VERN ELLISON

SHE NEVER SAID GOODBYE - Questions and Answers

by Vern Ellison

    I try in the book to point out the seriousness of the situation that is facing the citizens of this country, as well as the world, if a cure or a means of prevention, for Alzheimer’s disease is not found soon.

   The estimated 4.5 million present victims of Alzheimer’s disease in the United States, will reach an estimated 14 million over the next 50 years. 

   It has been called by some as “The Disease of the Century” that we are now entering.

   The first of the nearly 78 million “baby boomers” turn 55 next year, which was around the same age my wife started showing the symptoms of some kind of dementia.  It will be these “baby boomers” that will lead the way to reach the anticipated 14 million living victims in 2050.

   As the life expectancy of our population continues to grow the chances for becoming a victim of Alzheimer’s will continue to increase. 

   Although “She Never Said Goodbye” is just my wife’s story, it does document the many experiences a family like ours must go through over a period of years dealing with Alzheimer’s. 

   From the early years of life and happiness, marriage, raising a family and then the initial discovery of early stages of dementia, with the necessary testing, medication, financial and legal concerns, learning the role of a caregiver over the years and seeing a wife pass through the early, middle and finally the late stages of the disease is a rather devastating experience.

   I hope the story which “She Never Says Goodbye” tells, will assist families in planning for their final years, being aware that there is always a chance a family member might be hit with the disease, for which presently there is not cure or prevention.

2.  Q:  At what age does Alzheimer’s disease first start to appear in a person?

     A:  It is believe Alzheimer’s disease may go undetected in an individual for a long as 20 to 40 years.

    People as young as in their 20’s have been diagnosed with Alzheimer’s.

   The first symptoms appear at varying ages.  Studies estimate that 10% of those over 65 have Alzheimer’s.  

   By age 85 nearly 50% have the disease. 

   Again with the increasing life expectancy growing as a result of better medicine, many will live long enough to suffer from the disease.

3.  Q:  What was first thing you noticed in your wife’s behavior that caused you concern?

     A:  It was kind of a combination of things.  She was becoming more forgetful.  She seemed depressed frequently and was often confused.

4.  Q: I understand that a little over 7 out of 10  Alzheimer’s victims are cared for at home.  Why did you decide to place your wife in a nursing home?

     A:  My decision to put my wife in to a nursing home, not only a nursing home but a locked facility, was basically for her safety. 

    Although in her 50’s, my wife was in excellent physical condition from years of playing tennis and taking care of herself physically. 

    My main concern was  her potential to  escape from my care and  to wander off and get lost.  She was always in a wandering mode.

    I read about three cases in San Diego county, where the Alzheimer’s victim wandered off only to be found dead a day, weeks or months later. 

   There was no way I was going to chance  having that happen to my Sara.

5.  Q:  Is your wife on any kind of medication at this time and if so what kind?

     A: Sara has been on some kind of medication almost continually since 1992. 

   Her first medication was Xanax which is used for anxiety disorders and is in the same class as Valium.  This also includes Tranzene. 

   She was one of the first to take Cognex when it first was approved for use.  It inhibits an enzyme that breaks down the neurotransmitter acetylcholine.  Actylcholine is important for memory, so giving a patient Cognex might delay the progression of the disease.  In Sara’s case it appeared, at least to me, to have no beneficial effect.

   She has also been on Paxil and Zoloft which are antidepressants in the class called selective serotonin reuptake inhibitors (SSRIs).  The are also benefit panic disorders and post-traumatic stress syndrome.

   Wellbutrin is another class of antidepressant.
   
   Mellaril and Haloperidol are major tranquilizers.  For Alzheimer’s patients it helps treat hallucinations, paranoia and other psychiatric complications of Alzheimer’s disease.

   Premarin is estrogen for menopause. It also slows the progression of osteoporosis.  There is some evidence it may have benefit in slowing the progression of Alzheimer’s disease, but all the information is not in.   

   Provera is a progesterone product and is prescribed in combination with Premarin.

   Clonidine was developed to treat high blood pressure, but it is also being used to a limited extent for treatment of aggressive behavior in Alzheimer’s disease patients.

6.  Q:  When was the last time your wife spoke to you?

     A:  My wife has not really spoken for  the last year or so.  She has been able to say a word now and then, but only with a lot of encouragement and coaxing. 

   The last words I have heard her say was  “I don’t know,” which was in reply to my asking her what my name was.  That was on February 10th. 

   Prior to that it had been a number of weeks, when she had said once again, “I don’t know.”

7.  Q:  What did you know about Alzheimer’s before this journey began?

     A:  That is one of the reasons I have written, “She Never Said Goodbye.”

   Although I had heard of it, I really knew very little.  I had to learn along the way, often times the hard way. 

   That is one of the purposes of this book which is to try and help people understand what Alzheimer’s is all about and what a family might expect, particularly in the early and confusing stages as the disease takes hold of someone.

8.  Q:  What is your opinion about the nursing home care your has received over the past few years?

     A:  Prior to putting my wife in a nursing home, I visited a number of facilities before deciding on anyone in particular.

   The one I selected I decided was the best in our area, at least at that time. 

   Over the years, there have been occasional problems that have occurred but the nursing home staff has addressed those problems and resolved them the best they could. 

   For the most part I have not been disappointed with her care.  She is well liked  and although her decline continues, she is a good patient.

9.  Q:  How much does Medi-Cal (Medicaid) pay for your wife’s care?

     A:  When she first entered the nursing home in 1995, she was what is called, “private pay,” in that I paid for her care.

    That first year I paid approximately $34,000 for her nursing home care. 

    In 1996, when she qualified for Medi-Cal, the state reimbursed the nursing home at a rate of $80.88 per day.  At last check Medi-Cal pays $96.62 per day, but in Sara’s case she pays approximately $10.00 per day from her Social Security benefits, thus reducing the amount to approximately $86 per day.
     Since Medi-Cal took over paying for her nursing home care in 1996, Medi-Cal has paid over $126,000 for her care. 

   As long as she lives, that amount will continue to grow at approximately $86 per day, a figure that will increase each year. 

10.  Q:  It is my understanding that at some point, Medi-Cal will seek reimbursement from your estate to off-set the cost of  your wife’s care.  If that is true, how is that done?

      A:  Each year I receive a notice from Medi-Cal indicating that they indeed intend to bill my estate for Sara’s care. 

     One of the reasons I wrote, “She Never Said Goodbye,”  was try to possibly raise enough money to off-set the cost of her care. 

    Of course that means selling a lot of books. 

    Basically the way the notice reads is:  If I should die before Sara, the state will comeback against our estate for the cost of her care.  If Sara should die before me, the state will allow me to continue to live in our home until I die, then they come back against my estate, including our home, to seek reimbursement for Sara’s care. 

    Not that I have much to leave to my heirs, but we do have three children and a couple of grandson’s I would like to leave something to, rather then just to the state.

11.  Q:  Does your wife still know you?

       A:  I really don’t know if she knows me for who I am, her husband.  She sometimes seems show some recognition of me.

    When I smile at her she often will smile back. 

    When I give her a hug, I sometimes feel a hug in return.  But I don’t really know. 

    I use to ask her, “What is my name?” and she would say “Vern.” 

   Now when I ask it is greeted with silence, or “I don’t know,” being the last words I heard her say on February 10th.

12.  Q:  You are retired from both the U. S. Marine Corps and the California Community College system, as well as receiving Social Security benefits.  It would appear that you could afford to pay for your wife’s nursing home care without asking for a “handout” from the state?

      A:  When I was growing  up there was no such thing as Medi-Cal, Medicare, welfare, food stamps and all the other government give away programs that are available now. 

    I worked, in one form or another, since I was nine years old until I was 59.  I didn’t pay a whole lot of taxes, because I never made a whole lot of money.

    But I paid my taxes for Medi-Cal which is at least is one entitlement my wife is eligible for. 

   Unlike other entitlement programs, the state gets to come back against my estate for reimbursement.  I guess I look at Medi-Cal benefits as a “loan” and not a “handout.” 

   I believe one of the purposes of the Medi-Cal program is not to impoverish both the ill spouse and the well spouse. In some cases it just about does that, but that is another story, which fortunately I didn’t have to go through.

13.  Q:  Do you know how expensive Alzheimer’s is to the nation?

       A:  According to the Alzheimer’s Association the disease costs American business $33 billion annually- $7 billion toward the total cost of care plus $26 billion of lost productivity of caregivers.

14.  Q:  Would you know the average lifetime cost of care for an individual with Alzheimer’s?

     A:  According to the AA, the average lifetime cost of care is $174,000. Between what I have paid and what Medi-Cal has paid, my wife’s cost for care is approximately $160,000 and continues to grow at about $86 per day.

15.  Q:  Is there an official organization for Alzheimer’s disease.

       A:  Since its discovery by Dr. Alois Alzheimer in 1906, little effort apparently was put into finding a cure for Alzheimer’s.

     People back then, I guess people really didn’t live long enough to make Alzheimer’s disease a priority issue, when faced with polio, cancer, heart disease and various childhood diseases.

     As the years past however and the population started living significantly longer, Alzheimer’s disease became more and more prevalent.

    In 1980 a group of visionaries committed to eradicating the disease and supporting caregivers founded the Alzheimer’s Association. 

    Since that beginning, the Alzheimer’s Association  has grown to nearly 200 chapters with more than 35,000 volunteers who support people with Alzheimer’s, their caregivers and families.

16.  Q:  What actually causes the death of person with Alzheimer’s disease?

       A:  That is a difficult question to answer.  I am not a doctor and I think in some cases a doctor would have difficulty in answering that  question.

    The Alzheimer’s Association indicates that more  then 100,000 people die of Alzheimer’s each year.  But they also indicate the average life span of an Alzheimer’s victim is 8 years from diagnosis. 

    They also indicate that an estimated 4 to 4.5 million people presently have Alzheimer’s.   If all of this true, then dividing  8  years into 4,000,000  it would seem to me that at least 500,000 would be dying each year, and another 500,000 being diagnosed to replace those that died to keep the 4,000,000 plus figure steady.

     But back to the question. 

     Most people appear to die of complications related to Alzheimer’s.  As the disease progresses, they become incontinent, they can’t walk, they can’t eat, they can’t hold their heads up, etc., and probably the biggest problem as I see it, they cannot communicate with their caregivers when they have a medical problem.

    Thus the most common causes appear to be pneumonia and infections, along with stroke, heart attacks, diabetes, dehydration and osteoporosis.

    The point is they are going to die and being afflicted with Alzheimer’s, as I see it, hastens that death.