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National Family Caregivers Month – Emmy’s Story

This November, National Family Caregivers Month, we will be sharing a series of stories, real experiences from real family caregivers. These experiences were collected and documented as a series of interviews conducted by HCG Secure and Arctos Foundation.

Emmy was in her 40s when her father was diagnosed with brain cancer and she took on the role of part-time family caregiver. Watching her father go from in-home care to the emergency room on several occasions, to facility-based care where he ultimately became bedridden was an emotionally painful experience which changed her outlook for her father and for her own future.

This experience was made more painful by lack of communication and planning. Emmy’s father had money saved to support himself throughout retirement, but he had begun acting erratically because of his brain tumor; he sold his house and remarried without telling his three adult children. Unfortunately, Emmy and her siblings struggled with their new stepmother throughout their father’s care and aging process. She was uncommunicative with the adult children, which added immense amounts of stress to an already draining situation. This tension culminated in court. Because there was a new spouse involved in his care and because he had never completed a will, Emmy and her siblings faced a legal battle to access their father’s money to afford his necessary care.

Emmy describes the pressure she felt during this time: “We have this stigma that you have to take care of your parent all the time. But living through that, with all my siblings here it was really tough, with jobs and families… I didn’t know what was covered under Medicare or if I could use his 401K for this, or if he had long term care – that’s the thing. Where do you find all this stuff?” Like many family caregivers, Emmy is a member of the ‘sandwich generation,’ with caregiving responsibilities for both an aging parent and for her own children. Balancing multiple caregiver roles with work and personal obligations presents an immense, at times insurmountable, challenge.

Lack of communication among family members can be one of the greatest barriers to loved ones receiving the care they want and need and deepens the burden placed on family caregivers. One of the most powerful tools we have to protect against the chaos Emmy faced is conversation. While Emmy’s experience is unique in the circumstances which led to legal drama and limited communication, the chaotic outcome is common among families with aging relatives. By speaking candidly with loved ones about goals for care and by seeking help, as needed, to develop a will and advance directive, we can support family caregivers trying to navigate an incredibly challenging task and better ensure that our wishes for care will be known and honored. As an Aging at Home Association Member, you can access will and estate planning as well as care coordination to prepare you and your loved ones for the challenges we all face with age.