March 8, 2017: Day +108

It is time to put my boots back on, strap on my back pack and start up the trail again, for a storm is brewing.  Today we had our family meeting at the Rehabilitation hospital.  I requested it when the discharge date was set and we still did not know what their goals for discharge were.  I tried to be positive about the meeting and not be concerned.  Unfortunately that did not last long.

The first words out of the transition person's mouth was that Doug was going to need 24 hour a day care.  Then the PT preceded to tell me that Doug required maximum assistance to transfer from the bed to the chair and that he would need a new large electric wheelchair.  The OT said that Doug would need an adapter for our bathtub in the guest room with a special chair that Doug can sit in and then slide across the tub for a shower. The dietitian then told us about the diet that I had told them that Doug needed when he entered the facility. She did not seem to know the diet came from us. I was not happy.

Everything was about adapting our home and not about making Doug well.  I told them that we did not come to this facility to learn how to adapt our home we came to get Doug on his feet again for him to be independent.  There is no way that I can care for Doug by myself 24 hours a day. They have a whole team of people that changes every 12 hours. On the way out the social worker told me I had done a good job of standing up to the team and making our needs known.  I felt tired.

Later tonight the doctor came to see us.  He was not able to come to the meeting because he was not available earlier today.  I told him I was disappointed in the meeting.  It seemed that a date is picked to leave instead of goals to be obtained.  I also told him that I thought goals should be established with the family and not developed independently by the therapist.  I still don't know what the goals are I only know what they are working on them.  The doctor agreed with me.  He said he understood. He said he would have to make a case for Doug to stay loonger with the insurance.  He did not know how much time we would get, but he would do his best.  Bottom line he understood why I did not think Doug would be ready to come home until he can sit by himself, stand and pivot to change chairs. The OT would like him to dress himself. That would be great, but I think that will come too as his core gets stronger and he can sit by himself. The doctor will be meeting with the team in the morning and they will be establishing new goals.  He will get back to us on how everything went. Doug is more worried now about not going home.  He does not seem to understand what would be required of me to care for him by myself or the cost of hiring a full-time caregiver.

There were many twist and turns in our uphill climb.  But we have come far enough for one day.  It is time to rest.

Let us pray:

God of Truth and Light, guide our path as we climb this difficult path.  Help us to come to understanding  with our caregivers in finding the right therapies for Doug.  Give us enough time in rehabilitation for Doug to heal and to allow him to become independent.  Give us strength and courage to meet each new day with hope and determination. Encourage us to trust in our goals and in reaching our final destination.  That destination of living fully, walking boldly and serving your people.  Amen