It has been a slow few days with things shifting and changing here. This is now day 6 of Daddy being back on the chemo regime at 75% and we are stopping it today per the nurse's orders. We called in this morning to say that the hot spot on the roof of his mouth was back, the hand & foot syndrome has started again with a vengeance and the sound of him losing his stomach behind closed doors has been severe. We have an appointment already on the calendar for this coming Friday so I imagine we will just keep that appointment as a means of following up and go back to baseline from here.
Mowing the Grass
There are 2 male family members here that have been taking care of the yard for us....but they have their own lives to deal with as well so sometimes our yard doesn't get checked off the list very quickly. Daddy told me not to mess with it and I listened....for 2 more days and then gave in to my restlessness. I figure it needed to be done and I am an able bodied person. Being an old military wife has made me adjust my concept of my capabilities. Though I can't say I would want to do it all the time with the humidity and heat outside, I did have fun doing this big yard in sections as I sang out loud and accomplished a worthwhile task.
Daddy however spent the evening very quiet. I kept telling myself it was the chemo causing him to be quiet but I knew it was more than that. Finally, after doing all of my bedtime chores I hugged him tight, blinked big old eyelashes at him and asked him not to be mad at me for doing the yard. He laughed and shook his head saying, "You are just so stubborn."
Yep that is me to a tee and to a fault.
Crying and Dealing
My niece came over for a surprise visit this morning and it was good to see her. I could tell right away that she needed to air out her thoughts so we sat in the sun room for a couple of hours. Her grandma on her dad's side of the family just passed yesterday and with the reality of my Daddy's health being so obvious, her 24 year old mind and heart is having a hard time coming to grips with mortality.
I let her speak whatever crossed her mind and let her know she was in safe company. At one point she confessed through tears that it is so much easier to find things to do and just not come by for visits. It hurts to visit because it is a constant reminder that things are changing.
I agreed with her. "You are right", I said. "If you don't visit then you don't have to think now and you don't have to hurt now. But if you don't visit now then you are robbing yourself later and it will hurt more." Poor sweetie. I am glad she recognizes it. Too many don't see what they are doing.
I told Daddy that I have been talking with Hubby and girls and after the wedding in August I will be coming back here to be with him again. Instantly his chin quivered and tears rolled down his cheeks. He said he knows I have responsibilities in Portland but he is so grateful for all the time I can give him.
I knew the idea of being alone had been weighing on him but I didn't realize it was quite that much. Yes there is family here: a cousin and her husband and grown son, a step-sister and her 2 grown daughters, a step-brother and his family; and some of them are able to come over to help and watch over Daddy. But no one has the freedom to be with him more than a couple of hours at a time.
The truth is that Daddy needs help to do most everything. On a good day he can let the dogs out but he can't bring them in. On a good day he can push his syringes of medicine into his j-tube if he leans against a wall using his body weight. He can't do chores or answer the door and rarely does he have the fine dexterity strength to push a straw into a juice box. There was a time when I first got here last month that I could open a can of formula and cover it with saran wrap for him to pour later but now it is too hard for him to open the pump bag.
Most importantly...it's the feeling of being alone. Even if all I accomplish is sitting on the couch for hours at a time, at least when he opens his eyes he sees that he is not alone...that he is loved and not forgotten.
I hope to visit Portland for a week or two before coming back but I am not going to make any firm travel plans just yet with the chemo and symptoms not submitting to a schedule.
Well that is all for now. I think it will be a quiet week.
Thank you so much for your support and encouragements that you send and for understanding that when I don't respond back it is not because I don't care. I do care deeply and I am so grateful.
God bless your week immensely!