – Who’s important?

Guest blogger, Zal Press, created Patient Commando to give patients’ stories a ‘voice’. Pictured here in his ‘teach about Crohn’s’ lab coat, he shares his thoughts on ont of Best Endings topics: Who’s important to you? Who’s important in my end-of-life plan? Contemplating that question, it took me a moment to realize that “I’m important!” Taking Inventory of Who I Am It starts here, similar in some respects to a computer chip, the intelligence that powers the organism, I am: 61 years old, orphan son Living with Crohn’s disease for 30+ years, with multiple surgeries, treatments, medications Husband of 32 years in a loving relationship (more on this later) Parent of 2 young adults who are compassionate, thoughtful, open minded critical thinkers. Who are my ‘important’ extended family relationships? I’m a younger brother (yes at 61) he and his wife are present in my life. I’m a cousin to people who are important to me. Some of these relationships play major continuing roles that are vital to my existence. I’ve got in-law status. I’m an adopted member of an Israeli family. I’m going to have to determine what guidance I’ll have to give them so they’ll feel comfortable with themselves about my situation. Beyond blood: Chronic illness is a team sport. As a Crohn’s disease patient, I have several team members. While I may be the Captain of my Team, for over 30 years I’ve relied on someone in particular who’s played many important roles. It’s no secret that my wife, Cec, has been on this trip with me for decades. She’s managed my life and my kids when...

Veteran’s Story: Palliative Care adds 6 years of life

Veteran Jim Cooper came to Palliative Care to die. Instead, he got 6 years of life.   For many, Palliative Care is a scary term: it equals dying and death. Few who feel this way would think of admitting themselves to a Palliative Care Program. But that’s just what Vet Jim Cooper did. Stanford’s Palliative doctor, VJ Periakoill wants to change the perception of Palliative care, and decided to film Jim’s life over the 6 years he was her team’s patient. Here’s his story…(click to view).  ...

Health 2.0 Interview with Dr Pat Salber @docweighsin

Silicon Valley : Health 2.0 October 1, 2013 ..Presentation after presentation of apps and technology-based devices designed to help manage health. I aim to be there next year with BestEndings Mobile App.  Even with out a tech solution to dazzle, I was interviewed by Dr Pat Salber producer of The Doctor Weighs In with this lovely intro by Gregg Masters @2healthguru: Kathy Kastner sporting her ‘death kills’ T-shirt is a humble, though inquisitive force of nature who describes herself as follows: I’m just a regular gal who found myself pondering what I did and didn’t know about: my own anxieties about dying (not about death, mind you, but about my life until The End) what happens when I’m (in the process of) dying my knowledge of ‘options’ while I’m still alive my understanding of those options and their risks I figure I’m not alone, and that: I’m learning about aging as I’m in the process, but I don’t want to be learning about dying as I’m in the process my learning process may help others I can learn so much from...

BestEndings Readers Comment

Comments from BestEndings readers I so appreciate knowing what my readers think! I applaud your frame of mind now and urge you to embrace your quest. As a. 58 yo woman whose mom died about 18 months ago, I wish she had had the courage to plan more. She’d always said there was a file with her notes for a service. But when I found it, the ideas and specifics were 20+years old and mostly not relevant. Blessings as you think, ponder, plan and prepare. Marilyn   I think that living with an awareness of mortality – our own and others’ – helps us to live much better lives. This isn’t morbid! (Though it may sound that way to some until you practice it.) I’s realistic, and it’s compassionate. It makes every day a blessing. I’ve had loved ones pass in total denial, leaving a nightmare behind them, and I’ve had them pass with awareness and courage while we walked beside them & were able to honour their lives. One guess which is the better way. Also very very important is a detailed Living Will, or Do Not Resuscitate (DNR)instructions. The standard “do not rescusitate” order to medical institutions still allows for an astonishing range of interventions unless you get a physician to help spell things out in their lingo. Perhaps you could explore this topic further for us, Kathy?   Thanks for this wonderful resource you’re creating! RMB Wonderful collection of materials for making the bestending. As a provider we must realize that we help to provide care for a lifetime, and that includes dignity at the end of life as...

Dignity Therapy at Life’s End: Thank you Dr Harvey Chochinov

Dignity Conserving Care asks at life’s end: ‘What do I need to know about you as a person to give you the best care possible?’ To give an answer as a person, rather than as a health condition is a focus-changer for providers and for patients alike. As a patient – albeit feeling my healthiest –  I wouldn’t be able to answer that question without some serious soul searching.  However,  thinking about this, when depression dropped its darkness on me, I told my GP of almost three decades: ‘I so hate not feeling energetic or optimistic’. I could do that because she’s come to know me as a person. But at life’s end, will she be there with her specific knowledge of what makes me, me? My family knows me both energetic and optimistic, and fatigued and depressed. But I’ve not told my family it’s one of my worries at life’s end – oxymoron tho this may be – I don’t want to die depressed. I am aiming for a joyful departure. I feel more confident in this, knowing about Dignity Therapy: Thank you to Winnipeg’s Dr Harvey Max Chochinov  – a psychiatrist who has been forever interested in how people cope with and manage chronic debilitating and often terminal illness: Dr Harvey Chochino Dr Harvey Chochinov: “My older sister was born with and lived with Cerebral Palsy, so I was a brother who grew up knowing something about chronic life altering conditions.” Moving forward in his career, studying at Cornell, Chochinov found that in his day to day working largely with cancer patients… “what patients encountered coping with chronic, deteriorating...