The saying that we can’t really understand another person’s experience until we’ve "walked in their shoes," has always felt right to me. Intelligent people can be educated to the brim and be able to give excellent "book" advice. However, it frequently takes someone who has endured an experience similar to ours in order to make us feel thoroughly understood. This is where real “hands on” advice differs from advice in the abstract.
As a family caregiver, who over the span of two decades cared for a total of seven elders, I know the value of talking with other hands-on caregivers. We listened to each other, learned from each other and comforted each other. Eventually, I made connecting with other family caregivers my life’s work. It’s that need to connect that brings caregivers to websites like HealthCentral.
Alzheimer’s sometimes must be experienced vicariously
Dementia is a little different from many diseases in that it’s not only important for caregivers to understand other caregivers. It’s vital for caregivers to understand as much as possible what life is like for their care receiver, since a person with dementia often can’t describe their ordeal. The best way I know of to learn what it’s like to have dementia is to go through some type of sensitivity training. Jonathan Brown, a writer for the UK publication The Independent, wrote a gripping account of his experience with Alzheimer’s sensitivity training. Brown began his article like this:
I have been led into a room. It is unlike any I have been in before and I’m not at all sure of its topography. In one corner a television is blaring very loudly. There are other people milling around but I have absolutely no idea what they are doing. Cups and plates are clanking together nightmarishly and the sound is reverberating through my skull along with the disembodied voices that seem to be bellowing at me from the pit of hell"It may sound like some kind of 1960s CIA drug experiment but what I am being subjected to is a dementia awareness journey " to give an insight for carers and professionals into what it is like to suffer from the disease.
Brown’s sensitivity training mirrors the "Dementia Boot Camp" I went through a few years back. My training experience can be recaptured by reading Dementia Boot Camp Part 1 and Dementia Boot Camp Part 2.
Both of us had, for the most part, low-tech experiences other than earphones and goggles used to confuse our brains. It doesn’t take a lot of technology to dehumanize a person, which is what part of my experience was intended to do. People with Alzheimer’s disease are sometimes treated as objects to be drugged for the convenience of caregivers rather than human beings who live in an increasingly frightening, confusing world. Most caregivers do their best to care for their loved ones with this difficult disease, but caregiver burnout is high for AD caregivers simply because the disease can make people so challenging to manage care for.
Walking in their shoes
By volunteering to put oneself in the shoes of a person with dementia, even for an hour, a caregiver can have a life-changing experience which will help him or her remember that the "difficult behaviors" that their loved one with dementia presents to them with are involuntary. They are a result of confusion, fright and often paranoia. A caregiver can learn to be more compassionate while getting educated about dementia. It’s easier to connect the dots when your loved one seems "difficult" if you’ve been through a pseudo-dementia experience yourself and learned what it feels like to live with distorted brain signals and be at the complete mercy of your caregivers.
Brown wrote an educational and engaging piece about his training experience that I hope will be read by many people - caregivers or not.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.