Realistic Expectations

March 4, 2011

First, there are the excuses and rationalizations, the reasoning away of the increasingly frequent memory issues.  “He’s had surgery and is still confused from the anesthesia.”  “She’s just getting older.”  “I’m not surprised she got lost.  With all the road construction, the route to our house doesn’t look the same anymore.”  Usually, there is some type of event that brings the family to reality.  With my father-in-law, it was being fired from his “retirement job” of valet parking cars at the local hospital.  Unknown to us, he would lose cars, lose keys, stay gone for over an hour to park a car, etc.  Then, his doctor confirmed the diagnosis we were by that time expecting:  Alzheimer’s disease.

At this point in the process, every family wants to know what to expect. However, there are difficulties predicting the disease course in an individual, because it is different in every person.  I thought I was familiar with Alzheimer’s disease, having had two beloved grandparents who died of it and who had similar disease courses.  My father-in-law’s course of disease was very different, much quicker with many more behavioral problems.  Forming realistic expectations of what your loved one with Alzheimer’s disease will go through (how long he will live, what difficulties he will have, etc.) is at best a moving target.  There are some common themes, though, that you can reasonably expect over the rest of your loved one’s life.  In previous blogs, I’ve addressed most of these issues individually and how to deal with them.

  1. How long will it last?  Once a person has Alzheimer’s disease, he will live 7 – 10 more years on average.  You can reasonably expect to add to or subtract from that number based on your loved one’s general health and age when he gets the disease.
  2. The Search for Home:  People with dementia are constantly searching for that which is familiar, and the most familiar place is home.  Usually, this is the home in which she grew up, and not the home in which she lives now.  Because of this, someone with dementia may go to the mailbox and wander away on the way back to the house, because it doesn’t look like “home” to her.
  3. False accusations:  People with Alzheimer’s disease often falsely accuse people of things, often bizarre things.  The most common of these accusations is stealing.  These accusations are commonly directed at the caregiver, but often at others, too.  These “others” can be either real or imaginary people.
  4. Hallucinations:  These can take many forms.  Your loved one may see herself in the mirror and believe it is someone else.  She may believe people come to her house for evil purposes, that a photograph is a real person, or that what is on the television is happening in her living room.  These hallucinations also can have no basis in reality (i.e. insisting that a non-existent cat who recently birthed kittens is under her bed, that she received phone calls from strangers, etc.)
  5. Increasing forgetfulness:  At first, the forgetfulness mainly takes the form of forgetting to do common tasks (forgetting to take medication, brush teeth, change clothes, etc.) and forgetting things that happened (forgetting conversations, events, what she has for breakfast, etc.)  As time goes on, your loved one will forget how to do normal daily living tasks (dressing, bathing, eating, brushing teeth, etc.), and finally, will need these to be done for her.
  6. Wandering:  If your loved one can walk, you can expect wandering.  Every person with dementia who can walk should have a GPS bracelet.  They prevent horrific tragedies.  (www.projectlifesaver.org)
  7. Sleep disturbances:  People with Alzheimer’s disease often have difficulty sleeping the entire night.  When combined with the tendency to wander, this can be especially difficult to manage.
  8. Fixation on a few phrases or stories:  As he loses more of his memories of the past, a person with Alzheimer’s disease tends to repeat a few stories (and later phrases) over and over again.
  9. Incontinence
  10. Inability to recognize family members and other loved ones:  The person may call his wife’s name, but not recognize her.

Less common things which also occur:

  1. Combativeness, verbal or physical abusiveness in people who have never had this issue before
  2. Loss of Speech relatively early in the disease process
  3. Loss of ability to read, write and / or spell relatively early in the disease process
  4. Improper and embarrassing public behavior (yelling, sexual behavior, talking to strangers as if they are friends, disrobing, etc.)
  5. Personality changes

End Stages:  Currently, Alzheimer’s disease is a terminal illness.  Many of those who have it die of other causes and never reach the end stage of the disease.  For those who do, here is what you can expect:

  1. Loss of the ability to walk and later, to sit up
  2. Loss of the ability to eat unassisted
  3. Loss of the ability to communicate
  4. Withdrawal from surroundings (Although with techniques like music therapy, the person can often interact with others.)

I wish there was a moral and ethical way I could sugar-coat the realities of Alzheimer’s disease.  There is not.  However, my hope is that families who are prepared for the realities of the disease will be better able to deal with them.

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