Listen to Liz on KSFR Santa Fe Public Radio:

“YOU HAVE PARKINSON’S TOO,”

the diagnosing Neurologist should have pronounced turning to me.

Since my husband’s recent passing, my goal is to be an advocate for care-partners of those living with Parkinson’s. After 25 years of caregiving, I have some idea of our needs and what advice would have greatly eased our lives.

ABSTRACT:

Create a sustainable and practical training program model with accompanying workbook for care-partners facilitated by local professionals in the field, agencies, PD support groups, government departments and all involved with those living with disabilities.

NEED:

Care-partners hands on training. Certification of Agency and Government Home Help Aides is a legal requirement. Courses typically last approximately 6 weeks.
TRAINING REQUIREMENT for care-partners? ZERO. Notwithstanding age, physical ability and temperament, overnight, ill equipped, and often alone, for 24 hours a day, Care-partners must oversee their disabled partner’s daily tasks.

PROJECT OUTLINE:

Make available weekend courses. Although helpful information and gadgets are available, because they are offered by many separate organizations, it’s difficult for us care-partners to discover who has what. Too late…If only the information was available earlier… is a frequent complaint.

SAMPLE SYLLABUS:

Safe handling. Mobility. Dressing. Lifting. Toileting. Personal care. Aides. Therapies: Diet. Medications. Testing. Social, emotional, and financial support. The dangers of Free-range caregiving. The list: overwhelming. Confusing.

.   .   .   .   .

Lacking the courage to vent my anger and frustration by hurling plates at a wall, I decided instead to write a weekly blog and save my china. Now, 75 weeks later since that first angry outpouring, it’s clear the tone of my writing has changed…become calmer. Can it be I’m more contended now that I’ve better accepted my caregiving role? Trapped in a confusing maze of emotional and physical challenges, caregiving, like my husband’s Parkinson’s Disease, is a retirement neither of us planned. Hell, though it is, the intention of exposing our personal journey to the public eye is to show other desperate caregivers and their partners we perhaps all of us share many same struggles. David is surviving. I am too, somehow without losing my sanity. Best of all David still loves me and I love him.