Dear Gov. Parson,
I am writing to you from Blue Springs. I’m a single mom who cares for an adult special needs daughter in my home.
I am only one of your thousands of Missourian caregivers, who choose to keep their child, spouse, or grandparent in-home, rather than in a state facility.
I sense from one of your state departments that Missouri’s budget is ready to go for those who choose facility placement.
This grieves many of us and makes it impossible to secure services for those who do live at home
I’ve lived in seven other states and Missouri is greatly lagging behind.
Keeping a loved one at home saves the state money. You do know that, don’t you?
Yet every corner we turn, we are confronted with “placement,” and the HUGE budget which follows it.
While living in Missouri, I have made dozens of friends who care for their special needs family member at home. We all agree that this 24-hour care comes with heavy responsibilities.
Many of us, across the state, have come together at DMH, DHSS, VR, Health, Social Services and DESE meetings. We may even, on occasion, rock a department’s boat. And yes, sometimes, we may place a billboard on Route 54, to get a message through to a governor.
Yet no one is listening.
We acknowledge that we could not live without the extraordinary physicians, nurses, therapists and teachers in our family members’ lives. Many of them give 40-, 50-, 60-plus hours a week for those in need.
However, we too, provide a lifesaving critical service.
As family caregivers we manage every day of a family member’s life.
We are the sole administrator for a person who requires bathing, feeding, toileting, laundry, dressing, meal preparation, housekeeping, teeth brushing, appointments and medication administration.
Some days we have to add on sicknesses, injuries or falls.
Gov. Parson, please compare these vital medical staff working 40-60 hours a week, to us, immersed in our family members care 168 hours a week.
We oversee 168 hours a week of treatment, worry and every duty associated.
We need help.
Governor, many states have moved on progressively in the support of caregivers, but not Missouri.
As a result, this lack of support only places us, as caregivers, at an even greater risk for depression, anxiety, post-traumatic stress disorder, and other physical, emotional, mental and behavioral health issues.
We feel alone, overwhelmed, worried and isolated. Many times, we neglect our own needs, while caring for our family member.
We need policies, programs and resources to address our well-being, as caregivers. So we can continue to provide good health care, safety and protection to our family members with disabilities and chronic conditions.
Governor, it is time to create new programs.
Before the virus arrived, we have always had a shortage of staff.
Long before COVID-19, when we did have sufficient staff, the staff were always underpaid, had no sick leave, no overtime, and lacked health insurance.
Today, during this pandemic, many families have joined our ranks.
I’d like to share an experience from Monday of this week. My daughter gave me permission to share this.
I received early morning phone calls from my daughter’s two remaining healthy caregivers. Both reported they were sick with the stomach flu.
I thought, “I can do this. I’ve done this before.”
When I heard my daughter move, I raced to her room. She apologized that her bed was wet. She said her feet and legs hurt and she couldn’t get up to walk to the bathroom.
I smiled at her and told her, it happens to everyone.
I grabbed her gait belt and we walked side by side, with me mostly carrying her 170-pound body.
Once in the bathroom, I undressed her and got her safely seated. Then I hurried to grab the bedding, and start her laundry. I also pulled a wet mop along behind me.
After using Lysol wipes to wash off the mattress cover, I hurried back to the bathroom, pulled out towels, washcloths and shampoo, and positioned her shower chair in the tub.
As she stood up, she slipped on a wet spot on the floor and fell down. I went down with her.
I helped her back up to her knees, onto the shower chair and proceeded to wash her.
We both got wet. I dried her, dressed her, brushed her teeth, and helped her to the kitchen table and gave her the morning meds and some oatmeal.
When we were done with her breakfast, I helped her to a chair in my bedroom, so I could shower.
There she sat while I showered, dressed and brushed my teeth. I missed a day of work.
Governor, it’s hard to secure – and retain – good staff. Lately, this has been on the front page of every newspaper.
Although, for most people, those shortfalls will dissipate when the COVID-19 crisis is over and life begins to return to normal.
However, for Missouri caregivers, those deficits will continue.
Diane Mack is coordinator of Putting Families First, Jackson County's Family Week Foundation. Email her at Director@jacksoncountyfamilyweek.org.