Thursday, June 19, 2014

Scheduling Her Day

Lyn's decline seems to have picked up a bit recently.

She definitely struggles to remember the names of people.  If she sees you daily, she has a good chance of getting your name right.  She cannot remember my youngest's name most days any more and she works hard to pull out my eldest's name. Some days, she's not even sure of their gender and just refers to them as "the kids."

As her disease progresses, we're finding that she needs more information about what is scheduled for the day.  She also needs time to process it in a quiet setting.  This need is having an impact on her daily experiences at day hab.  At day hab, she is supposed to have a schedule established for the week.  No day is to be a "roll with it" or a "let's see what happens" or an unstructured day for her because she cannot cope with spontaneity and will become resistant.  The need to know what is going on in advance is so critical for a successful day for Lyn that it has been written into her ISP.

When she has a schedule, she can look at it and Mom or the staff can read it to her.  She is assured that what is written down is what will happen and she can think about the day's activities in advance.  If the day's activity is a friendly bowling game, she'll bring her ball and shoes.  If she has no schedule to refer to, she has no idea what is going to happen.  She won't know that bowling is scheduled and won't bring her ball and shoes.  If she doesn't have them, she refuses to go because she refuses to use rental equipment.  (Totally understandable, really.)  If she has no schedule to refer to, she may be confused when the day's activity is announced.  She may not understand what is about to happen.  The staff may be trying to get everyone ready to go and Lyn may not get the additional explanation or memory prompts she needs.  If this happens, she refuses to go.

Lyn's refusal to go is actually pretty simple to understand when you consider what is happening from her perspective.  She's confused.  She doesn't know where they are going or what they are doing.  She doesn't know when to anticipate being back.  She feels unprepared and out of concern for her own safety, she decides that staying at day hab with one staff member is less risky than venturing out with the group.

This all came to a head earlier this week.  Mom went to pick Lyn up at day hab and one of the staff decided to talk to Mom about how Lyn is not participating in the day's activities.  Mom pointed out the lack of a schedule and how each incident of resistance can be traced very quickly back to the lack of a schedule.  Mom raised the issue with Lyn's team manager who has voiced support for the need of a weekly schedule.  Mom has also reminded the staff at day hab that Lyn's brain is changing and there needs to be understanding and flexibility around Lyn's care.

As of yesterday afternoon, a schedule was written for the rest of the week and a new one for next week will be ready today.

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