A Bill of Rights

By Robert Elmer III on September 27, 2015 in Uncategorized

As I have mentioned time and time again, there are a number of very good resources out there for caregivers of those with Alzheimer’s and other dementias that are looking for guidance. One of the best, is the book “The Best Friends Approach to Alzheimer’s Care” written by Virginia Bell and David Troxel.
The obvious premise of the book is that if you’re a caregiver, formal or informal, then you should be treating those you are caring for like they are your best friend. I always refer to them as “loved ones” because that’s how I hope you’re treating them. Having served as an Executive Director of four different dedicated communities for the care of those with dementia in my career, one of may favorite parts of my job is training. Along with doing my own lecturing and in-services, I would also draw on other resources, like this book, and provide my staff weekly one thought reminders in a the form of a Memo. I know for a fact that they looked at them very favorably because even though they are well trained, they looked at these reminders as reinforcing what they already knew and not redundant information they already had. I would also end the Memo with what I considered to be “The Lesson” or takeaway.
One of the most valuable and important messages I provided them from the book was “The Best Friends Bill of Rights.” I’d like to share that with you now. Every “loved one” deserves the following: To be informed of their diagnosis; To receive appropriate ongoing medical care; To be productive for as long as possible; To be treated like an adult, not like a child; To have expressed feelings taken seriously; To be free from psychotropic (drugs that effect their mental state) medications if possible; To live in a safe, structured and predictable environment; To enjoy meaningful activities that fill each day; To be outdoors on a regular basis; To have physical contact including hugging, caressing and hand holding; To be with individuals that know ones life story, including cultural and religious traditions; To be cared for by individuals who are well trained in the special care that’s required. So as you review this list, ask yourself how did you do in honoring this Bill of Rights?
Unfortunately, there are too many examples where these guidelines are not being followed and the consequences are sad to say the least. Caregivers will dismiss a behavior like anxiety or paranoia because of their diagnosis and not inform the physician. Often, these symptoms can be dealt with by the physician ordering a simple prescription. Their world makes perfect sense to them as they see it so when they express concerns that we don’t address, they won’t feel safe. Being engaged in appropriate activities is critical and most importantly it doesn’t matter how well they do at the activity. The joy is in the doing. For many, towards the end of life, just being around an activity can be an activity for them. Appropriate touching and hand holding goes a long way as does a genuine hug and a smiling “I love you.” Remember, they can sense your emotions. What this really breaks down to is you want to maintain as much normal for them as you can.
So what was my specific lesson or takeaway from this message? Very simply, in spite of their losses, your loved ones have the right to enjoy a good quality of life in all aspects of their life. It is our responsibility to insure that we are providing them that quality of life.
If you have any questions or concerns, please email me at repe@careforcare.yabanjin.com and remember, join the journey.


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