I count my blessings daily that my grandmother is able to live alone and care for herself with the assistance of aides and nurses from a Home Health agency, a weekly housekeeper, and a revolving door of church members, friends, neighbors and family members who see to her every need. In recent years, two separate falls in two separate summers resulted in stays in the nursing home for therapy and rehab, and there is just no way to describe the mountains of paper work and red tape that accompany even a stay of a few days in the nursing home.
And so I remind myself each January that all of the paper work that must be completed annually to keep the services coming for my grandmother are nothing compared to those of summers past.
This year, I learned in late October that my grandmother's Medicare Part D Pharmacy Insurance provider was no longer going cover her two most expensive drugs - to the tune of $300/month. Thankfully, Medicare.gov provides information on all of the insurance companies, and if you know what medicines you take and the dosage, you can plug them into a "formulary" and see a comparison of these companies and determine which one best meets your needs. I did all of this and made the necessary arrangements to change my grandmother to a new provider on January 1st. It really wasn't that hard... just time consuming. Of course, that was in large part due to the leg work I did two years ago to get the initial coverage, and sometime soon I will post that saga for reference. Because of that experience, I now have a telephone number that provides me direct access to a Medicare case worker in Dallas, and we are on a first-name basis! Needless to say, her number is programmed into my cell phone!
So, I was able to get the prescription drug coverage changed to a new provider fairly easily, and shortly before January 1st, the annual application forms started to arrive for renewing services and benefits like my grandmother's monthly food stamps (a whopping $10). Honestly, it would be easier to write her a check for $120, but she is entitled to this assistance, and by golly, she intends to have it! So, I fill out the forms each year. Usually, an interview with a case worker at the Department of Human Services is required, and I have met more than once with a woman named Amy* to review the forms I completed and get her signature for the monthly $10 assistance. This time, I was given the option to sign up for a telephone "interview," and I completed the forms, made a copy of my grandmother's latest bank statement, and mailed it all back to DHS.
A few days later, I got a letter saying that my telephone interview would be the next day with a caseworker named Sue*, and that I needed to submit a copy of the latest bank statement. I called DHS and asked for Sue*, and I explained that the appointment time I was given conflicted with taking my grandmother for her weekly appointment with the hairdresser. Sue* asked if I could talk right then, and I said I could. She asked if my grandmother owned her home; did she pay rent? did she have any other income than Social Security? did she pay insurance? Over and over the answer was "No." I explained that my mother owned the home and my grandmother lived there rent free. Sue* said she would need a letter from my mother stating this. She would also need a printout from the pharmacy showing all of my grandmothers activity there for the past 6 months (some 6 pages or so), a copy of the homeowner's insurance policy if my grandmother paid the insurance premium (she doesn't); a copy of her bank statement, and a copy of one of her utility bills. I mentioned I had already sent the bank statement, and she said, "I didn't know that... I haven't seen the application yet." So... how could she have sent me a letter telling me she was missing that information if she hadn't seen the application?!"
The next day during the hour my grandmother was at the hairdresser's, I was gathering the letters, printouts, etc. required, so that I could get the application and all of the requisite forms in the mail the following day. I put the envelope in my mailbox that morning. That afternoon when I retrieved our mail, there was a letter from Amy* at DHS stating that my grandmother had been approved for Food Stamps for another year - $10/month. I had to laugh. My mother and I joked that we had never known of DHS to work quite that fast! BUT... the kicker came last week, in the form of a letter from Sue* at DHS - some nearly 3 weeks later, stating that my grandmother had been approved for the $10/month in Food Stamps! We again laughed -- does this mean she will actually get $20/month?! We are not naive enough to actually believe this, but we did have to wonder aloud. And we also had to shake our heads once again at the bureaucracy and ineptness of this situation and ask for the umpteenth time, "What do seniors do when they have nobody to fill out the forms, do the leg work, copy bills and bank statements and manage to traverse the maze of red tape and paperwork that is our "system" of care for the elderly?" (*names changed)
But that's not all! There is a community action program that serves several counties in our area, and they provide a myriad of services to those in need, including the elderly. One of their programs is assistance with utility bills, and my grandmother has benefited from this program for a few years now. There are, again, probably 6 pages of papers to complete for the application, and you have to show proof of income, expenses, send copies of utility bills and bank statements. But she usually gets a credit to the gas or power company (depending on the season) for somewhere around $80. Since her gas bill to heat her house in December was almost $200 (told you she kept it warm!) this credit is very important to her.
Since we're "on the list" for this assistance, I didn't have to request forms this winter - the agency sent them automatically, and I completed them and returned them by mail the next day. (Little side note... my grandmother called to see if I had noticed in the paper that this assistance was available. I told her I had seen the notice, but that we didn't have to worry - the agency had sent me forms, and I had already completed them and they were ready for mailing. She said, "I always got faster results if I just drove them over to their office!" The office is located in a city 45 miles from ours! I told her I was putting these forms in the mail!
Probably a week later, I got the forms back, marked "denied" because my grandmother's address had supposedly changed. In truth, the agency had mistaken MY address for my grandmother's. She has lived in the same house since 1988. I telephoned the case worker - four days in a row - and explained to the receptionist that there was a computer error, probably, and that nothing had changed since our last application in the summer, and would she please have the case worker call me. On the fourth day, with much exasperation, the receptionist connected me to the case worker. I have no doubt she felt if she kept putting me off, I would give up and stop calling. However, the case worker did answer, and she could not - or would not - understand that my grandmother had not moved... that the address was mine and the forms came to me as my grandmother's Durable Power of Attorney (DPOA).
The caseworker kept telling me I would have to fill out all of the forms again and resend. I asked what happened to the forms I filled out the week before, and she said, "They are no longer valid." I asked why, and she would regurgitate the spiel about the address being wrong. I maintained that the forms were correct, and asked could she not just scratch out my mailing address and move the application forward? She refused to budge - the application filled out a week earlier was "no longer valid," and I would have to fill out the forms again AND send a copy of my grandmother's latest bank statement. This was all for an $80 credit that is awarded on a first-come, first-served basis. It has now been almost 2 weeks since I sent the second set of forms, and I have yet to hear whether my grandmother was indeed awarded a utility credit for the winter or not.
My grandmother is on a very limited income. She is not destitute, nor would we allow her to go without anything she needs or wants. But for many, a utility credit and/or Food Stamps are critical to their survival. And yet, the agencies make it so complicated to apply for assistance and virtually impossible to speak to case workers, and we, as caregivers end up feeling like vicious bulldogs because we have to fight and scrap for even a connection to a "real person" who can give us real answers.
I honestly don't know how this will be resolved, but I shudder to think about what will happen if/when I reach the age of 95. Who will fill out forms for me and make phone calls and persist on my behalf? Who will advocate for you and your loved ones? Who will advocate for your elderly neighbors and friends? I have, on occasion, asked a case worker, doctor, nurse or "customer service" rep how they would respond were this their grandmother. While I have encountered caring, capable people who have helped me tremendously in caring for my grandmother, I have also endured those who, for whatever reason, have hardened themselves to the point that their clients are just a number or a form to be addressed. Sometimes they need to be reminded that these folks are people - mothers, fathers, grandmothers, grandfathers, successful business men and women from all walks of life. I don't know who will advocate for me if/when I get to this stage of life, but I know there are a lot of us out there today trying to make it all work for those in our care, and I'm just praying there will be somebody ready and willing to do the same for me.
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