CAREGIVER SUPPORT

CAREGIVERSUPPORT PROGRAM

Emily, Caregiver Coordinator 406-259-5212

PRIME CONNECTIONS FOR CAREGIVERS: The Power of Community

By: Emily J., Adult Resource Alliance

In a speech given to Brigham Young University, New York Times columnist David Brooks spoke about the power of community, and what makes a community effective. “When you think about it, there is one skill at the center of any healthy family, company, classroom, community, university, or nation: the ability to see someone else deeply, to know another person profoundly, and to make them feel heard and understood.” I wholeheartedly believe this and, to me, this embodies this month’s theme of Prime Connections.

In thinking about the caregivers in our community, I often wonder what’s the best way to help them feel heard and understood. For those who are not presently caregivers, I think it starts with listening, but for those who are caregivers, I think it starts with a willingness to share your story. In an effort to foster a community of connection, I have asked one of our community caregivers to share her story, which follows below. She is an example of someone who is dedicated to building the kind of community that Mr. Brooks spoke of. She dedicates much of her time to contributing as much as she can, as often as she can, to other caregivers in our community. Although she wishes to remain anonymous, I offer my sincere gratitude for her invaluable contribution.

Share a little bit about your caregiving journey.

Over 50 years ago I was the only relative within approximately 1,000 miles to help my maternal grandparents when they started having physical and memory problems. Over a dozen years I made the 60-mile round trip several times per month, helping with activities of daily living, doctor appointments, etc. Daily pill boxes were not invented, so I decided to use a calendar and 2” X 2” coin envelopes marked with the days of the week and dosage times to help trigger medication compliance. Since that time, I had a total of eight relatives in two generations on both sides of my family with various types of dementia in advanced age. My mother’s Alzheimer’s Disease started with a Mild Cognitive Impairment diagnosis in 2002. My father’s dementia was diagnosed in 2010. Dad was Mom’s primary care partner, but due to his lack of understanding, the generational ideas of spousal duties, and his dementia and cancer symptoms, his ability to provide care became increasingly challenging. While working full time, my caregiving help increased to 20 hours per week as their diseases progressed. Dad passed in 2013 and Mom died in 2014.

What did you find most difficult about navigating your caregiving journey? Anything you wish you would have known then that you know now?

Fifty years ago, there was next to no education available about "senile dementia,” so no support was forthcoming. Thankfully, education and support have become more available, but one needs to know where and how to access these resources. In the beginning of my grandparent caregiving, I truthfully answered questions from them and corrected them to orient them to reality. Sometimes this was painful for them. It took years of effort on my part to understand that changing to the patient's “world,” sometimes with "little white lies" or redirected responses, was a more caring approach, which I tried to use with my parents toward the end of their disease journey.

What helped you the most in navigating your caregiving journey?

Becoming educated about dementia diseases because knowledge is powerful for both the loved one and the caregivers. Reading books, articles, and pamphlets; attending talks; asking questions at the medical appointments; surfing the web for dementia details; participating in webinars; etc. all contribute to the knowledge base. Sharing coping strategies for support with other dementia caregivers is invaluable. I think it is akin to how military people, especially those who have been in combat, can relate better with each other than with civilians without that experience. It is known that every person with dementia is different, but there are some common symptoms to be aware of so you can be ready to respond to them if/when they occur.

What valuable information would you share with other caregivers? What information/resources do you feel is most important for them to know about?

Having patience and a sense of humor is essential. Do not be too hard on yourself when you fail, which you will at times. When you make a caregiving mistake, don’t become ineffective due to anger and guilt. Use it as a learning experience to become a better caregiver the next time. Early diagnosis is important to allow the family to discuss the patient’s future desires for medical and financial care when they are no longer able to participate in these decisions. Getting Power of Attorney and other legal documents in order is necessary. Remember that the brain is affected by the disease and the loved one is not just being uninterested or contrary. It is important to have family members on the same page as a united force for care. Cherish the moments of joy, known as “pearls,” as they will become fewer as the disease progresses. Music has the power to help at every stage, so enjoy their favorite music with your loved one.

Why is supporting other caregivers so important to you? Why do you feel it’s so important for caregivers to connect with one another for support?

My mother was a nurse, who believed in the Golden Rule and the Serenity Prayer. It is important to me to follow the tenants of our religious faith to share the knowledge, talents, and skills I have worked so long and hard to obtain. This continues her caring legacy of helping others. I guess I also have selfish motives because I want others to relate to me as a caring person and it makes me feel good when I can help them. There is no substitute for actually being a caregiver for a loved one. Caregiving for someone with dementia is quite different from caregiving for other sick patients due to the longer period of declining health with no effective treatment or survival possibilities. Dementia takes a much greater toll on both the mental and physical health of the caregiver, in addition to a much higher economic impact. It is indeed a “long journey” and needs the help of the entire “village” of dementia caregivers, family, and friends. Once again, I thank this caregiver for sharing her story, and I invite all of us to do what we can to be part of the “village” of caregivers everywhere. Taking the time to listen, to learn, and to connect is truly what matters for all of us, caregivers or not. If you are a caregiver seeking connection with others on your same journey, you are welcome to contact the Alliance Resource Center at 406259-5212 for a list of caregiver support groups within our Billings community, or for other resources that may be of interest.

CARETIME

Caregiver Support Group

Meetings will be held: 1:00 – 2:00pm

The Adult Resource Alliance, 1505 Avenue D ➥ PLEASE REMEMBER YOU MUST RSVP PRIOR TO

ATTENDANCE.

➥ At this time, masks are recommended. Mask guidelines are being monitored and may change. Please contact

Emily to verify current COVID guidelines/restrictions. ➥ There is also a call-in option available for the meetings. CONTACT EMILY AT 406-259-5212

DECEMBER 2021 Wednesday, December 8th

TOPIC: Join us for a presentation given by the Alzheimer’s Association JANUARY 2022 Wednesday, January 12th

TOPIC: “Prepare to Care”

Presented by LaDawn Whiteside, AARP Montana Caregiving Consultant There will be a Zoom link available for those interested in attending virtually.