Life Lessons from Dementia Caregiving

Promises Made and Broken

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In 1965 I was 9 years old when my grandfather was moved to a nursing home. The massive wooden door of the old mansion-turned-institutional care facility always opened with a soiled sense of despair. While visiting her father over the years, my mother would softly sob: “Promise never to put me in a nursing home.”

As a young child eager to please her mother, I promised.

When I was 38 years old, my father began to decline. He’d spent years caring for others and knew life’s endgame well. With darkness in his eyes, he searched mine quietly pleading, “Promise me, you’ll take care of your mother.”

As a daughter eager to ease her father’s pain, I promised.

In 2004 my mother’s dementia grew too difficult for us to manage in our home. By honoring my promises, I allowed the situation to turn into crisis. Our only option became involuntary committing my mother to a psychiatric ward allowing stabilization of her terrifying delusions and hallucinations. With the support of family, I came to understand she could not safely return home and we moved our mother to a memory care facility.

I broke my promises.

Understanding now, my promises should have been about protecting my mother. Caregiver actions need to be about quality of care, not about fulfilling unrealistic promises.

As caregivers, we must push aside feelings of guilt to pragmatically assess our true capabilities for the benefit of our loved ones:

– Can you effectively manage your loved one’s daily medication routines?

– Can you realistically handle their declining mobility?

– Are you physically and emotionally equipped to aid your loved one in the activities of daily living (ADL) like bathing, toileting and dressing?

– Are you able to balance your life with the vigilance required to protect your loved one from wandering?

– And, are you willing for what can be an extended period of time?

There are a growing number of baby boomers advocating for change in the practices of cross-generational care. We’re interested in removing the duty-bound thinking our next generation may have for aging or ailing loved ones.

In order for true change, we’ll need to:

Add Long-Term Living to our plans

Planning for your first home, kid’s college and retirement remain major investment considerations in our lives. Given how long we’re living now, broadening the definition of fully funding our post-work lives in our pre and post-retirement thinking is critical. Seek out advice from those who understand long-term care planning to help avoid costly missteps.

Be proactive in our search for options

Independent, Assisted and Memory Care Living options have changed over the years. Living within a community that offers multiple levels of care instead of remaining in your home can provide flexibility as your needs and those of your loved ones change. Actively searching out options together long before you’ll need them will allow research into what’s available, access to waiting lists for openings and the right financial advice to fund your ultimate decision.

Include family and friends in our discussion and decisions

It’s easier if you know what your loved one wants instead of trying to guess in a crisis. Start a discussion before age or illness prevents you from participating, leaving critical decisions to others. Unfortunately death is a certainty, so plan a strategy to live life fully while you can. Being successful requires an open and honest dialogue about considerations we’re all uncomfortable broaching. These discussions may become the most significant change required in long-term family care planning.

Edward Jones has partnered with the Alzheimer’s Association to focus on financial planning for aging and ailing loved ones. You may find some helpful tips on their website here.

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 at Lisa B Capp.

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