Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts

December 27, 2012

Getting Your Face on a Smucker's Jar...

When it appeared fairly certain that my grandmother would live to see her 100th birthday, I did a GOOGLE search for Willard Scott and found his website and the requisite forms to complete for submitting Mam-ma Polly's name for consideration as one of the centenarians featured on Willard's segment during NBC's "The TODAY Show."  Sponsored by Smucker's, the celebrants' photos are superimposed on a Smucker's jelly jar label, and Scott tells a little something about the honoree. The information on the website stated that the forms had to be submitted at least six weeks prior to the actual birthday.  Since Mam-ma's birthday was November 5th, I sent the forms in early September.

The information also stated that either we would receive a phone call to let us know that our centenarian would be featured... or the honoree would receive a card in the mail.  Neither happened.  Shortly before Christmas, I cleaned off my desk... and I threw away all paper work related to this endeavor.  I decided I must have failed to complete the forms correctly or something. 

December 22nd, our telephone rang, and Caller ID said the number was "PRIVATE".  Since this is what shows when the Hospice nurses call, I feared the worst... but I answered.  The caller was a gentleman from Willard Scott's office.  He apologized for the delay, explaining that they were behind on airing the segments, but my grandmother was scheduled to be featured on Monday, December 24th, between 8:00 a.m. and 9:00 a.m.  He asked about our time zone, and I told him we were on Central Time.  He explained that the segment would air on the East Coast between 8:00 and 9:00 - and repeat for us the following hour.  He said, "Set your DVR for 8:00 a.m. to 10:00 a.m."  I set mine for 7:00 - 11:00!!

So I let EVERYONE know!  I made sure all televisions at the facility would be turned on and set to the appropriate channel.  My mom let the church administrators know, and they made a BIG SPLASH about it Sunday morning at Mam-ma's church.  I think everyone in our community of about 7,000 people sat glued to their TVs Monday morning... along with family members and friends from coast to coast.  And Willard Scott was not on.  They did segments on all sorts of things, from ugly Christmas sweaters to revealing the sex of a baby expected by an Olympic volleyball champion... but no Willard Scott.


So we regrouped and set the DVRs for Christmas Day.  This time, Scott was on... and a long segment aired, featuring several centenarians... but no Mam-ma Polly!  Would she ever be featured?  That afternoon, the phone rang again, and the same man apologized and said they were still very behind, and he thought that Mam-ma's segment would air on December 26th.  I told him how disappointed we were, and he kept saying, "We have no control over what they do... the segments are pre-recorded, and we don't know when they will air."  So we regrouped once again.

Wednesday morning, a friend posted on Facebook that she was spending the holidays in New York City, and she had just seen Mam-ma Polly on Willard Scott's segment!  So I started letting people know that we WOULD see the feature.  Sure enough, somewhere around 8:30 a .m., Central Time, Willard Scott's birthday feature aired... and there was Mam-ma on a Smucker's label!  Soooooooooo... in case you missed it... here is my Mam-ma Polly... now forever known throughout America for her peanut brittle!  I hope you enjoy it!  (Watch all the way... she's almost the last one featured!)



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September 05, 2010

Things Can Change in a Heartbeat

I've been reminded this past week just how quickly things can change, particularly when it comes to senior citizens.  One week ago Friday, my mom ran errands for my grandmother and took her to the beauty shop, so that my husband and I could go to an estate auction out of town.  We took my husband's mother along.  My husband was so attentive and hauled our purchases to the car for us, got us cold bottles of water from our cooler and even brought his mother a lawn chair to sit in and rest.

The auction was a BIG one, and it lasted until well after lunch time.  We had our Yukon packed to the rafters with purchases.  My mother-in-law was particularly excited about a box of beautiful china dishes she got that were made in Germany.  She also got  an old foot locker to refurbish.  We enjoyed a late Subway lunch with her afterward before we headed home to unload our purchases.

By Sunday, Greg's mother was complaining of back pain.  She and her friends bought hand weights to use when swimming at our new Community Center pool, and she had used them for the first time on Thursday ... and she said she and her friends exercised pretty vigorously.  Then we stood a lot of the day for the auction on Friday.  On Saturday, she worked in her garage, standing on a concrete floor to sort the things in her boxes.  Somewhere in there, she got her electric lawn mower from underneath the house and mowed some high patches of grass in her yard.  And during all of this activity, she twisted her back badly ... to the point that she was sore on Sunday and in a lot of pain by Monday.  She started taking Aleve ... and lots of it ... but the pain was still fierce.

Her pain progressed each day to the point that by Wednesday morning, she was vomiting and dizzy.  The doctor was called, and he said, "Go to the ER."  My mother-in-law had never been to the ER ... will hardly take an aspirin.  She decided to wait a while and see if she felt better - and I truly think she did for most of the day.  But by the evening, she was worse, so my husband stayed with her for the second night in a row.


By the next morning, the pain was again so bad that my mother-in-law was dizzy and vomiting any time she tried to sit up.  So my husband called an ambulance and transported her to the ER.  The diagnosis was sacroiliitis, which the ER doc described as "excruciatingly painful."  He prescribed bed rest and several medications:  pain pills, muscle relaxers, steroids, and an anti-inflammatory drug.  She is not to stand or sit for long periods of time, nor bend over or lift more than 10 lbs.  The doctor said that once you have this, it's much easier to get it again and/or re-injure yourself.  So my mother-in-law, who is incredibly vibrant and active and belies her 84 years, will have to make some serious lifestyle changes in order to avoid further injury and pain, once this episode is over.

Meanwhile, my grandmother's dear friend and fellow church member - a man she depended on for everything from changing light bulbs to supplying her with fresh produce from his garden (not to mention wonderful friendship) - passed away Friday from cancer.  He had taken his wife and Mam-ma to a local Visitor Center to hear a musical performance last Saturday night ... sat with fellow church members at an after-service fellowship reception on Sunday night.  By Tuesday, he was in a Little Rock hospital, where he died Friday morning.

These two events have given me pause.  How did things change so quickly from one Friday to the next?!  How did a woman who was buying German china and old trunks end up flat on her back and incapacitated a few days later?  How did a man's cancer progress so quickly that he ate with friends one Sunday evening and was dead and buried before the next weeks' morning worship?

The point for those of us who are caregivers is that everything is fluid.  What is going smoothly this minute can be totally screwed the next.  Two winters ago, my grandmother attended a birthday party for a friend one Saturday afternoon, talked with my sister that evening around 7:30, and by 9:30 she was violently ill.  She ended up in the ER with five infections and was not only hospitalized for about 5 days ... she was then sent to the nursing home for more than a month of rehab!

So just because today is a good day doesn't mean everything is rosy or you can get complacent.  You have to stay on top of your game ... and ready for anything.  Just like your small child's fever can spike in a half hour - an elderly person's whole world can change in a matter of minutes.  In order to "keep all the tops spinning," you must be prepared and "bring your A-game."

And one more thing... while we were at the ER, I was once again reminded of the importance of taking an advocate along.  My mother-in-law was given Valium to ease her discomfort and make her more relaxed.  So when the radiology technician came to prep her for a CT-scan, there was no way she could answer the 2-page questionnaire concerning her medical history and health concerns.  Thankfully I was able to do this for her.  AND... since I had gone with her to her last doctor visit, I knew that there had been some question about her renal function ... and a discrepancy in her blood work.  I mentioned this to the tech, and she said, "Ohhh!  We're not going any further with the CT-scan until I see the results of the blood work."  Since the CT-scan required an injection of dye, it was important that the radiology tech be alerted about even a possibility of some problem with the kidneys.

Furthermore, when the diagnosis was made, the doctor began talking about medication and going home, and my husband and I questioned him about his mother's pain.  She had arrived by ambulance, unable to move without being dizzy and/or throwing up.  Six hours later, the doctor wanted to send her home by car and start oral medications that we were to go and collect at our local pharmacy.  My husband asked, "Why can't she have something for pain in the hospital and let it have time to work before we leave?"  My question was, "Why can't an 84-year-old woman who lives alone and is about to be given heavy medication for excruciating pain be admitted to the hospital for a few days?" 

The answer to my husband's question came down to a matter of liability ... if she was medicated and left - and then fell in her garage getting into the house and broke her hip, the hospital didn't want to be held responsible.  Apparently they thought it was better for her to get into a car, ride across town, get out of the car, walk into her house up several steps, and then get to her bedroom and into bed and then take pain medication when we could get it from the pharmacy.  We didn't get this answer all at once in this concise manner ... but rather through a period of hems and haws and hints that led to our ultimate deduction that liability was the concern.

The answer to my question was, "There are certain criteria that have to be met for hospital admission, or Medicare and other insurance won't pay.  If we admit her, we can't guarantee she will meet all the criteria and be totally covered."  This seemed absurd to me... I have no doubt that between the ER doc and the personal physician, some finagling could have been done to assure that my mother-in-law met the criteria ... if she didn't already! And while I appreciated their concern about her money, this was not the issue at the moment!  Again, I felt there was an attempt to cover the hospital and any liability.  And people think we don't need health care reform!

So ultimately, we left the decision up to my mother-in-law, and she opted to get some pain medication in the ER, give it time to kick in, and then go home.  My husband signed a paper saying we relieved the hospital of any liability for the pain pill.  Don't get me wrong ... I do not like hospitals.  I was not necessarily advocating my mother-in-law stay ... but at the same time, her medications would have been monitored, she would have been given food and snacks that fit her dietary restrictions, and trained professionals would have hopefully monitored activities such as getting out of bed to go to the bathroom, showers, and more.  To be so hesitant to admit her seemed ridiculous to me ... but paled in comparison to failing to treat her pain and sending her home in the same shape as she arrived.  And had we not been with her ... or one of her elderly friends or a neighbor had brought her instead of us ... this is exactly what would have happened.

To top it all off, her discharge instructions included being told to that her family physician wanted her to be "in his office in the morning at 8:30." 

My husband decided he would wait until the next morning and see if his mother could even get out of bed before considering whether to make this trip.  The next morning, he telephoned the doctor's office to see if he could determine why the doctor wanted to see his mother, and the nurse said, "That's crazy!  She spent six hours in the ER yesterday - why would we want to see her today?"  Needless to say, the trip to the family physician's office was cancelled.

I cannot say this loudly enough, DO NOT LET YOUR LOVED ONES GO TO THE DOCTOR'S OFFICE OR THE HOSPITAL UNATTENDED.  Virtually everyone needs an advocate to go with them for medical exams and consultations, and you absolutely cannot leave someone alone in the hospital for any length of time.  Don't let the medical staff intimidate you.  Ask questions, and stand your ground.  Don't leave until all of your questions and concerns have been satisfactorily addressed.  If anything sounds strange or doesn't add up, ask about it. 

Be sure you make the medical staff aware of any and all medical conditions or anything else you feel is important and would affect the patient's care and treatment. Do not be intimidated or bullied by health care professionals.  Be polite, but firm.  In my mother-in-law's case, the doctor had given his diagnosis, stated his opinion and plan for treatment, and left the exam room.  We had to ask the nurse to find him and ask him to return, so that we could question him further.  And this is perfectly within our rights... and yours. So often, the patient is in no condition to challenge anything or give information.  Advocates are vital to the health and safety of medical patients ... and the same can be said for those who are in nursing homes and assisted living facilities.

Think of it this way... if we were talking about an infant or a small child, we wouldn't even consider letting him/her go to a doctor or into an emergency room for treatment without an adult in attendance.  We shouldn't allow this to happen to a person of any age, but particularly older adults.  As the advocate, be vigilant and thorough.  Pay attention, ask questions, and stand up for your rights.  Your loved one's well-being - or very life - may depend on how well you represent them.

June 09, 2010

Ten Steps to Easier Care of Your Senior Adult


Knowledge is power... and I've harnessed many of my personal experiences into a list of ten steps that can help you better manage the care of your senior adult.  They are not rocket science, but I bet some of them will be new to you - or offered in a manner you had not previously considered.

The leaflet is only $3 and is available in PDF format... e-mailed directly to you.  You can order online using the info on the left-hand sidebar of this blog... PayPal and credit card payments are accepted. 

More informational data sheets may be offered at a later date.  If you have suggestions for topics that might be helpful, please contact me.  I welcome your feedback!

November 07, 2009

Here We Go Again With Medicare!

On November 5, 2009, my grandmother celebrated her 97th birthday. She is in excellent health and still lives alone in her own home. She is able to do this because of the vast assistance from her family and various agencies, including our county's Home Health department, assistance with utility bills twice a year, Medicare, Medicaid, and her monthly Social Security pension of $759. I serve as her Durable Power of Attorney and handle all of her business transactions for her.

When the Medicare Part D Prescription Drug Plan was enacted in the fall of 2006, I selected what I felt was the best plan for my grandmother. Shortly after January 1, 2007, I discovered that Medicare had "switched" my grandmother to another plan without my knowledge - a plan that did not cover her prescription medications. It took some work and the assistance of a very helpful Medicare official in Dallas, but I was able to get my grandmother switched back to CignatureRx. This was not the end of the story... there were continual struggles with CignatureRx, because drugs they said were covered in 2006 seemed to mysteriously be "no longer covered" as the year progressed.

In 2007, I learned that CignatureRx was no longer a good fit for my grandmother, due to lack of coverage and the addition of premiums and deductibles. So I repeated the process to search for a new provider, and I chose Humana. I have to say, the folks at Humana were wonderful and very customer-friendly. They tried to tell me that two of my grandmother's most expensive medications were not going to be covered, but after hearing from her physician, they gave her a "lifetime waiver" on those drugs - she could receive these drugs for the initially-agreed-upon co-pay. I thought I was set! I learned in November 2008 that "lifetime waiver" was only good for one year - that in the insurance company's terminology, a "lifetime" equals one year.

Medicare employees confirmed to me in November 2008 that most seniors will have to re-apply for coverage EVERY SINGLE YEAR, due to changes in formularies, premiums, deductibles, and more. So once again, I am searching for an insurance provider that will adequately cover my grandmother's seven daily prescription drugs.
I know this is lengthy, but believe me, I have condensed it greatly. If you were to read my blog posts of February 2006 and November 2008, you would see some of the ordeal that has transpired:

Aside from the obvious concerns over how this is handled... here are my issues with this plan. I am a 52-year-old former elementary school teacher with a MS in Education. My husband and I founded a magazine and publishing business. I know how to navigate "red tape" and make appropriate contacts, yet I still struggled with this one. If getting prescription drug coverage is this difficult for me, imagine what it would be like for seniors trying to do it themselves. They get through two pushes of the menu buttons (and there are dozens!) and they give up and go away. I figure this is the hope of many of these bureaucracies. As concisely as I can make it:

  • Medicare Part D is another example of how convoluted our health care system is.* The average senior cannot figure this out on his/her own, and I seriously doubt most have advocates to do this for them. Even four years into this, I still have to call my Medicare connection in Dallas for clarification and confirmation. I got this contact because initially I complained loudly to everyone from then Governor Mike Huckabee to Congressman Marion Berry, both of my senators, and others. Most seniors won't have the resources - or patience - to do this. (See my first blog post link for info on the responses - or lack thereof - I received!)
  • I try not to let my grandmother know how much is involved in getting this coverage each year; however, sometimes she is required to verify information on the phone for representatives, etc., so she does know there is work involved. One day she said, "I'll just not take those medicines." I quickly told her this was not an option! But I fear that this is indeed what many seniors are doing... rather than fight the phone menus, comparing plans, and more, they give up and forego needed medications. This system is designed to shoot them down quickly and frustrate the seniors into quick defeat.
  • The Medicare Part D Prescription Drug system is not equitable. So far, because of her meager "income," my grandmother has qualified for a waiver on premiums and deductibles on certain plans. Many others do not, and those premiums and deductibles add up quickly for older Americans on a fixed income. And what happens when the plans get so out of whack that my grandmother and others like her no longer qualify for waivers on these fees, as well?

  • The "donut hole" is ridiculous. The mother of my mom's neighbor had to have an extremely potent antibiotic last January. The doctor could have given her injections, which would have been covered somehow by the insurance provider as a "medical procedure" perhaps. Instead, he prescribed oral medication - to the tune of about $3000 per month. This meant that this lady was thrown into the "donut hole" in February! I have a sick feeling this is in no way an isolated instance. Yes, it was a mistake made by the physician, but it shouldn't be possible. Physicians need to be treating patients, not keeping up with which forms of certain drugs are covered by insurance companies - and how!

Thankfully, I am now semi-retired and have more time to devote to keeping my grandmother in the necessary assistance to sustain her in her own home. We've done three stints in nursing homes for rehab following injuries and illness, and that is not where she needs - or wants - to be. And frankly, keeping her at home is far more economical for the federal government, in terms of capital outlay for her care.

The bottom line for me is that this system is not working for our seniors, and it's almost as if - as a nation - we don't care! As I understand it, presently the government cannot regulate premiums, deductibles, and formularies for the pharmaceutical companies. I believe it is time to revisit this situation... and maybe this is where the public option could help... something that seniors could choose that would cover their medications without imposing these fees and restrictions. I wholeheartedly support the President's health plan, and I believe that, sadly, this fiasco with Part D coverage is only one small part of a much bigger problem. But it is one that desperately needs to be addressed.