Sunday, August 11, 2013

Traveling a difficult road with Alzheimer's

My wife, Clare, was diagnosed with coronary artery disease in 1993 at the age of 47 and since that time has been on a daily cocktail of heavy duty heart meds that, most of the time, have enabled her to maintain a decent quality of life.  Clare’s father died at 57, her mother at 72, and her brother at 65 … all due to heart disease … so we did not take Clare’s diagnosis lightly.  When Clare had a particularly “bad heart year” in 2000, we decided not to press our luck and retired earlier than planned so we could travel before Clare’s health deteriorated further.  

And travel we did!  We flew across the Arctic Circle to walk on glaciers.  We strolled across the Great Wall of China and through Red Square in Moscow.  We explored Machu Picchu in Peru and meandered among the giant tortoises in the Galapagos.  The list went on and on.  But on one of our marvelous trips, I noticed something terribly wrong with Clare … and it wasn’t her heart.

Discussions with fellow travelers are usually about family and trips previously taken or planned for the future.  During discussions on one of these trips, I noticed Clare forgetting personal information … and I don’t mean common memory lapses often referred to as “senior moments.”  For example, she’d talk about our two grandchildren … forgetting that we had four grandchildren.  Or she’d talk about how much we enjoyed a previous trip to Paris … but we had never been to Paris.  Or she’d say how much she wanted to take a trip to Russia … a trip we had already taken.  And it wasn’t just memory.  Clare always had an excellent sense of direction, but she was now getting us lost in cities when we were on our own.  She was misplacing objects, losing objects, and just seemed confused at times.

After that trip, I went online to check out several responsible websites and was starting to became convinced that Clare was showing some possible early signs of Alzheimer’s Disease (AD), despite her young age.  I expressed my concerns to Clare and we made appointments to see both our regular doctor and a neurologist.  I started keeping logs of Clare’s worrisome behavioral symptoms to show to doctors, but symptoms I was observing at home were never present during doctor visits!  Brain scans and blood work appeared normal, and Clare was acing brief cognitive screening tests.  For the next 3 years, Clare he was treated for stress, anxiety, or depression … not Alzheimer’s.  It was now 2006 and Clare had not yet turned 60. 

It was only after Clare’s test scores dropped significantly that she was given more comprehensive testing, which eventually led to the diagnosis of “early” or “young” onset AD, a month after Clare turned 63.  My first step was to seek out a support group for Clare to join, so I contacted The Alzheimer’s Association.  The Suffolk branch sponsored more than 30 caregiver groups … but not one was for people with AD.  I then contacted the Alzheimer’s Foundation of America, which led me to LIAF, the Long Island Alzheimer’s Foundation in Port Washington.  They had a support group that met weekly for those diagnosed with early to moderate stage AD, and after a brief evaluation Clare was accepted into their program.  They also had a support group for spouse caregivers meeting simultaneously in a nearby room.  At Clare’s first meeting, I brought a copy of Newsday with me, fully expecting to read it in the LIAF lobby while Clare was in her meeting.  However, Clare insisted that I give the spouse caregiver group “a try.”  Feeling my shoulders were broad enough to handle anything that might come my way, I said no.  But Clare was insistent. “Please try it just this one time, just for me.”  How could I say no?

It’s now more than three years later and I don’t know how I could have survived without my weekly support group.  My LIAF support group helped teach me ways to deal with my daily stress, along with providing many practical tips and strategies that I could never have learned anywhere else.  We support each other emotionally in a non-judgmental atmosphere.  My participation in an online support group solely for spouse caregivers at also helps alleviate stress and provide information.  Our spouses may not all share identical symptoms, but we all “get it” and understand what life is like for each other as an AD spouse.

What is my life like as an AD spouse caregiver?  It’s a life of daily stress.  It’s also a constant learning curve, trying to remain patient when Clare asks me the same question over and over, or where to find this or that, or for help finding something she has misplaced.  It’s trying to remain patient when she can’t follow a simple one-step direction, or when she starts telling me something but stops in mid-sentence, having forgotten what she wanted to say.  It’s trying to enjoy watching Clare’s favorite TV shows with her over and over again each afternoon and evening.  When the daily 24/7 stress became too overwhelming a few months ago, I placed Clare in day care programs to give myself 14 hours of respite time each week.

AD is much more than memory loss and inability to see things right in front of you.  Many with AD undergo severe personality changes resulting in angry ranting and socially inappropriate behavior.  Fortunately, Clare has retained her sweet personality and disposition so, for example, we can still eat out in restaurants.  Of course, before we reach our car in the parking lot she will have forgotten what she ate.  But, “in the moment” she will have enjoyed herself and have had a good time.

I could share other AD symptoms, but it’s not pretty.  There are concerns about falling and wandering.  There are personal hygiene issues.  In later stages, Alzheimer’s leads to incontinence along with loss of all other cognitive and motor functions.  The “average” person with AD dies within 8 years of diagnosis, although the range can be as short as one or as long as 20 years. I have already been to 8 funerals in 3 years to support members of my support group.

November is Alzheimer’s Awareness Month.  Alzheimer’s disease is now the 6th leading cause of death in this country and the only one among the top ten killers for which there is no effective means of prevention, treatment, or cure.  It is also the fastest growing cause of death among the top ten killers, with an estimated 5.4 million people already suffering from Alzheimer’s, about 250,000 of them under the age of 65.  It is estimated that 1 in 8 people over 65 will eventually be diagnosed with AD; for those above the age of 85, the rate increases to 1 of every 2.  So, as baby boomers turn 65 at the rate of more than 10,000 each day, and as our population lives longer, the estimate is that more than 15 million people will be suffering from Alzheimer’s in 3 or 4 more decades. 

Despite concern about rising national debt and the need to reduce government spending, we need to increase funding for Alzheimer’s research into effective ways to prevent, treat and cure this disease … and to increase support to  organizations providing programs that are helping people with Alzheimer’s and their caregivers.  For 2012, costs to Medicare and Medicaid for caring for those with Alzheimer’s are expected to total $140 billion.  Costs are projected to increase to more than $1.1 trillion by 2050 if nothing changes.
Published in a much reduced version in Newsday's op ed "Expressway" column under two titles ... in print as "Our Hard Road with Alzheimer's," and online as "Traveling a difficult road with Alzheimer's," November 24, 2012, p. A21.  Access at:


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