Last Sunday, after 5 weeks of steady decline, Peter decided to stop all treatment. Hospice is helping us as we care for him here at home. They delivered a hospital bed and all manner of things like a wheelchair, oxygen, etc. Heidi and Ron rearranged our bedroom and we put the hospital bed in the room so Peter could be close by.
Sometime back Heidi scheduled a college tour with Ysanne and at my urging they reluctantly left on the 5 day trip on Thursday morning. Ron left for a 2 week job in New York City although he also had misgivings.
Although each day of this week Peter had gotten a little weaker, he was still able to take a shower and dress with my assistance and even walked to his office to have breakfast, the only meal of the day since eating has become a chore. I thought his decline would be gradual and I knew that friends and Hospice would help me while everyone was gone. But then things suddenly changed.
Last night, after dozing off, I woke up at about one because Peter's breathing was belabored. He had 105.5 degrees F fever. Some of that might have been due to the fact that he was covered with a duvet but at any rate, the fever was dangerously high. Unable to turn him to administer the suppositories Hospice had given me for such an occurrence, I dissolved 2 Tylenol tablets and thankfully Peter was still cognitive enough to swallow them with some water. It took 2 anxious hours for temperatures to return to normal.
Hospice gave me a kit with emergency medicines and talked me through various scenarios, so I also gave Peter drops for anxiety because he was so agitated. It was a long and anxious night. At 6:30 I decided to call Hospice to ask for help since the bed was soaked and I was not able to change the sheets on my own. Plus I needed guidance from a professional. Because of some miscommunication and after another call a nurse finally showed up at 8:30. Together we got Peter comfortable. She confirmed what I believed was happening, that Peter was transitioning. She also told me about signs of pain since Peter can no longer communicate verbally. Fast and heavy breathing, furrowing of the brow, drawing up of the legs for instance, all of which Peter was doing during the night, are signs. Melissa got in contact with the doctor and she set up a schedule for morphine to be administered every four hours, more often if needed.
I called Heidi this morning. She and Ysanne were in Bennington, VT and they are coming back immediately as is Ron, who turned around after being halfway to New York. Ciara came at 9. I am grateful that we all will be together to support Peter and each other at this time.
In closing I would like to share with you what Heidi said to her father after he made the decision to stop treatment.
When you are a fetus and you are getting ready to be birthed, you have to have a lot of strength and courage to go through the process of being born. Thankfully you forget.
But when you are going through the process of dying it is very different. You are acutely aware. It is the last task you must complete. You have to be very brave to do this. It is your last act of courage.
P.S. Today would have been Mark's 51st birthday.
3 comments:
Dearest Jutta,
I am so sorry to read that Peter's health continues to decline, especially since after we spoke on the phone Saturday, things seemed to be manageable for the time being. He is surrounded by love. I know he feels much love coming from all directions. We are thinking of you both and send you our deepest love, as always.
Monica and Gregg
Words cannot say how sad we are to read this. We’re grateful we were able to spend a few days with you in February, to take walks and share delicious meals with you in your home, to spend time with you. Heidi’s wise words are very touching. We wish you strength during this difficult time. Peter is surrounded by his loved ones in his moment of need. We also send our love to all of you.
Irene and Chris
What Heidi said is so beautiful and I hope you are able to remember that as you are with him. I feel so potently your pain through this Jutta and want you to know it is such a brave thing you are doing for him. Many people would not be able to keep their love at home for the fear of it, all of it. Much easier for the sanitized hospital setting to take care of it, all of it.
Your posting on Mark's birthday is doubly poignant.
I hope his passing is as peaceful as possible and the warmth of your family love helps ease this painful time. That is andrew's and my strongest hope for all of you.
with strong affection,
ally & andrew
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