Chapter Thirteen-Alzheimers Story Tuesday, Nov 17 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 3:45 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Thirteen

How does one treat an adult that is regressing?  There are no good answers.  We wanted to allow Belle to do what she could as long as she could do it.  When is it appropriate to interfere and not allow an adult do something they think they can do?  And how much should we give up to let this occur?  This balancing act caused us much discomfort and in some cases, disagreement.  The systems we developed to allow her to continue to live on her own were negatively impacting our daily lives. 

When a house behind Belle’s became available for sale we seriously discussed selling our home and buying it.  The home would have placed us in a financial tight space, and was smaller than the home we occupied, but was so close to Belle that living there might relieve some of the other pressures we were experiencing. After much deliberation, we decided the home did not meet our needs.  But in the process of reviewing the situation and how we might allow Belle to keep living in her home with our assistance, we began understand that it was a matter of time before it was not realistic to believe she could stay on her own as her abilities declined.  We began to explore and consider other possibilities.

In late 1997, we moved from our home of 14 years.  Our new home was about the same distance from Belle, but larger than our previous home.  Deacon was a teenager in high school and Cooper was moving out on his own.  We bought the home with the idea that at some time in the future that, after Deacon left for college, Belle might be living with us.  The rooms were large enough to accommodate Belle upstairs, with a bedroom and possible sitting room for company or visitors.

Although Belle would not be making this move with us right now, our move had unintended impact for her and provided a surprise for us.  Soon after we moved, Scott decided we needed a storage building in our backyard and solicited his brother Chuck to help him build it.  They started the project on a weekday and on a morning break called Belle.  They invited her to keep them company while they worked.  Belle, being a builder’s wife, was used to being the gofer projects, and I suspect, that when she agreed to drive over, she was looking forward to being useful to them in this capacity.  She told them she’d be right over.

The drive, even with traffic, should not have taken more than 15 minutes.  Even allowing time for her to get dressed, she should have arrived within a short time frame.  When an hour passed and Belle had not arrived, Scott and Chuck began to be concerned.  When the time elapsed into an hour and a half, Scott called her house.  There was no answer.   Over the next half hour, he called several times, again with no answer.   He was in the process of getting ready to drive around and track her potential route between her home and ours to find her when she finally pulled up to the curb in front our house.

Although physically safe, she was emotionally upset. Belle had been driving to our previous home for many years without assistance.   This time, she had started off driving to our new home and had gotten lost. She confused one major road with another and had driven well outside the city.  When she finally realized that the area she had driven to, which was miles south of her destination, did not look familiar, she started trying to back track her moves.  While unable to backtrack partially to the wrong turn that caused the problem, she was able to backtrack completely all the way back to her home.  She then set out again, shaken but determined.  This attempt was successful and she arrived at our house, late but safe. 

Belle had driven on her own to our home several times during the preceding months.  We had not given this activity any further thought.  However, after this incident, inspection of her glove box revealed written instructional directions to our home and several other destinations common for her.  We had not been aware Belle was using written instructions to drive to any type of common destination or at all for that matter.   This situation became frightening and reassuring.  Belle had been thorough enough to know she needed help in the form of instructions and had proactively created her own help aid.  Additionally, although she had been unable to backtrack and restart from a point other than her original starting point, she had been able to regroup, restart and arrive at her desired destination safely.

Although Scott had driven with her on more than one occasion observing her driving skills, his actions turned out to be insufficient to determine her abilities.  We speculated that when they were together, Scott must be assisting her without really realizing it.  If she hesitated, he filled in the information.   But now it seemed obvious she was relaying on written instructions for simple destinations.  Scott and I discussed this situation at length.  Should we insist she not drive?  Could we insist she not drive?  We did not want to deprive her of her ability to function on her own.  Taking away her right to drive might meet with resistance from her and place more of a burden on us.  She was driving herself to church and the grocery store often using her written instructions.  If we eliminated her driving, would we have to then take on the responsibility?  We debated this topic for some time and decided to let things ride a little longer.  In an ironic twist, Scott’s sister and husband moved into our previous home and Belle could continue to drive to visit her without written instructions.

Not too long after this incident, Scott injured his back incorrectly lifting some potting soil and for a month he underwent treatments to try to correct the problem.  This development meant I filled in for him more with Belle. Belle was very upset by his absence and his discomfort. She repeatedly asked how he was and if he was in pain.  After month of worsening symptoms, surgery became necessary.  Everything with the surgery went fine, but Belle remained impacted and unable to recall that he was okay once the surgery was completed, fretting and wringing her hands.  Scott came home from the hospital on a Saturday and could get around some on his own that same day.  Although I planned to stay home with him a day or two to assist, he was doing well enough that we decided I would go to work and just take a long lunch break to check on him.  I was in the middle of a project at work that others were depending on to complete their portions and although I had asked for and received the days off to stay with him, it would be best if I could go on in.  The surgery had been sudden and the days off would impact and delay the project deadline.  Then Scott suggested that it might be a good idea to let Belle help.  He did not need assistance getting up or moving around, although he would be only doing that to go the bathroom.  She could fetch items he needed if he choose not to move. She would then see for herself that he was fine.  He hoped she would feel reassured he was okay and that she would also feel like she was contributing to his recovery.  In other words, that she would feel useful.   So we settled on a plan and Belle was, as we thought she would be, glad to be useful. 

Scott called me shortly after noon on that Monday.  He was exhausted and in pain.  Belle was waking him up repeatedly to ask if he needed anything.  She could not follow through with a simple task request, like fetching a glass of water. She’d head off to get it, only to come back without anything and ask if he needed anything.  The pitcher of water I had prepared and left next to the bed for him was missing as was his pain medication and it was time for his next dose.  He did not have the energy to try to find the missing medication and Belle did not know where it was. She insisted on sitting with him on the bed and would hold his hand while watching him closely.   He asked me to come home and I did. 

After some serious searching, I found the water pitcher, still full of water, in the freezer, but Scott’s pain medication was nowhere to be found.  I searched the house, her purse, the freezer and any nook and cranny I could think of (inside and out) but did not locate it.  I called the doctors office and explained why we needed another pain prescription of the strong narcotic.  In the back of my mind I was sure they wouldn’t believe me, as the drug could have been easily sold on the street.  But I did not want Scott to go without, so I explained the situation in detail.  The office nurse was very doubtful and I ended up speaking with the doctor, again explaining the situation in detail.  I was grateful we had, during a previous appointment with his doctor, mentioned that Scott provided assistance to his mother due to her illness.   I was glad when he agreed to a limited refill, and explained what symptoms to look for in case she had actually taken the mediation.  I was doubtful she had, but checked her for the symptoms he listed.   Belle did not display any of the symptoms the doctor had mentioned.  I spent the afternoon reassuring Belle that Scott was okay, and now that I was home, she was free to get home to her projects.   I followed her home, to ensure she arrived there safely.  The next day, I went to work, and came home for an extended lunch break as had been our original plan and Scott’s recovery progressed.  I guessed the bottle of pain medication was hidden somewhere in the house and it would eventually turn up.  However, we have never located Scott’s lost medication.

For several years before and after his surgery, Scott traveled to Corpus Christi regularly for a day trip to visit an aging relative.  Belle occasionally accompanied him on this trip. The next time this trip was scheduled after his recovery, Scott decided to use Belle’s car for the trip and have her drive some of the distance so he could observe her.  The first leg of the trip went fine with Belle driving at highway speeds on a dividend highway.  When the first major city was encountered a change in highways was required.   As sometimes happens in big city traffic the overall speed of the traffic should slow down, but instead speeds up.  Belle seemed nervous, but was moving along with traffic when the exit for the appropriate highway began to approach.  The traffic and exit seemed to make Belle nervous and the more agitated she became the faster she drove.  The car exited the highway at a higher than recommended speed, and Belle did not seem to understand how dangerous the situation had become.  They continued through the traffic merge onto the appropriate highway and Scott guided her through verbal instruction to the next possible place to pull safely over.  He drove the rest of the trip.  His overview of the situation was that the roads were unfamiliar and although he was guiding her turns, she did not recall the instructions.  The instead of slowing down if she was unsure, her speed increased, which was an inappropriate reaction. 

Although inappropriate behavior can happen with many types of circumstance, losing the ability to make a judgment call and therefore acting inappropriately is an ability that is lost when other functionality is lost.  Belle was losing the ability to determine the appropriate speed of the car, the ability to determine junk mail from real mail, the ability to recall simple events (like what she for lunch), and the ability to appropriately judge how to protect important belongings.  So, in addition to losing her memory, she was losing the ability to reason.

We did not tell Belle she couldn’t drive anymore, although I believe if we had she would have handed over the keys.  We just arranged to make sure she had no reason to drive.  We took over shopping or taking her shopping, and drove her to all her appointments.  A friend from Sunday school dropped by each Sunday and picked her up for church. The idea that the car was still available to her, even though Scott had spirited away her keys without her noticing, and that she could hop in it and go to the store or church anytime she wished lasted for years, long after the car was sold.  She remembered driving and when asked what she had done that day, she might tell the person posing the questions that she’d being shopping or had driven somewhere, when in fact she had not.  The past she remembered often seemed like that day.

 

Chapter Twelve-Alzheimers Story Tuesday, Nov 17 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 3:44 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Twelve

My relationship with Belle throughout the years had many highs and lows.  Most of our issues stemmed from her relationship with Scott and our competition for his attention.  He placed her high on a pedestal and she enjoyed being there.  I was jealous of her and she was jealous of me.  As the years passed, we settled into an accepting, but not overly warm relationship. 

As we were injected more and more into her life, Belle and I spent more time together one on one than we ever had before.  In addition to being Scott’s back up for her various needs, including health and hair appointments, I also worked the closest to Belle’s home, so any emergency contact became my responsibility. As an example, if Scott called her during the day and she did not answer, I would receive a call from him and it was my responsibility to then drive over to her house to check on her.  I was lucky to have the type of job that allowed me to disappear for short periods of time during the work day.  After most of Scott’s calls, I would find her in the backyard, visiting a neighbor or asleep.  Additionally, as she became prone to spells when she became more confused than normal or became very upset for known or unknown reasons, due to my physical closeness, I was the one that sat and talked with her while she calmed down. 

In early 1997, Belle and I were involved in more than one occasion that found us sitting in her living room talking about her current situation and her past life.  One event of this nature I recall specifically started out with Belle being upset over a phone discussion with Susan that Belle had misunderstood.  Belle had called Scott and Scott had called me to step in and go to speak with her immediately after work, as he had a previous obligation he could not cancel.  By the time I was able to arrive, she couldn’t recall what her discussion with Susan had been about, and I do not know if I ever found out what the topic had been.  But we did begin to discuss Belle’s life and her current situation and feelings.

Belle stated several times that she knew something was wrong with her.  She really thought she might be going crazy.  She could not remember many things she knew she should know and she couldn’t finish a project as she had once done.  She could tell by the look on the faces of people she spoke with when she got something wrong, although she was rarely aware of what it might be that was wrong, which only increased her fear and anxiety.  She did not want to be embarrassed or embarrass anyone.  She felt that people were lying to her, telling her they had told her things she was sure they had not.  She did not know she repeated herself or that she made up stories, although she did admit to ‘guessing’ sometimes when asked a question she could not answer.  She did not know we maintained daily phone contact with her and had no idea how often one or both of us were at her house.   She claimed people must be coming into her house at night or when she was gone during the day and moving her things around, because things around the house were seldom where she left them.   She was afraid of what was happening to her and seemed to know she was helpless to stop it.  She was glad we were around to help, but did not want to be a burden.  We spoke about her life, and touched on her relationship with Jim, her mother, and her children.  She loved Scott deeply and had strived to raise him to be the caring type of man that he had become.  She was jealous of me because I had a husband like Scott; he was the type of man she had always wanted and had not married.  She was also jealous of me because I had her Scott.  And, in this modern world, I had a job and my own life in addition to my ‘good’ husband.  From her point of view, I had it all, a certain type of self earned worth she felt she had never had the opportunity to achieve.  And now, after all the things she had not been able to accomplish with her life, or have in her life, she was going crazy.

We spoke for some time and I did my best to reassure her all was okay.  I confirmed we knew she was not functioning as well as in the past and that she needed additional assistance.  I confirmed we were doing all we could to provide her the assistance she needed.   Based on her comments, I began to more fully understand why our relationship had been so rocky.  Taking me into her confidence regarding the desires and regrets of her life and what she felt I had accomplished with mine allowed me to let some of the old hard feelings dissolve.

When Scott arrived Belle had calmed down, forgetting about the original reason for my visit and all was fine.  I explained to Scott that Belle and I had a long talk and that all was well.  To my surprise, Belle was surprised by my comments to Scott, as she did not recall our conversation.   She felt better and was in good spirits, even if the long detailed conversation was lost to her.

As time passed and more conversations occurred between us that started out with her upset and ended with her being calm without remembering that she had been upset, I came to believe that although Belle would not recall the specifics of any of our conversations, or sometimes the conversation at all, our words of support and reassurance settled somewhere in her being, worked to help her calm down and provided the emotional support she needed.  Belle had difficulty recalling events but she always knew how she felt, even if expressing how she felt was becoming more difficult.  I believe she knew that we were there to help and protect her, whatever was on the horizon, and this allowed her reveal her concerns, fears and feelings regarding the direction her life was heading.

 

Chapter Eleven-Alzheimers Story Tuesday, Nov 17 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 3:43 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Eleven

One thing I have always been surprised at is how many people, including medical professionals, do not understand Alzheimer’s or how it impacts the sufferer or their families. (Just for the record, speaking louder doesn’t help the patient understand.)  It seems the general impression is that Alzheimer’s causes a person to lose their memory and that’s it.  The memory loss is defined as forgetting the names of things or people. While memory loss of this nature is a huge part of the picture, in reality, this disease is much meaner.  Over the years in dealing with Belle and the impact of her illness, I have come to describe the loss of memory and loss of abilities in a plain terms illustration.  I actually told Belle my theory once while she was still in her early stages and she agreed that it was very close to accurate for how her abilities were impacted. 

Picture a block of Swiss cheese sitting on a surface.  Now picture dropping little droplets of liquid onto the cheese from above.  Sometimes the liquid runs one way or the other; sometimes it drops through to a lower level through the holes.  Sometimes it pools in an unexpected place.  In this illustration, the abilities and memories of the person are the liquid and the cheese is the brain.  Sometimes the liquid drops on the top of the cheese and runs completely through it which means the person functions fine completely through the task or remembers an event correctly.  Sometimes the liquid misses the first level of the cheese and hits a lower level which means they cannot recall an important item or they may know step one and three of a task, but step two has been forgotten. Sometimes the liquid drops straight through the cheese without touching anything which means they’ve lost ability they once maintained or they recall the event but recall it incorrectly.  And all these drops happen on the same day, meaning that their abilities are at different levels at the same time.  The following day, the experiment is performed again and the liquid runs differently.  So on that next day, the abilities are different as well.  On that day, step 2 of the task forgotten previously is back or step one has joined it or is forgotten. 

As the disease progresses,   functionality and memory fluctuate. An Alzheimer’s patient may be able to perform a task one day and not the next, but regain the ability the day after that, at least temporarily.  Before my experience with Belle, I believed that once ability was lost, it was gone.  In later stages, that turned out to be true, but throughout the beginning and middle stages of this disease’s progression, I’ve determined that not to be the case.    Unfortunately, this fluctuation of memory and ability adds to the level of denial that exists in the patient and the caregivers.  I can recall numerous times discussing something Belle had forgotten one day and recalled the next, and using that as a sign that things were not getting worse or that the changes we were witnessing were temporary.  She was just having a bad day.

Although an Alzheimer’s patient may become child like in their reasoning or abilities or behave like a child, they are not a child.  A child’s normal progress is upward, improving, learning.  Once a child knows how to do a task or recall a fact, they normally retain it and build on it.  When an Alzheimer’s patient declines, their abilities reduce, but the descent is not even or fluid.  It is bumpy and uneven.  Additionally, the patient for us was Scott’s mother, a person of authority in his life.  Balancing the reduced abilities of the Alzheimer’s patient with the status of that person in one’s life is often difficult and frustrating.  The Alzheimer’s patient seldom understands how reduced their abilities have become and the caregiver must balance the physical needs of the patient against the emotional needs of the patient.  I believe the majority of the discord that occurs between a patient and a caregiver stems from this issue.  The patient doesn’t believe they need help or have significantly reduced abilities and may be insulted and/or angry that someone, anyone, much less their child, thinks there is a problem. The caregiver, oftentimes a child of the patient, tries to balance the physical needs and the feelings of the patient without, hopefully, insulting the patient.  The parent becomes the child and child becomes the parent as the disease invades their lives. The authority levels alter, but the patient rarely understands this change.  We were actually very lucky with Belle, as she, even with her abilities waning, generally maintained a good humor and spirit and was rarely angry at us or belligerent, with a few exceptions.

 

Chapter Ten-Alzheimers Story Saturday, Nov 14 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 4:06 am

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Ten

All the things that were going wrong combined with all the issues that were coming up had pointed to this diagnosis, but hearing it confirmed was hard.  I felt hopeless, embarrassed and angry.  We were already expending so much energy to protect and help her.  The words that were now coming out of the doctors’ mouth meant it would be getting worse and we would, because of her disability, be forced deal with and provide an increasing amount of daily assistance for her.  I spent time on the internet reading and rereading Alzheimer’s information and family stories.  I researched support groups.  I worried.

Over the years of our marriage Scott’s relationship with his mother had been a source of discord between us.  I felt that he always placed her first, that her wants and needs, real or imagined, always came first regardless if this placement was needed or warranted.  Scott felt obligated.  He had a duty as her son; she was his Mother.  He wouldn’t be here but for her.  During times of discord over this topic when we were younger, I’d point out her other children did not feel this same obligation or react in this manner.  Why did it have to be him always riding to the rescue?

And now that we were older and supposedly past the issue of his relationship with his mother and its impact on us as a couple and family, her diagnosis placed us back into the same old space of discord over her. Scott felt obligated to anticipate her wants and needs, to take care of her regardless of the impact. I felt trapped in an escalating situation with no end in sight. Our kids were old enough now that we could have some freedom, and finally, we could do a few things if we wanted.  Instead, at Scott’s insistence, we were accepting this huge obligation with little or no help from his siblings.  The time frame following her confirmation of illness was not a good time for us.

Two of Scott’s siblings lived close enough to help on a daily basis and two did not. The issue then became, did they want to help and would they help?  And if they wanted to help, would Scott want them too? Scott had the ‘power’ by way of the power of attorney and his relationship with his mother to handle and dictate all that needed to be handled.  How much help would he want or allow? And what would the impact of his need to control every aspect of his mothers care do to us and our lives?

What would and could his siblings help with and how could he control it?  I was automatically involved strictly because I am his wife and although I was allowed an opinion, he was the decision maker, in control of her finances and person.  He treated his siblings in much the same manner as he treated me.  They were allowed an opinion, but the final decision was his alone.  His feelings of reasonability for Belle, which had always been in overdrive, skyrocketed after the diagnosis.  He needed to do more for her and we would just have to make whatever sacrifice was needed.  Although, in my mind there was never any doubt Scott would be the primary person responsible for her physical and financial well being, the fact that our family, as well as us as a couple, would be further impacted by her diagnosis came home with a renewed force.

As time passed, we argued about what was required of us immediately, we argued about what would be required of us in the future and argued about if we could make it through this ordeal.  I pressed, wanting the siblings to do more, be responsible and shoulder some of the burden.  Scott needed to be involved in every detail and control the actions of others, partially to reduce his stress level.   We argued about his siblings and how they felt they fit into the situation. And of course, the siblings, whether close or far, wanted input regarding Belle’s situation (financial and personal), without any of the immediate responsibility. It did not matter that we were saddled with the weekly, hourly and minute by minute care of her, they had opinions and wanted input regardless of their location or involvement.  Over the next few years, the stress and discord between Scott and his siblings would peak, ebb and flow, as decisions were made on Belle’s behalf and old rivalries between the siblings were resurrected.  There were also periods of arrangements and agreements, bonding and support between the siblings as the stress of Belle’s situation impacted each of her children and their families.

Belle had stated many times in my presence before her illness and after her diagnosis that she did not want to burden any of her children with her incapacity.  Growing up, she was impacted when invalid relatives lived with her family. One time in particular, I recall her stating the bedroom she and her sisters shared was given to the ill adult that came to stay and that this adult was overbearing and unpleasant.  She had thought this was unfair. She had also experienced the other side of caring for the elderly, as she had taken care of her mother later in life. Mae had maintained her mental abilities but had long term physical issues and had lived with Jim and Belle for several years before her passing.  Although Mae had been easy to care for, the responsibility of having another person under one’s care, in one’s home, especially a parent, created stress for Belle, who had told me that caring for Mae had placed additional stresses on Belle’s relationship with Jim.

Now, Belle felt she was functioning ‘enough’ on her own and thought by living on her own, she was saving us the same burden she had experienced at various times in her life.  She felt she was trying to be mindful of the personal space that couples needed, although based on my relationship with her throughout the years, I often found this sentiment amusing.  I felt she had had very little regard for the space a young couple needed back when Scott and I first married which had been one of our biggest areas of contention through the years.   But, at this point, although her intentions were good, she had no comprehension of how much time and effort was already being expended on her behalf or how burdened we sometimes felt.  She wasn’t aware of and did not understand the invisible and not so invisible support we provided to keep her living on her own.

I voiced my feelings and frustrations outwardly more often than Scott did, but we both felt pressure and obligation to care for her.  In addition to all the methods being used to keep her living on her own, we rarely went anywhere that she was not with us.  We spent many evenings with her at her home, watching TV or attempting to complete small projects. Although Scott’s family and mine rarely mixed, with the exception of our sons’ birthday parties during their younger years, Belle began attending my family gatherings with us.   We strived to create interaction with her for simulation.  We also strived to minimize the time she spent alone.  Of course, we could not and did not display any of our stressed or obligated feelings regarding the time and effort we were expending for her care and safety to her.  She had not gotten ill on purpose.  We were just trying to live our lives, raise our children, take care of her special needs, be mindful of her feelings and still have time for each other.

 

Checkin’ In Friday, Nov 13 2009 

Beginner Blogs , kwlaff 11:20 pm

No Fables, No Stories, just me.  Practicing blogging.

It’s been a long week.  Even with the day off in the middle.  I’m looking forward to the weekend.  We’ve recently had some interior work completed in the house and the place was pretty torn up, dusty, items out of place etc, and we’ve just started trying to put things right.  I plan to spend some time this weekend working on that, and trying to make the place look like normal people live there again.   Normal being relative and all. 

Dinner tonight is standard Friday night fare. It’s with the Friday Night Supper Club.  I’ll drive straight to the restaurant from work on tonight.  I won’t have time to make it home first. We have five couples in the group and each Friday night we eat together.  Sometimes one or more of the couples cannot make it, and that’s fine.  Sometimes a husband or wife cannot make it and that’s fine too.  Whoever can make it is there and whoever cannot make it is not.  We switch around to different restaurants.  Repeating the places we like, skipping the ones we don’t.   We’ve been friends long enough now, and eating together long enough now to know each other pretty well and we always have fun.  We all have much in common, kids about the same age etc, and at the same time not so much in common. There is always much to talk about.    We are lucky to have friends and this night out each week. 

Short practice session.

 

A Beautiful Sunset-Not Really Friday, Nov 13 2009 

Humor , , , , kwlaff 10:41 pm

A Beautiful Sunset-Not Really

So let’s just say there was this wife that likes to take sunset pictures.  And let’s just say this was this husband that knows this.  And let’s just say that on one evening there was a beautiful sunset.  Are we all on board?   Let’s just say we are.

One day Wife arrives home before Husband.  She’s still in her work attire, skirt, hose, minus her shoes, while she places dinner in the oven.  Chicken, in case it matters.  Husband calls.  He is on his way home.  Be about a half an hour. Tells Wife there is a beautiful sunset and if she drives to the end of the road they live on, where it intersects with the main road, she might be able to catch a good picture of it.  The area directly around them is heavily wooded, but the road at the intersection faces west, so there might indeed be a view of the previously mentioned sunset.  Wife decides to give it a go.  Slips off her hose, grabs the mega 35mm camera, grabs her GMC Yukon keys, grabs her cell phone, checks the oven time, asks the two little dogs, one brown, one white, if they’d like to go for a ride.  Of course they do.  They always do.  Wife heads to the Yukon, loads little dogs up.  Excited, they are.  Especially the brown one.  Loves to ride. Wife drives to the end of the road.  It’s not that far.  Not really.

The sunset is not quite visible for a picture and it looks like if Wife drives down the road facing west to the front of the subdivision, she might have a better chance at a good picture.  It’s not that far.  Not really.  So Wife drives a bit further.  At the entrance to the subdivision, the view is okay, but still partially blocked by trees.  This intersection is busier; a ‘T’ style intersection, cars passing at highway speeds. The highway is two lane and Wife knows that just a little bit north on the highway on the left side of the road, there is a spot where the trees break and there is a nice view overlooking a field.  She drives by it everyday.  She’s sure the sunset will be visible from there and the pictures will be great.  It’s not that far up the road.  Not really.  So she turns right and drives a bit more.  She turns left into an old unused driveway just before the crest of a hill, just past the opening in the tress.  Wife puts the Yukon in park and turns off the engine.  The view is okay, but to get it just right, she needs to get out of the Yukon and walk down the side of the highway just a bit.  It’s not that far.  Not really. 

She grabs the camera and gets out of the Yukon.  She shuts the door and picks her way, barefoot, down the grassy/gravely right of way next to the road as cars fly by at highway speeds.  The sunset is beautiful.  She takes several pictures.  With her excited little brown dog watching from inside the Yukon.  Bouncing on the armrest.  Where the automatic lock button is located.   

Even from the distance away, Wife hears the Yukon doors lock. 

Wife picks her way barefoot back down the grassy/gravely right of way to the Yukon.  Tries the door.  Locked.  Looks in the window.  Phone on the console.  Keys in the ignition.  Awesome.

So let’s recap. While dinner is in the oven, Wife is over two miles from home, standing barefoot, holding a camera, on the side of the road next to her locked Yukon, which contains two little dogs and her cell phone. 

Wife tries to get the little brown dog to bounce on the armrest again until the Yukon unlocks.    This actually works once, but relocks as quickly as it unlocks.  The little brown dog is bouncing too much it seems. Wife considers walking back to the house, which hopefully hasn’t caught fire, to get the spare set of keys.  But Wife can not recall if she locked the house when she left.  If she walks all the way back, barefoot, keep in mind, and the house is locked, the trip would be wasted.  She is relativity certain she locked the house.  Husband always insists.  Wife doesn’t give up on little brown dog unlocking Yukon but decides to wait for Husband to drive by on his way home.  He will, because it is his only way home.  So Wife talks to little brown dog and waits.  And waits.  And waits.  Wife can hear cell phone ringing in Yukon.   And doesn’t see any smoke from direction of home. After a time, Husband’s truck crests the hill.  She waves.  He drives by.  And waves. 

Moral to this Story:  One can really go too far without trying.

(And for those of you that just have to know:  The house was locked. The dinner was only slightly overdone. He did figure out she wasn’t just standing on the side of the road taking pictures. He turned around and came back to find out want was wrong.  He drove home and retrieved the extra set of keys.  The little dogs had a great time.  The pictures turned out so-so.)

 

Chapter Nine-Alzheimers Story Friday, Nov 13 2009 

Alzheimers Story and Elder Issues , , , , kwlaff 6:41 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Nine

During 1996, after two years of memory and ability issues and an obvious decrease in Belle’s overall functionality, which forced us to create methods to monitor her and assist her, we decided that the doctor that Belle had been seeing for years did not want to believe she could really have a problem.    Even with repeated office visits and her inability to follow time and answer questions posed of her, no additional tests were ordered or conducted.  We no longer believed the behavior we were witnessing was normal aging. Scott decided to seek a second opinion and we discussed the potential change in doctors with Belle.  She was aware something was ‘wrong’ and was willing to visit with another doctor if Scott thought another doctor would be able to help her.   So Scott set up and accompanied her to the appointment.

Based on Belle’s abilities, the doctor recommended several tests, physical and mental.  It was obvious she had reduced abilities and it was important to rule out a physical reason.  Over the next few weeks, the requested tests were performed. When all the results came in, the answer was consistent with what we had begun to fear.  There was not a physical reason for her loss of memory and function.  It was not normal aging.   It was dementia of an Alzheimer’s nature. 

With a diagnosis in hand, we now needed help with retaining and maximizing her abilities. We located a doctor that specialized in geriatric issues that was located not to far from our home and made an appointment for Belle.   Scott and I accompanied her to the appointment.

I know this may sound outrageous, especially after listing all the problems we had witnessed with Belle’s memory and function, but this appointment really opened my eyes regarding how far down the path of ability decline and memory loss Belle had traveled.  As one can ascertain by all the previous chapters, we knew something was wrong and we had created systems to protect and assist Belle in every way that seemed to be required.  But sitting with Belle in the doctor’s office that day, for moral support from my point of view, listening to the simple questions asked of Belle and watching her struggle with answers to questions that were specific to her life and family history, I was surprised and dismayed. 

As the doctor and nurse began to ask questions about Belle’s life and medical history, the problem became the elephant in the room that no one wants to mention.  It was very clear that she could not recall information she had always known.  How many children do you have?  Four she said and then glanced at me for confirmation.  Five, I whispered while holding up my hand to display the number five.   How old are you?  She couldn’t recall and guessed a few years younger than she was.  Personal medical history, family medical history of heart problems, memory problems, etc.   No problems that she knew about, followed by a glance at me with a beseeching look.   Both her parents had medical problems that she was well aware of and certainly had known in the past.  As the doctor completed the standard questioning in a calm and reassuring manner, we stayed in the room with her as she incorrectly answered or did not offer an answer for each question posed.  Sometimes she offered a nervous laugh as a response versus a verbal reply. We provided the answers to the questions she could not provide and corrected information when her answer was impartial or not correct.   I felt defensive during this process, feeling the need to protect Belle from the doctor and his questions.  It became difficult as the questions progressed to allow her to attempt to answer at all.  We began to answer for her to save her the strain.  It was one issue for her to be confused in private with people who cared for her and could protect her, but quite another for her to be confused and unable to answer questions in this, more public and unprotected, manner.   It was a personal reaction to Belle’s plight I had not expected of myself. 

Over the next few weeks, Belle worked with professionals for memory and task testing and had numerous other diagnostic tests completed. The doctor recommended she be placed on a memory medication commonly used for Alzheimer’s patients and that we were told might help to stabilize her abilities. We agreed.  For us, the diagnosis and subsequent report of her abilities was confirmation of the worse possible outcome.  We thought we had a good idea what the diagnosis meant.  We were naïve and although we did not know it at the time, unprepared.

 

Chapter Eight-Alzheimers Story Friday, Nov 13 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 6:17 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Eight

Memory loss or confusion was not Belle’s only symptom.  Other issues began to erupt and it was difficult to handle them without being overbearing or accusatory.  In addition to our phone calls and frequent visits, Deacon spent more and more time at Granny’s house, partly to help her, in theory, with her projects and paper sorting, and partly to report to us what was really happening during the day.  He become a mini adult and often assisted Belle with minor decisions and reasoning.

What was reported was that Belle was not eating or when she did eat, it was sweet items, mainly cookies and ice cream. With this news, Scott’s morning check in calls began to include reminders to eat including suggestions regarding what to eat.  Afternoon calls or evening visits included questions regarding what she had eaten.  We began checking on the contents of her pantry or refrigerator in an attempt to verify her meal intake.   She always had a ready answer for what she had eaten, even if it turned out not to be true.  We started bringing meals over and eating with Belle more often or having her join us more often for restaurant meals so we could ensure she was eating.  Sweets on hand continued disappear first.

Although Belle had never had a weight problem, she, like most women, felt like she did.  Jim was not a man who wanted an overweight wife and part of her self improvement routine throughout the years was to prevent being overweight.  She closely monitored her weight and it was not uncommon for her to eat light, small meals.  A standard breakfast might be grapefruit juice and toast.  However, now her eating patterns, which had been standard in her life for years, were changing or being forgotten but the underlying concern, strangely enough, over her weight remained intact. She began to display some weight gain as she now preferred meals of ice cream and cookies, even as she lamented over putting on weight.   Deacon, during his lengthy stays with her, was used as an excuse for more frequent fast food runs, including hamburger and shakes, one of her most nostalgic meals, with Granny telling Deacon there was no need for him to tell his Dad.  She was eating sweets in much larger quantities than ever before and still weight conscious.  It was not uncommon for her, when eating a meal with us, to skimp on her calorie intake, while mentioning her concern over her weight.

 

Chapter Seven-Alzheimers Story Friday, Nov 13 2009 

Alzheimers Story and Elder Issues , , , , kwlaff 6:07 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Seven

Belle began to attempt to cover up her memory and function issues.  While we knew she was experiencing more and more difficulty, causing good days and bad days, we did not know if she knew she was having problems.   We looked for indicators in her actions and speech that might reflect the level of her abilities.  We spoke with Belle frequently regarding how she was feeling and thinking.

Belle’s statements of ‘crazy’, as mentioned earlier, became a standard routine and we had come to feel it was an excuse she used more often than she needed to or should.  Once the term crazy was extended to explain an action or event, no further explanation seemed to be required from her point of view, even though we often sought more information. We thought her use of this phrase was a confidence issue, not an ability issue although as her abilities decreased her confidence in herself decreased as well.   In some areas of function, she began to be very timid.

We noticed that in addition to the crazy excuse often extended, she was also saying things that were obviously not true.  It was not difficult to catch her telling untruths. The incorrect items were small and not necessarily important but based on the issue they related to, there was not really a reason to not tell the truth. We joked to each other that the truth would have been easier to relate than the yarn or tale we received.  When we discovered the first ‘stories’, we thought Belle’s making things up or lying was deliberate.  Why she would lie, we had no idea. Over time we concurred that an obvious, blatant untruth meant we needed to look into the matter further.   We began to understand that this activity was not deliberate, but a result of Belle’s faulty memory and/or reduced abilities.  Most of the time, it seemed she believed what she was saying was true, or at least not an outright lie.  We were careful not to be confrontational or demanding when we discovered an untruth, as there was no reason to be harsh and cause her to be embarrassed or, worse yet, more confused.  Often we felt she was stating something that she felt we wanted to hear, as she knew good from bad, in much the same way a child might understand good from bad.  We believe she did this for self-protection or in some instances created stories due to confusion.  She wanted to be able to answer our questions or fit in when others were around.  She wanted to reason things through on her own.  She desperately wanted to understand. 

Another signal of a bad day was the phrase was ‘my eyes are tired’.  Initially, when we began to hear this phrase, we thought she might have some sort of eye strain or other sight issue.   So Scott made arrangements and accompanied her on a visit to her ophthalmologist.  Her inability to respond to the testing was obvious, but other than the normal issues with her eyes, sight correction and cataracts, her eyes were fine.   It was then obvious that the statement, which she used often, was not truly about her eyes.  We began to monitor when ‘tired eyes’ became part of her conversation and compared notes with others that had frequent contact with Belle.  It soon became apparent that she resorted to commenting about her eyes being tired when she was confused or unable to recall the information she wanted to provide.   Based on her actions, our conversations and the situations that arose, it was my impression she was trying so hard to comprehend and recall that she tired herself out. So the only way she could relate this information to us was to describe how the result felt.  I liken it to thinking so hard on a topic that one gives themselves a headache. 

Whenever anyone spoke with Belle on the phone or in person, and asked what she had accomplished or done that day, the standard response was ‘sorting papers’.  I sorted through papers today, or I kept busy sorting my papers.   She was always making headway on the mounds of paper and other miscellaneous items that 50 years of marriage and 70 years of life generate.  After a time, when we saw no evidence of any papers ‘being sorted’, leaving the house or any other headway being made,  we would press a bit harder with our  questions.  What kinds of papers were you sorting?  Did you throw any papers away?  Her answers remained generic.  MY papers, she would insist and after a while we began to realize that no ‘sorting’  was occurring, much less sorting for the purpose of disposal.  This type of non specific answer became common place for any question asked, and although hard to pin point when she had actually completed or at least started a task, we understood she was answering to the best of her ability.    

Other indicators of waning abilities were more visible. When mail would be delivered, she would go through it and write notes to herself so she could remember the item or know how to handle it the next time she saw it.  When Scott received a call from her insurance agent stating a premium had not been paid, we sorted through stacks of bills, solicitations and junk mail with notes to herself written on them.  Belle, ask Scott about this.  KEEP!  VERY IMPORTANT! Belle, you need to pay this one where typical of the notes we found.  Belle could no longer distinguish the difference between important items and solicitations or junk.  ‘Important’ or ‘ask Scott’ might be written on obvious junk mail addressed to current resident or occupant as well as a notice for her insurance premium or electric bill.  She had also mistaken solicitations from political candidates or the Republication party as bills that were due and sent them a check.  Further review revealed some bills were missing completely.  Scott contacted all her billing parties, verified the status of each bill, and had the important items changed to be mailed to our address. From this time on, Susan or Scott assisted with her mail and bill payment with Scott eventually taking over the whole process.     

Belle began to forget that Jim, her mother or other deceased loved ones were gone.  This circumstance normally occurred on a bad day when she had been upset by something else.  She might place a call to Scott and ask him if Jim had called.  Or if we dropped by after work, she would demand to know if we’d heard from Jim.  Each time an episode of this nature occurred, if Jim was the object of her concern, she would be obviously mad at Jim for not calling and for being out of reach.  (That’s one long distance call!) On the best of the bad days, reminding her he was gone snapped her back into the present.  On the worst of the bad days, the fact of his passing was not retained.  From my observation, and I’ve told Scott this many times, she did not ask about him in any tone other than anger.  Forgetting he was gone did not seem to occur when she was happy or sad. For whatever reason, Jim was associated with anger and, by the sound of her voice, obvious distrust.  On occasions when Belle forgot a loved one, such as her mother, was gone, the realization they were gone always hit her hard and she would react as if the news was fresh and recent even if their passing had been years before Belle became ill.

In our attempt to understand her confusion and forgetfulness, we often used logic.    Neither Jim or Belle’s mother had ever lived at the current home, so how could Belle become so disoriented that she believed them there?  Why did she know they were gone sometimes and not others?  Why was she always mad at Jim?  (We thought we knew that answer.) As time passed, we determined that logic did not impact her mental/memory situation.  What was lost one day might be back the next.  What was forgotten might come and go.  What made sense or was logical to us, was not to her.  I went through a phase of attempting to delve into how her mind was working, thinking that if I could understand the how, the why would follow.  I wanted to know how she arrived at some of her decisions or the thoughts she expressed.  If we just knew that, we could better understand her and help her or maybe even prevent the problem.  Scott was the first to express to me that applying logic did not help and that while it was admirable I wanted to understand how her mind worked, it was just not possible to understand the brain when it is not functioning properly.  I, over time, came to agree with him although I still approached my attempts to understand Belle and her activity from a logical standpoint.

 

Chapter Six-Alzheimers Story Friday, Nov 13 2009 

Alzheimers Story and Elder Issues , , , , kwlaff 5:55 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Six

As the months passed, the issue that seemed to give Belle the most difficulty was time. She was losing the ability to keep track of the time of day, the day of the week, or appointments she had set. Since we had been assured this was normal aging and we had no need to worry about increasing difficulties, we developed creative ways to assist her with keeping track of time so she would not miss an appointment or deadline. A special wall clock was purchased with a date and day display. This type of display was common in a watch, but not in a wall clock, and in the days before the internet, hard to locate. We posted calendars with notes regarding appointments, deadlines and debt due dates. Scott’s calendar mirrored hers, so if an appointment was set for her, he could call and remind her of it an hour or two before she needed to leave. Soon after Jim’s passing, Belle had asked Scott to be her Power of Attorney, and he used this document to add his name as a contact for her accounts with the electric company, the telephone company, the insurance company and any other regular debts with scheduled payments. Belle was paying her own bills, for the most part, and Scott was, from time to time, checking to verify payment.

For unknown reasons, Belle’s worry of forgetting to pay an amount due seemed to focus on her safe deposit box. Her box was located at a branch of my employer, so I assured her I could monitor it for her. On numerous occasions, she voiced concern that she would forget to pay the rent and her valuables stored inside would be lost. Although we assured her Scott and I would no allow this to happen, on more than one occasion Belle called me at work, to request I verify she had paid her box rent and I would assure her that all was fine. Belle’s checking account also resided at my place of employment. On several occasions, she voiced concern that she might be able to be talked out of money and this was something she knew she could not afford. So I assured her I would keep on eye on her account and the box rent and I did. I could monitor the account balance and report to her anything I thought looked amiss. I received approval to place a comment on her account which told the front line staff to call me if anyone came in person to conduct a transaction on her account or attempt to access her safe deposit box. At least once a month, Belle would bring up her concern, seemingly as a new concern, and I would reassure her I was on top of it. She said this made her feel safe that I could ‘look out for her’.

As the year passed, we tried additional time tricks. Belle began a medication regime that needed a morning and evening dose. We purchased an alarm clock/radio with more than one alarm time setting and set the alarms to go off once in mid morning and once in mid evening. I wrote out instructions that included why the alarm was going off, how to turn the alarm off and that the alarm meant she needed to take her medications and attached them to the top of the alarm clock. By this point in time, we were already dividing up her medication for her during our regular Sunday evening visit into a case with days of the week stamped on it. In addition to the alarm clock reminder, Scott began calling her every morning around 9 a.m. This call accomplished several things. In addition to verifying she was okay, he would remind her to take her various medications, and if any appointments were scheduled for that day, he reminded her of them. These creative solutions, for the most part worked. Belle continued to live on her own, with some invisible and not so invisible assistance.

Despite all our efforts, Belle’s inability to track time would get past us and create an embarrassing but harmless situation. While no harm was done, she would often be upset by the circumstance. On more than one occasion she appeared at the beauty shop for a hair appointment hours early. On at least two occasions, she was more than a day early for her appointment. Since we shared a hairdresser, Louise would call and let me know of Belle’s arrival. Depending on how upset Belle appeared, Louise would put Belle on the phone so I could assure her, even though Louise had reassured her already, that the appointment wasn’t until the next day or next week and that being early was better than being late. Once calmed down, Belle would say she was just crazy, laugh and head back home. I am sure she had this type of issue occur more than we knew about and that we only found out about some of the instances.

Every year on the third Sunday in May, Jim’s family had a family reunion in East Texas. Attendance at these reunions was highly encouraged and family from all around the country made a special effort to attend. Since Jim’s passing, Belle had traveled with us to the reunion. In May of 1996, Larry planned to attend the reunion but Emma had other obligations and would not be able to attend with him. So Larry planned to fly to out, stay with Belle for a day or two and drive with her to the reunion. Scott, the boys and I would drive over on our own later on. Larry and Scott coordinated Larry’s arrival and Scott assisted Belle with placement of the appropriate reminder note on the calendar, as Larry would be arriving during the work day and Belle would be picking him up at the airport.

On the second Tuesday of May, Scott called Belle as was his habit around 9 a.m. The conversation was normal, with the standard medication intake and other reminders, until Scott asked her what she had planned for the day. This was a standard question that normally received the standard generic answer along the lines of ‘sorting papers’, etc. This time however, Belle stated she was picking Larry up at the airport. Scott told her Larry wasn’t due to arrive until the following week, but Belle was insistent that it was that day and she was ready to go. Scott checked his calendar to ensure he had it correct and then once again told her it was the following week. He asked her which phone she was using and she let him know it was the kitchen phone. Her appointment calendar was posted in another connected room, which could not be reached with the kitchen phone cord. He told her the date, asked her to put down the phone and go look at her calendar. He stated the date again, and told her if she looked at the calendar she would see that next Tuesday’s date was when Larry needed to be picked up at the airport.

When Scott told me about this event, he stated he heard the phone be placed lightly on the counter with a slight click. Through the phone receiver he heard the movement of shoes across the vinyl floor, the rustling of paper, and the sound of shoes on a vinyl floor returning to the phone. As Belle picked up receiver back up, Scott heard a big sigh and then Belle said in an exasperated voice “but I already have my lipstick on.” Convinced that a trip to the airport was not part of her obligation that day, the situation resolved with Scott and Belle laughing about her being crazy and a discussion about what she would do with all her free time that day. Scott laughs now when telling this story to others and in the years that have passed since then, we use Belle’s excuse as an explanation for many things. It symbolizes how badly we want something to be right and how easy it is to get something wrong. If you’ve taken the time to put on your lipstick, you aren’t the problem.

Due to this and other similar events, we began to withhold appointment or event information from Belle until an hour or two before it was to occur. If she was aware of the event too early, she could no longer track how long until she needed to prepare for it, and would fret, believing she had missed it or would be late for it. She was always early, and would pack for a trip weeks early or dress for an appointment days early. So we would only tell her of an event an hour or two before it was to occur to prevent stress for her. She was more likely to have a bad day if she was worried or stressed.

 

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