Role Reversal

  This week I had the opportunity to be with care providers for an informal dementia training by the Alzheimer's Association.  I gave the activity portion of the training. 

  As the day unfolded and we got to know each other better, I was struck again with the difficult task children have when they need to take on the role of sharing in the care of a parent. So often, over the years, I have seen what a toll this takes and I am glad that there are ways activity pursuits can lighten the load a little.

  What seems to be a universal dilemma is taking on the role reversal of becoming the parent; needing to provide answers and direction.  For the majority of children being there to help is something they are very willing to do. That seldom seems to be the problem.. The difficulty comes from grieving the loss of the parent as they once were and all the resulting issues and feelings that come with the responsibilities in this new turn around. 

 Often, by the time it is realized that the parent can no longer function alone, the dementia has progressed far enough that there isn't even time for the child to think.  And although the parent may no longer be able to live independently, very often they resist and resent any help. 

 I remember a daughter I worked with at one time who was caring daily for her three year old grandchild and her mother living with dementia.  The care needed by the two was similar, guiding them through little tasks, giving directions and reminders. Even though she did not have many difficult behaviors to handle, the daughter talked about how much harder it was to care for her mother. As she put it "This is not the way it was meant to be. I always relied on her."

 So how can activites help?  Picture albums are often great places to start. Reminiscing can be cathartic for the child while a memory stimulant for the parent.  As the dementia progresses, even writing names and short captions on the pictures is helpful.  Knowing the history of what the parent did for employment or enjoyed as a pasttime can give clues to activity pursuits. If the person enjoyed cooking, let them sort through recipies or coupons. Or let them tear the lettuce for a salad while you are making dinner.  Make a template by tracing the plate, glass, and silverware you use onto a plastic placemat and let them set the table.  Let them wash the dishes that go into the dishwasher.  Create new memories.

  In our company, http://www.hippocampus-hq.com/, we have an activity program called the Brainy Day Activity Program.  In it are simplified activities for the person who liked nature or gardening, or working with numbers, or doing crosswords or jigsaw puzzles.

  The biggest thing that an activity can do is to provide choices. The best way to handle this is to give two choices within parameters of what you would like to happen. For example, "Would you like the blue towel or the white one when you get your bath?"  This way, you can still give them the respect of having some authority over decisions while still having the focus on what needs to be done. 

 Get support.  Read and reply to blogs. Contact the Alzheimer's Association in your area and even attend one of their support groups. Finding out how other children are coping may give you just the answer you need and it often helps to know you are not alone.   Mary Ann