Chapter Twenty Two-Alzheimers Story Sunday, Nov 29 2009 

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

Chapter Twenty Two

 

 

The extended family in East Texas frequently asked how Belle was doing and I developed a monthly email that updated family members that wanted to know about her situation.  Although I wrote the emails that were sent to the group, I would confer with Scott before sending the email out.   We had determined pretty early in Belle’s illness that Scott and I did not see eye to eye when presenting a description her abilities.   I used to laugh sometimes at how far apart our descriptions of her abilities could be.  I was all about plain talk, and Scott, from my perspective, wore rose colored glasses.  When we spoke about this gap, Scott always stated he wanted to give Belle the benefit of the doubt.   I always said I knew what happened wasn’t her fault.

Up to this point in time, Scott and I had tried to keep including Belle is as many of the extended family events as possible.  The three of us attended family reunions, weddings, and funerals and we assisted with relatives that wanted to come and visit her at home.   Most of the trips we completed where short hops of 3 to 4 hours one way, and for the most part Belle handled these trips with a minimum amount of confusion.  She enjoyed visiting with those familiar to her.  And we were always surprised at how well she could cover when failing to recall who she was visiting with. As always seems to happen, one event brings home the truth of  the situation and one of our trips to east Texas, made the issues Belle faced very clear to me.

Funeral services normally have an order of attention.  Those most directly impacted, such as the immediate family receive the sympathy and support of the attendees.  Other family members normally provide the support and sympathy, and do not receive the same level of attention of the immediate family.  In November 2001, Scott’s cousin, a young mother in her mid 30’s that was also the child of Belle’s brother and sister in law she had stayed with during Susan’s recovery, passed away after a year long illness.  We made arrangements and traveled to east Texas for the funeral service and Belle was with us.  Since so many attendees were traveling to the service from various distances, the church had a buffet meal prior to the afternoon service and we met several of Belle’s siblings along with other cousins in the reception hall during the meal.  Prior to arrival, we had reminded Belle of the purpose of the trip, but once in the reception hall, she could not recall who had passed away.

We had attended several funeral services with Belle since her illness had become more advanced without incident.  However, this gathering was different. Belle was visibly upset at the sight of her saddened brother, the father of the cousin that had passed.  She clung to him, clutching his hand and petting his arm, refusing to release it even at his request.   It was my impression that she believed  her brother was there to support her for a loss she had suffered rather than the other way around.    Scott distracted Belle, gently removing her grasp on her brother, to allow him to receive comfort from others in attendance.  As the event progressed, Belle’s emotional state became more distraught which negatively impacted her other abilities.

We had begun the practice of escorting Belle to the restroom about every two hours in an attempt to avoid accidents, even though she was wearing protection. In public, assisting her in the restroom was always my responsibility.  Before the beginning of the actual funeral service, we suggested a restroom trip, and I escorted Belle to the facility.  The restroom was crowded and we had to wait for a stall.  As we waited Belle began speaking with the lady waiting in line behind us in a manner that led me to believe Belle knew her.  I had been a  family member for many years, but at reunions and other gatherings, I did not always know all the family members.  In this instance, based on Belle’s conversation, I believed Belle was familiar with the lady.  Belle began to attempt to grasp the lady’s hand and illicit sympathy for her own loss, once again seemingly believing that Belle was the one to be comforted.  I realized Belle did not know the lady (and the lady did not know Belle) by the look on the lady’s face.  I interceded, extracted Belle from the lady and ushered her into the now available stall.  Once Belle was in, I apologized to the lady with a brief explanation that Belle was disabled.  The look on the lady’s face told me she was not convinced, and to be truthful, Belle did not appear disabled.  At the graveside service, an immediate family member introduced us to this same lady, who was a friend of the family, who kept her distance and indicated she had already met us.

Belle’s obvious personal grief, confusion and misunderstanding of appropriate actions in this situation caused us to reassess her attendance at similar events in the future.  We wanted to include her as much as possible, but did not want her to be hurt or suffer such feelings of fresh loss and confusion.   We only attended one more funeral with Belle in the fall of 2002, the funeral of her last aunt, to whom she had been very close.    As time passed, we stopped attending other types of family gatherings that required overnight travel.  Belle required restroom and personal hygiene assistance that tended to make road travel difficult and changes in routine by the travel itself created bad days for her.  If we attended an event without her, it seemed that others did not understand why we had not brought her with us.  Rather that trying to explain time and time again the reasons Belle did not travel with us anymore, it became easier not to attend at all.

Chapter Twenty One-Alzheimers Story Sunday, Nov 29 2009 

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

Chapter Twenty One

Every family and individual deals with stress and worry in different ways and every Alzheimer’s patient declines in a different way. The stress in each of us became evident in several different ways.   Watching the decline of a loved one and dealing with the issues created by that decline is not an easy or desired task.

Scott internalized his stress.  He began to suffer from bouts of severe gastro acid reflux with severe heartburn and was assigned a medication regime to attempt to offset the symptoms.  He had events of elevated blood pressure which would result in fatigue and headaches.  He bought a home blood pressure cuff and followed doctor’s orders to track his blood pressure, which seemed to peak in times of high stress. His temper was more likely to flare at small things that were not normally an issue.  Always prone to be judgmental, his opinions on right and wrong, regardless of the topic, sharpened.  Without considering any other aspect of stress, sharpening one’s opinion of right or wrong, proper or improper can cause friction between any two parties.  Although Scott had never been a teetotaler, his intake of alcohol increased.  It came more common for him to consume an evening cocktail, sometimes two, even though this type of activity had not been a habit in our home.  Although understanding through use of rational thought processes that we needed to laugh about some of the things Belle said or did, Scott might react badly if he perceived that his mother was presented in a bad light during a story. Scott’s focus on Belle and her care was the number one item in our lives, with all activity in our lives being centered on that responsibility.  We began to do more things separately, because any joint activity had to be planned to consider Belle.

My stress manifested itself in other ways. I began talking more with others, relaying situations and events involving Belle.  Coworkers became completely aware of my situation at home and with Belle being the focus of our lives; she became more and more the topic of my conversation.  I spent time researching dementia websites and reading stories about caring for suffers and even entered a comment or two on what would now be called a blog.  Scott and I had more disagreements, some about Belle, some not, and were more prone to bouts of yelling at each other for no real reason.  I began to struggle with weight gain, as food became my comfort.   I also started disagreeing with Scott just to disagree or pick a fight.  It seemed that feeling bad was at least feeling something and arguing was interacting.  Previous to this time in our lives, friends were ‘our’ friends.  As we began to do more things separately, we began to have separate friends.  This situation added to the things we could argue about, increasing the stress level between us.

Others associated with Belle’s care displayed various signs of stress as well. Deacon began to act out, drawing attention for his bad behavior.  His grades declined.  He spent an increasing amount of time in his room or at friends’ homes, away from the stress radiating from next door and in our home.  He also became more vocal about our fighting, chiding us for our disagreements.  And it was his comments, in part, that caused us to seek group therapy for assistance, support and venting.  Cooper avoided activities that included Belle, and displayed obvious unease when in her presence.   He commented on our arguing, commiserating with Deacon over the situation Deacon was stuck in. Susan and her husband also displayed signs of stress, with increased drinking and displays of anger at us and at each other.  Susan’s complains about her role and responsibility in caring for Belle became more constant and insistent.  Scott began to complain that Susan was complaining and as their communications focused on Belle, their relationship continued to erode.

Susan developed severe gastro acid issues, which had began with reflux, and developed into a more severe form of esophageal spasms which caused her to, at times, not be able to swallow food, and in the worse cases, vomit whatever she had eaten before it ever reached her stomach for digestion.  After many months of doctor visits, tests and discomfort, and after delayed diagnosis, the problem was identified.  After several non surgical fixes were attempted without success, surgery was recommended.

Plans were discussed and I recall the panic in Susan’s tone when she considered recovering from surgery at home for several weeks with Belle at home with her.  Recuperating would need to be restful and non stressful.  Life with Belle was not restful or stress free.  Our experience with Scott’s back surgery, when Belle was at a higher level of function, proved Susan’s point.  She would have a difficult time with recovery if Belle was home to ‘help’ her. So Scott and Susan discussed the matter at length, searching for a suitable solution to allow Susan the time she needed to recover while not negatively impacting Belle.  Of all the options discussed, having Belle away from home both during the day and at night was required.

Susan suggested and Belle’s brother and sister in law agreed, to invite Belle stay with them for a visit during Susan’s surgery and recovery.   They were aware of Belle’s condition and eroded abilities but felt that the visit would be good for Belle.  They were both retired and therefore home during the day.  Belle would not be left alone while away from home, which would be a concern in an unfamiliar place.  Scott and I discussed the pros and cans and felt that Belle, who abilities diminished whenever a routine was broken, might have a bad day or two upon arrival, but would be able to rebound and enjoy her stay.  Scott spoke at length with Belle’s sister in law, explaining Belle’s situation and decreased abilities in much more detail than in previous conversations.  As they lived about four hours from us, travel arrangements were discussed and agreed upon.  We would meet them halfway at an agreed location and Belle would stay with them for an extended visit of two weeks.  At the end of that time, we would all meet again at the half way location and Belle would return home.

Overall, Belle’s visit with her brother and sister in law was uneventful and calm.   They did learn, however, through personal experience the difference between an intellectual explanation of the effects of the disease, and the day to day function loss of the disease.  When listening to Scott explain Belle’s decline and limitations, Belle’s her brother and sister in law, in good faith, were sure they understood how Belle’s decline had impacted her and were prepared to assist her as required.   As her visit continued, they were surprised and saddened, that this person they both remembered as a vibrant, sophisticated woman was no longer the person they knew.   The changes in her personality and  memory were harder to accept than the decline in her functionality.  Belle’s return home after her visit was uneventful and Susan’s recovery went well.

Over the years since Belle’s diagnosis, I’ve often thought that interested parties think they understand the impact of Alzheimer’s, and I think often intellectually, they do understand it.  But, until one experiences the decline of a loved one first hand, on a day to day basis, true understanding is not achieved.