John's world

         Before taking my trip for a month, I arranged in great detail, caregivers around the clock for John, lists of information to help everyone moving though John's life to understand his routine and needs.  In the end, I wonder if any of that mattered.

          I came home to find out that John was very agitated, restless and some times combative.  He did not recognize his home, he was angry at his grandchildren and he lost his sense of comfort and calmness -- me.

          John knew me instantly, was happy to see me.  The following week the meds has been cut to a fourth of what was needed while I was gone.  He is quiet and calm.  The results show how attached John's sense of space and security is connected to me.  It places, also,  a bigger responsibility and restriction on my life.  I have from the beginning of this adventure had the frame of mind, that I take one day at a time and that continues.

           For those that read this for insight of changing abilities of John and people with Alzheimer in general, a few comments here.  John is more frail and falls now a couple times a week. Fortunately, nothing serious to date. His vocabulary has decreased to the point that more often than not it is a search on my part to understand what he is trying to converse about.  Most times, I can be reassuring and we move on to other things.  The repeating of the same question probably is the hardest and more boring part of dealing with stage of Alzheimer.   I realize finding a place for John to sit near me and watch me is the best solution, particularly  while in the kitchen or garden.  I feel my presence is his cord to the world and life.

           There is no one in my position that doesn't wonder how long can this go on.  I did learn that Alzheimer is present in the brain for years before the symptoms become routine.  From that point to the end of life is commonly thought to be seven or eight years.  The difference of all this is the care that given to the individual.  We moved to Olympia in '03 and John was having blank moments at that time.  Next year, it will be ten years.  I have learned a lot about patience and depth of loving another person, this must have been my life assignment. 

           As for today's plan.  It is going to be sunny so I will go to the garden and clean my herb bed, it is Saturday so I will take my radio and listen to my garden guru from 10 to 12.  Two feet from me on a chair will be John asking if he can help.  I will tell him, "No, just keep me company."   John will repeat the question though out the morning and I will continue to give the same answer.

The helmet

You may not be a sufferer of Alzhemier (it is in the brain for years before  your family notices)  but on the other hand you may have it.  It is like biking, you probably will not fall and injury yourself--wear the helmet anyway.   Reading the following

http://www.ergo-log.com/ashwagandhaalzheimers.html

Where is She?

           While preparing dinner, standing at the counter half watch a late afternoon show and watching John circle around the living room I got two surprises.   John picked up a picture of himself that my sister Ellen took last year.  He held it in his hand a few seconds and say, "This is a good picture of Fred, don' t you think?"   This is about the third time that John has looked at this picture and mistaken the picture of himself for that of his brother.  The other times, I have corrected John but last night, I thought what's the point.  Fred is closest in age to John being two years old but physically each takes after a different side of the family.  Fred is shorter, bald, built very square whereas John is taller, longer legs and still have hair. 

            Another afternoon surprise was John asked me where Loretta went.  I answered I am right here.  "No, where did she go?"  Pointing to myself, "I am right here!" then finally with a little embarrassment, "oh, yes, yes".   This has happened a couple times in the car after I pick John up at the Senior Center but I think the anxiety of the waiting for me and going home plays into those occasions.  Yesterday in the living room tells me that John is disconnecting more to the world he livings in little by little.

             On Friday and Saturday John got acupuncture treatments.  Both days he it had a calming affect on him.  John spent the rest of the day more relaxed, less anxious and more aware of what our evening was about.  Sadly, the treatment are very short term in their affects. 

Little jobs

             John has always been happy doing little jobs for me.  Like taking the clothes off the clothes line, unloading the dishwasher, moving the garage bins to the street on Monday evening.

               Most of the time, John can get the dishes out of the machine to the counter but he has no idea where in the cabinet they go, anymore.  I have to open the doors and point to the stack of plates or show him where the glasses go.  The draw for the sliverware is next to the dishwasher but he can't remember the location.   I noticed last week, after doing the top rake of dishes he walked away, his attention span  doesn't hold long enough to completely unload the whole dishwasher.
 
               The garage bins, I now take to the street.  The length of conversation to help him understand the project of wheeling the bin to the street is simply too tiering for me to do, anymore.  But there was a new twist to it last week, it made me do a double take.  In our driveway were the bins of our neighbor's.  Which neighbor, I am not sure,  but John decided to wheel more than our share of them back after seeing the truck go though.  A couple months ago he moved ours down along the side that neighbor's driveway.  I would call that dating garbage cans, I guess!

 the clothesline inside

Gardening about 10 days ago I wanted to finish up a detail I was working on and John was circling and circling restless and wanting to go inside.  Finally, I asked him to take the clothes off the clothes line to distract him for a few minutes.   I lifted my head occasionally and saw he just could not get the idea correct of what to do.  He would take the blue jeans off and fold in half and put back on the line have on each side with new clothes pins.  In the end, it occupied him for five minutes and he was back asking, "when are we going home?"


          I walked over and the two of us took the clothes off the line and went indoors so I could start supper.  The next day, while walking thought the living room I found John's handy work on the back of a chair.

99% Issue

       Last week on the Alzheimer Room post there was a chart listing the cost of caring for people with this disease.  I will skip the long details but two numbers I remember well.  The average stay in a nursing home for a Alzheimer person is 25.4 months and the average cost is $84,000 a year.  Think about the people in your family, your circle of friends and your neighborhood.  How many of them could put their love one into this type of care and not become one of those people living in a car?

        Our society has divided people into the throw aways people and the people that are valued.  Our society is broken.  The 99% have none of the answers but they are asking the right questions for the first time, in a long time.  I want to hear more of their questions.  This will take time, there are many questions.  Let's all listen to the questions. 

Turning 2 at 78

          There is the side of John that is quick to swear and use the 'F' word or drop a string of words that only sailors would use during a gale losing the race by a length of a boat, in a tight race, at the end of the season.  There is also the side of John that to this day will stand and wait for a woman to walk first in a door or take his cap off once he walks inside a building.  The gentleman that will greet a woman and say, "Good Morning, dear, how are you doing today?" or "You look great today".   The man that will say good bye to his gang at the Senior Center like they have been his best friends for a life time.   I have notice that they all want to be the first to tell John that I have arrived to pick him up.  John's favorite saying is, "those are nice people" and he looks at the world pretty much with that attitude.


             That same person is becoming a two year old in so many compartment of his life.  He is a two year old that needs reminding about using the bathroom.  He need to be reminded that he has to sit longer and try harder.  He is embarrassed about the mess he creates in a bathroom, to his clothes,  the shower and the lack of knowing what to do about it.  There is a John that is sad about how life is going and say, "SHHHH, SHHH".  There is a John that does not know how to make it better.  A man that forgets which bathroom is his, how long it takes to get there and how important it is to be able to explain what his needs are.

               I always feel relieved after tucking John in bed and knowing that he is all clean and safe.  I fear that timing could go wrong and all of this could happen while he is at the Senior Center and the embarrassment to John would be overwhelming.

Changing habits

          One of the things,  John has been consistent about during his life has been his habit of eating slowly.  Food become an important focus because of his early childhood allergies and how his medicines had changed his taste buds.  The list of favorite foods and little habits liking ketup on unfamiliar items was always tolerated.

         Now, John eats so fast, I am afraid he is going to choke.  He drinks a glass of water or wine with one lift of the glass!   Recently, it happened that he finished his breakfast and then took my breakfast and completed that one also along with my vitamin pills.  Needless to say, when I walked back into the dining room I paused for a moment to question, "Did I eat my breakfast and forget?"

John at a picnic in HI. with Hannah and Mira

           After meals now he want to put his dishes in his bathroom. I often find an assortment of drinking glasses in his bathroom, along with a dish or two.   A few days ago I notice the phone was misplaced until I was putting away some clean socks for John and found the phone in his sock drawer, along with a flashlight that I use to check on the chickens at night.

          This morning was the strangest one or maybe it is just new to me.  My garden basket with a couple tomatoes and some picked raspberries were on the bathroom counter.

           His corner of the world is becoming more important and he wants it all there, I guess.