Thursday, November 14, 2013

An Update on Daddy

 2013 November 14

An Update on Daddy

As regular readers know, my Dad was admitted to the hospital on Feb 15, for emergency surgery. At the time they discovered a mass in his right lung, which was diagnosed as stage 4 small cell lung cancer. He was then 87.

Raymond, Greyla and I hightailed it back to Pittsburgh in February, when we got the news. Except for a period of about 8 weeks in late summer, early fall, we have been in the general Pittsburgh area since February. If the decision were only mine, I would stay put, but that's I blog for another time…

Daddy has had peaks and valleys over the last 9 months. Lately, his decline seems to be accelerating, although still with ups and downs, bad days and better ones.

About a week ago, after discussion with Vinny, my brother and Daddy's primary caregiver, we called Daddy's oncologist to ask about Hospice referral. They, in turn, contacted Forbes Hospice at Home, who set an appointment to come and evaluate Daddy.

My Dad lives in my brother's house, as do two other unmarried brothers. After talking with Vinny, and hearing him say that Daddy "plays me" (which had been brought to my attention also, by my husband and a dear friend) I opted to not be present for the evaluation. I felt it was more important for the people who actually live in the house to be there, not someone who simply comes to visit occasionally. But, it was hard for me. I have to keep reminding myself that this is about Daddy. No matter how much I want to be his caregiver, because I feel that is what the oldest daughter should do, that is not really what is practical. Nor is it what Daddy wants.

Daddy has gone from a normal weight for him of 150, to his current frail weight of 110. Granted, even at the beginning of this year, he wasn't at his fighting weight; he was maybe, 135. But the weight loss has been continual and dramatic. And his appetite is sometimes nonexistent. We have tried all the suggestions of adding protein shakes, giving him small bits to eat more often, etc. The problem is that too often, he says that nothing tastes right, or that he just doesn't feel like eating.

He was been unsteady on his feet for some time now, but has refused to use any stability device in the house. When he went out, he would use his cane, but refused to admit how unsteady he really was. Often the blame was on his shoes, the rug, the floor, or what have you.

And he was having some urinary issues that made me worry that he might have a urinary tract infection. I also worried about skin breakdown, both from urinary problems and also from his refusal to do more than sit on the couch and watch TV.

Things have improved some since Hospice became involved. They have made some supplies available that otherwise would've been an out of pocket expense. They have offered Daddy the option of a hospital bed for the first floor, for those times when he doesn't feel stronger enough to climb the stairs to his second floor bedroom. They have offered additional nutritional support. They must've said or done something, because he has started using the walker in the house. 

We know that some of his weakness and extreme tiredness was the result of the cumulative effects of his radiation therapy. Perhaps some of the appetite suppression was too. The past couple of days he is eating slightly more than he has been. Yesterday Ray, Greyla & I went to spend some time with him. His neighbor, Ted, arrived shortly after we did. As we all chatted, Daddy seemed to become a little confused. When I mentioned this to Vinny, he said it seems to happen when there are more people around.

Some of our time together yesterday, I just sat next to him and occasionally put my head on his shoulder. I hate seeing him so frail, weak, and tired. I hate that the cancer seems to be sucking the life right out of him. But, I am ever so grateful and blessed to have had him for 63 years! And I am grateful for my brother who is an even kinder man than I knew him to be. 

Some days recently, he has been too weak to even shower on his own. I am sure that when he is downstairs and decides he wants to shower, simply making the trek up the stairs wears him out, leaving no energy for actually showering on his own. Because of this, I think we ought to go with Hospice's suggestion of adding the hospital bed downstairs, along with having someone come a few times weekly to bathe him. However, when the Hospice nurse made these suggestions to Daddy, his response was, "No, let's just keep things as they are."

Tomorrow, when I go visit Daddy, I'm going to try to talk to him about having the option of two beds, one in his room and one downstairs. I'm hoping to help him see this might expand his options as well as his comfort. It's hard to take these baby steps, when it feels like the sand is going faster and faster through the hourglass. Yet, I know my dad well enough to know that if you push him, he's going to push right back, even at 110 pounds, that old guy can be a force to be reckoned with! And, God knows, you don't want to piss him off!

The Hospice nurse gave Vinny booklets for us to read about the dying experience. They were helpful. They offered some insight into the way people process the dying experience. They shared some observations of changes that seem to be universal, as well as an extremely flexible timeline. That is helpful because now we have a very general idea of where Daddy is at in the process.

So, if you've read this, and it is in your wheelhouse to do so, say a prayer. Pray for his comfort. Pray for strength for all of us, and for wisdom. And as a friend suggested, pray for my Dad to have a good death when the time comes.









  1. I'm so sorry this is where you find yourself at this time in your life. I honestly don't know which is the most desirable option. . .having a parent linger, and suffering that helpless feeling. . .or to have no warning whatsoever, as happened with my mother, which leave the feeling of no opportunity to say goodbye!

    Hugs and prayers that angels of comfort and peace may camp round about you and your family in this time of decision making. . .

    1. TY Janice. I don't know either. My Mom too died sort of suddenly, after a hospital stay, so I too have been in both situations. Honestly, I am glad to have had time with Daddy. The part that is difficult for me right now is that I would, if I were not married to Raymond, stay here to help and to give my brother a break. Unfortunately, that really is not an option, so the next best thing is to drive to FL, where we have already been paying rent on a lot we aren't using for 2 months, get settled in for the winter and then plan to fly to Pgh, as Daddy declines more.

      TY for your prayers. I know that no matter how difficult things seem, I am never alone.