Maryland Aging in Community

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A year and 1 week of Caregiving – there is no day off.

Job opportunities in geriatrics and long term care are expected to grow by more than 35% – ranking among the most rapidly growing employment areas, according to the Bureau of Labor Statistics. The home and community based care sector has grown to approximately four hundred million dollars per year and the provision of services in long term care is estimated to be as much as two billion dollars per year. (University of Florida Department of Behavioral Science and Community Health-College of Public Health and Health Professions)

One of the fastest growing professions created to assess and coordinate services for families and older adults are geriatric care managers.  They often act as liaisons to families at a distance, offer support, advocacy, and provide information, referral, and placement in long term care environments.  Unfortunately the service is often requested under crisis intervention.

The author of the following blog has been in the field of aging for almost 30 years and is a Geriatric Care Manager (emeritus). When the “client” is your mother, it takes all acquired skill sets, knowledge, and ingenuity to make a successful plan.


20150424_121831 (1)_ResolutionPlusIt has been one year and one week since my mother fell in her home while making dinner and 8 months since the massive stroke that reduced the stoic stubborn Phi Beta Kappa educator to living in her hospital bed in her sunroom with 24/7 care. But who is counting? Yes, it is the caregiver daughter who is very aware of the days and weeks that have passed.

There was probably no one better suited to this fate than my mother. Her daughter (me) had an almost 30 year background in aging, including her own Geriatric Care Manager practice, and had helped her father with a seven year caregiving odyssey fifteen years earlier.  This daughter knew how her mother had lived her life and knew how she would have wanted it to end were she willing or able to express her wishes.  The daughter was willing and able to help bring the mom’s wishes and unspoken “plan” to fruition.

But the biggest lesson for all of us to know is that making plans and care giving for a parent’s end of life is not for sissies. It takes fortitude, patience, creativity, love, and persistence.  In between those descriptive nouns are more ominous feelings of impatience, irritation, fatigue, worry, and challenges.

The challenges are the unexpected rifts in the schedule that jar the rhythm of life. It is the live in caregiver who has my mother’s best interests at heart, but suffers her own inability to set boundaries and sudden senses of urgencies. It requires mental agility to both nurture and manage the other 3-6 caregivers who float through the home during the week, each with their own personalities and lives of drama. Preserving the dignity of my mother as well as maintaining her home and the paperwork that defines her still living here in our world takes ingenuity and intellect and most importantly a loving and supportive “admin” husband.  Because I have succeeded so far doesn’t mean that the “darker” thoughts of “when will this end?” or “does it really matter” have not entered my mind at times. These thoughts reflect the conflicts of living and dying for my mother and balancing her needs with my desire to thrive and find my own bliss. The irony of these two thought patterns does not escape me.

Why do I still do this some might ask? Most may have given up by now and admitted my mother to a nursing home.  The increasing fragility and vascular dementia might be the green light to go ahead and let others take over the caregiving duties. Why persevere?

First of all, my mother is happy. She smiles many times every day. Whether the stroke hit her funny side of the brain or she has let go enough to say, “This is it – so be it”….she laughs every day. She watches her “I Love Lucy” series and Carol Burnett and musicals on TV on a small tray next to her bed and seems “to get” the characters and the skits. She is peaceful and calm as is the atmosphere around her. She has several longtime friends who come to visit occasionally to sit and share life stories. She may only say one word during the visit, but the visit is in her home at the time that works for her. She gets organic butternut squash and fresh made lamb broth and pasteurized egg custard when she wants it and on her own schedule. She has wonderful personal care and sleeps and eats as she wishes. She is on no medication and in no pain.  Her life right now is as “natural” as the day she was born and it matches her desires. We do have some geriatric nurse practitioners who are part of our team that not only  understand what  we are trying to accomplish but champion us each step of the way by “empowering” and not “directing” the end of my mom’s life.

Mom’s first great grandchild arrived last November 23. We have primed Mom for the baby visits and she seems to understand that this beautiful little baby girl is related to her.  When I told her that the baby was moving to Phoenix, she looked thoughtful as she digested the news. By the way, the new grandbaby is named Lucy, and so when I ask Mom if she loves Lucy, that really makes her laugh – and I am not sure if the joke is on me!

There is but one end to my mom’s story although we do not know the how or when.  As I continue on this journey with my mom, I will continue to reflect on the valuable lessons for living a good life to the end, without medical intervention, in the comfort of one’s own home, and with laughter in the air.

This journey does not happen without a plan, a strong advocate, resources, and a moral imperative. Hopefully this final transaction with my mother will give her a peaceful afterlife and for me a peaceful life after.

More to come…

-Maureen Cavaiola

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