Creating Moments of Joy along the Alzheimer's Journey

My friend Karen is a hospice worker in Alaska.  She is very familiar with patients who suffer from both dementia and Alzheimer's.  Recently she recommended this book by Jolene Brackey to me, and I ordered it for my Kindle.

The contents of the book are divided into sections each with individual small chapters.  The format is a good one for me because I can peruse the titles and select the readings that I think are pertinent for our situation.  Since the tone is conversational, the reading is easy to comprehend and doesn't feel like a 'preaching' or an 'informational' narrative which might be hard to follow.  Instead I find that I am nodding with the author and thinking about similar situations that we have experienced.

The section "Challenging Moments" has been the most helpful so far, mainly because we have been experiencing so many of them with Mom.  Some of them are AHA moments since the type of behavior described has been evident for quite some time; she just hadn't been diagnosed officially and it was frustrating for us to witness the actions, hear the accusations, and be hurt emotionally in the process.

"Blame It on Something Else" was one of those AHA moments.  A section in this chapter was about forgetting appointments.  The scenario was that the daughter/son called the parent several times to remind him/her of an appointment, leaving written notes also, then the parent isn't ready to go or insists that he/she had never been told about the appointment.  This has happened with Mom many times.  It isn't her fault; she just can't remember these things anymore, no matter how many times she was reminded or whether it was written somewhere or not.  She just can't remember.  It's part of the disease.  The reaction from us, as caregivers, shouldn't be one of anger or frustration because the parent doesn't understand the reason for the anger, and it just causes the parent to become more confused or to withdraw because she thinks she has done something wrong.  Instead the best thing to do is to say something like "I must have forgot to tell you, but we can go for ice cream after if you like."  Then the mind of the parent focuses on the ice cream, a special treat, and the frustration level is lowered.

Another good chapter for me was one titled "You Are Wrong..They Are Right."  This one explains so much about many years of communicating with Mom.  We know that she can insist that she is right about EVERYTHING and is never wrong about ANYTHING.  Arguing with her was pointless, and frustrating, and usually ended in anger and hurt feelings  and leaving the house in tears (not her.  Us.)  If she had been diagnosed with dementia earlier (in fact, YEARS earlier) the frustration would have lessened because we would have known how to respond.  Instead of arguing, we should have just agreed and changed the subject.   Or just changed the subject.  There is no point in arguing at this stage of the game.  Who cares really if Grandma told Mom that she needed to leave my house because I was throwing a fit and yelling at everyone when they were helping me move from Monticello to Francesville?  I know that I had moved from Monticello to Francesville before they even visited me;  after all the tornado had ripped through my apartment in April, I moved into the house in Francesville in May, and they didn't visit me until mid-summer because I was in summer school at Purdue.  There was no helping me move.  But it is pointless to argue about it.  She remembers it how she wants to remember it, and really, no one cares.  That was 43 years ago.

The chapter titled "Swearing" rang a bell also.  Three years ago when Mom was so mad at me and Gary when we visited just before Christmas, one thing that we noticed was how much she was swearing.  We commented on the drive home that using four-letter words was very uncharacteristic for her.   At the retirement home Mom often refers to some of the nurses as having  (lowering her voice to a whisper) "Fat asses" and that particular example was used in the chapter.  This could also be the reason why Mom got herself into trouble for calling a Hispanic nurse's aide and a black nurse's aide by derogatory terms.  Their sense of proper and discreet language is gone and there are no filters.

This book is a good one because the situations described are so similar to ones that we are experiencing with Mom.  The suggestions for our responses are spot on as well.  Some of the things Gary and I have already practiced with her, so it was good to know that we are on target with our interactions with her.

Alzheimer's and dementia are tough diseases for the patient and for the family.  I am thankful for my friend, Karen, who knew just what I needed to read to help me through this journey.