Hello, I am rejoining the world after two months commuting everyday to be with Bob who was in UCSF hospital following a two day back surgery that turned into a week in ICU and more hospital time. I spent September commuting to Stanford for a three week visit to Stanford hospital as Bob underwent and recovered from heart surgery. That is 7 months of being the partner, support, medical advocate, lover, friend, organizer, medical expert.
None of this was in the wedding vows when we began this adventure 49 years ago.
Here is what I have learned -
Resilience - you must have a way to get knocked down and pop back up.
Be aware of the medical needs of your loved one in the hospital.
Always have an advocate with the patient.
WRITE every doctor’s name, every specialist’s name, every medical change, every procedure, every test, every conversation with medical staff down. I keep a notebook that becomes our “Bible” of information for me when staff starts talking about tests or procedures. I have facts to use as I question or provide evidence of what has already occurred.
And have your Gift Box complete and with you.
Be ready for constantly restating your medical information.
All medical personnel ask the same questions, few have time or energy to read the charts.
Did you know that medical charts are not inter-changeable with hospitals? UCSF cannot share with Stanford, Stanford can not share with John Muir - you get the picture. The electronic medical records that were to help us all with all medical staffs sharing information does not exist. You have to have someone who is not on meds able to confirm, question and write down all information the medical staff says.
We all know that our loved one will recuperate more quickly and happily at home. However,
there are solid reasons to remain in the hospital. Just be ready for the medical personnel asking the same questions, rarely looking in your chart to find your advance directive you gave them last month. They don’t have time to read what happened yesterday. YOU best be prepared. The Last Gift Box gets you to think and plan outside your comfort zone. It guides you as you make decisions about death and dying.
Happily, I can report Bob is home, rehabbing for months to come. We are under the same roof, a joy. We are blessed our children are supportive and close. And our clan of friends is broad and available. I imagine those alone. The anguish, the fear, the loneliness. Think of that as you walk though hospitals and see people. My insight is we all need to reach out. The connections we make are not just to help us survive but to support others in their difficult times. It’s not hard. Smile. Say hello. Nod.
We are all in this together. Let’s act like it.