In November of 2016, right after the election, my local state representative held a meeting to try and figure out where to head next. So many people showed up, the room was above capacity. I began getting more heavily involved and later became a precinct committeeperson in my town. I’ve been doing what I can since then. I will be poll-greeting again for the state primary in a few weeks. I knock on doors. I call. I write postcards. I subscribe to a fairly decent newspaper.
But, I’m out of spoons.
“The spoon theory explains that people living with chronic illness, chronic pain, and disability have limited energy resources and also expend more energy on everyday tasks than people without illness and disability.” from verywell.com
This applies to myself, as I have chronic pain, and can also apply to caregivers. Which, if you read further, you will grasp.
What is making me angry? Because of the policies in the USA, I’ve become selfish. And I hate that. This isn’t something new. This has been going on ever since I became cognizant of the cruelty of the government—and the ignorance of many of its citizens. You’ve heard the term, “we can’t have nice things?” Well, I’ve realized this since I was old enough to follow politics.
I am a late baby boomer, born in 1959. My father was a veteran of WW2. He was in the Royal Navy and left England in 1949 (with his parents and younger sister) because of the British economy. His parents and sister returned to England not long afterward—because of the NHS. His father needed treatment. They later returned.
My father and mother worked hard and did everything right. They voted in every election (mostly Democrat, but on occasion, they voted for a Republican if they were a better candidate.) They subscribed to multiple news magazines and both the NY Times and Newsday. They let me read anything and everything. All those years, they never had more than two weeks off a year. My father was an engineer and because they tend to move around, he never had a pension. My mother was a bookkeeper.
My grandfather died in 1971 and not long after that, my grandmother suffered a massive stroke. I don’t know the financial details. (My parents never really discussed finances with myself and my much older sister). All I know is that she was in a rehab facility for a year and then came back home to live with us. (Fortunately we had a full bedroom and bathroom on the first floor). I assume Medicaid benefits in New York at the time were generous. We had someone in the home during the week from 9 to 3 to care for my grandmother, as my mother still had to work.
Fast forward to 1983. My parents retired to the space coast in Florida. They didn’t have much, but they had enough to come up to visit us in Pennsylvania once or twice a year, and take vacations now and then. My father became a lay spiritual leader at a synagogue and my mother volunteered for the Red Cross.
In 2008, they were both diagnosed with dementia. My sister (who lived in Western NY) and I became out-town-caregivers. We did everything we could to keep them in their manufactured home. It took a lawyer (which we paid for) to get my mother (and later my father) on Medicaid. My father was very stubborn and refused to try and move up north, although neither of us (my sister and myself) had the funds to get a decent assisted living arrangement, etc.
They were forced to live on $4000 a month. Keep in mind, the at-home care received was minimal-not as generous as my grandmother had in the 1970’s. When my mother died (after 18 months in a nursing home) the allowed income fell to $2000 a month for my dad. (Medicaid income rules are draconian). Even though he was a WW2 veteran—it was not from the USA, so he got nothing. We tried. My sister and I had to pay for many expenses. (Which we did, of course).
So you see how this is going. Mom died in 2013 and my dad died in 2017.
And then—I have a disabled adult daughter with severe mental illness. This began when she was in elementary school. In Pennsylvania, they have a program where children with disabilities can get Medicaid without a parental income cap. She managed to graduate high school and college, but she owes a lot in federal student loans. Her work history has been sporadic and she has worsened as she ages. Now she’s on another attempt to get SSDI. (Been denied twice, even with a lawyer. Had a hearing over the phone with a judge, and now has to see two social security doctors. I can’t even deal with going into that further. If she loses her Medicaid, I don’t know what we will do).
Meanwhile, I developed a chronic pain condition when my kids were in preschool and 1st grade. I was a stay-at-home mom. I never thought it was life-long. When I eventually applied for SSDI (and I was also caring for my daughter) it was too late—I didn’t have enough work quarters in the previous 10 years.
So many others struggled more than we did. And I often feel guilty. But, I’m out of spoons. My focus (for years) has been what will happen to my children, especially my one daughter. And I’m now in panic mode. We’ve been here before, but John McCain is no longer here to save the ACA. The democrats have taken a butter knife to a gun fight. The other party is okay with fascism. Many politicians and the wealthy are out of touch and don’t seem to give a crap. Our main hospital system where I lived was destroyed by for profit hedge fund managers and closed.
Groups are pitted against one another.
Every day is more frightening.
And now I’m selfish. I don’t have the energy to do what I wish I could. To the United States—You made me selfish. And I despise you for that.
Not long before my dad died—he was still fairly lucid, and he despised trump—he said, if I had known what would have happened here and how people are treated, I would have moved the entire family back to England.
I was shocked. He loved this country and was one of the most patriotic people I have ever known. I’m glad he’s not here to see this. And to see his normally politically active daughter say, I’m out of spoons.
I do go to a NAMI support group once a month. And I have a therapist. But, thanks for reading my vent.
