I need a personal care assistant. My insurance, Harvard Pilgrim, covers it, but Massachusetts said I couldn’t have it without forking over a few hundred dollars a month because my income is not at the poverty level.
It’s a challenge to function when I can’t remember to check emails, voicemails, texts, or follow through on simple tasks like opening the mail.
I woke up at 11 pm and then again at 1 am. At 2:30 am I started writing.
Yesterday, after our clubhouse room, I collapsed from fatigue. My mind was on overload. That evening I cried for no conscious reason. Tears would not stop flowing until I drifted off to sleep.
At 7 am, I recalled I didn’t cry until I drifted off to sleep. I played a chess game with the computer, afterward, I felt discomfort in my chest, lasting only seconds. I decided not to play another. There were some other things I did but don’t recall now. I took my nightly medications.
It puzzled me that I cried. Lately, I have noticed my nonverbal communication does not correlate with my words. There is a disconnect in my communication style. For example, I smile while saying no to a question and get served an item I thought I said no.
TBI compounds sleep issues. I had a couple of neuropsychology evaluations where my fatigue was abnormally high. Last year, my PCP suggested I call the insurance about a personal care assistant who could help me organize my living space and life to function, pay my bills, and not lose things daily.
When I called Harvard Pilgrim, it took a bit to find someone aware of that service, but they said they would cover if the doctor felt it was indicated. However, the Commonwealth of Massachusetts had an income barrier that prevented me from accessing covered healthcare services. I couldn’t get a personal care assistant unless I shelled out several hundred dollars more a month for my healthcare, based on income where I barely got by.
Buying healthcare insurance or paying the premium is not based on income, so why should a covered service be subjected to income level by a State? In MA, I got sicker and poorer because healthcare was another weapon to shake down people like me who could not advocate effectively for themselves.
So I try to do what I can each day. Some days I am dead weight, just too tired to do anything. I listen to my body and rest on those days. If I can get outside for a walk, I accomplish something for the day.
Today I want to exercise. I also have to find out about my health insurance for next year. In October, I called Dartmouth-Hitchcock, who did not return my call. I’ll call today.
Those little things we do day in and day out to organize our time are called routines or habits. I struggle to re-learn consistent, productive habits.
Revised at approximately 7 am.
I didn’t cry until I drifted off to sleep. I played a chess game with the computer, afterward, I felt discomfort in my chest, lasting only seconds. I decided not to play another. There were some other things I did but don’t recall now. I took my nightly medications.
It puzzled me that I cried.
Lately, I have noticed my nonverbal communication does not correlate with my words. For example, I smile while saying no to a question and get served an item I thought I said no.
I have both Harvard Pilgrim and Medicare. In Massachusetts, for me to get the personal care assistance that Harvard Pilgrim covers, my income has to be around the poverty level to get a covered benefit. Otherwise, I have to pay a few hundred dollars a month to a Massachusetts agency, probably non-profit, which is not a deductible or co-insurance.
Well, dear Angela, while obviously troubled, you write lucidly and purposefully, and I commend you for unburdening yourself and using your blog effectively. Holding in would do no good and in fact would be the opposite of good. Those can only, IMO, be positive indications toward relieving your stress level. All your readers care….
Hi Bob. It’s relieving the stress and helping my memory. Also, I want to increase awareness of TBI.
When I was trying to get an attorney months after the missed diagnoses of concussion, new-onset hypertension, and abusive treatment at Tufts Medical Center, I recall one lawyer saying, so what could they have done anyway.
I didn’t respond then because I was confused, but I can now—a hell of a lot. And they can still do a lot, but I don’t have access. I don’t have access to the needed healthcare despite paying for two insurances where one provides the necessary healthcare.
I am a doctor who practiced emergency medicine and internal medicine, and I cannot get the healthcare needed to help my recovery.
Angela when you try to sleep is your room dark and quiet? What is your diet like?
Hi Rudy. It’s dark in my room. My diet is balanced except I need to eat more fruits and monitor my water intake. I practice good sleep hygiene. I have lived with an official diagnosis of chronic insomnia for over 10 years. Before that I tried everything that was available to me at the time for sleep.