The three critical frustrations caregivers experience, and how to deal with them

Story by Liz Marchi

My winter issue article on dementia elicited numerous responses, mostly from caregivers. Everyone who has a partner, spouse or parent who has been impacted by age-related disease is a caregiver. With the trend today toward aging in place, many of us find ourselves in the unexpected role of caregiving. In fact, caregivers sometimes die before the cared for from stress and lack of care.

AARP estimates that 34.2 million Americans provided unpaid care to an adult age 50 or over last year. Becoming a caregiver often negatively impacts family and relationships. Caregivers are rarely trained for the significant changes in their lives, and the role is often fraught with financial, personal and medical challenges.

Fortunately, in the Flathead Valley, Kerry Nagel, CNA, has launched a series of workshops for caregivers. Kerry’s own experience caring for her mother through her diagnosis and ultimate death from vascular dementia motivated Kerry to make a career change. She now works almost exclusively with patients and caregivers who are impacted by dementia.

Kerry focuses on three critical frustrations that caregivers experience. The first is the diagnostic stage when there seems to be no clear path forward. There is an acute sense that everything has changed but no sense of where you are going or how you are going to get there. The second great frustration is the sense of isolation as friends and family members begin to drop out. The caregiver sees the daily changes, but family and friends rarely do. It’s easier not to get involved. The third issue, and one that almost always occurs to some degree, is caregiver burnout. There is a tremendous shortage of dementia-trained caregivers and geriatric physicians who can educate and treat age-related illness. Caregivers are left to navigate this path on their own, for which they are untrained.

There are concrete steps caregivers can take to address their changing world. First, evaluate your living situation. Is the physical environment in which you live physically safe? Assess your resources: Are you using online resources, support groups, your church or community groups like Agency on Aging and senior services, books, the Alzheimer’s Association? Can you put together a team of people, with your loved one at the center, who can be available to care for or be with him/her so that you, as a caregiver, can get some relief?

It’s so important, according to Kerry, to always be as proactive as possible, acknowledge changes and try to look down the road. Asking for help is essential. Routines start to become more important, and help ensure that medication, nutritional and sleep needs are being met.

A sense of order and calm are very important for the dementia patient. Take time to understand what triggers certain behaviors in the cared for and in you as a caregiver. Every day is different, and being open to learning and expanding your thinking will make this journey more interesting. This requires enormous amounts of energy being reallocated in the caregiver’s life. Dementia is hard enough, but without caregivers focusing on their own health and wellbeing, it is nearly impossible. We are no good to others if we are not good to ourselves. It takes a daily commitment to self-care to do our best for our loved ones.

For all of you who are caregiving, don’t isolate yourself. Isolation is the default state. Find space in each day to nourish your mind, body and soul. Seek daily renewal.

You can find out more about Kerry’s workshops at attendllc@gmail.com or by calling (612) 231-5271.

Liz is fascinated by the various approaches to aging — from denial, to plastic surgery, to running marathons, to depression. Given our current demographics, Liz thinks there is a lot to explore, celebrate and learn from those living and aging in the Flathead Valley. Contact her at liz@lizmarchi.com.