Fading Memories: Alzheimer's/Dementia Caregiver Support

Fading Memories: Alzheimer's/Dementia Caregiver Support


Caregiver Struggles – A Supportive Alzheimer’s Novel

January 01, 2019

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 being 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 care group facilitator and a state Ombudsman Irene created a supportive novel Requiem for the Status Quo.

Irenes goal in writing Requiem was to encourage and educate those called to take on the role of family caregiver.  Irenes 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 family 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 re-visiting 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 ones that each person is best suited will go a long way in maintaining caregiver health. Being the "lone caregiving solider" 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.


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