March 9, 2017: Day +109

Tonight I had something happened that made me count the days again.  It was about 8:00 p.m. and I had just entered the elevator to go down to the car to get a salad that I had intended to eat for dinner. The elevator door was closing and a woman stepped around the corner of the hallway and was heading to the elevator.  I quickly pushed the button to open the door to wait for her.  She thanked me and said I must have realized how exhausted she was.  She told me that her daughter had been in the hospital for 22 days and she had been with her everyday.  He daughter had been on a ventilator like Doug, because of having acute respiratory distress, just like Doug.  I told her I completely understood and told her I was not sure how many days it had been for Doug.  So that is what made me think to count the days again.  We walked to our cars. She told me her daughter is only 38 and she has two kids.  The good news is that she seems to be recovering well. Over the last few days I have heard so many stories from so many people who are struggling with illness and the costs involved with being ill. Just at the time people are dealing with the most difficult challenges in their lives, the cost of health care can be overwhelming and stressful.  Everyone is always told to think positive, meditate and pray.  A person should be calm we are told.  But being sick and having a sick loved one is exhausting and worrying about money in the process quadruples the worry.  You would think that in a country as rich as our ours, that the cost of health care would not be so overwhelming.  But almost everyone I know who had dealt with many days of illness has had to deal with the loss of income from their jobs and their jobs being threatened along with the high costs of health care.

And so today it has bee 127 days since we left for Mexico to begin Doug's stem cell treatment.  It has been 109 days since Doug received his stem cell transplant. It has been 89 days since he went into the hospital. The days are still passing. We are not done yet.

Yesterday several people, from the social worker, to the transition coordinator, to the doctor, gave me suggestions for getting help with the cost of caring for Doug.  The transition coordinator told me that Doug would need 24 hour a day care.  Then later she said I could get help from Home Health.  I guess she does not understand that Home Health will only come out 3 days a week for OT, PT and nursing and only long enough for the therapy.  The doctor told me that I might want to consider getting a financial separation from Doug, so that we won't loose all our resources.  The social work told me that I should apply to the veteran's association to see if they could help with aide and dependent care.

Meantime, the therapists are telling me all the equipment I will need to buy and the renovations that will need to have done to the house for Doug to come home. No one thinks about the impact of all this on us. No one thinks about all the work they have given me to do to prepare.  No one really thinks about the cost.

We have more resources than many, but no enough resources.  We have always had insurance and we have saved and tried to prepare our house anticipating the day it would need to be assessable. And yet we are reminded that more people have to declare bankruptcy because of medical bills than about any other reason.  Do you think that this country needs to work on health care reform? My answer is yes.

While we are counting the days for Doug to come home,  I also have a certain amount of trepidation of whether I will be ready.  Will I be able to care for him? They took some wind out of my sails yesterday.  They instilled some fear.

But driving myself home, in the rain and the dark, I reminded myself that every hospital we have been at so far, has called for me to take on some big fights.  At St. Al's, I had to fight to protect him from infection and to keep the conversations about dying out of Doug's room.  I had to stop them from doing a tracheotomy and a gastric tube. And at Vibra I had to fight them and stop them from doing a tracheotomy and a gastric tube.  The fight right now I think is for them to keep their focus on rehabilitation and not on accommodation.  I can figure out how to accommodate him.  And to keep him here until he has the skills to come home.

How will I care for Doug when he comes home?  I don't know yet.  But I guess I will figure that out. I don't know how many more days I have to figure it out. But I know I will have at least 2 weeks. Let us pray for more miracles in these 2 weeks.

And so we pray:

God of our Days and God of our Nights, as we count these days, help us to see the light and the dark. Help us not to be afraid of the darkness.  God of light, enlighten us and illumine the way.  Give us hope in the darkness.  And Lord be with those who govern our nation.  Open our eyes to see the needs of others.   And in seeing those needs, help us to reach out.  Help us work to create a system that relieves our fears and supports the people of this nation that we might be healthy and confident that the care we need will be there, when we need it, for all us. In your name we ask it.  Amen