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.