For several months, I couldn’t share stories about my caregiving journey. I didn’t want to talk or write about being a caregiver. I didn’t even want to share the status of my parents, for whom I provide care. I was angry and frustrated. I was most “frangry” at dementia. Dementia barged into our lives and settled like that unwelcome guest who doesn’t just overstay her welcome, but who takes control of the house and everything in it.
A RAPID DECLINE
I was angry because momma’s dementia decline accelerated exponentially, seemingly overnight. Strange behaviors became the norm as she raised her hand when we asked her to lift her foot or open her mouth widely instead of doing anything we asked. It was, and still is, heartbreaking to watch.
She no longer could sit without a chair harness because without one, she’d fall and bump her head on the floor — causing bruises and hospital trips to assess for internal bleeding. The harnesses kept momma from tumbling to the floor, but they created another problem. Because she could no longer move freely, she developed a pressure ulcer (commonly called a bed sore) on her thin, narrow buttocks.
I wanted to scream. The anger and frustration increased as I searched for harnesses, seat cushions and foam dressings for her wound, that provided some comfort and flexibility. Daddy, who also lives with dementia, never remembered unfastening momma. Even after showing him camera footage of him doing so and the subsequent tumble, he just kind of shrugged it off because he thought he was helping her. He may not have remembered the conversation, but showing him the video made him pause before releasing her again.
ONE PROBLEM AFTER ANOTHER
With the help of the home health nurse, we acquired the right cushion and bandages while we continued to navigate which seat is best for her. This provided some relief, and a bit of respite from the anger and frustration, because the ulcer was healing nicely — until it opened again. The main cushion had not completely dried by the time it was needed one morning, and momma was placed in her favorite spot without even the backup cushion. Our progress took several steps backward.
One morning, I could not find momma’s bottom dentures in any of the usual places. I noticed that she’d started tossing things in her trashcan that should not have been discarded — which gave us a clue as to the whereabouts of the dentures and a glucose meter that went missing months ago.
While she didn’t seem to mind not having her bottom teeth, it bothered us — especially when she struggled to bite the small watermelon slices I gave her with breakfast. That began a series of dental appointments to get new bottom dentures, which were horrible — but not because of the dentist and staff. They were very accommodating and compassionate as momma sucked their fingers and wax because she thought it was food.
To top all this off, their 99-year-old home needed some rehab. Water damage had caused the bathroom floor to start sinking around the toilet. I screamed loudly inside while collaborating with my brother on the repairs.
GIVING YOURSELF GRACE
I’m sharing all this to let caregivers know that “stuff happens” along the caregiving journey — and sometimes it happens BIG. It’s okay to feel overwhelmed, frustrated and mad. Those are all very real, human emotions. What is not OK is refusing to give yourself grace.
Shoes wear out — so do clothes and vehicles. Humans do, too. When things are not cared for and protected, they wear out more quickly. So, take special care of yourself as you care for your loved ones. Don’t get fully consumed by being a caregiver; I know that is easier said than done. Find some time for yourself so that you don’t forget who you are and what you love.