living your best to the end

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...

Long Distance Caregiving at Life’s End

Long distance caregiving When a parent becomes very ill, living far away is stressful. Growing up in Lebanon, Nada studied and worked in the US, before migrating to Canada – where she set about restarting her career. Always, in the back of her mind, was the need to eventually support her mother – who remained Lebanon with the rest of Nada’s family. A call from Lebanon changed her priorities:  her mother, twice cancer survivor, was rushed into gastric surgery. With medical bills to pay, Nada, then 6 months pregnant, took the first short-term job contract in Canada – thinking her best help would from a distance. In Lebanon, her family thought that being at a distance and pregnant – Nada should be protected. Nada mourns this decision: “I was not consulted. I did not need protecting.“ Nada’s lesson:  Don’t presume to make decisions on someone else’s behalf. The doctor treating Nada’s mother was a strong advocate of an experimental treatment. It’s not unusual for patients and their families to make an educated decision to proceed with experimental treatments, when proven treatments have been ineffective. “My mother, a college graduate, found the idea suspicious but I insisted. I remember talking to the doctor who downplayed its published side effects. Even when my mother complained, he assured me they were manageable. Being at a distance, I had no way to gauge the reality. As her mother continued to talk about the pain of stomach cramps Nada researched complementary treatments, but the doctor was emphatic about continuing the experimental treatment. “I feel he played upon my emotions: I certainly felt pressured when he...