Leaving the dark, quiet tranquility of the hospice house this morning, I venture outside into the blazing sunshine. Birds are singing the sky is the bluest of blue; hard to imagine there is anything wrong in the world on the day like this.
After an 8 am meeting today with the Hospice Ethics Committee, a kind and compassionate group of doctors, nurses, chaplains, social workers and ,of course, Morgan, our dearly loved hospice case manager, I walked back to Neil's room. He was sleeping peacefully. I loaded the CD player with his favorite operas, kissed him and came home to wait for hospice to pick up his hospital bed, oxygen tank etc.
I met with the ethics committee because of my request for palliative sedation for Neil. This is something hospice takes very seriously, but Joel and Marla and I feel, this is in his best interest. It is what I would want for myself, if this were me.. He mentioned several months ago that he would want sedation should he become mentally incapciated. . He has fewer and fewer moments of lucidity now. A man of intelligence, wit and humor, he would not want to live this way. The ethics committee is must understandable tread carefully and they are uncomfortable with unsing palliative sedation. It is akin to euthanasia because it renders one unconscious and issues of legality arise. I am comfortable with the next best thing they can offer... a morphine drip that can be increased as needed and possibly phenobarbital if there is further distress or discomfort.
What I am seeking is an end to his mental/psychic anguish and physical pain. Food and drink will no longer be required, and he will sleep most of the time. I will continue to sleep on the sofa bed in his room to monitor him and be there should he wake up.
Neil was relieved when he thought he would die of a heart attack. He dreaded suffering the ravages of ALS. The thought of not being able to communicate would be the ultimate blow to him, a communicator, a talker, a laugher, a story teller.
I am soul weary. We have been sitting shiva together for nearly 4 months.. I think he rather enjoyed much of it. His 68th birthday was just 5 wks ago. He wanted a celebration, but without a cake or candles....just 8 friends who would come and make him laugh. And that they did with fun and flair.. As we ate pie and ice cream we laughed at the costumes and the jokes. . As one guest said, "The love in the room was palpable." The pictures are on facebook, just type in Rudin Family Giggle Fund to view them.
We have had an amazing summer in Sarasota. It was a gift, a time filled with incredible sweetness and tenderness. Visitors from in and out of town, our very own milkshake and mandel bread brigade. When Neil mentioned a food he was craving.. ie beef stew, steak,chicken soup with matzah balls, before we knew it, it appeared at our door.
Neil said he was lucky because he experienced love. He gave and received it generously. He often said that the 12 years after his heart attack (which he called his first death) were the most gratifying years of his life. During that time he saw Joel and Marla marry, he witnessed the birth of 4 beautiful grandchildren, and he engaged in meaningful volunteer work. Also during that time, we moved to sarasota and met an interesting array of people. Neil formed a men's laughing/discussion group that met every Friday, he published a book and started a charitable fund for the children of hospice
It has been a good life, a sweet life ,although too short. what he lost in quatity, he made up for in quality.
As I write I think of the thousands of others who suffer with illness. Many who do it with less love/support
than we have had. My heart goes out to them.
As we traveled this ALS journey, we have met amazing people and deepened friendships. We have been the reecipents of loving kindness from doctors, nurses, health care workers. There are people who I know are uncomfortable being around sickness, but who still came because they love Neil and were able to put their own discomfort aside to comfort him. We had so many more offers to visit than we could possibly accept,but are grateful for them nonetheless. I will forever be grateful to hospice for taking such good care of us.
I enter our our condo, a home now devoid of his precense, yet filled wtih it. I see him everywhere and it fills and comforts me.
What an impact he has had on me. He has been my moral compass. My guide into the world of Yiddish/Yiddishkeit, menschood. These gifts I will take with me where ever I go.
cheryl
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