Looking Ahead

Mom started to gather information on hospice today. Apparently, they like to keep people home now with caretakers coming in as needed. Mom wanted to know if I was comfortable with this and I told her I am. I just want to make sure we have the people or the skills for all that needs to be done. I don't want a situation to go bad because I'm untrained.

They are going to install a new PICC line tomorrow for Dad. We'll continue with the IV nutrition as we have been doing. They discussed a port in his chest but his doctor feels like that is way too invasive and that he isn't really strong enough. Dad's kidneys are starting to struggle. They did a sonogram today and we're waiting for results. His legs are all swollen and the drugs have been building up in his system. We we went on Father's Day, he was really disoriented. We found him at the desk asking about his credit card, which he believed he had given to the nurse to pay for something. He wasn't all that able to focus on our gifts or what we were telling him. He be good for a few sentences and then fade out. Plus he was exhausted. I guess the pain meds clear through his kidneys and now nothing is really flushing. So he was very foggy and confused. Mom and I both said he hadn't somehow counted on his loosing his place like that. We expected pain and sickness, but we assumed he'd know what was going on. Mom said he was near comatose today when she got there and so they held off the next few rounds of meds. The nurse was concerned and keeping a close eye on him. Mom said later, when he woke up, he was much more like himself. They had the news on and he wanted to be sure I got everything here squared away before the big storm hit. I'm hoping they'll be able to make a decision about his kidneys tomorrow and move on it.

When Dad got his diagnosis, he said the only thing he really wanted to do was to get to Vermont one more time. We have the big family vacation/reunion planned again this summer at the end of July. The woman who owns the cabin they've been renting for years is heartbroken that Dad is sick. She lost her husband last year. She told us that the cabin was open and unrented all of June so if he could make it up then, we should just go. We've been talking it out the last week or so. We talked about maybe renting or borrowing an RV so he could lay down for the trip and be comfortable. Once of the nurses that Mom knows personally offered to come along and help. We know we could ask any fireman, friend, or family member for help or to come along. But as the days pass, it looks less likely. Dad's doctor has been his doctor for years- he was my Dad's mother's doctor. He is really upset about Dad. Throughout this ordeal, he's come to visit Dad in the hospital almost every day, even when he wasn't directly involved in any of his care, just to see him. He told my Mom he wants to stay positive but he wants to be honest too. He hates the thought of Dad not getting to Vermont again, but he really doesn't think it is going to be possible. There are just too many problems. And we don't want to pile into an RV and embark on an hours long trip and then have an emergency.

I've been thinking about the trip for weeks. Especially if we'd gone in June, because it would only have been my folks and I (and maybe the nurse). The thought of being there for Dad to say goodbye to the lake, knowing he was saying goodbye, absolutely breaks my heart. But the thought of him not getting that chance is even worse. It's so unfair. I wish he could be well enough to go with all of us. Then it might feel like one last party rather than a final farewell. But I really don't think he's going to get to go at all. And I think he probably knows it.

Father's Day was awful for so many reasons. I don't know if it was worse that he didn't seem to grasp what was going on. I don't supposed it would have been any easier sharing a last Father's Day if he was crystal clear. It's the first Father's Day I've spent with him in years. I wish it could have been better.

Last year, when I got the five-day migraine on my birthday I thought, "Next year's birthday has got to be better." I had no idea how wrong I was. When I was a high school senior, my boyfriend's brother committed suicide at college in February. His mother, who had been battling cancer for 9 years, gave up. By spring she was in hospice, by summer she was gone. She was buried on my birthday. I think I may be replaying that summer. In all the exact same locations. I know that someday I'll have a happy birthday again, but I don't think they'll ever be the same.