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

Chapter Nineteen

When Belle’s problems first began to appear, Scott could be very upset by any manner of joke that was made or any laughter that occurred at the expense of his mother. Since so much of what happens can be funny, we tended to disagree on this topic.  He was very protective and saw jokes and laughter at things she did or said as a sign of disrespect Belle.  I saw the laughter as a way to release tension and stress, which we had in abundance.  If we did not release some of the stress, we would crumble into tiny pieces and blow away. The laughter was not a personal affront and I knew her actions were not things she could control.  We would display a united front in her presence and then argue about the issue outside of her earshot.  I recall telling Scott my face hurt from fake smiling after one extended visit with Belle on one of her bad days.

As time passed and more issues appeared, laughter and jokes were the only thing that seemed to keep us breathing.  If the matter was minor and Belle’s sprits high, we could joke in her presence and she would join in the laughter whether she understood it or not.  As I’ve stated earlier, she was rarely belligerent, as many Alzheimer’s suffers are.   We were careful however, to consider her feelings and mood, and tried to not display the dismay we often felt.  She was good at reading people, especially in the beginning, and knew if something was wrong, especially with Scott.   We had continued pinching each other to ‘feel my pain’ although we rarely spoke the words.  It was understood that something had happened that caused frustration and a pinch was the signal all would be okay.   We also incorporated some of her comments and regular sayings into our conversation.  We were often ‘just crazy’, had ‘tired eyes’, already had our lipstick on or suffered from a malady of blue eyebrows.

My co-workers were familiar with the situation, mainly due to the many times I had an emergency run when Scott couldn’t reach her by phone, and I told some of them the various stories or situations we were dealing with.  We also frequently spoke with Scott’s siblings and other relatives that would call our house and ask for an update on how Belle was doing after having spoken with her on the phone.  Talking about it seemed to help relieve some of the stress. We also attended group couples counseling with four other couples.  Although we were the only couple in the midst of caring for a disabled parent, we all needed ‘couples’ assistance in one form or other.  We attended this group for about a year. We learned better listening skills, along with confirming that, although this situation was difficult, we were committed to each other.

It is unfortunate to say, but in the house next door, Susan and her husband were not coping with the stress of the situation and did not seek outside assistance as we did.  Belle needed more and more assistance, and Susan, when she agreed to move in had really not realized what exactly assisting Belle would entail as Belle declined.  Scott and Susan disagreed on certain aspects of Belle’s needs, and this discord, along with the outside opinions of siblings and relatives, began to erode their relationship.