Caring for a person with dementia also means managing symptoms that
caregivers of people with other diseases may not face, such as neuropsychiatric
symptoms (for example, anxiety, apathy, and lack of inhibition) and severe behavioral problems.1
Caregiving is a frequent companion of the journey with a loved one stricken with a chronic illness—a role many family caregivers are totally unprepared in managing all its demands.
I never anticipated how my late husband's mysterious illness, striking Rick at 59, would transform our lives in every possible way. With his acute neurological issues that only became apparent one morning, I stepped into the uncharted world of caregiving, without the benefit of knowing what was causing his escalating, bizarre symptoms and personality changes. It would be 3 ½ years until a doctor issued a dementia diagnosis. Not knowing what was at the root of all his bizarre symptoms in the interim was truly crazymaking for me, our family and friends, since no conclusive diagnosis was provided to handle his ever-changing symptoms.
Loved ones thrust into these roles are usually quite unprepared for all the challenges they will face when a family member develops a chronic, debilitating illness. This is especially true for those managing loved ones with brain issues; on-the-job training is inadequate for an extended duration of round-the-clock care. Millions of Americans step into the role of family caregiver, often without sufficient preparation, rising to the occasion without a full understanding of the responsibilities caregiving entails. They do their best to support their loved ones but the full scope of their roles as caregivers is revealed over time and all the adaptations required.
In 2020, approximately 15.3 million family members and friends provided unpaid care to people with Alzheimer’s and other dementias, at an economic value of $256.7 billion. Fifty-seven percent of family caregivers of people with Alzheimer’s and related dementias provide care for four years or more.2
Caregiving options are a big concern for loved ones stricken with a debilitating chronic illness. When ailing adults can no longer manage their own affairs, responsibility usually shifts to family members, who are typically not prepared for all its demands. Only 9% of those between the ages of 55 and 70 have planned to pay for a caregiver when they need such help. This puts a tremendous strain on those who serve as caregivers.
Caregiving often falls to a partner or children, and a daunting task, one filled with inconceivable challenges. The Alzheimer’s Association reports that four out of five caregivers want more help from family. Battles among adult siblings are among the most common sources of friction regarding care responsibilities for a parent stricken with dementia. Families that divide responsibilities typically manage better without festering resentments, e.g., taking responsibility for managing finances and paying bills, driving the person to medical appointments, grocery shopping, hands-on care, and others.
We are never fully prepared for the many challenges created by a chronic illness or disability. The chronically ill, robbed of their physical health and vitality, often suffer losses in other areas of their lives, including their careers, finances, relationships, and overall quality of life, adding to the stress level and tensions throughout the family unit.
According to the Alzheimer’s Association, the average lifetime cost of care for a person with Alzheimer’s was nearly $375,000 in 2020, a financial burden that is mounting annually. Seventy percent of the lifetime cost of care is borne by family caregivers, which includes the value of unpaid caregiving, as well as out-of-pocket expenses for medications, food, and others costs for individuals
with dementia. Financial burdens for necessary care are a grim reality, not to mention the incalculable toll upon the emotional, physical, and mental wellbeing of caregivers.
Due to the loss of income from the stricken partner or spouse’s disability, adjustments are required for the other to not only serve as caregiver, but often in the dual capacity as breadwinner. When prolonged illnesses endure, the combination of loss of income, mounting medical bills, and expensive care
costs can drain life savings and drive many into bankruptcy. Combined into this costly mixture are concerns and tensions related to their care, safety, and welfare, along with the well-being for all members of the family. Caregiver’s stress mounts for anyone handling it all, who often question their ability to sustain their own spirits and strength through a siege of unknown duration.
Note: Online resources are available to help families in all 50 states locate government, nonprofit, and private caregiver support programs. 4
Indeed, the 12-year experience of navigating my husband’s neurological issues tested my fortitude to remain steadfast while meeting life’s challenges with courage, strength, and wisdom. I had to come to terms with letting go of the life I had anticipated and finding joy in the life I was living. That idea is not just a platitude, but hard-won wisdom from my time in the trenches as a caregiver. Employing self-care strategies is a must, to make the time to refresh your body, mind and spirit—all required assets needed for battling caregiver fatigue and navigating the ever-changing world of caregiving.
Excerpted from A Toxic Brain: Revelations from a Health Journey
Photo: Rick, diagnosed in the 11th year of his neurological illness with Lewy body dementia, with our daughters who provided loving support through our frustrating search for answers.
1. XRX Florida: Alzheimer’s Disease and Related Dementias for Home Health:
“Working with Families and Caregivers,” AtrainEducation, https://www.atrainceu.
com/content/5-working-families-and-caregivers, accessed June 3, 2021.
2. “2021 Alzheimer’s Disease Facts and Figures.”
3. “2021 Alzheimer’s Disease Facts and Figures.”
4. “Help for Caregivers: Family Care Toolbox,” Caregiver Action Network,
https://caregiveraction.org/family-caregiver-toolbox, accessed June 3, 2021.