My Random Life

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

Chapter Fourteen

It is my understanding that because each person is different Alzheimer’s impacts each person different.  The overall progression of the disease may be the same, but each person fails to be the person they were before in a different way and time frame.  Up to this point in time, Belle’s symptoms and behavior changes were varied.  Each change by itself did not seem that significant.  All together, however, the changes were adding up.

Belle had always liked children and babies, although I do not recall, during the years before her illness, her paying much attention to the children of others unless they were misbehaving.  Misbehaving children and their parents would receive a withering look of disapproval.  Now, whenever we were out in public a baby or small child would pull her focus and she would point the child out.  This happened in numerous places, such as restaurants.  She would find it difficult to continue with the previous activity, such as eating, once a child or baby was noticed.  If she was watching the child, her focus on the child eliminated her ability to do anything else.  A baby close to us in a restaurant was so distracting for her, that we tended to seat Belle facing away from the people in the restaurant.  Without the distraction, she would be able to eat her meal.

Belle began to struggle with common words.  When her story or comment reached a place where she needed a word she could not think of, she would sometimes skip it and continue, making the conversation difficult to follow or she would replace it with a more lengthy description.  Some of these descriptions seemed to take more effort than the original word would have generated.  As an example, I vividly recall an instance when Scott, Belle and I were in the car together, and we passed a couple with a child in a stroller that drew Belle’s attention.  She pointed to them and asked us to ‘look at the baby on the’ then she hesitated, appeared to struggle for the word she wanted and finished her comment with ‘pathway of concrete’.  The couple and the child in the stroller were on the ‘sidewalk’.  This type of word substitution began to happen more frequently as her illness progressed.  Oftentimes, the word or substitute phrase she wanted never came to mind, even if we supplied some suggestions.

Belle continued her practice of reading billboards, signs, and bumper stickers that had first been so noticeable on the 1995 vacation trip.  But it was apparent that many times, although she could read the sign and pronounce the word or phrase correctly, she did not know what the word or phase meant.  It was as if all the energy exerted speaking the word out loud and removed the energy needed for comprehension.  When it was obvious she did not understand what she read, we began to read things out loud, except when we were in the car, hoping she would retain and comprehend.

A topic discussed before her illness that we had no doubt where she stood, if discussed now would find her opinion changed, often to the extreme opposite position.  She could voice opposite opinions in the same sentence.  Belle had definite opinions, conservative opinions that had not varied over time, until now.  Additionally, she began to voice opinions or make statements on issues that would have been completely out of character previously.  As an example, on a few occasions she stated angrily to me that the Catholics had killed Jim. I recall thinking “where is this coming from?”  Jim was in a Catholic owned/run hospital when he passed, but that was the only relationship between Jim and the Catholics that existed and of course, his death was not related to anything to do with the hospital.  Yet, not only did Belle state it, she appeared to really believe it.

Belle was raised during a time and location when voicing prejudice against others was not uncommon, but in all my years of contact with her, I had never heard her say anything derogatory against Catholics, Jews, Hispanics or African Americans.   During this period of her illness, it was possible she could state something inappropriate and/or offensive to others present.   If a waiter or busboy in a restaurant was a minority, she would watch him closely, as if he was going to do something bad in front of her.  She might even go so far as to point or whisper that we needed to watch him. When Scott and I spoke about this issue, we finally settled on the idea that the façade Belle had built for herself to become the sophisticated person she had been so driven to become was being broken down by Alzheimer’s.  Due to her upbringing, I feel she may have felt some of the things she said about others were true, but the worldly person she wanted to be would never voice these feelings, because it would be inappropriate to do so in public.  The disease removed her ability to distinguish appropriate behavior from inappropriate behavior and thus we heard her say things that were completely out of character and often inappropriate.

Belle also began to display paranoid tendencies.  We discovered she was blocking her bedroom door at night, as well has hiding hammers or other hand tools under the bed.  On one occasion, we had called her several times and had not gotten an answer.  So we dropped in to check on her.  She did not answer the front door.  We entered the house and a quick search revealed she must be in her room.  The door was closed.  When we knocked and tried to open her bedroom door, it would not budge.  We could hear her snoring.  After repeated calls of her name and calling her phone number, letting it ring, we finally woke her up and once up, she had to move a small dresser from in front of the door, along with some fully loaded suitcases used for clothes storage.  Inspection of her room caused us to realize she was sleeping with a hammer under the edge of her bed.  Scott questioned her.  Was she afraid to be alone?  Why was she blocking her door?  Although she stated she was not afraid, and had no recollection of blocking the door, we found the door blocked numerous times after that event.  The hammer was occasionally other tool, but a tool of some sort was always in the area for, we assumed, protection at night.

The medication alarm was no longer working to remind Belle to take her medication.  In addition to his morning reminder calls, where he would listen to her take her pills, Scott worked with the doctor to rearrange her pills schedule to allow for the most important ones to be taken in the evening and would stop by on the way home.  Scott could review her morning dosage to ensure it had been taken and watch her take the evening doses.   As time passed, she would, on occasion hide the pills or pretend to take them by placing them under her tongue and then showing us her ‘empty’ mouth.

Belle was no longer able to distinguish the appropriate treatment of items.  As an example, an old family photograph that she cherished and protected for years would now be written on in ink, defacing the photo.  And in some cases the information written on the photo would be incorrect.  She used packing tape or duct tape to repair delicate items that the tape damaged rather than fixed. Another example of this issue pertains to a nice solid wood entertainment center that Belle had borrowed from us when she moved into her city home.  She drove screws into its surface to hold notes and pictures in place, defacing and permanently damaging the finish on the piece.  These types of activities, once again, were completely out of character for Belle.  Before her illness she would never deliberately defaced the property of others, or damaged a treasured family photo.

Belle began to move and hide things.   Objects in the house were in constant movement and sometimes they would disappear from view, only to reappear again later.  Or we might find a jar of mustard in the china cabinet or the salt shaker in the medicine cabinet.  Most of the time, the objects on the move were no big deal and we became accustomed to things that had always had a proper place now traveling about the house.  In one instance her diamond ring went missing, and we searched for it for days.  After an exhaustive search, we finally gave up, reconciling ourselves to the fact that we might never find it.  Then, as suddenly as it had disappeared, it reappeared, although Belle could not recall that is was missing or where she had found it.  We eventually had a ‘fake’ of her ring made for her to wear.  The original was placed in safe keeping.

The items listed above are a sampling, not an inclusive or exhaustive list, of how Belle’s abilities were deteriorating.  We continued to deny to ourselves how bad the situation had become.   We wanted to abide by her wishes that she live on her own and did everything in our power to allow this to happen or at least create the illusion it was happening.  The changes in her personality were much harder to accept than the decline in her abilities. Even now, writing these items for this document, I am surprised at the excuses we made for these personality changes, events and circumstances of Belle’s disability.  Denial of the depth of the problem caused us to allow her on live on her ‘own’ for too long.

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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.

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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.

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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.

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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.

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