Caregiver Struggles – A Supportive Alzheimer’s Novel

A common caregiver struggle is the lack of support from family members.  Author Irene Olsen and I discussed potential solutions during our conversation on this episode.  Irene survived to be an Alzheimer’s caregiver…twice.  Her father, to whom her novel is dedicated, was the first family member. Then, Irenes' sister-in-law, diagnosed with mixed dementia a month after her father’s death, became the second. Why An Alzheimer's Novel? Feeling her experiences as a caregiver were meant to go further than the confines of her own heart and using her background as a care group facilitator and a state Ombudsman Irene created a supportive novel Requiem for the Status Quo. Irene's goal in writing Requiem was to encourage and educate those called to take on the role of the family caregiver.  Irene's brother was an extraordinary caregiver for his wife. Irene was the go-to person for advice, direction, and the occasional caregiving day. Having been front and center on her father’s three -year Alzheimer’s path gave Irene an “edge” on experience. Family caregivers are often ruthlessly challenged by uninvolved family members who are quick to condemn, but reluctant to offer assistance. Caregiver struggles can be devastating when their decisions are challenged or questioned.  Family members not actively participating in caregiving sometimes give advice as a way to "help". Fearing getting "sucked in" is a common reason others don't help more when caregiving is needed. Find out what each person feels they can help out with, giving them an active role in caregiving.  Physically caring for an aging person is not something most of us are "hard-wired" to handle. Thus, allowing families who can't participate in hands-on care to tackle other tasks is a huge benefit to all.  Involving Reluctant Family Members Involving family in caregiving can be quite a challenge. It's an issue that's been discussed before on my podcast but worth revisiting regularly. Many family members, feeling they are not cut out to handle day-to-day care, opt-out of helping altogether. Lacking nearby proximity is also a common excuse. So, how can we help them help us? First, ask them what tasks they can comfortably tackle.. Are they good at making phone calls to doctors, specialists, etc?  Can they handle deciphering insurance paperwork?  Maybe they can handle things like yard work or managing paid care providers. There are more tasks to be done than 1 or 2 people can handle. Finding one that each person is best suited will go a long way in maintaining caregiver health. Being the "lone caregiving more solid" is putting yourself on a dangerous path. Assuming the responsibility and full burden of care, many people march forward disregarding their own health.  Eventually, this badly wounded soldier is no good to anyone.  In reality, it takes an army to effectively manage the care of an older adult.  Failing to let others help with the practical burdens, results in a health and wellness declines. Not anticipating how overwhelming tasks will be handled is a major source of caregiver stress. Having others who can help anticipate and find solutions to things like incontinence, heavy lifting and wandering are important.  Both urinary and fecal incontinence are among the leading causes of nursing-home placement. A small or frail wife of a big man who needs help is another tough scenario. Tips for Caregivers Who Lack Family Support Lacking proper support, caregivers have more difficulty ensuring their loved one receives the care they need. Regardless of why there are ways to help yourself in your caregiving. First, find out what resources are available.  Before I started this podcast I was unaware of how much support is available.  Connect with your local Area Agency on Aging. They can familiarize you with the available options.  Also, check the many options listed on my resources page.