Had a good day Saturday with my family. My sister and I went to Lexington and picked up my parents. We took them to Blackburn, the tiny town where they grew up. We visited my grandparents farm, which is now my dad¡¯s farm, and talked with the renter and my cousins. Then my dad wanted to drive around town slowly, looking at it for what he assumed would be the last time. He told us some stories as memories came up.
Today he wanted to go to church so we did that. I noticed when we were putting the compression stockings on him that he had some droplets on his skin and little tiny blood spots on the stockings. That was new. The edema in his legs is worsening, causing tiny capillaries to begin to burst. That is not an expected progression of this diagnosis of terminal pancreatic cancer. The hospice nurse that I had come look at that told us that. It could¡¯ve been worse today because of the big day that we had yesterday with him up for a long time not taking his regular naps. So it may calm down in the next day or two. Although it will certainly continue to progress eventually. My boss said that his dad had about eight weeks of edema in his legs at the end.
I decided to takeoff this coming week at work so that I can take advantage of my dad¡®s mental clarity. He is getting a fentanyl patch every 72 hours. That¡¯s new he just had the second one put on yesterday. It¡¯s working very well to manage his pain. He saying his pain is only had a one or two whereas before he was saying five. And he was putting off starting the morphine because he figures that it will lead to loss of mental clarity. With the fentanyl is pairing to manage it for now very well while leaving him mentally clear, if a bit slow.
He is a bit agitated he keeps thinking of all these things he wants us to know and take care of. Today I went through all the financial accounts and got clear on what bills are paid automatically which we have to write checks for etc. Where are the different accounts are at Banks. As I take notes and ask him questions and get clear on those things it seems to take a load off his mind. He¡¯s very worried about how my mom will fare without him. So I¡¯m doing what I can to reassure him.
I told my sister the latest about the edema, and that she might want to look for some opportunities in the coming days to see him while he still has mental clarity. It may be that his body could start shutting down, or that we have to give more pain relief, and that he could get confused or become unconscious etc. I think that will happen I just don¡¯t know how soon.
So she and her family?
and Dane are coming tomorrow to spend time with him. I¡¯ll go over in the morning maybe cross a few more things off his to do list. In the hopes that we could maybe just enjoy the time together and relax when they get here. He has all these little things he wants me to know about the house, getting the gutters cleaned turning off the faucet in the winter outside, changing filters in the furnace etc. Wants to keep taking care of everything.
At the farm?Saturday and church today he took every opportunity to tell each person how he appreciated them and love them and to say goodbye. So it¡¯s very emotionally bitter sweet. He¡¯s always been a reserved man, so it¡¯s interesting to see this?side of him. And how easily he is crying. It was not something I ever saw growing up.?
For the most part I am not crying in his presence the way my sister very easily does. She hates that, she feels she should try to be strong. She¡¯s worried that it upsets him and mom as well.?I told her he knows that it¡¯s because she loves him. And that I felt like perhaps people see me as coldhearted since I don¡¯t cry. I¡¯ve been telling her that I have been crying or choking up now and again in private. And when I told Dane about dad asking us to drive slowly through Blackburn so he could see it one last time, I started crying. Doing it again now telling you all.?
My dad is running us pretty ragged. Mom has been dealing with it daily for a while, and I got good and worn?out today. He said he thought he might want to watch TV when we got the hospital bed and set it up in the living room. But he doesn¡¯t want to, he¡¯s not interested. But his mind is going. So he thinks of all these things that he wants us to know, and he makes lists. And then he wants to tell us or ask us to check something, or fix some thing. As well as helping with the compression socks and getting dressed and keeping track of medication¡®s and feeding him very small portions of food. It¡¯s pretty endless?all day long between his short naps.?
My mother sister, my aunt, is letting me stay at her house to sleep. She¡¯s always lived here in Lexington my whole life. We spent so much time here. So she¡¯s kind of like my second mom.?So that gives me a little respite time. It¡¯s nice and calm and quiet here. Everything¡®s orderly. At my parents house the dining room table in the kitchen island and the counters in the refrigerator are all covered with paperwork and mail and bills in the world in his notes and to do list about what to take care of. And medication¡®s and medical supplies. It¡¯s pretty chaotic.
I thought I would cook for myself but at least for the coming week I asked my aunt if she would make something for supper each night. I could have eggs for breakfast?and scrounge a salad and some cheese at lunch but I want at least one substantial meal. And with all the clutter and such at my parents it¡¯s difficult to cook right now. I felt perfectly fine asking her and she absolutely agreed and is glad to do it. I told my mom her sister was going to do that for me, and she got all weird. I said mom, I asked -my- aunt to cook supper for -me- and she said yes. I¡¯m not quite sure what my mother¡¯s reluctance to take my aunts help is all about. My aunt is six years older than my mother, she¡¯s 86 now. And she is in good health, and a retired nurse. And she has repeatedly expressed desire to help, comes over and does help. She¡¯s says, ¡°I think I¡¯m just in the way or it seems like they feel that way. So I try not to stay too long.¡± She is pretty bossy, and does like to do things her way. Maybe it¡¯s nothing more than them being tired of that after all these years. I tend to think her way is the right way, so I¡¯m kind of on her side. Lol. She has been going to the store for them, picking up things they need. So they let her do that.
Even though it is calm and quiet here., I didn¡¯t sleep well last night and here it is 1215 I¡¯m still not asleep. So I am relaying all this to you all. All via voice to text on my phone. So apologies for any typos, punctuation weirdnesses weird capitals etc. Thanks for listening. Love Jill
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Jill