From Reenie

Jan. 17-20, 2014 From Reenie:

 

Alison was better than she was in December when I saw her last.  She was more alert, more responsive, and moved more (she moved her left leg and arm voluntarily, which was different from December).  She also was trying to shift her body in bed, although not successfully.  She can hold, and drink out of, her own cup.  She can feed herself with a spoon, although she gets tired easily. She is encouraged to sit in her wheelchair—working on holding her back and head up strengthens her muscles.

 

She didn’t yell out, and was not incoherent.  She still has trouble finding her words, but often with repeated questioning I could figure out what she wanted. Her new way of asking for something is to say “help me” and then we work to help her say what it is she wants (have something more to drink, move the pillow, get in her chair, move the curtain so she can see her roommate’s TV, watch more So You Think You Can Dance on my iPad, or help her figure out her words for what she is trying to say or remember…).

 

The staff at the new facility are very attentive, friendly, courteous, and responsive, and Alison seems to be getting good care, judging by what I saw.  The nurses and other staff come and go a lot, and are very sweet with Alison. It is an intimate surrounding and there is a LOT of hustle and bustle, patients and staff constantly moving about, a lot of activity, a lot for Alison to pay attention to –and be stimulated by (even trying to figure out conversations she hears in the hall).

 

She is getting speech and physical therapy (and they will start cognitive therapy soon).  The speech therapist said it is very important for people to be encouraging and upbeat when interacting with Alison, expressing confidence that she CAN do things (even if they are difficult).  I saw it myself.  When I would give her a pep talk, she would muster the energy and the will to do things.  She says she wants to get better but says she is afraid that she won’t.  So the encouragement is enormously helpful, as is focusing on concrete, small steps she can take so she doesn’t get overwhelmed (not surprisingly, she gets overwhelmed easily, thinking of the magnitude of her situation).

 

When Alison wants something she gets impatient (nothing new there!).  With repeated assurances that it will happen/get done, she understands and is willing to wait. It takes patience on our part to interact with Alison—waiting while she searches for the words she is trying to find, doing a version of “20 questions” to figure out what she wants when her words are too few or aren’t quite right, waiting for her to swallow her mouthful of food,…).

 

She was not in pain the whole time I was there.  Only a couple of times she briefly said her back hurt, and by moving her legs to simulate exercises for back pain, it helped.  She never asked for pain medication while I was there.  Once the nurse asked if she wanted her medications and Alison responded yes.  When the nurse brought it in, I asked what it was for, and she said pain.  I was surprised because I didn’t think Alison was in pain—when we asked Alison if she was in pain, she said no, so the nurse took away the medicine.  (Why Alison said yes, and what she thought she was saying yes to, or whether she was just saying yes automatically is not clear – still need to work on clearer communication and figuring out exactly what Alison wants and needs.)

 

Mary Pat and Dawn were there on the last day I was there.  It was a lot of fun mixing thickener with ginger ale (which made a volcano), moving Alison about in her chair, trying to figure out whether Alison wanted the cheese or pate that Andy had brought earlier, having Alison look at the ceiling to lift her head…. As Mary Pat said, together the three of us almost made one nurse. Alison and I were both very sad when I left, Alison cried and cried. I will be skyping and/or face timing with her soon.  (She likes that—so please try it, it’s a good way to keep in touch if you are too far away to visit.)

 

If you want to know about something I haven’t addressed, or haven’t thought to talk about, the best thing is to email me directly: webb@ucla.edu. Thanks for thinking of Alison and, especially, for visiting her!!