Inside the Mind of Alzheimer's

I would like to try to take you into the mind of an Alzheimer's patient for just a few moments.  The task is difficult but the first thing you must do is forget all of your basic assumptions and your particular logic.  You must take your steps of logic one at a time.  Typically we run through the logic steps quickly, coming to a conclusion and acting upon that conclusion.  Not necessarily so with memory patients.  To grasp what is happening we must put aside our realty and try to see the world through their eyes.  We take the first logical step and if we do not recall if we acted upon that step, then we act on it without even a notion that perhaps there is another logical step beyond that first one.

Reasoning is the process of consciously making sense of things, for establishing and verifying facts, and changing or justifying practices and beliefs based on new or existing information.  Consider what happens, though, when the information you receive is never new and it never existed before?

As family and loved ones of the patient we must continually be alert to the digressive nature of the disease AND to the basic human instinct of hiding our faults.  An article by the Alzheimer's Organization is very helpful and I strongly recommend reading it.  I have a copy of this online for you to simply read. You can see the link to the article at the end of this blog entry.

Dad does have moderate to severe Alzheimer's.  On the Alzheimer's Association scale he has most of Stage 5 and most of Stage 6 symptoms.  The neuro-psychological world does not prescribe to this scale.  As the Alzheimer's Association says, it is difficult to place someone in a particular stage as they overlap.

What can Dad do and what can he not do?

• reflexes are very slow and therefore he does not drive.
• requires verbal reminders because he ignores written ones
• is not able to balance a checkbook
•  has lost most of his understanding of cost and money. Sometimes unable to tell you if 50 is less than or equal to 100 without some time to figure it out.
• is unable to recall recent events, as recent as two hours ago.
•  cannot count backwards from 100 by 5's or 7's. 
•  is not able to plan, manage or organize complex tasks such as shopping, making a grocery list (for example his last list to me asked for 24 boxes of cereal.  His pantry already contained 12 of them)
• is not able to communicate health concerns to his physician
• is unable to recall his current address, telephone number, location, date, day of the week, etc.
• knows who he is and the names of his children but rarely recalls his grandchildren's names
• personality changes include more tearful moments, ease in expressing emotion but prone to agitation and outbursts of anger
• is closed-off during social settings and is rarely unsure of the time frame or reason for the gathering
• experiences disturbances in normal sleep-waking cycles
• unaware of surroundings other than his one apartment
• cannot tell you where something is in his apartment if asked
• has repetitive behaviors such as scratching his arms, fidgeting to the point of causing damage to clothing materials and arms of chairs, etc

Dad is able to care for his personal needs, bathing, etc... or so we assume.   I check his dirty laundry and track towel and clothes usage and so far have not been able to detect any changes or lag in their use.  His toiletries get regular use.  A nurse will be involved in double checking beginning in two weeks.  It will be masked as a weekly physical but they look for areas that may not be getting clean, extra dry areas or damaged skin such as rashes or fungus.

His kitchen is always clean although he does not do deep cleaning and so either my nieces come over to do it or, like I'll do tomorrow, I'll get down on my hands and knees in the bathroom and do some hard-core cleaning.  He will tell me he keeps up with it and I will not show him that he actually is not doing a good job in that department.

So back to the idea of getting in to his mind - you've seen a bit already.  He believes that since he runs the broom over the floor that everything is clean.  In his mind it is simple:  there is no garbage on the floor and no one steps on dirt therefore it is clean.  Let's take this from another viewpoint, though.

Here are a few examples and I'll start with the now-infamous coffee pot disasters of March, September and October 2012.

Coffee pot overflows one day - it is broken - throw it away

Coffee pot is gone - coffee grounds not needed - throw them away

There is meat in the freezer - obviously I eat meat - my diet is fine

I do not recall eating lunch today - I must not have eaten - I'll eat again

I don't recall having a bowl of ice cream today - I will have one

There is no mail to read - I must not have gotten it - I'll go check (up to 4X day)

I don't remember if Kurt was here today - call him to ask when he's coming today
The floor appears clean - therefore I obviously clean the floor 

Today, what would you assume did not get accomplished if you did not remember doing it?  Laundry, breakfast, dishes, teeth, kids' lunch, bills paid, phone calls made, Facebook updated?

Getting the idea?

I have a sour gut - haven't had this in years - call Kurt for medicine

What he doesn't realize is that is the third time that week, and the fifth time that month he has made that call.

I just received a wonderful phone call from XYZ - it's been months since the last time we spoke

Haven't spoken to XYZ in a long time - they must not know that Mom passed away 

I can see HOW it can be easily justified in the minds of family and friends to not visit, call or write an Alzheimer's patient.  They won't remember it so why bother, right?  Frankly that attitude disgusts me.  Those who forget the Alzheimer's patient will be among the first the patient forgets.  Then how will you feel the day you show up and that person has no clue who you are?

Dad loves cards and letters.  He feels loved and remembered and he treasures them for weeks, keeping them next to his chair and sharing them with me every day.  Often he calls to tell me he got a card or letter from so-and-so and you can hear the joy in his voice and smile on his heart.  Does it really matter if he doesn't remember your phone call from yesterday?  What should matter is right now - right here - the present.  Why are so many people so selfish that they ignore the aging to protect their own feelings?  You think that I don't cry each time I leave my Dad?  Of course I do.  It's hard - but how lonely it must be for the patient.

My Dad's cousin has Alzheimer's and is in a nursing home.  His wife calls and visits regularly as does a visiting nurse who spends time with him.  Dad's cousin knows who they are and is often glad to see them. These people, and others, make a point of being involved in his life regardless of the disease.  There is still a person in there - a person who feels, who has emotions, and has emotional needs.

If there is someone you have been purposely ignoring (although quietly justifying it to yourself) I dare you to step up and contact them.  Send a card, a note, a phone call, a visit with a gift of a snack is always a nice start.  Don't plan to stay long as they typically tire easily but take a step for them.  Chances are its a family member or loved one who has taken many steps and sacrificed much for you over the years.  It is time to repay them.

You've heard me say this before but it bears repeating:  on my Mom's deathbed, when she was still able to speak; upon seeing the cards, flowers, and presence of so many people around here and the outpouring of love said to me, "why is it that I am so loved this much?"  My response was simple:  because its your turn now to receive that which you spent your whole life giving.

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