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.

       

White mustache, green grass and red wine

The sound was off, I couldn't identify what was wrong but it was strange noise.

I walked back into the bathroom found that John had taken the electric toothbrush fully loaded and used it as the electric shaver.  His upper lip to the nose and the sides of his mouth was covered like he had grown a large white mustache.  His skill with the electric shaver is not highly developed and he knows it, so I guess, he had a new go at it with a toothbrush.

"My, oh my, John, we have to start over!".   I got a clean face cloth soaped it up and handed it to him, standing there.  I quickly could see that he had not comprehended the project at hand.  I took over and washed his face like I did with my children when they were toddlers.  Then I stood there and reloaded his tooth brush and slowly went though the steps on how to place the bush and the motions needed to use the bush on his teeth.  John smelled all clean and fresh after this routine.   He placed his glasses back on, smiled like a child ready for the day.

The conference that I attended a week ago had a discussion about some of the skills and solutions that are helpful in dealing with an Alzheimer (AD) person.   Imagine looking at the world and it is unfamiliar and strange. You have lost control of your surroundings and abilities.  Your aware enough to know that you need to find the something that makes you feel comfortable but outside your spouse and your home, few people or places provide it. Starting from there, it helps the caregiver understand the needs of one that they care for.

While weeding Saturday, John sitting nearby said to me,  "In a little while, can we go home?" 

"Well, John, we are outdoors but turn around, there is our house.  We are home, that is where we live." 

I gathered by his comment that he would rather be in the house next to me that outside not knowing what to do but watching me. Not knowing what to do is a major problem for AD.  It is also a major challenge for the caregiver because the jobs they can do so often means total supervision and is very time consuming for the caregiver.

Another hint I heard at the conference is that AD individuals like car rides.  Everyone know what to do while riding in the car- look out the window.  It is suggested that is someone wants to go home.  Get in the car, go for a ride, get an ice cream cone and then go back HOME.  I have since done this twice and this outing is very comforting for John.

Surprisingly, giving up driving was not a life changing event for John.  He accepted it quickly and easily.  What has been more important is not having the strength to start the lawn mower.  This past weekend he tried a few times, move the mower in and out of the garage, then came and talk to me about it while I was weeding, then forgot the facts and tried again. Finally, I went and put the garage door down and got him engaged in a project in the backyard.  John has lost strength over the years so that has not been surprising to me.

The thing, that jarred me for a second, was John lost the knowledge of how a wine opener works.  For those who have known John a life time, clean shaved, grass always cut and five o'clock opening of the wine bottle were signature activities.  He has lost all three abilities but he still like five o'clock in the afternoon and recognizes grass uncut and when his face is unshaven.

What Everyone Wants to Know

I went to school yesterday, well that is what I told John and it was basically true.  Another way of putting it, I attended the 16th Annual Alzheimer's Conference on Alzheimer's Disease and Dementia.  This year's title was ''What Everyone Wants to Know".  It was very enlightening for me as a caregiver but equally as an adult concern about my own health.

Dementia is a word being used a lot more in our society because people do not want to use the word Alzheimer.  In fact, the words are related but mean different things.  Dementia is a progressive loss of cognitive function over time affecting memory and other abilities that affect daily life.  The risk factor is aging. Dementia can be caused by five or six different brain problems such as stroke or brain diseases.   Alzheimers, AD, is only one of these causes for the condition of dementia but is the leading one.

AD is a disease that a person has for 30 years before it is noticed, it is very slow with plaques (outside) tangles (inside ) building up on the brain cells.  Imagine at 40, middle age, some how the plaque of the brain doesn't get recycled and starts to stay put in the brain.  This is a period of time that is know as the grey zone.  Mild Cognitive Impairment is the term, that is also used, as this starts to develop.  Research is being done on why the normal brain and spinal column that gets rid of this plaque suddenly stops functioning.  Diet is being researched and exercise is being researched at the UW location as the possible answer.

They have clear models of what normal aging memory and non- normal aging memory does.  There is also a clear picture of what happens in the period of time called Grey Zone or MCI .  Researcher, Dr. Laura Baker, likes to illustrate our memory like a deck of cards.  Everyone gets 52 cards and then she told of what puts our brain at risk at losing one of this cards. The list is long and each one takes away a card from our personal deck, hypertension, diabetes, sleep apnea, high cholesterol, COPD, head injury, liver and kidney disease, malnutrition, alcohol abuse, vascular disease and tobacco.   Add to that negative effects on the memory are different medicines for pain, anxiety, sleep and anti-cholinergics.  I found it shocking to hear but 65% or more of people with type 2 diabetes are at risk of developing AD.  All Parkinson's and MS disease sufferers will get AD is they live long enough. 

The simple fact could be that the American diet causes AD in about 80% of the cases.   High saturated fats, the level of glucose and the lack of exercise is being looked at and studied.  At UW, a study showed in a four week period on nutrition memory was impacted.   With no diet change brain volume and improve cognitive is shown with exercise in another study.  It is shocking to realize that our bodies need to be honored with better care and it is that simple. 

Research shows that AD is not the necessary or normal consequence of aging.  At the same time, 50% of the people that have MIC-mild cognitive impairment-will go on to AD, the rest become stable. 

Ways to become stable include keep blood pressure below 140/80.  Boarder line pressure numbers have to be worked on (studies show it! ).  Saturated fats and cholesterol is serious business and the lower number is very important.  Third factor is stress. It is the nibbling by the ducks not the major events,  that is the problem.  One has to control the ducks in life, a couple hours of rest from the ducks will make a difference.  Fourth item is mood, sadness, down mood, quality of life is a item to be address for a healthy brain.   The last key factor is diet and exercise.  Honor the body  by eating thoughtfully.  Brown bread, brown rice, brown pasta--complex carbohydrates, not the simple carbohydrates that spike the glucose.  Organic if possible--pesticides are not good for nature or our bodies to accumulate.  Exercise, Dr. Baker said is moving the body, walking around the block with a friend.  This woman talked about life style, joyful thoughtful ways of living life with intention. 

I came away surprised at the risk, we all have of this disease, but at the same time the control we have over the results for ourselves.

Instant Chicken Feed

         In the morning, I set out the cereal and milk and sometimes a banana on the counter for John. Finding these items for John are now beyond his ability.  I usually take a cup of coffee and go upstairs to my office and spend an half hour on the computer. 

          John calls out to make sure I am upstairs and then he fixes his own breakfast and it allows me some quiet time.

          I remember in five grade or was it seven grade science we learn that all matter comes in three states, solid,  liquid or vapor.  John turned the cereal, a very tall, clear, plastic round cannister into a liquid.  He poured milk into the cereal and half of the cannister turned into instant food for my chickens.  I notice he already ate one bowl of cereal at the table.

         This incident followed last night when John tried to put his pajama top on as a bottom.  Imagine putting each leg into the sleeves of the top and looking down, thank heavens I walked into the room at that moment.  I laughed out loud, the scene was so funny--even John saw the humor.

         The process of simple acts of daily life are becoming lost for John to preform, one by one. 

Proud of the Shave

In the evening, the question is when are we going to bed?  There is more restlessness now waiting for the next thing to happen.  Last night at 11:30 John left his light on and I asked him to please shut off the light.  Again, at 4:15 I saw the light on but he was in the bathroom and he agreed that he would shut the light off in a short time.  Twenty minutes later, I found John totally dressed for the day and he was proud of the fact he did a good job of shaving. 

Gently I showed John that is was dark outside and that we don't get up until seven o'clock.  I stood and helped him get this pajamas on again and waited until he was in bed before leaving the room.

For the first time this morning, he was trying to asking about his class.  I explained that he goes only on Tuesday and Thursday but I think soon I will increase the number of days.  It currently works out best if he is only there from nine until one, after lunch he gets very restless to go home, so I pick him up an hour early.

The biggest change I have been noticing is that he is losing the words to ask the questions or express himself about things.  The most fortunate thing in John's life is that fact that we have Ken, Shuchi and Mira and Ahman.  They are all equally kind and understanding about his needs.  The grandchildren are beyond what could be expected from young children but they have the wisdom of old souls in handling his lectures or his concerns.

Soon we will be able to spend more time outdoors in our fenced in backyard and that will be a safe and easy place for John to occupy the day.

Bedtime adventures

   
The evening bed routine with John has grown from a simple procedure to a time of  new surprises.  He often says I am going to get ready for bed now and goes into his room and shuts the door.  After a period of 15 minutes or so he appears proudly in the door way and announces he ready for bed wearing a different set of street clothes.  He has replaced blue jeans with corduroys , a shirt with a sweater and possibly even changed shoes.

"No, No, John, you have to put on your pajamas," I say.

"Oh, yea, I forgot.  Where are my pajamas?  I can't find them."

"No problem I will find them."   After laying them on the bed, I leave the room and go back to my laptop computer or t.v. show.

Fifteen minutes later, to my surprise, John appears again without the pajamas.  This time a different combo of street clothes.  I remind him that his p.j. are on the bed and he has to wear them because they are the most comfortable to sleep in at night.  "Oh, yes, I forgot!"  John will sometimes get into a discussion about which shoes are the best to wear at this point and how he changed them.

Generally, this routine takes 30 minutes in the evening.   The most shocking was the evening that his p.j.s were under this corduroys!  We both laughed at that one.

I have been warned by experienced people and my Doctor that the difficult of living with an Alzheimer person is when they turn night into day.  

John has occasionally leave his light on after getting up to use the bathroom.  I am generally light sleeper, I have gently and easily tell him to turn off the light.  There were a couple nights, though, I found him totally dressed to start the day.  That involved a conversation about darkness and sleep time and the light must go off.

Those times, I find frightening because I realize if it continues, it is a major sign of deterioration of my ability to care for him 24/7.

John and Daisy

I named this post because yesterday my husband went to walk Daisy our dog but forgot to take her.  I heard Daisy down stairs and also heard the side door close so I looked out the window and my husband was walking down the driveway alone.  I open the window and asked him, "Didn't you forget Daisy?".   "Oh, yes, I'll go get her."

A couple members of the family and friends has encouraged me to write about my daily life and notes the events of the day. I have resisted before because I was afraid this type of blog would become a whinny session on the difficulties of living with Alzheimer person.  I will try my best to edit this it in a way that tells the story of daily life that I, personally, have a record and the reader has a understanding of changing events.

Walking Daisy has been part of John's life for the last fourteen years.  He is famous about meeting neighborhood people on these walks in locations in Wisconsin, Florida, California and now our home in the state of Washington.  During most of these years John will fill me in on the neighborhood news and all the comings and goings of people.  Of course, I strongly thought that John had the reputation of the more friendly person of this marriage.

John always greeted children with, "Daisy is a licker not a biter, you don't have to be afraid of her."  He is also famous for the phase that in the dead of winter, those plastic bags of dog waste were called hand warmers.  Daisy is a 40 pound English pointer that looks like a miniature Dalmatian. Over the years, Daisy learned that patience is a virtue while John stood visiting with someone.

Now I must tell John where the leach is hanging each time, where to go - the stop sign and back. It is the length of one city lot from the end of the driveway.  John can not give me a report on what Daisy did do or not do on these walks because he can not remember.  But on the other hand, he does walk her more often because he forgot when the last time they ventured out.  In the meantime, Daisy is getting all the problems of old dogs and sometime walks are not enough or badly timed and she has mis-happens in the house.

It is good we all have each other as I tell John.