living your best to the end

med wordsMedical Terminology

Every health condition comes with its own language, medical terminology and decision options. End of Life is no different.  While CPR and DNR may be familiar to many, that doesn’t mean they are understood as intended.

New ‘terms’ such as Allow Natural Death or AND and Voluntary Stopping Eating and Drinking or VSED have been created to add to options to consider.   Understanding the words and terms used is one thing. Being able to act on them is another.

Dementia – more than memory loss: it’s a broken brain

Dementia: Communication, hard-to-manage behaviours and safety A much needed re-framing of Dementia from Alberta Health Services clinical nurse specialists, Jennette Coats and Loralee Fox, who embrace care and caring for those with ‘broken brains’. I sat in on their extremely practical and sensitive strategy session for supervisors of Home-Care Workers organized by Revera Health Care.Whose patient population increasingly has one or more Dementia: Alzheimer’s, Lewy Body, Fronto-Temporal Lobe, Vascular Attendees included nurses, occupational therapists, social workers, personal support workers and physiotherapists who shared some of their own coping stories, dealing with their own parents with Dementia: “I could tell my mom all the awful stuff about my divorce. She’d forget as soon as I told her – so I got to ‘dump’ without guilt.” As the broken brain description implies, it’s more than just memory loss that caregivers cope with. It’s the responsive b behaviors – aggression, anxiety, agitation, wandering – that drains emotionally and physically. One of the strongest messages acknowledged the issue of time: Caring for someone with violent behaviours of dementia can take 50% more time Staying safe takes time: trying to be efficient can be self-defeating “Rushing through can cause emotional distress and increase anxiety, agitation, and aggression.” From the Gerio Psychiatric Education program in Victoria British Columbia, the acronym, ABCDE Apologies: One of the most powerful the calming strategies I’m sorry – I didn’t mean to upset you. I’m sorry – you’re right. I’m sorry I made you feel (angry, hurt, dismissed..) I’m sorry – I know you’re trying so hard. I’m sorry – this must be so hard for you. One of the...

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...

Dementia: Feeding tubes may add to risk of bed sores

 PEG or Percutaneous endoscopic gastric feeding tubes, long assumed to help bed-bound dementia patients stave off or overcome pressure ulcers, may instead make the wounds more likely to develop or not improve, according to a study. “We see a substantial risk of people developing a stage II and higher pressure ulcer. We believe these risks should be discussed with family members before a decision is made to insert a feeding tube in a hospitalized nursing home resident with advanced cognitive impairment.”  Joan Teno, MD, MS, the study’s lead author and a gerontologist and professor of health services, policy and practice in the Public Health Program at Brown University in Providence, R.I., said in a news release, “This study provides new information about the risks of feeding tube insertion in people with advanced cognitive impairment.” In this study, the researchers found that among patients who did not start with an ulcer (bed sore) , 35.6% of those with a feeding tube ended up with at least a stage II ulcer, compared with 19.8% of patients without a feeding tube. The researchers found that the chance of getting an ulcer was 2.27 times higher for people with feeding tubes than for those without. The risk of developing a more serious stage IV ulcer was 3.21 times higher for those with feeding tubes. Among patients who already had an ulcer, the researchers found that 27.1% of patients with a feeding tube experienced short-term improvement, while 34.6% of those without a feeding tube experienced healing in a comparable time frame. In a previous survey, three-quarters of physicians thought the nutrition delivered by feeding...

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I am dying from the treatment of too many physicians.

Alexander the Great