This past week I participated in an educational panel discussion with men and women caring for loved ones at home. Mom or Dad, husband or wife, the person receiving care wanted to maintain as much control over their destiny as possible. The problem: knowing when it was okay to say we need some help. Families shared that their loved one was “stubborn” and unwilling to allow outside help. Some caregivers had the insight to know that they had their own limitations and knew there was a line in the sand that they wouldn’t cross related to specifics aspects of care. Maintaining a career, caring for personal health needs, being able to fulfill the personal bucket list with fun and fulfillment were expressed by those caring for aging loved ones.
Are you worried about maintaining your sense of self while caring for someone with dementia? What are the best ways to gain cooperation? Caring for someone with dementia can be particularly daunting because the person with dementia is not able to appreciate or understand that their capabilities have changed. This can make the individual appear stubborn or out of touch with reality. The family caring for the person with dementia may see these changes every day and expect that their loved one with dementia is also aware of the changes.
Short term memory is gone, as is insight, judgment, and reasoning skills; remembering that they are different or lack capabilities is not possible. What is remembered is habits, and life long patterns of doing things. That is comfortable because it is long learned. New ideas or changes to patterns, and routines causes stress and anxiety, resulting in being perceived as “stubborn”.
Imagine that you woke up today in a different place, let’s pick a village in Ireland. You weren’t prepared for this trip and you don’t quite know exactly where you are and how you got here. The people speak your language but some words have changed meaning, the terrain is different, and the meals are different, just to name a few things you haven’t expected. Now imagine that the people in the village aren’t familiar with your habits and lifestyle. They approach life and routines differently and you haven’t had any access to the internet to review the local culture and way of living. You expected to find your favorite beverage and meal on the menu in the pub but instead they are serving you colcannon and ale: mashed potatoes with green vegetables mixed in and warm beer. Imagine your reaction; a little uncomfortable and unsettling, at least.
Routines, habits, lifestyles form who we are. We are comfortable and reasonably happy when we can maintain them. When unexpected changes occur to our routine, it provokes stress. When we encounter a number of bumps in a day, its not unusual for any of us to be put out, feel stressed, for it to effect our mood. “Getting out the wrong side of the bed” once in awhile can give us a little stress, but daily causes anxiety. I can’t think of a single person I know who wouldn’t find that kind of change stressful.
It’s no wonder Aunt Mary is not happy if she doesn’t get her orange juice and poached eggs for breakfast or read the newspaper before she is rushed out the door to the doctor this morning (remember, Aunt Mary, I called to remind you last night, right?) or be told that she already told you that story about her daughter Nancy a dozen times before. Who likes being told they are have memory problems when they can’t remember to remember?
This recent Berks Community Television Program discusses approaches when a loved one has dementia. In this 30 minute conversation, I spoke with Ann Barlet of the Berks County Area Agency and Kelly Butsack of the Alzheimer’s Association about the issues of caring for someone with dementia and discussed tips to get a conversation started. (You can view the program by clicking on the blue words).
If you live or work in Berks County Pa, join Health Calls, Ann, Kelly, and 8 other community partners this week at The Aging Parent Fair to learn about local resources to help you navigate the many needs in caring for aging loved ones, including those with dementia.