living your best to the end

Ricky’s mother had a ‘good death’

Of the three siblings, Ricky – the sole daughter – was closest to her mother, Anna. “When my marriage ended, my kids and I lived with my mother. We all adored her.” In the last three years of her life Anna- who died at age 91 – was beset by Dementia. “It was more than memory loss – it was her wonderful personality that vanished.” In spite of the pain of her beloved mother disappearing, Ricky took care of her until the end. It was an end ‘strategy’ that the sibs agreed on: no heroic measures. No CPR should her heart stop, no medications to jump-start her system, no breathing machines and no feeding tubes. “The day she passed the entire family had a get together in her room. We brought take out food and ate our picnic sitting by her saying our farewells .I returned later that evening to have time with her alone. I curled up around her, and whispered, it’s ok to go. She died later.” As spokesperson, Ricky stood firm in the face of health care professionals who repeatedly tried to sway the agreed-upon ‘natural death’ route. Afterwards, she was asked to give an interview about why she and her sibs could stand their ground.“The sibs and I did not see the point of meds that would prolong a life that was obviously ending… comfort was our priority and we felt that would be what she would have chosen had she been able.”...

Alzheimer’s Caregiver, Daughter-in-law

Tina’s story of Alzheimer’s: love and understanding I was fortunate enough to walk through a journey of Alzheimer’s by my father-in-law’s side. Together we mastered the mysteries, the fears and the utter atrocity that the disease brings and we also discovered a deep rooted love and admiration for each other. He was 65 when he forgot his own birthday party My father-in-law, Poppa as he was known by family, was 65 when he forgot to attend the birthday party we were hosting for him. That is how the disease first introduced itself. As a family we all took on different roles. Some did his finances, others his legal counsel and I did the visiting. Being the extended member of the family, Poppa’s finances and legalities were not my business nor my strength. People and patience were and so began my adventure with Poppa and my role as a caregiver and battler of Alzheimer’s. I had never met the disease before, yet in today’s world technology gives us a library of information right in our own laptop. So I read, researched and spoke to anyone who would take a call. I learned quite quickly that Alzheimer’s would bring with it demons for Poppa that I would never be able to see or reason with. In order for Poppa to deal with those black thoughts I had to ensure that with every visit I arrived in a positive and open to anything kinda mood. Good days and bad days There were good days and there were bad days. The good days are when he recognized me or knew me as someone...

Alzheimer’s and Restraints: Benefits and Risks

To restrain or not to restrain Until I met Sylvia Davidson, the word restraints scared the bejesus out of me, conjuring up straight jackets, handcuffs, ropes tape over mouth and struggling terrified restrainees. (clearly, I’m watching too many crime shows). That was B-S: Before Sylvia – Advanced Practice Leader, Geriatrics at Toronto Rehab and past President Ontario PsychoGeriatric Association. In Sylvia, I found a woman whose first concern is what’s best for the patient. Considering her patient population has dementia, gaining an understanding of the patient, to determine what’s best for them, is not all that dissimilar to a crime investigation – where the goal is to gain trust towards getting the truth. More than technical skills, this requires an emotional connection. “Nurses here are schooled in the 3 D’s: Delirium, Depression, Dementia. It’s our job to figure out who and how he/she was before dementia.” The Restraints Minimization Act describes when they are to be used: “for the prevention of serious bodily harm to a patient or to others”. There are three categories of restraints: Chemical Environmental Physical Before restraints of any kind are considered, there has to be consent – usually from the surrogate/substitute decision-maker, who is made aware of risks and benefits, a couple of examples of which are: Benefits: facilitating activities, calming and preventing harm. Risks: becoming more agitated, not being able to get to the bathroom (incontinence), being more unsteady afterwards. With consent, a comprehensive assessment process – with the family and the patient at its center. “Family members are so important because they knew this person before dementia set in. If we learn...

Medications: work differently and more dangerously as we age

Drug Use and Seniors 1 in 5 over age 65 are taking 10 or more prescription medications, 1 in 20 are taking 15 more so reports Canadian Institute of Health Information (CIHI). Not included in that total: the number of times a day meds are taken and non-prescription products. Not detailed are medications taken to counteract side effects of medications, and whether medications are being taken properly. That’s lot of chemistry and chemicals acting, reacting and and interacting in our bodies and huge room for error: the Institute of Medicine (IOM) reports more than a million (U.S.) hospitalizations and emergency room visits are the result of an ‘adverse event’. Some of the medication errors I’ve heard about, that can lead to serious harm: Directions said: take one when you wake up. 80-year old man nods off during the day, and takes one every time he wakes up. This is only discovered at a family get together when his 3 children realize they’ve each been getting his prescription refilled. Capsules for an ear infection: put in the ear instead of swallowing. Capsule for a puffer wrenched out of puffer-enclosure and swallowed. Take twice a day interpreted as two capsules two times daily taken 15 minutes apart. An Australian study, focusing on why seniors are particularly at risk for medication errors: large quantities of medication, trouble opening the package, trouble swallowing, troubling side effects, and confusion — often caused by medications. The Centre for Addiction and Mental Health (CAMH): Choose to Change: A Client-Centered Approach to Alcohol and Medication Use by Older Adults, details outward appearances –  resulting from multiple medications...
End of life decisions and next Tuesday’s food.

End of life decisions and next Tuesday’s food.

Dr Rebecca Sudore: changing focus from planning end of life to preparing for end of life decisions An Associate Professor In-Residence in the Division of Geriatrics at University of San Francisco, the impossibly young Dr Sudore is dedicated to helping vulnerable older adults and their families make informed medical decisions, especially for advance care planning and at the end-of-life Dr Sudore, at a University of Toronto Bioethics Speakers series, used this question to illustrate the impossibility of meaningful planning for life’s end: ‘Do you know what you’re going to eat next Tuesday? The answer: ‘it depends’. And so it is in planning for what’s essentially the unknowable in the end of life journey. Dr Sudore’s research and objective instead is: prepare for decision-making. Seemingly simple questions, says she, open the floodgates. Is there anyone you’d trust to make medical decisions? Do they know? What have you talked about with them? 50%-76% will be unable to make our own end of life medical decisions The importance of conversations with the surrogate can’t be emphasized enough. Even so,having spoken to dozens of surrogates as part of her research, the findings are distressing and revealing: Many surrogates don’t want the role. Sudore thinks it of paramount importance to ask the question of patients: Are you ok with your surrogate making ‘in the minute’ decisions? Giving your surrogate permission to override or change your wishes – putting flexibility or leeway right into your Advance Directives – can make the difference between a surrogate adjusting to loss or suffering from Post Traumatic Stress Disorder. Dr Sudore gives, as an example, this discussion with her...