Tuesday, July 15, 2014

Growing Frustrations

As I mentioned yesterday, Lyn is having a difficult time at day hab lately.  Her frustrations have been increasing over the past few months and they cannot all be placed into the category of just resulting from the changes happening in her brain.

For the past year, Lyn's ISP has stated that she was to have time and assistance at day hab each week in which she would work on some sight word workbooks.  She and a staff member are to go to a quiet area where they will work one-on-one for a period of time.  This has not been happening.  Either the staff are not directing her to her workbooks regularly or they are directing her to sit in the middle of the common room where all the activity happens and tell her to do a couple of pages while they go off to tend to other things.  Lyn's cognitive capabilities at this point make it impossible for her to do focused work in a space with lots of activity or for her to do the work independently.

Also for the past year, Lyn's ISP has stated that at least once a week, Lyn will help feed the homeless at a local soup kitchen.  She likes helping out and feels valued when someone asks for her by name.  As with the workbooks, however, she cannot make even a sandwich without assistance and has found herself in tears of frustration after being left unattended in the kitchen.  Despite this, she still wants to go and help.  Unfortunately, only one or two of the staff members want to go and the number of weeks in which she is not able to go is increasing.

It is summer and a number of the clients like to go swimming.  Lyn does not any longer.  She doesn't want to get sun burnt and she finds the activity at the pool too chaotic.  At least one of the staff members will insist that Lyn go or complain that Lyn is not cooperating if she refuses and chooses to stay behind.  This staff member has stated on more that one occasion "When I ask her if she says she wants to go, she says "Yes"."  When this staff member is reminded that Lyn will tell you what she thinks you want to hear and that her desire to go or not go can change in a moment, the staff member is dismissive of these considerations.

It wasn't always like this.  Lyn's been going to day hab a couple of years now.  When she started, she was one of four clients.  The staff have stressed repeatedly that they're there to accommodate the desires of the clients, that the clients get to decide if and where they go.  They have stated that they have the resources to provide one on one supervision if that is best for any of their clients and that they will make that accommodation for Lyn "when the time comes."

Today, the center has at least 15 clients and several more are about to join.  At least one of the client's receives one on one supervision.  New staff have been added as well.  While this is all good for the center's business, this is not good for Lyn because she now feels like they're forgetting her.

Her brain's changes are also a factor here.  She's unable to handle the increased activity around her well.  She's less resilient to stress than she used to be and she's more easily moving to an anxious state.  She may be "at that time" when she needs direct one on one supervision at day hab.  Her brain is changing faster than the staff are accommodating her.

Mom and Lyn's case manager are currently having to actively advocate for Lyn.  This is currently a work in progress and we'll have more to report soon, I believe.

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