Wednesday, September 30, 2009

Wednesday September 30th

I had two incredible night angels again. They said Mare had a fairly good night. Although she had some pretty bad intestinal pain last night. The hospice nurse came out late last night just to make sure it wasnt something serious. We removed the feedings for a while to give her stomach a break. She woke up with quite the headache and after some, ativan, methadone and dilauted, she was comfortable and slept quite a bit. Carmen rubbed her feet to relax her and Eileen gave Sadie a bath for us.

Mary Rebar from the ALS association dropped by on Tuesday. We had a nice chat while mare was sleeping. She took a number of things that mare will not be using any more. The ALS association has been an incredible resource for us. Whatever we needed, they would do their best to get so we did not have to purchase it. In taking those things away, it was another step in the process of this disease. Another reminder that this disease does not get better. It was also sad to think that those items are needed by another family. Another family has to travel the path that ALL of us have been traveling. We talked about the positive research strides that are being made. Unfortunately, it will not offer much hope for those with the disease now, but for those who might get the disease 10 years from now, HOPE lives.

Grandpa and Kay came back on Tuesday. I had three dental appointments in two days and they were there to look after mare. They also were here today to give me a break to play some tennis in the afternoon. Im glad Mare hung on while they were away. They have invested a lot of emotions, time and energy helping us take care of Mare. I know they want to be close when Mare takes a walk on the other side. I want her to be set free. Set free to run, walk and not be trapped in that body. If she goes a while without ativan, she gets that trapped in her body feeling. We are considering upping her ativan dosage. She still is on a very low dose compared to what she could have. She seemed to be open to the idea. We will talk to her nurse tomorrow about it.

We had a real nice visit from Mrs. Lewis, brians leadership teacher. She is an outstanding educator. Good teachers are all about building relationships. She does this with ease with her students who respect her a great deal. I'm so glad she is there at the school to be there for my son.
I want to apologize to all those who have called or emailed but have not got a response from me. I am mentally tired and dont have the energy to respond to all my wonderful support team. Please now i am strengthened by each contact from you.
the days are all melding into the same routine. We try to keep her comfortable. We watch. Another ALS care giver referred to it as a death watch. Hard to write those words but that is where we are at. We wait for her ordeal to be over for her. We wait together, not wanting to lose our precious mare. our brave, courageous Mare. I have been told by so many that Mare's struggle has made them appreciate life all the more. They are better because they have known her. That will be her legacy. In death, she will have taught us all how to live.
May she have a restful and peaceful sleep.

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