Monday’s Musing – What’s in a Word?

Behavior

When I first started learning about Alzheimer’s disease, I read about the “behaviors” by people experiencing Alzheimer’s.  I read about behavioral changes that often co-exist with the insidious and progressive loss of memory. As the disease progresses, people with Alzheimer’s disease may experience anxiety, agitation, delusions, outbursts – both physical and verbal, and the list goes on.  I remember looking at my mom and wondering, what will she be like? How will Alzheimer’s change the mother that I’ve known and loved all my life? I think I was mostly worried that she would become mean and eventually hate or distrust me.

My mom has serious bouts of agitation, gets scared, and often deals with her anxiety by pacing the halls of Conifer House – for hours on end.  Before she broke her hip my mom used her walker (when she remembered to use it) and now moves around in her wheelchair propelling herself forward, mostly using her feet.  We at first tried several different medications to deal with the agitation but gave that up pretty quickly due to the nasty side effects.  Her doctor also gently reminded me that there is no cure for Alzheimer’s.

We’ve been really, really lucky though with my mom.  If anything, she has become more loving and sensitive to the feelings of those around her as the disease progresses.  She is constantly on the lookout for caregivers, reaching out to them, making eye contact and hoping for a warm hand or hug. She loves being fussed over and several of the caregivers, when they have a few extra minutes, will braid her hair.

I’ve learned it’s much better to avoid unnecessarily medicating someone if there are less intrusive ways to address a presenting issue or “behavior.”  In fact, medication should never be the first consideration when developing individualized care plans for people with dementia!

With my mom, my sadness is that in losing the ability to self-initiate activities, she has become lost.  She doesn’t have a purpose in life anymore, doesn’t feel needed.  I see her daily trying to “get somewhere,” but I don’t know where she thinks she is going.  She used to love to cook, sew, knit, go camping, shop at thrift stores and fuss over  her daughters.  Now what does she have to look forward to every day?  She wants to be helpful, yet it’s difficult keeping her attention.  I am always on the look out for the perfect activity to engage her or catch her interest.  Since she was never a “crafty” person, my mom is much more content to watch the activities of others around her than participate herself.

I’m starting to learn that if my mom is happy in the moment with cookies and music, watching other residents take part in an activity, that is a successful afternoon!