Asking for Help

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.

Ruger’s got me

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.

The screen has changed slightly since I applied six months ago

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?”

The tip of a wooden cane on the floor

“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.

Dog toy between the wheels of a wheelchair on the floor

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.

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A Darkness Within the Light

About a week ago, I asked my therapist how long this particular Major Depressive Episode had been going on. Without a pause, she answered, “Since the summer.” I could have saved a bit of time and checked the publication date of my last blog post — on ALL of my blogs. I have not written except for assignments for school, since summer.

“Since summer,” the words rang in my head.

I thought back to summer. My summer was great! In July three grandmas (including me) took four grandkids on a ferry boat to Vashon Island where I spent some of my teen years. Then, in August, my mom and I trekked to Alberta, Canada to see the area where her mother was born. We also drove back through the forest fires in British Columbia, resulting in my second case of pneumonia within a year. This time I was not to recover nearly as quickly as I had the previous Christmas.

As the infection abated in early September, I found I was not able to physically care for myself. The symptoms I thought were lessening from the Fluoroquinolone toxicity had started again to worsen while we were in Canada and kept getting worse until I could barely lift my left arm. My left shoulder was “frozen.” 

I finally requested help. I had no idea AFTER you humble yourself and ask for help, it can take literally months before help arrives! I applied for home health care through the state process in early September. In November, my physician was fed up with the lack of movement on my case and made her own recommendations and referrals. It was interesting being the subject of “Adult Protection Services” at the mere age of 52. 

“Carrie the Caregiver” and me celebrating “Blue Friday” #GoSeahawks

I sit here now, on December 15, finally having employed a wonderful home health care assistant with the help of my local assistance office. I have left a large part of my privacy and pride far behind as I am venturing into the life of having a “PCA” (Personal Care Assistant). But I am finding that I am also making some great new friends as well as getting my life back.

Another change will be coming soon. After suffering several significant falls (not just saying “hello” to my good friends–my walls), my doctor has suggested that I sit down. The pain, numbness, and weakness in the tendons of my feet and legs have progressed to the point where a powerchair has been prescribed. I will make sure to post with photos when it arrives!

Jaina Anita Ellen Capley Grandchild #4 (Photo by Siobhan Capley – Jaina’s mama)

This holiday season has been a dark one for me, but I am coming back into the light.  This will be the first Christmas for my newest granddaughter, Jaina Anita Ellen Capley, and I plan on enjoying her and the rest of the grandchildren to the fullest!

I hope everyone reading this has a wonderful holiday season. Please don’t let the shadows pull you in.