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

Chapter Twenty- Seven

As Belle declined, Scott and I disagreed more and more about how her lack of abilities were impacting us and in some cases what her abilities were.  I started to keep a journal of my complaints, because each time I tried to talk about my feelings with Scott, he would shut down emotionally. He was doing all he could do to keep the situation afloat, and he needed me to be self sufficient.  Reading back through some of my comments at the time, I can freshly recall the frustration and isolation I felt.

An entry from January 2003:

S and I both took time off during the holidays and managed to eek out a few hours together without his mom.  We are struggling not to kill our relationship because we are caring for her.  For some couples this would not be so difficult, as they never talk anyway, but S and I have the kind of relationship that includes a lot of talk, and we cannot do it with her around all the time.  And the added complication is when we do have time to talk, we almost always turn to talking about her and where things are.  We disagree on her abilities and how to handle things regarding her.  Last Saturday night we had a big blow up about her.  I think the main disagreement was that he insists on including her in every conversation and activity even when it is obvious that she is not able to participate in the activity or follow the conversation.  It taxes her to try when this happens, and she gets worse.  When she says something that is wrong [Jim just called and is coming to pick her up as an example] he never corrects her.  So she builds more conversation on the wrong information and we go into lala land.  My experience is that you can gently correct her, and it will refocus her to something else, that she might get right.  If you let her continue into lala land the tales get bigger and bigger until they are outright lies.  And I mean lies.  She makes up some whoppers and they go on and on.  She does not understand that we know what she is saying is not true.  And when I say lie, I do not mean things like “Jim said”, it’s more like “When I climbed Mount Everest”.  Stories S has heard all his life and that I’ve heard for 26 years are suddenly different now and she is always the shining star that saved the day.  I know it is part of the disease, but that doesn’t mean I should have to sit and listen to it forever, paying rapt attention.  We did that in the beginning, but there are just not enough hours in the day.  Once again I am not advocating cutting her off or being mean about it, but gently leading her away from a subject she cannot handle truthfully.  She can have a 20 minute conversation out loud that never says anything and we cannot figure out what the seed beneath the layers is.  In the past, when she would start talking about something, if you listened closely, you could figure out what the common thread was that connects the disjointed sentences.  Now, the thread is gone and the disjointed sentences do not seem to relate to anything and of course she cannot tell you what she means.

She is having more wetting accidents and then takes the protective underwear off and hides them.  Then proceeds to go around with nothing on to protect from another accident.  Or she rips the lining out of the underwear out and flushes it.  Or pulls them down and then wets.    At least three times a week she is wetting the bed through the underwear.  Sometimes she tries to make the bed to hide the wet linens.

She is paranoid, thinking that people she sees are threats to her, saying things like ‘that Mexican kid (meaning my 10 year old niece) is going to hit her in the head and steal her purse.’  Blocking off doors with furniture, hiding hammers under the bed.

A list of other things?  Palming car keys and other small objects and hiding them, wiping her nose on clean towels as she tries to fold them, wiping her nose on other peoples dinner napkins then folding it and putting it back next to the plate, answering the TV remote thinking it is the telephone, hiding food in her clothes, closet and dresser drawers, screw driver in the freezer, full water glasses in the cabinets or freezer, moving her food all around the plate scraping the fork on the plate like fingernails on the chalk board,  eating tarter sauce, or salad dressings by itself  or spreading it on her dinner roll, always insisting that her blouse collar be turned up like it is freezing outside when it is summer….it’s the little things that drive you nuts.  You haven’t lived until you open the freezer and a glass of cold water dumps down the front of you………

Scott and I struggled under the weight of the responsibility for Belle’s physical and financial well being.    It became more difficult to include her in activities with my family due to fear she would say something inappropriate to my sister in law and my nieces, based on their dark skin color and Belle’s paranoia.  It became difficult to leave Belle alone in a room for any length of time, for a variety of reasons.  It was difficult to find family to sit with her.  It was just us.