Local support group member June is a practicing nurse. And she’s been a hospice volunteer for many years. Her father recently passed away; his clinical diagnosis was Lewy body dementia. His main symptoms were parkinsonism. Her mother was the primary caregiver. The mother was able to keep the father at home. Daughter June provided care and some oversight. Her father died in February 2023. He was on hospice since early January 2023. June recently shared some “considerations in caregiving” which apply to caregivers of those with Parkinson’s and all the atypical parkinsonism disorders.
Considerations in Caregiving
by June, local Brain Support Network LBD support group member
There are some things we wish we realized sooner and some other tips I would like to share.
Urinary incontinence, urgency, and retention
The biggest challenge was dealing with urinary incontinence and urgency. We found out later that he had urinary retention. So even though he seemed to be voiding an adequate amount of urine, as time went on, a larger and larger amount of volume was being retained in his bladder. You can imagine that this would have been a frequent discomfort for him as he would so frequently feel the urge to pee. He had increasing abdominal distention which had been suspected to be constipation. A few days before he died, he finally was catheterized and 2.4 liters of urine came out! His abdomen was completely flat after that. So the lesson would be, that if there is urgency and frequency to check for urinary retention, this can be done via catheterization or bladder scan if in a medical facility.
The equipment we used for voiding; a bedside commode, urinal, washable bed pads, disposable bed pads, diapers (both disposable and washable), and condom catheter. For females consider using a purwick system.
We found Senna worked best, not every day, but enough to get adequate results, then pause for a couple of days.
A good physical therapist if available, transfer belt, Hoyer lift, bed pads (washable and disposable), wheelchair, cane or walker, standing aid, and hospital bed.
Skin breakdown prevention
Scrambled eggs (protein), pillows to protect pressure points, heel protectors, skin barrier lotion if incontinent, turning, pressure alternating air mattress.
Digital clock with date, day of week, and time of day (morning, afternoon, night).
Hospital bed, call light, bed alarm, bed monitor, bed rails.
Home health, palliative care, hospice.
5-minute tasks like dishes, folding clothes…
Consider legal papers (trust, will, power of attorney, advanced health care directive ) sooner rather than later.
End of Life Option Act – in California
Let go of what is not necessary, do not resist life, learn and move forward (forgive yourself and others- including institutions), it’s okay if it’s not perfect, choose your team. Sometimes hope is just around the corner.