Thursday, January 31, 2008

Have You Read...

When Heads and Hearts Collide is a book written by Arline Chandler about her experience of caring for her aging parents. In this book, Arline shares the difficulties she encountered in deciding to place her parents in a nursing home. She also relates several instances of conflict with her mom and dad as they clung to their independence while growing increasingly dependent on assistance from others as their health declined.

When Heads and Hearts Collide sells for $12 per copy and makes a great gift. For a limited time, Arline is offering FREE SHIPPING on all orders. This book is a great resource for anyone who is involved with caring for an elderly person. To purchase When Heads and Hearts Collide, send $12 per copy to: Flying Horse Press, 201 South Ninth Street, Heber Springs, AR 72543. Allow 2-3 weeks for delivery.

Tuesday, January 29, 2008

Make a List - Check it Twice!

If you don't have a "file" for the papers/information related to caring for your loved one, you probably should. I have a designated area in my office where I keep all of the papers and information for my grandmother, and I have let other family members know it is there, in case of anything happens to me. Here are some other things you might want to consider keeping handy:

  • If you don't have Durable Power of Attorney (DPOA), you probably should. I needed this document in order to act on my grandmother's behalf when she entered the nursing home for rehab. It also gives me the authority I need when talking to representatives for her prescription drug insurance coverage, the bank, the Department of Human Services (DHS), and even the utility companies. You can download forms from the Internet for starting the DPOA process, but you may need to consult an attorney to make sure everything is in order, and most certainly you will need a notary.

  • Keep a list of your loved one's medications - and the dosages - in your wallet, so that you have it handy if/when he/she needs medical attention. (For that matter, keep one for yourself, too!) I have saved a lot of time and frustration on several occasions by being able to hand this list to a medical person. They were able to photocopy the list and/or quickly note the info in their files and return my list. If you don't do this, you are setting yourself up to someday be faced with repeating this information numerous times to different medical personnel. Save yourself the frustration - keep an up-to-date list handy!

  • Keep a list of your loved one's "numbers" - Social Security, Medicare, Medicaid (if applicable), checking account, insurance policy numbers, utility accounts, and even burial information (if there are pre-arrangements and/or a burial insurance policy).

  • Make a list of persons to contact in case of emergency. This, again, is a list that can save you some heartache down the road. More than once, in the frenzy of trying to handle an emergency situation, I have forgotten to contact a cousin or two about my grandmother, and I paid for it later! I now have "the list," and I keep it in my wallet!

  • Make copies of your loved one's keys - house, vehicle, etc., in case of emergency.

  • Once you have DPOA, you should probably get a signature card for your loved one's checking account, and if there is a safety deposit box, you should probably get on "the list" to be able to access it.

  • If your loved one has a Living Will, be sure you have a copy (or copies). If your loved one does not have a Living Will, I strongly encourage you to consider getting this document. It could save everyone a lot of anguish down the road. If YOU don't have a Living Will, you need one, too!

You may think of other things you need to list/localize, so that caring for your loved one is as "un-complicated" as possible. If you have additional ideas that you feel would be helpful, please share them. When it comes to caring for the elderly, the phrase "it takes a village" certainly applies. And remember, as caregivers, we must think about keeping our own "house" in order. If something happens to us, we need to have everything in shape for whoever takes our place so that your loved one's care and well being are uninterrupted.

Monday, January 28, 2008

Every Day is Different

My phone rang while I was in the shower. When I checked my machine, my grandmother had left a message. "I need you to call the telephone company," she said in a voice that conveyed she might need medical attention. "My lights have gone out, and I can't call anybody, so I need you to call the telephone company and tell them my lights are out. When I called her back, I determined that she had heard a very loud "boom" (probably a nearby transformer at the power pole) and then she had lost electrical power. She was able to call me on an old rotary dial telephone she still uses. At 95 years of age, my grandmother is still well enough mentally and physically to live alone.

After determining that the power had been off about an hour, I told my grandmother I would report the outage to the power company for her. She told me her neighbor across the street still had power, and he had said he would report it, also. This told me the outage was fairly localized. Her parting words were, "I've not got any heat!" For a woman who keeps her home what feels like a sultry 90 degrees or warmer, this was tantamount. I knew it was not a terribly cold winter day for us... somewhere in the mid-40's, and I assured her she would be fine until hopefully we could get the power restored.

I hung up and telephoned the power company, and immediately, I was connected to an automated voice mail system and given a menu for selecting the proper number to report an outage. "I see you are calling from telephone xxx-xxx-xxxx. If this is the number at the location where a problem exists, press 1. If not, press 2," the voice said. I pressed 2. I was then instructed to enter my grandmother's telephone number, and then the voice verified the name associated with that account, and I was to press more numbers to confirm. After probably 6 more sets of menus, the recording told me that the outage had been reported, and that service should be restored within the next 2 hours. I was asked if I wanted a telephone call to confirm the power had been restored, and I punched the appropriate numbers to confirm this, thinking a phone call would appease my grandmother.

I telephoned my grandmother to tell her that the power would be restored within the next two hours. "You have GOT to be kidding!" she said. I assured her I was not. She told me again how loud the "boom" had been and how she didn't have any heat. I told her I felt she would be fine for a couple of hours, and that the power company would call her - and they had assured me this would be within the next two hours. She said that was okay and we hung up.

That is not the end of the story - almost never is with 95-year-olds! Some 30 minutes later, my phone rings, and it is a friend of my grandmother's - a sweet little deacon in her church who is 86, I believe. "Debbie," he says, "your grandmother is in a mess!" He begins to relay the same story about the loud "boom" and how nobody on my grandmother's block has power. I assure him I have contacted the power company and THEY assure me it will be fixed within the next two hours. He tells me, "I've called every number between here and China, and I can't get anybody to talk to me!" He goes on to relate that he immediately got the voice-automated systems - "those computers" as he puts them. He says, "I'm sorry, but when my company got computers I told them if the world comes to an end, we'll have to wait for the computer to shut down first! But your grandmother is in a real mess."

I asked if there was another problem I didn't know about, and he said, "Well, no, but her back door is open and that cold air is just blowing in and she has no way to stop it!" Now, the "back door" to which he referred was my grandmother's garage door, and without power to her electric opener, she could not lower it. Inside her garage, she has TWO entry doors to her house - a wooden door AND a "storm door." The air was not exactly "blowing right in her door" as had been described. But I thanked the nice man and assured him once again that I thought everything was under control, and we hung up. I have no idea how many deacons and others my grandmother called during the three hours or so her power was off. I honestly don't think I want to know!

When the appointed hour that the power company had given me for restoring the power arrived, I telephoned my grandmother once more. She sounded like a much younger, much healthier woman, and yes, her power had come back on, and all was well. "My toes got a little cold before that," she threw out... "but I'm fine now."

I understand the deacon's frustration. Those automated menus ARE daunting... and most seniors simply give up and sit in the dark - or call their grand-daughter or some other "youngster" to help them. But I do wonder about those who don't have a younger person to call for help. How do they navigate the maze of automated menus, red tape, mountainous paperwork, and inconsiderate or impatient "customer service" reps and case workers who are assigned to lend a hand? And how do we as caregivers cope with these same representatives while keeping our sanity and our patience for responding kindly to those in our care?

Recently I told my 17-year-old niece that I was trying to understand the lessons God has for me in my encounters with my grandmother, and she asked, "...and just what have you learned?!" I told her that I was learning that "it" is most often not about me... that most days there is some other "issue" and I just happen to be the nearest target for venting frustrations. In today's instance, the bottom line was heat and her fear that her thermostat might dip below 80 degrees for a few minutes! I am trying not to take things too personally - a tough one sometimes, I admit - and I just try to do what has to be done to rectify the "situation of the day" and move ahead. Today it was power and heat... tomorrow it may be her dentures! But for the moment, all is quiet, so I say "Crank up the heater and celebrate!"

Forms, Forms, and More Forms

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, 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.