When The Doctor Says "Alzheimer's": Your Caregiver's Guide to Alzheimer's & Dementia

Although one in ten Americans over 65 has Alzheimer’s, it remains one of the most hidden, misunderstood diseases the world has ever known.  Neither a cure, nor technical medical advice, this handy book, written by a caregiver with over ten years personal experience and research caring for her husband, has some of the best first-hand advice you’ll ever come by.  Because patients appear so normal, no one believes anything is wrong.  Even cognitive tests can’t show the full extent of its devastation on the patient and the family.  Although the stigma is lessening, Alzheimer’s continues to be elusive, embarrassing and difficult to deal with.  When it sneaks into a family, few know where to turn: What caused it?  Will I get it?  He keeps falling.  He’s violent!  Why isn’t there a cure?  The doctor doesn’t understand.  What’s an MRI, MMSE?  How can the caregiver survive?  I feel so guilty.  Not every anguished question has an answer as yet, but many of them do, and understanding how to deal with much of it can be found in “When the Doctor Says, ‘Alzheimer’s’--”.  It’s a valuable must have, easy to understand finger-tip resource book for anyone involved in this overwhelming, confusing disease. 

For over a decade, Betty Weiss was the sole 24/7 caregiver for her husband with Alzheimer’s.  Naïve and in denial, she first believed she could live with a little forgetfulness.  But as the disease pursued its relentless destruction of their lives, she began to research and develop a better understanding of its symptoms and how to react to them. She found far too much information scattered all over, often too technical and dismaying to be useful.  As an occasional published writer, she has compiled her personal experience, philosophy and research into a comprehensive easy to understand book that gives Alzheimer’s caregivers instantly available suggestions to cope with the most common problems they face in this difficult and traumatic challenge.

*DIAGNOSIS*

Alzheimer’s is very elusive to diagnose.  The most common method is by trying to eliminate any other condition that may be causing the symptoms.  The diagnosis will likely then be ‘Probable’ Alzheimer’s, which is correct about 85% of the time.  A final accurate diagnosis can only be made with a biopsy of brain tissue usually done at autopsy.

Occasional memory loss, distractions, dumb decisions are not automatically signs of Alzheimer’s...far from it...everyone does those things.  But if your loved one’s memory loss is affecting his work; if he gets confused doing familiar things; if others have difficulty understanding him; if he is frequently confused about the day, time and place; if he doesn’t know how he got someplace; if he is making inappropriate decisions about everyday events; if he is unable to make pocket change, or work with numbers he always understood before; if he puts things in inappropriate places more than usual; if his moods and behavior become erratic; if his personality changes dramatically; and if he has lost interest in doing the things he normally does, then you might want him to see a doctor to determine if it’s more than normal distraction and forgetfulness. 

Dementia is a symptom, not a disease in itself, the same way fever is a symptom of a variety of medical conditions, but not a disease in itself.  Everyone with Alzheimer’s has dementia, but not everyone with dementia has Alzheimer’s.  It can come from dozens of other things such as a blow to the head, being an alcoholic, allergies, reactions to medications, depression and other diseases.

To tell or not to tell a patient that he has Alzheimer’s is a very personal matter and will often bitterly divide families.  But it’s best left to the primary caregiver to make that decision, based only on whatever makes the caregiver feel the most comfortable, she’s the one who has to live with it 24/7.  If the patient asks, “What’s the matter with me?” it’s perfectly reasonable to say something like, “You’re having some problems with your memory and the doctor is helping you with that.”  Honestly is the best policy when you’re talking about shoplifting, but honesty is not always the kindest thing you can do, and Alzheimer’s patients need kindness more than honesty.    

*DRIVING*

People seem to think that if someone is sitting next to an Alzheimer’s driver he won’t get lost so it’s OK, he can still drive, or he only drives around the neighborhood where he’s familiar with everything.  But someone in the passenger seat won’t keep him from driving into a store front, off a parking structure, into people at a bus stop, or into a swimming pool...you frequently see such ‘accidents’ by elderly drivers on the news.  Getting lost is not the problem.  People without Alzheimer’s get lost every day.  Being able to operate the car is not a problem.  The very real danger is the inability to react quickly, to assess a pending emergency without getting flustered, misreading the scene or being unable to read or see a traffic sign; it’s going the wrong way on a one-way street, misjudging distance and speed.  What will you do, sitting next to him, when he gets confused and turns in front of a truck?  It’s dangerous for him to even back out of his own driveway.  And it isn’t only confusion; Alzheimer’s patients develop visual problems that have nothing to do with eyeglasses.

Few things will be more difficult than taking away your loved one’s car, but it is imperative.  If he gets into an accident, even if it’s not his fault, the assets of the whole family can be wiped out, even if he has insurance.  Someone can be killed or seriously injured. 

You can disable his car, but in a lucid moment, he will call the garage or auto club, so you will have to tell the garage to say it can’t be fixed if he calls, and ‘lose’ his club card.  The car can also be ‘stolen’.  Tell him you reported it to the police but it’s never been recovered.  If you have only one car and you need to drive it, let him keep his key but file down one point enough so that the car won’t start.  Or get a remote starter installed where they sell auto alarms.  You keep the remote starter control on your key ring--your loved one need never know.  Or trade the car in for another make.  This will confuse him and he’ll likely let you drive.  Keep putting everything off until ‘tomorrow’.  Eventually, with the car disabled or out of sight, most patients forget about driving.  If it doesn’t cause too many problems, keep the patient’s car around if it makes him happy.  Learn more about driving problems and solutions at:

The Hartford

http://www.thehartford.com/alzheimers

Ageless Design

http://agelessdesign.com/FAQ-Driving.htm