Love: Lost and Found on The Edge of Alzheimer’s

Alzheimer’s disease is now the sixth leading cause of death in the United States. Behind this statistic are 16 million Americans providing unpaid care to a loved one with Alzheimer’s or related dementias. The face of caregiving today is a family member or friend doing their best to survive the role of care partner.

Are you one of them?

Thinking about the dementia journey my mother and I shared over 18 years; waves of powerlessness, loneliness and guilt always come first. They are the emotions I often felt as an uneducated caregiver. Trying to remember the good, my mind usually finds its way to the pain of my shortcomings.

In my mother’s lucid moments she’d talk about love. She and my father had been married 46 years before his death. Then as my mother descended into dementia her delusions afforded one last love affair with David. David was concocted through her illness and likely an amalgam of those who were kind to her.

No matter, she was deeply smitten.

At that stage of her dementia I found myself even more conflicted. Her 80-something giddiness over young love was palpable and I should’ve been happy for her. Instead I was oddly defensive over my long-gone dad and suspicious of this imaginary man courting my mother.

Boundaries are critical for all care partners supporting loved ones with brain disease. Although we’re advised to enter their reality, we also need to keep a grip on our own. Some balancing strategies you may find helpful:

  • Just let go: You may pride yourself on being the best at heated debates, settling emotionally charged discussions or simply being rational in all of life’s challenges. With brain diseases like Alzheimer’s although you can enter your loved one’s reality you cannot often ‘win’ in their world. Suspend your need to fix, flatten or finalize. When safety is a concern, of course you’ll need to prevail, otherwise let go before escalation ensues.
  • Desensitize from your emotional triggers: Spend quiet time reflecting on what triggers you most in your role as care partner. Is your trigger a phrase, a facial expression, a recurring struggle, or simply guilt and anger seeing those you love suffer? Pick a phrase you can remember easily. When under pressure, close your eyes and calmly say your phrase over and over to yourself as you breathe out and until your shoulders begin to drop back in place. Likely your loved one won’t even notice and you’ll have a moment to reclaim composure. In more severe cases of chaos, have an exit strategy; one allowing you to break the tension for all.
  • Forgive yourself often: Caring for a loved one with dementia and Alzheimer’s disease can be a long and tiring journey. Although you’ll find moments of great fulfillment, you’ll beat yourself up for your missteps, too. Don’t be too hard on yourself. Remember it’s the disease, not your loved one you see in moments of tension. And it’s your loved one, not the disease you see in moments of lucidity. Treasure the moments of lucidity you share.

Personal survival strategies for care partners are essential to maintaining your health and stamina. Well-executed strategies can ultimately give you strength to provide ongoing care for your loved one. Studies show that stress leads to higher mortality rates in caregivers than non-caregivers of the same age.

Prepare yourself for a marathon, not a sprint.

Lisa B Capp is a blogger, an activist and a dementia caregiving survivor. As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profits. Her passion for empowering strength through transition in her professional work is now focused on those living a care partner life. For more information visit her website at Connect on Twitter @lisabcapp and LinkedIn: Lisa B Capp.



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