Caregiver Family Dynamics

Mar 26, 20214 min read

Respite care is a great opportunity when a caregiver willingly seeks it out. Often times we end up talking ourselves out of why it's important or convincing ourselves we can get by without it. I think this happens for a number of reasons - a few being support and information on how to keep their own safety with that of their loved ones in check, managing their own stress, navigating multiple levels of care from medical or legal paperwork to learning nursing skills. All can be very traumatizing and make us feel stuck in reality.

The rise in caregiver needs is more important now than ever before with the challenges caregivers face in our "new normal" around the world. In the United States alone the numbers of caregivers have risen by over 10% since 2015 with 43 million caregivers to 53 million in 2020 pre-COVID which includes younger caregivers than ever before between the ages of 18 -34.

My next guest knows all too well about the need to educate our caregivers, especially those in eldercare communities. We often ask 'How' to care for them before we even consider the 'What' we are caring for and 'Why' they need the care when it comes to Dementia.

Judy Cornish is an author and founder of the Dementia & Alzheimer’s Wellbeing Network (DAWN®), creator of the DAWN Method®, and retired elder law attorney. Her two books (The Dementia Handbook and Dementia With Dignity) take person-centered Dementia care from theory to practice by identifying the skills not lost to Dementia. Through DAWN, Judy provides counseling, private classes, and an online video program for families and home caregivers. Her goal is to help families learn how to truly support their loved ones and enjoy more companionship as they live with Dementia.

Minimizing stress is often easier said than done as a caregiver. Sometimes it is hard knowing what questions to ask or type of encouragement to be able to help our loved one. The only reason this came naturally to me when I stepped into Mom's world was that I was still attached to my identity as an accountant. I wanted to know why this was happening to her and would this happen to me as well. I immediately dropped into Dementia research and family history as Judy Cornish learned to do as well. For me, this tenacity came from a deep-seated grain of fear and vanity that grew into more emotions.

I experienced a number of emotions that kept me in the past, daydreaming or morning a future that may never be. Eckhart Tolle, a contemporary spiritual teacher, and Author of The Power of Now, says, "Unease, anxiety, tension, stress, worry — all forms of fear — are caused by too much future, and not enough presence. Guilt, regret, resentment, grievances, sadness, bitterness, and all forms of non-forgiveness are caused by too much past and not enough presence."

I accept that we all age and some are better than others because of their genes, but I could not accept that Dementia is solely genetic. In fact, the more I learned about the brain in connection with our internal systems, the more I felt that there is no cure to Dementia (including Alzheimer's) and only prevention. The kind of prevention Mom was advised about early on but discarded. Not only could that advice have changed her life, if she chose to take it or diligently live with better lifestyle habits, but it could also have saved our family dynamics from the implosion of our relationships.

Digging through my family history I found significant information to support my gut feelings about genetics not being a factor but it also made me realize how harshly I had been judging Mom. I could finally understand why she had experienced so much loss of rational thinking but could still maintain intuitive thinking skills. Those who could not understand her behaviors, including me & Dad, were left feeling dumbfounded because she did not fit the description as someone living with Alzheimer's. I felt like I was fighting a losing battle trying to convince others of the differences accompanied by Frontotemporal Dementia versus Alzheimer's.

This is why it is incredibly important to seek a diagnosis if you suspect you or your loved one might be living with a form of Dementia. It will make life easier for all involved because knowing is half the battle. Especially when there are reversible forms aside from irreversible forms of Dementia. Even as I suggest this, you might be wondering how would I know what Dementia is or what it looks like? Then check out the previous Podcast and Blog on What is Dementia.

Life for you and your loved one can be less stressful and still be meaningful when you learn how to live a person-centered life with Dementia as the Dawn Method explains. Areas of daily living that include mindlessness tasks like brushing teeth or folding clothes can help your loved one maintain a sense of self through purpose, ability, and feel needed. Finding ways for both of you to live with dignity may take some trial and error but it is possible.