Lessons Learned on My Dementia Care Partnership Journey, by Tim Wernette
Lesson #1: Test Early/Resist Denial
Determining the beginning of my dementia care partnership journey is difficult because determining when my wife’s (Carolyn’s) Alzheimer’s Disease began is ambiguous. Differentiating between “normal” age-related memory loss and the beginning of dementia memory loss is challenging. The challenge is magnified by the tendency for both the dementia person and their care partner(s)/family/loved one(s) to be in denial and to minimize the progression of the dementia behaviors. Having a primary health care provider who is both knowledgeable about and comfortable with dementia can be helpful, as well as access to testing facilities which can help determine if/how much/what kind of dementia is present. Denial is common for everyone involved and may persist, sometimes for a lengthy period. Testing (both blood and brain scan) can help to push through the denial and to access services, both medical and social support.
Lesson #2: Choosing Your Response/Role
At the current state of medical treatment(s), dementia is a prognosis of gradual deterioration ending in death. As dementia progresses, the burden for the care partner(s) usually increases. Consequently, the care partner is faced with a significant decision: do I want to continue my partnership with the person with dementia and, if so, what will my role(s) likely be? In my case, this required me to confront my fantasy of what the latter part of my life/our lives would be like. My initial response was “I didn’t sign up for this when we got married!” Having someone to help navigate this important decision can be helpful. In my case, my Quaker pastor helped me determine that I wanted to honor my commitment to our marriage and realize that this next phase(s) of my life would be an opportunity for me to grow in ways beneficial to me personally. Making a conscious decision doesn’t make the journey easy but can help to minimize resentment that the decision wasn’t a result of pressure from others or assumptions made by myself unconsciously.
Lesson #3: Asking for Help/Support is a Sign of Strength and Health
My involvement both professionally in gender studies and personally in the pro-feminist men’s movement helped me to understand that asking for help and support is a sign of emotional strength and health, not weakness. As soon as I made the decision to be a care partner with my wife, I began what I term “a crash course” on care partnership. That “crash course” opened my eyes to a remarkable dementia community of organizations and resources. I realized how fortunate I am to have so many resources available to me. My local agency on aging (Pima Council on Aging) and the local Alzheimer’s Association provided rich written resources both for my wife (and for her illness) and for me as a care partner. Support groups I attended led to more resources, such as the DUET organization in the Phoenix area with many online resources. I discovered that local organizations (Tucson Museum of Art, Tohono Chul Park, Tucson Medical Center) offered a variety of programs and activities for both my partner and me. I learned that for care partners, isolation and lack of support can not only be stressful but deadly. Support was not only available in groups, but individually one-on-one with a wonderful dementia-competent-program counselor at PCOA and a DUET mentor who has been on his care partnership journey before me. A DUET 10-week course based on the book “Loving Someone With Dementia” by Pauline Boss was both a support group and an in-depth educational experience for me. I am also fortunate to be a member of a long-term men’s group, with “wise guys” who share vulnerability and loving support for one another as many of us have experienced profound loss in our lives. More recently Carolyn and I began marriage counseling to explore and improve our relationship as we transition from an egalitarian relationship to a care giving/receiving partnership with changing power/control dynamics.
Lesson #4: Embrace Ambiguity and Uncertainty
To different degrees, all of us have needs for control, clarity and certainty in our life. Dementia and care partnership confront me with ambiguity and uncertainty. My wife is both physically present and increasingly not cognitively present. Her cognitive impairment fluctuates day-to-day and minute-to-minute. I am continually challenged to acknowledge my ambiguous feelings: love-frustration; grief/loss-gratitude; competence-incompetence; despair-hope. I’m forced to embrace a “both/and” rather than an “either/or” perception of my life. My grief is complicated: I’m challenged to both accept what is happening to my wife and our relationship and resist those changes by engaging in activities that tend to delay cognitive deterioration.
Lesson #5: Delaying Cognitive Deterioration
While at the present time there is no cure for the various kinds of dementia, there is research that indicates that there are activities that tend to delay dementia cognitive decline. My wife and I have been very fortunate to have discovered a unique local program: Elder Rehab. Developed by a retired University of Arizona psychology researcher, the program utilizes motivated UA students (many pursuing degrees in medicine or social services) who provide people with dementia with cognitive activities and physical exercises at a local gym. Carolyn also does weekly physical therapy. All of these have shown to slow cognitive decline. Another important activity is social engagement with others. We continue to usher at concerts for local classical musical organizations, and we participate in dementia-related activities that local organizations offer (mentioned above). We’re fortunate to live in a neighborly community with friends who support both of us. Our families, especially our two grown adult “children”, engage daily with us. Finally, sleep is an important factor, so we maintain good sleep “hygiene” in a quiet, dark bedroom and naps are taken during days with lots of activities.
Lesson #6: Forgiveness and Good Enough
Trying to continue to learn, grow and hopefully get more skilled and better at the challenges that life presents to us can easily morph into perfectionism. Why can’t I be more patient with my wife? Why do I let little things frustrate and anger me so much? Why can’t I say “I” statements instead of criticizing my wife? Why can’t I just back off and take a break when I get overwhelmed with her dementia? These are the thoughts and feelings that confront me daily in our interactions. Fortunately, neither Carolyn nor I have ever been invested in holding grudges and revenge. We daily practice forgiveness: forgiveness of one another and perhaps even more importantly forgiveness for ourselves and our seemingly inevitable failings. We can return to our sincere loving, affectionate relationship relatively quickly after our conflicts have inflicted only superficial wounds on our psyches.
Lesson #7: Don’t Argue with Dementia
Because each of us is unique, to a certain extent we all live in our own world. Dementia magnifies the distance between the worlds of care partners as dementia increases/progresses. Trying to argue with the misperceptions and beliefs of the person with dementia is counterproductive, leading only to conflict and frustration for both people. Effective strategies can include changing the subject and therapeutic fibbing.
Lesson #8: Plan; Try to Avoid Crises
One of the few certainties with dementia and care partnership is that things will deteriorate, gradually or suddenly, and probably unpredictably. Periods of crises will probably arise unexpectantly, and the stress can be lessened (not eliminated) by planning. We are incredibly fortunate to have long-term care insurance for Carolyn and to be financially relatively wealthy due to our frugality and careful investment. As I gradually become
unable to care for Carolyn by myself in our home, I anticipate juggling our insurance coverage, in-home care resources, perhaps eventually placement in a facility with greater care resources than in-home care can provide, and perhaps hospice care, either in-home or with a facility. I am marshaling as many support resources as I can find to make this final part of my and our care partnership journey as rewarding as possible, realizing that it won’t be perfect but hopefully good enough for both of us.