Home October 2013 Gracious & Generous

Gracious & Generous

A diagnosis of Alzheimer’s disease, or any form of dementia, can be tremendously difficult on the entire family.  Professional caregivers may struggle to cope with the ever-increasing memory loss experienced by those in their care.  So just imagine how hard it is for an “amateur” caregiver – usually a spouse, an adult child or sometimes a friend.
Simple wisdom can spare some grief — consider this sampling of “do’s” and “don’ts” that can reframe the frustration experienced by families.  Liz Ayres, former Alzheimer’s Association support group leader and caregiver, who passed away in 2012, left an enduring legacy with a communication style based on generosity and graciousness.
The over-arching message is that no one can control memory loss – not you, not the patient and not even the doctor.  All you can do is control your reaction to memory loss, by using “compassionate communication,” which can significantly heighten quality of life.
“Their disability is memory loss,” said Ayres.  “They can’t help it.  Asking them to remember is like asking a blind person to read. Don’t ask questions they can’t easily answer and don’t ‘test’ them.”
Among the “don’ts” suggested by the Alzheimer’s Association:

♥    Don’t reason
♥    Don’t argue
♥    Don’t confront
♥    Don’t remind them they forget
♥    Don’t question recent memory
♥    Don’t take it personally

At the Alzheimer’s Association, staff and volunteers caution that the normal reasoning we do with each other in everyday life doesn’t work with a person suffering from dementia.  Instead, they recommend a set of “do’s” that work far better:
♥    Give short, one-sentence explanations
♥    Allow plenty of time for comprehension – then triple it
♥    Repeat instructions exactly the same way each time
♥    Eliminate “but” from your vocabulary; use “nevertheless” instead
♥    Avoid insistence – just try again later
♥    Agree or distract them to a different subject or activity
♥    When something seems wrong to them, accept the blame (even if untrue)
♥    Avoid confrontations – if necessary, leave the room
♥    Respond to their feelings, not their words
♥    Go with the flow – be patient, cheering and reassuring
♥    Practice 100 percent forgiveness – memory loss progresses daily

Caregivers of all types – family or professional – sometimes find themselves with an ethical dilemma: should I tell the truth or a little white lie?  The Alzheimer’s Association advises families to do what will be least harmful, usually a diversion tactic.  For example, if an individual with Alzheimer’s inquires about a spouse who has passed away, rather than reminding the person of this sadness, change the topic, start a fun activity or reminisce about the spouse, telling the person something you enjoyed doing with the individual.
“This is really an act of kindness, by not reinforcing bad memories for them.  You don’t have to pretend the person is alive, but you can avoid admitting he or she is gone,” Ayres said.
One thing to keep in mind, which may help guide a caregiver’s reactions, is that a person with dementia is fearful most of the time.  With the progressive nature of many dementias, reactions may vary from individual to individual and may fluctuate in the short and long term.  Different reactions can include becoming passive, uncooperative, hostile, agitated, verbally abusive or physically combative.  Almost all experience high anxiety levels.
Your goal is to reduce anxiety whenever possible.  According to the Alzheimer’s Association, repeating reassurance is not redundant; it is necessary.
As a caregiver of a loved one, you can reduce fear and anxiety to improve quality of life.  Rather than asking open-ended questions such as, “where shall we go?” offer two options, i.e. a walk to the park or a walk to the store, or direct the person’s choice, “let’s take a walk to the park.”
Another piece of timeless Ayres advice is to consider the Alzheimer’s Association a good friend.  “The Alzheimer’s Association knows what you are going through, what works best, and what doesn’t.  The organization knows what resources are available, and it’s entirely free.  There is never any charge for what is provided to families.”
On the national level, the Alzheimer’s Association provides resources for families throughout the country. Locally, Alzheimer’s Association Orange County guides both pros and family caregivers through the process, including support groups, training sessions, a 24/7 Helpline and numerous educational resources.
For more information, please contact the Alzheimer’s Association at the 24/7 Helpline at (800) 272-3900, or visit the website, www.alz.org.

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