Everyday is a new normal. Wednesday both 911 and hospice were here when
Neil's catheter backed up and caused him much pain. Hospice finally got here after a two hour wait. (They are not 911, they reminded me and the nurse was with other patients).
When the nurse got here, she changed the cath (for the 3rd time.. a painful procedure)
His body seems to be rejecting it and he may also have another infection
Neil has been so upbeat until this week. It has been 7 days since he has been able to get out of bed. His heart is very weak; getting out of bed even with the hoyer zaps his strength. A week ago today, we went to his favorite restaurant, but had to come back home before ordering, because he became so ill.
My dear friend Marcella lent me a set of lovely Buddist tapes by Joan Halifax on "Being with Dying". The tapes are comforting/balancing/soothing/realistic They talk about death as liberation, a path to freedom from suffering, despite the pain of leaving all you love and know behind. They speak of the inevitibility of death for all of us, which we well know deep in the recesses of our mind.
For my much loved and adored Neil to be liberated from the pain of not being able to move, from the sorrow of not being able to do anything for himself and for or the sadness of not being able to leave his bed and being confined to the bedroom death would be liberating The fact that he has been able to remain so upbeat until now is a testement to his strong spirit and feistiness.
Delores, our capable health care worker says. "I will always think of Neil, not as a sick person, but as a gentle man with a huge heart.If anyone has a right to throw in the towel, he does, but he fights and tries to take care of others despite his own illness.
As I help him, he tries to help me help him. But every movement exhausts him. He is an amazing man, a man of kindness and great sensitivity. It is an honor for me to serve him in this capacity, an honor to be in his presence. He makes it easy for me to do what I love to do."
Delores is our CNA and has become part of our family. She has won the heart of our grandsons. When Zack calls us, then he asks to speak to Delores. She has a winning way with children. He taught he rummy cube and she was wowed by Ben's songs and magic tricks. When Marla and Mike left for Buffalo, they bought her gifts, one of which was a large coffee mug that said "You are one person in the world, but the world to one person."
Neil waits each day for her arrival and trusts her to meet his needs. She reminds me to take a nap and to take care of myself. Delores is part black, part native American and has much wisdom. She was a medic in the army. The VA has helped her to find a job and an apartment and fate/divine intervention brought her to us. May she be blessed as she has blessed us.
Cheryl
