Last August and September, when the physical effects from my second bout of pneumonia in less than a year would not cease and desist and this current episode of Major Depressive Disorder was well underway, I became unable to do many of the things that I count on being able to do to be me and run my home.
What happens when a disabled person can no longer care for themselves and their home? Asking for help seems simple, perhaps, for those who’ve never had to, but for those of us who are used to doing for ourselves, it is quite complex.
The first part of the process was as simple as checking a box when I reapplied for assistance with food and paying my Medicare premiums. I checked the “Home Health Care” box on September 2, 2018, with much trepidation. I wasn’t sure what to expect next.
When I hadn’t heard about the “Food Stamp” part of my application by the end of the week, I went to the office. I was told since I had checked the home health care box, my application had been transferred to a neighboring county. I was perplexed.
After some bureaucratic shuffling, my food and medical parts of the application were transferred BACK to my home county for expedient processing. I was granted Food Stamps and assistance paying my Medicare premiums. Then I waited to hear about the other box.
In late September I received a phone call from a woman around 6:20 at night, who identified herself as a Case Worker for the Lewis-Mason-Thurston office of Washington’s whatever office… I did not recognize the acronym she specified. I was already discombobulated by receiving such a call after 5pm (what can I say, I take off my headset at 5, figuring I am done with “business calls”… sigh), and I answered in a manner that reflected such.
Now I was astonished. It had taken three weeks for this phone call, responding to what I considered a “scream for help” to have it considered by the ONE PERSON who actually received it as ‘a mistake.’
She asked, “Did you check the “Home Health Care” box by accident?”
“No, it was not a mistake,” I answered. “I need help desperately. I have not been able to recover from this pneumonia and I need help. I am having trouble bathing and dressing myself and I’m even missing church in spite of having a Dial-a-Lift ride set up.”
She answered in the affirmative and continued with my application. My home assessment for my application was scheduled for early October, about a month after I ‘cried for help.’
The evaluator was pleasant. I easily forgave him for indicating that my canine service companions were “gigantic dogs” on the assessment when he did accurately indicate the services they perform for me (in spite of being, technically a “medium” and “large” dog respectively). Mr. Evaluator had my evaluation (that indicated I was barely functioning with assistance from church friends and relatives) input into the system by late October.
I continued to wait.
My physician was angry it was taking so long. In mid-November, she ordered a different sort of Home Health Care. I had been unaware there was more than one type. It was so nice to finally have a bath-aide come in and help with some of the most difficult parts of being disabled.
Ironically, on the date of my first major fall (not just “ping-ponging” my way into the walls on the way to the bathroom), a device was delivered to notify my doctor’s office when I fell. They delivered it an hour after the fall that jammed and froze my shoulder. My doctor then prescribed a power chair.
When it was discovered that I leave my home for church and medical appointments, I was deemed “non-homebound” and the device was demanded back. The bath aids and physical therapist who were coming in every week for three weeks ceased. I was not eligible for THAT type of care.
I was offered my first caregiver, a person who had never held such a position, in late December. She had retrained after having worked as a bartender. She worked for 6 days before she called (14 hours before her next shift) to say she couldn’t come back to work because she couldn’t afford the gas to make the journey from the coast where she lived.
I spent Christmas and New Years without assistance. I spent a lot of time in light housecoats, being cold. My heating bill is skyrocketing.
In mid-January, a new caregiver started. Unfortunately, she did not work out. Yelling at me during a bath just adds to my menu of triggers. Yeah… Nope.
The next caregiver presented herself as having experience with mental health issues, then proceeded to gaslight me. Then, I spent an inordinate amount of time in my therapist’s office wondering if having a caregiver was worth it. I almost wish it wasn’t.
Face it, we ALL want to live long enough to become disabled, but NONE of us wants it to happen to us when we are still “with it.”
I succumb to the assessment that I am “hard to handle.” My mother and my first husband made a point of saying for years that “no one could handle [me].” Now that is getting in the way of “me” being “me.”
I have recently interviewed two ladies who I would like to work with me as a team. I pray to my Heavenly Father that the broken pieces of “my MEs” can play nice and allow things to be taken care of. Seriously. I’m tired of being naked and the dishes are piling up.