Who Decides?

By the time beauty shop/errand day rolled around, the week had already been quite busy.  On Monday night, Greg and I hosted a "family dinner" for everyone - Mam-ma, my mom and her husband, my sister and her husband, and my niece, her boyfriend, and baby Timothy.  Afterward, Timothy spent the night and most of the next day with us.

Tuesday evening, Greg and I had an appointment at our church to have pictures made for the new church directory.  I had scheduled an appointment for Greg's mother 10 minutes after our appointment, so she rode with us to the church.  But when we got there, her name was not on the list.  I told the volunteer, "I know I scheduled her for an appointment," and then Greg's mother said, "Yes, I made one, too."  "What?  You made an appointment?  Why didn't you tell us?"  Her reply... "Well, you said you made an appointment, so I just didn't think I needed to worry about mine."  I went to the church office and tried to find her name on a schedule sheet for another day, but I was not successful at first glance.  Meanwhile, she and Greg decided that we should all three be photographed together, which was fine ... and that's what we did.  I am still not sure why she felt it was unnecessary to tell us that she had made an appointment and duplicated our efforts.  In the end, the pictures turned out really well, and it will apparently all work out just fine.

Friday, I got to Mam-ma's house, and she was working on the new baby quilt.  Mom had taken her to Wal-Mart on Monday evening before coming to our house for dinner, so that Mam-ma could pick out new quilt batting and backing material to replace the fabric she ripped off the week before when my sister tried to help her.  Apparently this quilting set-up is still not perfect, but working much better than what my sister helped assemble.  Mam-ma had already quilted around several of the Winnie-the-Pooh characters.

I sat down at the kitchen table to dispense medicine, and atop the grocery list was an old, used tube of some sort of prescription cream.  I recognized the tube, and on the grocery list was "itch cream".  I told Mam-ma, "We've already tried this... the pharmacy said the prescription was so old that they could not refill it without asking the doctor, and when they called him, he said we would have to come in for a visit first."  Mam-ma glared at me.  I continued, "I am not taking you to the clinic for itch cream and risk you catching the flu or some other bug."  "But I need it!" she whined.  I reminded her that we had talked about this before, and I had gotten her hydrocortisone cream as a substitute. 

She glared at me and said, "Well, if you itched like I do, you'd understand how bad I need that!  It works so much better."  I told her, "I itch nearly every day because of my allergies - I do understand.  Use the hydrocortisone cream."  She said it "wears off."  I countered... "Re-apply!"

I suggested that the next time a Home Health nurse comes by, Mam-ma should ask her to call the doctor's office and see if she can get the cream refilled.  But I am not taking Mam-ma to the clinic for an itch cream.  I would not take myself for that reason, and it's not worth exposing either one of us to the potential germs and viruses that might be represented at the clinic.

I took the name of the cream with me to the pharmacy at Wal-Mart and asked what OTC substitute he would recommend - hydrocortisone.  So she has a new tube.

Meanwhile, I'm doling out the meds, and Mam-ma says that her friend Ruby is "going stir-crazy."  She added, "She's like me... she needs to get out and go somewhere and do something."  I laughed and said I guessed I was just different, but I can stay home for days on end and never get bored.  Mam-ma said, "Well, that's because you don't like flowers."  I do like flowers - but I don't care about gardening, and I told Mam-ma this.  She replied, "Well, I love to work in my flowers, and I feel better when I garden.  My muscles are not as sore, and I just do better."  I replied, "You know...  they said you could garden at Southridge."  She retorted sharply, and at a loud, high pitch, "I'm not a-goin' to Southridge!"  I laughed and said that was fine ... I was just saying that the lady told me they had two gardens and that Mam-ma could bring her shovel and other tools and "garden" there. 

Mam-ma came over to the table and stood over me and asked, "Do you want me to move to Southridge?"  I told her no... I wanted her to be happy - and to be safe. If she is happier in her own home, that's where I want her as long as she can live there safely.  She then asked, "Well, just who decides whether I go to Southridge or not?"  I told her she does.  "It's your decision."   She glared at me, and I just smiled at her.  "MINE?" she asked.  "Yes..." I answered, "whose did you think it was?"  "YOURS!" she retorted.  I explained that as long as she was mentally capable of making decisions, the choice was hers.  Should she become unable to think clearly, then yes, I would decide.  But for now, the choice was hers.  She replied, "Well, I'm not a-goin'!"  I told her that was fine.

Later that day, I saw my sister at Wal-Mart, and she said, "Oh, I had quite a conversation with Mam-ma last night.  She told me 'Y'all have taken away all of my privileges, and I've not been able to get it together since.  I can't cook any more, and you know I love to cook!'" (another thing she could do at the assisted living facility)  My sister tried to remind her that she could still cook - but only when someone was there with her to help.  She didn't acknowledge that.  Then she told her "A lot of that food they got for me (meaning Meals on Wheels) I can't eat."  My sister chided her about how she probably wouldn't starve. 

For clarification purposes, my sister is the "golden one" who can get by with saying things to my grandmother that I cannot.  On a few occasions she has filled in for me when I was sick and taken Mam-ma to the beauty shop and run the errands.  Mam-ma usually cooks my sister lunch beforehand - and buys her groceries at the store afterward.  I neither want nor need the lunch and/or groceries, but I think you get the picture of how this all goes.

So my sister said that she tried to explain to Mam-ma that we are only trying to keep her safe and out of the nursing home by asking her not to use her stove any longer - and she pointed out that she can still use her microwave and toaster.  Mam-ma flatly told her she had no intention of going to the nursing home!  This all gave me huge insight into why she had so quickly flown off the handle to me about going to the assisted living facility... it was continuing the thread of the previous evening's conversation!

After we had church pictures made on Tuesday, we went by my grandmother's to check on her.  Catching her off guard, she was more alert and able than when she knows we are coming!  She was smiling and happy to see us - and of course, a lot of that was because Greg was with me.  She told us how good the Meals on Wheels lunches were, and that she had really not had anything bad yet. (She told my mom that her lunch on Monday - chicken strips - was "horrible - the worst one yet!")  She is telling us the lunches are good - but she is telling everyone else how bad they are - sort of a reverse of the way she normally complains to me and tells everyone else how things are fine.

Mom and I tallied this week alone, and Mam-ma had a big dinner at our house on Monday, pork chops and gravy for dinner at a cousin's on Wednesday, and Mom took her butter beans and cornbread another night for dinner.  Then Saturday night, Mom made vegetable soup and took her some.  Mam-ma had already re-heated the rest of her Meals on Wheels lunch, but she told me, "I'll toss that in the dirt - I ate the soup instead.  It was delicious!"  So she is eating well - and in no danger of starving!

An elderly cousin telephoned me one night last week, and we talked about the situation with my grandmother.  He lives in a condo on the campus of the assisted living/nursing home facilities.  Before his wife died, they shared an apartment in the assisted living facility for a while, so he is quite familiar with the facilities and what is available.  He told me, "Anyone in town with any sense would wonder why on earth your grandmother is not already at the assisted living facility."  He was not being unkind, or implying I am using poor judgment - he knows my grandmother about as well as anybody.  He was merely pointing out that I should not feel badly if she has to move there. 

I asked him, "Does this mean you are on my team if I need reinforcements to encourage her?"  He assured me is is indeed in my corner.  I took this as one more sign that I am not off base in making preparations. 

Honestly, we are feeling like it may be sooner than later that this move occurs.  My cousin said, "Two weeks of living there, and I bet you wouldn't be able to get your grandmother to move back home."  He thinks she would really enjoy the company of others and the activities there. My mom doesn't buy it for one second.  I am just not sure.  I want to think my cousin is right, of course.  And I know that Mam-ma will never admit to me that she likes it, even if she is having the time of her life.  But I have to believe that my philosophy is right for now - as long as she is relatively safe and able to live in her home, she should live there.  The minute that changes, she should move.  The question of "who decides" will be determined by these factors.  Ultimately, the decision maker will probably be me... and I'm okay with that.

Meanwhile, my mother-in-law has returned to her family physician for a follow-up visit.  Her sacroiliitis is better, but her dizziness is not.  The doctor changed her blood pressure medication, added a diuretic, and scheduled her to see a cardiologist and a physical therapist.  There is apparently new therapy that may help with vertigo, so the doctor wants to try it and see if this helps with the dizziness.  Three mornings this week of therapy, then another doctor's visit at week's end.  Greg maintains that the doctors will find something to treat, even if there is nothing really wrong.  He is monitoring this closely, because our past experiences have made us wary of all of these tests, diagnoses, and treatments.

Friday, I was running errands with my grandmother while Greg was taking his mother to doctors and therapists.  And so the cycle begins anew.  Friends came from out of town to visit us this weekend, and they asked, "So what have you been up to?"  Grandmas and babies... with "life" sandwiched in between.   The complexity of the layers changes daily, but the components stay pretty constant... at least for now.

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.

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!

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:

• http://firecrackerbaby57.blogspot.com/2006/02/medicarerx-drug-plan-is-fiasco.html
• http://firecrackerbaby57.blogspot.com/2006/02/keep-your-fingers-crossed_10.html
• http://firecrackerbaby57.blogspot.com/2006/02/its-over-hopefully.html
• http://delisandwich.blogspot.com/2008/11/if-its-november-it-must-be-time-for-new.html

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.