Floating on an iceberg

I dreamt last night I was floating on an iceberg.  I was on guard all the time for changes.   Things/life are the same for days then a wind or a wave comes along and a chuck of my grounding/surface is lost. It is gone into the sea, there is less space for me.   I then study the surrounding for other dangers that maybe unforeseen.  Most often, the surface slips away quietly, only occasionally, is it dramatic and loud.

 That I immediately realized is my current life with John.

A incident of extra work one month, then one week becomes a daily routine.  It grows maybe twice a day or three times a day over months.   It went from picking out clothes for John to wear to totally dressing him now.  Much like one would do to a life size doll.  I shave him, wash his face and comb his hair.   Showers have gone from every couple days to a couple times a day because his total lack of control over his colon now.   Each one of these changes puts a threat on his current arrangement of day care outings to the senior center.  Their rules have limits on individual care.  That added worry plus the physical demands, I already have adjusted to dealing with at home is part of my 36 hours.  

The handbook has not been written that explains this life.  Oh, there are the platitudes about caregivers and the 36 hours day.  I never read the one that says I should check his bed five times a night to make sure he is not sitting on the edge asleep and would fall and hit his head.  Then there are three times I see that he is sitting on the edge of the bed.  Up I go and softly talk him into laying down so I can cover him up.  The effect of this not one night but the week, the month of endless disrupted sleep are the pieces of the iceberg that fall into the sea.  I feel the lose of ground around me.

Mentally, the worry for most women in this country are the finances beside the physical demands.  There is no short cut for that worry.  This society has no place or care for the old among it's population.  It is easy to say, get help in the house or send your love one to a care facility.  The problem is the time line.  Is this arrangement going to be for a month or a year or five years.  At what cost? Tell me the time line and I can work out what I can afford and deal with it. 

I know I have to make changes in this house.  I have to face the fact that I am dealing with stress, lack of sleep and in need of more hours free of the responsibility of caring for John.  More professional help brings along wisdom to the site. 

While this iceberg has some sun today, so it is time for a walk around and a fresh view of the distance.

Sock, Shoes and Slippers

               I lead John to his bedroom and found this glasses, slippers and his Irish sweater to all be put on before breakfast.  I handed his glasses and he said, "Those mine?" 

               "Yeap, they are yours."

                His eyes got wider, "Well, I will be dipped in Chocolate."  I pointed to his slippers and his feet, then to the rocker with his sweater on it.  I raced back to the stove to check on the oatmeal cooking.  

                 Moments later John appeared wearing one slipper and no sweater.  I walked him back to the room and helped him put on his sweater and stood while he put on the other slipper.  I notice later his buttoning of the sweater gave him an uneven look to the front, something that has no surprise anymore considering life's big issues.

                  John like to hang on to the four poster bed more than he used to, is much slower getting up or sitting down in a chair.  Now getting into the car is easier with someone pointing out which car door to choice.  The latest surprise is he sometime looks at a plate of food and just continues to either walk by it as at breakfast time or continue to play with his cards in the evening.  I have to encourage eating.  I have know that with Alzheimer there develops no sense of hunger or being fuller but this is new for John to ignore food in front of him.

                Daily the tiniest things happen like putting two socks on one foot, or forgetting how to place the tooth brush on the teeth and realizing the front of the playing card from back. 

                John basic personality is sweet and that remains intact.  He has always like to flirt with women and that reminds true even today with the caregivers. I get these looks of concern occasionally of either of the women and I  assure them that I am not jealous at all of John sharing his attention to another woman. 

                 

                   

Life lessons to learn

My daughter often remarked to me during her August visit,  you must write that down.  The changes, the incidents and the surprising, the shocking moment  are daily but often they flow together and I lose the interest or lack the time to write.

Last night while sitting at the care givers support group meeting I listen to each in the room use the session to update all about their own lives and the person they were caring for in the household or visiting now in the nursing home.  There is a very common theme during the whole evening but once in a while something will be red hot words I hear.  Last night it was, "often they have no conscious knowledge or awareness of their bowels".  So that is it!

I have come to understand that John as no hungry or sense of fullness to his eating.  If it is placed in front of him, he will eat it.  Funny but the woman that took care of John while I was at this meeting relayed the story of John taking his fork to the serving bowl of the salad in the center of the table and began to eat away.  She of course, served him a portion and explained that it was for all three of them eating at her home last night. 

In the same vain, John is always shocked and mortified that his depends are soiled or full.  He can't understand it.  He even angry in the sense that it happened to him.  Yet, he has no understanding how to prevent it from happening in the future.  Or for that matter, making the situation end more quickly. 

It was reenforced this morning at his total amazement at similar incident. 

The longer this care giving goes on in my life, I am convinced his disease is in my life to teach me a new level of patience.   There will come a time that either I hit the wall of the end or John passes over but until that time, it is a lesson in patience.

Yesterday I went to get an extra key made for the house to give to a caregiver.  John came with me to Lowe’s.   I am going to try to show the difficulty of doing the simplest task accompanied by John.

John is very slow while walking so he stops along the main aisle of the store and chats.  I was 20 feet in front of him and had to turn around and gather him closer as the confused faces told me that they did not understand his casual conversation.  I also realized, now, I am third in line at the counter.  Instantly, I knew I should have used a cart for John to lean on as this was going to be a few minutes standing here in line.

Now a minute passed and John said he needs to go to the bathroom.  I have heard that at every store within the first five minutes of shopping in the last year.  I now say, "we will be home soon".  It quiets that thought and John goes on to other phases like 'how long will this take' or 'what are we doing here'  or 'when can we go'. 

Finally the key is made and I head toward the checkout but not quickly or John will be talking to a mother of some children he spotted.  Quickly, I pay in cash and that shortens the conversation at the checkout.

I hold his hand walking toward the car or I would leave him in possible traffic. He approaches the car and open the back door instead of the front passage side.  Once settled in to the front, we work on the seat belt  and opening the window.  Great, we can go home.

Three blocks away, John decides to open his car door!  "What are you doing?" He closes it.  I take my eye off the road to check out this situation, I am entering a roundabout, I brake a truck that I should have seen!   I take a couple deep breathes and tell myself to remember not to do anything again with John along.

Shadowing and the 36 hour day

  I had a visit with David, a Geriatric Care Manager, he had some reaffirming ideas yesterday and also some insight for the path in the future.

                  John has lost the ability to dress himself, often says we should go home now (lose the sense of place) speak in phases and incorrect words, has control issues.  The next major lose will be mobility.  We discussed that in terms of falling, ER, moving John to a facility. On the other hand John has no other health issues such as high blood pressure or heart disease.   Still possesses a pleasant personality (last thing to go).  My needs centre around the "36 hour day" and the "shadowing".

                  Financially, I will completely cover all cost for John's care.  There is no moving funds, trusts ects in this state.  I must be down my last $50,000 for any state help. Cost begin at $3,500 and go to over $7,000 a month in typical care places here.  Nursing home are great in offering activities during the day, group home are strong in three people caring for six people but few or no activities.  Cost are about the same.  Hourly rate for help in the house is $20.

                  Dave's suggests I build on the success of the STARS program and have someone pick John up and continue caring for him - here or other activities.  More help on the off days.   I will work on a master plan of more caregivers giving me help and keep John at home for the time being.  Dave suggestions one or two max people for this as John will know them and feel more comfortable.  Dave, also, said I am very resilient from what he can gather, resourceful and have family support.  But also, says, I will hit a wall.   "Realize that, it is coming and at that time, things change."

                 My son, Ken had picked up John yesterday and was here for part of the discussion along with John and me.  Later, Ken said every 8 to 10 months you meet an extraordinary person and Dave is one of those people.   I do live with the principle of each day is a start over, one day at a time.  The plan is in place until the plan doesn't work.

Life on the 36 Hour Plan

           Imagine a plan that is much like flying around the world, you are never sure of what time zone you are in at the moment.  That is living with an Alzheimer's person.  You can touch and feel, the clock tells the time but yet you are dealing with an unreal environment.  Conversations are meaningless a second later, items disappear within a minute, and words don't represent objects.  Some active like eating is on a fast track but other events, like a lazy afternoon in the sun, is on a month-long-time-frame.

            Time each day is spent by me finding objects that have been moved out of their location and vanished.  After cutting the grass the other day, I asked John to follow me to the garage as I pushed the mower.  He carried the muncher black attachment bag for the mower.  I paused at the garage and announced that I had to go in the side door of the house and open up the garage door.  After the garage big door was opened,  I walked toward the mower and John was not there anymore.  I walked into the back yard, then I walked into the house.  John was in the kitchen but the attachment was no where in sight.  I looked around the house, the garage, his bathroom, the laundry room, the den, the garage again.  This large black bag had managed to disappear.  John suggested a glass of water on the counter as the possible item that was missing.  The clock said 10:30, this was the fourth thing of the morning that had been offered up to missing file.

              When I hear people tell me that I am fortunate that John attends the Senior Center and that somehow that is the magic for my day or life, I have to smile.  Those six hours four times a week leaves me with the other 30 hours each tour of the sun to deal with.  Yes, it gives me time on the ground but the most of my remaining time is in the outer space zone.  I find my personal needs of quiet time, socializing, creative time, managing daily life needs like bill paying is squelched in those six hours periods. Periods can flow peacefully by for days but there are moments that pile up in the corner of the brain that are pure primal scream.  Only an experience caregiver can sympathy with one another about that corner of the brain.

              John often in the evening is occupied by sorting cards from two decks of cards.  The process used is original to him.  The other pass time that John enjoys is looking at photographs.  I have shoe boxes of photos. About 50 pics are at his chair in the living room and there a other piles in a couple locations in the house.  Those pictures remind me daily what a great life we have shared together over our marriage.  We have loving family, healthy children and grandchildren, memories of great friends, gatherings and of exploring the world together.  It has been a full, full life. John's shuffling of photographs bring me back to view how lucky I am.  It balances the moment of utter insanity.

Cars and Driveways

         It is sometimes hard to explain my life with John because it changes in the most minor details but yet is changes each day and the result is I must be more on guard.  Sometimes it is funny, sometimes it is boring, endlessly boring and some times it is frightening but mostly it is a constant drip of the life a caregiver to Alzheimer person.

         This morning John was in the garage as we got ready to go to the Senior Center.  John walked toward the trunk of the car and I suggested that he should go to the sit in the front seat.  He walked to the side of the car and he had no idea of how to get into the car.  He stood there with a complete blank look how to process to enter the car or how the car door worked.

           Now the seat belt is a daily story with many chapters, most days the seat belt is a new experience but let me tell the funniest.  One day John took the his belt to the end of it's length and buckled into driver's side.  It was  a stretch but he clicked it!

          Ken, Mira and Ahman stopped over this afternoon.  It was delightful sunny day and I asked Ken to start my lawn mower because I am not strong enough to do it.  We have had the most rainy month ever for March so you can imagine everything about the yard is beyond over due.  Ken graciously mowed the back yard, John need to go in the house and use the bathroom, the kids were having a snack in the house.  As Ken finished cutting lawn we were having a conversation standing near my patio.  From the neighbor's back yard a voice is calling us.  "Hey, Hi!   I am over here!"   "Hi! Look I am over here!"  John had gone out the front door of the house. Gone to the neighbor's driveway, enter though their gate to the back yard and wandered into their backyard.

         The roaming is relatively new but it is growing.  The neighbors have brought John home a couple times in the last month and I have waved John home the distance four lots, walking down the street. Unless you are a caregiver yourself you have no idea how fast this happens.   Fortunately there are no bitting dogs on this block and the neighbors all know about John.