Reflections of a Caretaker Michigan Medical Directors Association Ray Tadgerson September 17, 2017

Personal Experiences & Reflections Caretaking 101 First exposure – 15 years, wife, idiopathic cardiomyopathy (1991 – 2006) Second – 6 years, mother, dementia (2011 – Present) Personal Experiences & Reflections

Zig Ziglar – Wheel of Life Mental Spiritual Physical Family Financial Personal Career Zig Ziglar – Wheel of Life

Personal Adaptation Physical Mental Emotional Relational Spiritual Financial Occupational Personal Adaptation

When my wife was first diagnosed, we didn’t know what a Caretaker was or what the expectations were Had no idea about the time required for Caretaker Role – Necessary Presence 7-24-365; Felt like I needed to be there all the time Never thought about the physical strength required to assist her Also didn’t recognize my need for Rest and Respite physical

Mental/psychological It was difficult to wrap my brain (and hers) around her condition – due to lack of knowledge We often dealt with conflicting Information It would likely be worse today with potential self diagnosis via the Internet We were also dealing with friends and family who knew “What it was and/or What To Do” We were also dealing with family in particular who didn’t know what to do, what to say or how to be supportive Mental/psychological

Our lack of understanding of her condition caused an amazing amount of anxiety and sleeplessness Stress levels went through the roof for both my wife & me as her Caretaker The Emotional Roller Coaster with countless up’s and down’s maxed us out with being scared beyond belief to tenuous hopefulness emotional

Impact on family and friends – there was a need for almost continuous communications Rumor Mill proved to be another ball to juggle Communications with Medical Team was, at times, difficult due availability Often we didn’t know what to ask We found she needed an advocate – a second set of ears Relational

We found her condition had a profound impact on our belief system – often individually & collectively questioning We would often reflect on our Window on Life- what did we do to deserve this? Or what should we have done? Was it the universe or God’s wrath? Spiritual

Here was the ever present and constant worries about our ability to cover costs We found unanticipated costs, especially with hospital and medications = more stress Often found the need to contact Insurance co. about coverage, often conflicting info Often significant frustration financial

We often worried about the amount of time required to be off work and the resulting impact on money and status of my job There was a lack of understanding among my partners and our employees I had to deal with the guilt of “not doing my job to fullest extent normally required” Occupational

Personal Experiences – P.1 My Wife with her heart condition: We didn’t know what her condition was, how bad it was or what all the confusing medical terms meant – diagnosed in 1991. Got a second opinion Went thru 6 major heart events – passed away with the 7th one over a period of 15 years Personal Experiences – P.1

Personal EXPERIENCES – p.2 We were hopeful and believing she would get a new heart. She was on the transplant list twice. Eventually she no longer qualified due to worsening condition. The stress roller coaster was beyond belief. Personal EXPERIENCES – p.2

Personal Experiences – P.3 As POA, I had to make Major Decisions – throughout and when she passed in 2006 = ultimate stress! Equally important, I was functioning as “single” parent of two young adult men and as their Primary Caretaker in a different sense; plus the necessary interaction with her family and mine Also, I was non-stop trying to work and function in a high stress environment as a CEO of a company. For me – Extreme stress meant adrenal fatigue due to living at an elevated stress level over a long period. Personal Experiences – P.3

Personal experiences – P.4 My Mom: First hints of forgetfulness – where she was and how to find my sister’s home Began giving away money and shredding important papers She didn’t recognize her condition as a problem She didn’t want to go to an Assisted Living Facility It was Maximum Stress for her and me getting her there “It’s not my mom!” Personal experiences – P.4

Impacts on Healthcare Industry My hope This presentation will provide some insights with: Understanding Caretaker pressures & circumstances; Assist with identifying the need for assistance, stress relief and respite Helping the Caretaker in understanding the pressures and circumstances the Health Care Team are under. How important it is to establish a relationship with the Caretaker Assisting the Caretaker in finding needed resources; e.g., AARP has wonderful resources Helping the Caretaker find other relevant resources; e.g., “36 Hour Day” Impacts on Healthcare Industry

Take aways A Deeper Understanding about Caretakers experience Encourage the Caretaker to ASK, ASK, ASK… Direct the Caretaker to Available Resources AARP for Caretaker role: “PREPARE to CARE” Book for Dementia: “36 Hour Day” Take aways