Creating Moments of Joy - Socially Engaged

Today's plans did not go, well, as planned. It was too cold (well, not really but it felt like it) to work outside, planting flowers and tomatoes as I thought I would do.  It was too cold (well, I could have bundled up in a heavy sweatshirt and my knitted headband) to ride around the yard on the mower.  Instead, I piddled around on the computer, caught up on my Online Bible Study, and now am reading more of Creating Moments of Joy, the book my friend Karen recommended to help us on our journey with Mom through dementia.

A chapter which caught my eye was titled "Socially Engaged."  Now this is true - Mom does like to talk, and she doesn't like to listen at all, but since Dad died in 2009, she has become more of a loner. She likes to read.  She likes being in her house.  She likes to be with her things.  We have attributed this desire to be alone to "Mom being Mom" and not loving us or wanting to be with us or whatever negative attribute we can assign to this trait.  But even before Dad died, she would often stay at home by herself instead of going with him to Cruise Ins or to Engine Shows or to other events.  Even though she liked to talk non-stop, she really was a homebody.

When she was at Smithville-Western, she hesitated to join others in the dining room.  She preferred to stay by herself instead of participating in the activities planned for the residents.  She would visit with others IN HER ROOM, and she would pay attention to the activities going on in the hallway, noises that came from other rooms (similar to peeking out the windows at the neighbors), and the people who came to visit, but she never wanted to participate.  We, once again, would attribute that to her being anti-social, to being contrary, to whatever other negative trait we could assign her 'just being Mom."

Now at Chapel Hill the same thing has happened.  She is isolating herself from others.  She is dining more frequently in her room.  She declined going to the chapel for Palm Sunday services with Greta and Kent.  She didn't want to be pushed over to the sunroom for a change of scenery.  She just wanted to stay in her room, eat in her room, and watch others go by in the hallway.  "Just being Mom" again?  Maybe. But this chapter shed some light on the issue.

From research it is learned that Alzheimers patients sometimes cannot handle large spaces, lots of people, and noise, especially if it is not the 'norm' for them.  When they are taken out of their rooms, which are small and quiet, for the most part, and put  into a place with a lot of commotion, then they sink into a sort of blackness that causes them to panic inside.  They want to go back to where they feel safe.  

That makes sense. Mom has spent so much time in recent years in her house.  She moved from her chair in the living room, to the kitchen, to the dining room to sit at the table, to the bathroom, and back to her chair.  It may sound like a large distance, but really walking all of that at once would be a circular 50 steps or fewer.  Mom kept the drapes drawn and the blinds closed.  Why?  Because she was afraid of people, specifically the neighbors across the street, seeing into her house and knowing she was there alone (like they didn't already know that?).  She thought people would drive by and stop and see her in there.  She expected them to exit their cars, cross the yard, tromp through the bushes, and stand on tiptoe to peer in and see what she was doing.  Despite the reasoning, the reality is that she didn't move around much, she functioned in quiet and darkness, and she wasn't used to many people surrounding her.

From what she has shared with us, there are many wheelchairs in the dining room.  There is noise of people clinking their glasses and dishes and silverware.  There is noise from chewing and swallowing.  Conversation happens, but whether it is normal dialogue or a monologue hasn't been determined.  There is light from the open windows which overlook the lake and the grounds.  This is very different than the 'norm' for her, and she doesn't like it.  It is easier for her, and more like normal, to eat in her room.

We noticed on our last visit that the drapes in her room were closed.  I commented on that and concluded that this is what Mom was used to.  Closed drapes. Darkened rooms.  She likes that.  It makes her feel at home.   

She also sat in her room and watched every person who walked by. Often she would wave. Sometimes the person would slow and say hello.  Occasionally one would enter the room for a bit of conversation.  Once again this is what she is used to. It is similar to her watching the traffic outside the window or peeking through the blinds to see what the neighbors across the street, Mr. Rose, or Brian and Melanie were doing. 

One more thing has fallen into place. With the diagnosis of dementia, and the nurse's affirmation that Mom was suffering from severe dementia, our interpretation of Mom's actions can be easier.  Mom isn't just 'being Mom' although sometimes the amount of time that Mom has been doing some of the things makes us wonder just when the disease began to attack her mind.

What this does do, however, is help us understand her actions a little better and be able to respond in ways to help her.  By not insisting that she eat in the dining room, we can avoid upsetting her by agreeing that this is a good idea to enjoy her salad or her wiener, no bun, with mustard in her room.  Maybe the day will come that she decides to join the others in the dining room for lunch, but it has to be her decision, not ours.  Whatever makes her comfortable is what is important.   

We need to remember that this is a disease. It is affecting her mind and her actions.  Our goal is to make her comfortable,  to feel safe, and to enjoy her life as it is.  We can't try to do anything more---or less than that.