Tuesday, April 26, 2011

Day One of Reahabilitation

Meagan is adjusting quickly to being at home. She is able to navigate safely from family room to bathroom and bedroom. There are still funny lapses. Daisy was hungry last night pretty late - needing her pre-bedtime snack. Meagan decided to feed her and I decided to let her. We keep the dog food in bins in a closet in the bathroom off the family room. Daisy's dish is elevated, hanging on a flower pot holder just outside the bathroom. Meagan walked past the dish (normally one would grab it on their way in to fill it) and into the darkened bathroom. I could hear the closet door open, heard some rustling of the bins, heard the cup we use to measure out the quantity of food hit the deck, and then heard silence for a while. Then, "honey, where's the light?". I helped her remember where the lights were and how they went on and off, showed her Daisy's dish, and we successfully teamed up to get her fed. I was proud of her initiative and she is clearly feeling more able and confident to try things. So I am really glad that today is the first day of rehab - to help continue to boost that confidence while augmenting with skill building.

We were fortunate to have found a service called Rehab Without Walls. So Meagan will have skilled therapists come into our home to work with her, instead of having to drive to outpatient therapy or be in a live-in facility for a period of time. The rehabilitation can be context specific, and since she is only able to do up to about 3 hours each day before being taxed, it makes sense to spend as much time at home to enjoy her family, dogs, friends and surroundings. Today we have the overall coordinator come to discuss goals and process, then the occupational and physical therapists. Tomorrow will be speech therapist and physical therapist and Thursday will be speech therapist and occupational therapist. I will be here to make sure she is comfortable with the new people and guide the whole process.

To get to this point though I had to spend several hours yesterday talking with our health insurance case manager, the rehab firm, faxing forms back and forth, getting signatures (Meagan was able to sign for herself and she was quite happy about it, even though it wasn't in her usual elegant hand) and being on hold and going through computerized phone answering trees. It was a good thing Meagan's sister Teri was here to visit, and then Bobbie came over to visit and plan how we'll get people into see Meagan using the Meagan's Faeries web tool. So Meagan had a lovely afternoon, even though she was aware I was stressed and busy.

We did see her oncologist yesterday, Dr. Kaplan and she was very happy to see him and get double hugs. He was reassuring and said in the short term we just had to let the brain calm down (inflammation) and he would help monitor medications and sodium levels and see us every 3rd day. So we see him again Thursday and then a couple times next week. She has her sodium level checked every three days. Yesterday her sodium was at 134, our goal number is 135, so she is within range, but we still have to keep up the high sodium diet for her. She happily munched on Ritz crackers with water and milk at the midnight and 6am sodium tablet popping, respectively.

She remains remarkably calm, anxiety free and positive. I do think it's a result of the stroke, not a contemplative change as a result of a significant incident. It is similar to what was described in the book, A Stroke of Insight, and through discussions I have had with others who have gone through this whom I met through the Melanoma Research Foundation Community chat board. I think the house could be burning down and she would be marveling at the colors! She is aware of the stress and work on me and expresses concern and doesn't want to be a burden. I keep reassuring her that it's ok, that even if it is work and stressful, it has to be done and she isn't in a position to do it for herself. Hopefully the rehab will build her to more independence quickly. So in the meantime, don't blame me for how she dresses! I'm helping her the best I can!

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