2007
I know that I overreact when "the system" is defeating me...whether it is an annoying customer service set of electronic voices that get me nowhere when I try to resolve an issue with an account. I can't help but complain at the government bureaucracy that makes me show up with my birth certificate and wait 2 hours to get a replacement social security card--only to have them spell my name wrong on the new card and completely mess up my tax filings. And I know that the government benefits system has been abused, or thought to have been abused through the welfare system, and various other "giveaway" efforts. But God, it IS true, you just can't fight the system sometimes.
But, as Allen, my friend who is fighting cancer, found, we simply have to believe that "the system" will part the Red Sea when the simplicity of a person's impending personal disaster is brought to light. And so he did. In 2007, Allen had to stop working. His pain and inability to cope with a full day of work caused him to decide to try another route. His doctors had pressed for it for some time. He was 56.
He went to Social Security to see about filing early. He was told it was possible, and given a largish volume of paperwork which caused him to labor at home over a copy of his 7" thick medical file, citing all of the doctors, all of the procedures, all of the facts. He worked on it for hours. When he brought it back, he was told he would either need to come at 7:30 a.m. or make an appointment. He asked after an appointment, and was told the earliest available was in July (this is in April). So he rose early and was the first person at the center the next day.
Before going over his lengthly paperwork, the counselor at Social Security told him it would take as much as six months for an early filing. He looked her square in the eye and uttered words he had not said aloud .. "What if it is an end-of-life issue?" To her credit, she reacted the way I hope that any of us would...she asked him to describe what he was going through as briefly as possible, and he did. Shaking her head, she told him she would put him through the process that rushed payments to those with end of life issues...so that his first payment (of an amount that he can live on, $1,700 a month) would come in August. He was grateful, and asked..."What am I supposed to do until then?". She pointed out the SSI (short-term) program, Medicaid, and Food Stamps.
Allen swallowed his pride and visited each of those programs. That hard, hard sentence, "What if it is an end-of-life issue?" was spoken to each of them. He has trouble uttering it, even to me. And each of the programs returned to him the highest possible allowance they could. And in each instance, the paperwork was copious, the lines long. "It took my mind off me, for awhile", he said. It is good for him to know that his voluminous regimen of prescriptions will now require no co-payment, thanks to Medicaid. SSI and Food Stamps effectively give him a total of $750 in aid per month.
He's a little comical, as he's always been when he relates the story of his food stamp counselor, who was sipping a Starbucks latte when she gave him his food stamp grant. He said to her..."This is $5 per day for food...is that really the maximum?" She nodded sadly. Privately he noted that her venti latte might have cost more than a whole day of benefits that food stamps provide.
Faced with a serious shortfall (his rent is $800), he asked for other sources of aid at SSI. They pointed him to the county. At the county, a monthly grant of $300 was promised, beginning in May. It took two days of exhausting, nearly all day visits to fill out applications and meet with a county counselor, but he returned home convinced he would be able to make his May rent, and somehow the rest would fall in place.
He investigated hospice care, determining that it would be his last resort, since he is limited there to 180 days, and he hopes to have slightly more than that. The doctors believe his next exacerbation (other than increasing pain and the appearance of more distended lymph nodes) will be blood appearing in the matter he coughs, and in the intensity and racking length of the coughing. He determined not to go to the hospice until that begins to occur. And he still believes that he has more than just months left. I don't think he focuses on how difficult those months will be; for him, for his son, for his friends.
The county called near the end of April to tell him the $300 grant had been denied after all. When he returned the call, he could not get through to anything but a voicemail box, so he went to the county office at 7:30 in the morning. 2 counselors told him he "makes too much" for the aid, referring to the $750 combination of SSI and Food Stamps. He asked for a supervisor. A long wait ensued, followed by a long conversation. The supervisor granted the $300 for one month only, and gave Allen a list of homeless shelters.
Allen will not end his life living in a homeless shelter.
Allen went to Catholic Charities. A lifelong Catholic, he explained why he required assistance. CC directed him to his parish. The parish told him aid would have to come from Catholic Charities. He decided to stop. He probably will sleep in on Sunday mornings from now on.
Some might say this struggle with the system provided a diversion for Allen. Something to stir his focus and his anger....letting him forget his physical pain and his fear that the end is near. They'd be wrong. The governmental struggle is just one more indignity at the end of a long and hardworking life. Having paid into the system for 40 of his 56 years, having given extensively to the church and paid taxes as a homeowner for 15 years before he was forced to rent in his Florida county, Allen will not live long enough to reap the benefits he's earned.
He's going to a county commission meeting - to try to speak, and let the county know that they are missing an element of humanity in their programs to care for those who need it most. I'm sure he will be eloquent.
His advice to me, to you?....buy traveler's checks. $40-$50 a month for as long as you can. Don't put them in a bank, put them in a safe place where no one knows about them, except your closest confidante. $2,000 in traveler's checks would have seen him through to the beam of daylight at the end of his particular tunnel.
If you have disability insurance now, it might end when you stop working through no fault of your own. You may have relatives that can help you, but even if you do, make sure you have some money to bridge you through the fight to the funding that is supposed to help you get through the last days and nights. No one is invulnerable. No one is ever prepared for a financial struggle that brings you to your knees when you are already battling a demon.
Allen won't come to live in my little house unless he truly is out of options. If he can stay in his apartment, he will be with the simple surroundings that mean so much to him. He can't stand the thought of me seeing him in the kind of pain he hides in that apartment. He's right. I couldn't stand it either.
Somehow I know that we will find a way to keep him where he is, some way that won't offend his dignity. I hope that way will help him avoid more of what he's just gone through, his struggle with how unimportant his disaster is in the grand scheme of things.
And I've started to amass my small collection of traveler's checks. Just in case.
