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Celebrating and helping caregivers
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Dr Z. Essak, MD - Vancouver BC - February 16, 2018
According to Statistics Canada there are eight million caregivers in Canada. Most are unpaid, regular people who are taking care of aging and ailing parents, children with disabilities, and friends who need them. Caregivers get little or no attention, despite their massive numbers.
Some caregivers find inspiration and friendship from those they care for and some find themselves with personal challenges through caring for others. Healthcare providers may experience the same themselves and see this in those they serve.
Sharing caregivers' stories may help others find inspiration or recognize the impact on themselves and what they might be able to do.
Six months ago, with little publicity or attention, a new website emerged providing a platform to share these stories, to allow caregivers to interact, and to provide resources.
The website www.storiesforcaregivers.com includes short video documentaries that showcase caregivers. Each episode is only 5 to 10 minutes and kicks off by introducing the caregiver, who they provide care to, and the challenges and, at times, the triumphs they experience. These are powerful stories.
The key to the website is found on the main menu as the "Series", each consisting of several episodes.
The series "Being There" includes several episodes in which the filmmaker helps the caregiver create a multimedia presentation they share with friends, family and others. The first portion of each video is like "the making of the video", getting to know the caregiver and who they provide care to. Then there is a 3 minute portion, the presentation of the story that is followed by a brief discussion amongst viewers of the story.
One episode is Patti's story that tells of how as a teenager she answered an ad through which she met Sherri, a girl her own age with significant physical challenges, and how they have been committed friends ever since over a span of almost forty years.
In another episode, Tara's story, we see the impact on her as the caregiver and support person for her husband as he struggles with PTSD.
The series "House Call" includes episodes hosted by Dr Yvette Lu, a family physician, trying to find practical solutions to help improve the lives of caregivers and who they care for.
In one episode, "Lifelong Partners", we meet Tom, a Burnaby husband who struggles to cope with the progression of his wife’s MS, to his own detriment. "It’s a lot of work," he says about the constant care-giving. We see how Tom benefits from relaxation and how both he and his wife benefit from an outing together.
In another episode, "Self Care is NOT Selfish", we meet Carol, the wife of Ken who has chronic kidney disease. After a day outing with friends she tells how much fun it was and how she and her friends have planned to spend more time doing activities together.
The series "Caring For Those Who Care" includes episodes where the caregivers are offered gifts for sharing their stories to demonstrate that even small gestures can matter.
In one episode, Mandie, we meet a young Kelowna mother who’s been married for 12 years but isn’t living the life she pictured she would. Her second child, Moses, has autism spectrum disorder and epilepsy; her youngest, Rose, has cerebral palsy. Life is, quite simply, overwhelming. We see how even some simple gestures help her and her family.
Another episode, Sheila, features a North Vancouver mother whose daughter Shara was hit by a drunk driver more than 20 years ago and suffered brain injuries. Sheila didn’t realize this would be her new purpose in life, so when, many, many years later, Sheila got pregnant again, it was an unexpected gift. "We were probably shriveling up a bit," Sheila says.
The website also includes links to many other online resources and an inspirations board where visitors can post their own thoughts and pictures.
The website is still in its infancy, having been online for just about six months. It's an excellent resource with moving videos that are well worth viewing by caregivers, family, friends and healthcare providers.
Web Links
Links to each of the series on www.storiesforcaregivers.com
Statistics Canada
Groups:
One of the books I'vePublic
One of the books I've recently completed is another by that wonderful, sadly deceased physician-writer, Oliver Sacks. It's really two distinct books in one, although both are set in the circumstances of his travels in the south Pacific.
Early arrivals to these remote volcanic and coral islands, especially in the 19th and 20th centuries, discovered an extraordinarily high prevalence of a neuro-degenerative disorder that the islanders refer to Lytico-Bodig. Although 'it' presents with 3 quite distinct phenotypes, there is often overlap of the expression of symptoms, such that the islanders recognized the probability of a common underlying aetiology. The three forms of expression are 1) a muscular degeneration indistinguishable from ALS; 2) a demetia highly similar to Alzheimer's; 3) a movement disorder seemingly identical to Parkinson's. A victim typically gets one of the three, but a fair number will get one with significant overlay of another.
The islands, which includes Guam, have been successively invaded, colonized and their populations decimated by various races, who brought with them various forms of disease, pollution, genocide, and cultural annihilation. Most notably these included the Spanish, Japanese and finally Americans, who continue a savage occupation of paradise in the furtherance of nuclear 'defence'. With these at different times came more benign influences, medical, anthropological, botanical and simply humanistic. One physician, a neurologist from Toronto settled among the natives around 1950. Lytico-Bodig had already sparked intense curiosity among researchers, but while several plausible explanations arose, none was able to meet the test of proof.
The connection with "helping caregivers" is as follows. While the disease is so progressively debilitating; and while it's the norm for multiple members of a family to be simultaneously affected and in various stages of advancement of the disease(s); they are all cared for at home within the family where they continue to be regarded as respected members of their community. Only in the most seriously advanced stages are they taken to the local hospital. IN which case the entire family also goes to the hospital to supplement the 'care team'. In this role they are welcomed as valued members of the therapeutic team. Within their culture it would be quite unthinkable that Dad or Grandma would be left at the hospital and visited, say, once a week.
Oliver Sacks is always a marvellous author to read. His command of English prose is always beautifully crafted and at times is poetic. His human warmth combined with an inborn 'scientific' curiosity that flowered in his infancy in war-time England make for what must have been one of the most balanced human beings on the planet. The book "The Island of the Colour Blind" is a 'must read for any physician at any stage in their career. Incidentally, the first half of the book - also set in the south Pacific, is about population where achromotopsia is 'the norm'. It challenges many assumptions those of us with 'normal' vision may have about the very meaning of colour.
MS peer-to-peer supportPublic
An article in the Winnipeg Free Press highlights a volunteer service that may be of interest to those who either have multiple sclerosis or have someone close to them with MS.
https://www.winnipegfreepress.com/local/making-connections-573163661.html
'Kadesha Ross remembers feeling overwhelmed with questions when she was diagnosed with multiple sclerosis nine years ago.
"I was able to find answers about the physical consequences of my disease from the health care system, but it is difficult to really understand the challenges and barriers involved from a psychological standpoint," the St. Boniface resident says.
... People living with MS and people with loved ones who have MS can apply to volunteer at https://mssociety.ca
There are two streams within the program. The first matches volunteers and participants for six months, during which they talk by phone, text, email or Zoom as often as needed.
The second stream, OneCall, matches individuals who have a specific question or issue related to MS with a volunteer for one phone call that lasts no longer than an hour.