When a new baby arrives, people often share pearls of wisdom and advice, like "Cherish every moment; it passes in the blink of an eye" or "I remember when my son was as small as yours; now he's in high school." They caution you not to blink, as they'll be walking before you know it, and this phase will be a distant memory. Enjoy every moment is something you hear time and again.
2019 |
Dad died this month, and I am left with a thousand regrets bound by one common thread: I should have been more present and observed and enjoyed even this last phase, just like I was mindful of enjoying and fully focusing on the children when they were babies. So I'm here to tell you: spend time with them and be intentionally present, even especially when they are declining. In some ways, it was a good death, as good as a death can be, I suppose. And there are blessings and things I am thankful for in all of this. But there is nothing I wouldn't give for just one more day with him. Heck, even one more hour.
I thought I had built up a level of immunity to grief and loss, having lost Mom ten years ago. Dad had been declining for a while, years really, and we usually have some amount of anticipatory grief when we see our loved ones losing their grasp on this world; when we can tell that our time together is shortening. Dad even had it, often telling my brother Glen "I'm going to miss you when I'm not here." I told my work-bff "It's okay, I'll manage when he's gone...I've been through this before." She politely smiled, knowing full well how wrong I was. But I believed it, I really did, even though I was so wrong. In many ways, the loss of Dad has felt much worse than when I lost Mom; compounded in a way.
I'll spare you the details of the full reaction I had in the days after Dad died on January 17th, but let's just say it involved a lot of crying while driving and blasting Pretty Hate Machine, a fair amount of lashing out at my kids for no good reason, no sleep, and way too much over-thinking. Dicey was the best way to describe how I was feeling on any given day for those first two weeks. We knew it was coming, but yet we didn't. The last decline was rapid, and we were not prepared. But are you ever prepared?
Dad had needed some help for quite a while. It was tough to get him to accept this, but I asked his primary care doctor to put in a referral for an evaluation for hospice services. He was understandably upset by even the mere mention of the word 'hospice.' You see, Dad did not have anything that he was "dying" of, per se. Yes, he had prostate cancer, but that is slow-growing. Yes, he had chronic lymphatic leukemia, but he had that for well over a decade, and it was being managed. But when he was evaluated, his qualifying factor was the fact that he only weighed 100 pounds. And he used to be 6'1". So he accepted the in home hospice nurses for 9 hours a week, plus a group called Comfort Keepers was in providing help three days a week. They were only providing the in-home support for a week or two when Dad said he was ready for the 24/7 hospice live-in care at the VA. Wait, what? He had done a 180, having gone from not wanting any help at home to wanting it around the clock!
I think the nurses could tell he needed more care, and so they likely helped nudge him. And I thank God that he acquiesced because he had the very best care there. He started there after New Year's while we were still in Oregon. I flew home on January 4th and went to visit him on the 5th, bracing myself for the worst. I didn't bring the kids because I wasn't sure what to expect, and I was pleasantly surprised. He had his own large, private room with a private bathroom attached. He liked the food and the staff. His goal was to "gain weight, get stronger, and come home." While I was not certain coming home was a real possibility, stranger things have happened. When I went to visit him the next day, I brought the kids and their Risk board game, so they could play with him. The medical director, Dr. Hoxie, came in to meet with Dad while I was there. He said that he understood that Dad's goal was to gain weight and get stronger, and to support him in that goal, he had ordered physical therapy. I loved that he went along with a version of the goal, rather than telling Dad it was not possible or realistic. He treated him with dignity and respect - everyone did - and for that I will always remain grateful. One time when I visited, Dad pressed his call button. Right away, a very nice man appeared and Dad requested some apple sauce. I had the impression that he was demonstrating how great the service was, rather than really craving apple sauce. He was proud of it, and Nathan was sure to commend him on the amazing medical care that his service had provided both him and Mom. Things were looking up.
This is Dr. Lucas came the reply. Astounded, I said who I was and who my father was before saying, with equal parts excitement and sarcasm: Great! I understand you do not think he is qualified for hospice and that he should go home! I agree with you! I would like to take him home, but the doctors and nurses think he needs to stay! I'm headed there right now - could you meet me there and explain to them that he's good to go home????!
***long pause*** Akwardly, she admitted Ummm...I understand there has been a change in his condition.
What?! You don't say! Yes - obviously! Look - you're a smart woman - you went to medical school. But don't get tunnel vision! Look at the bigger picture! I could find a checker from the grocery store and even they would be able to tell he has less than six months! I'm a school counselor and I can tell you he doesn't have long! He weighs 100 pounds! I waivered between crying and yelling. Surprisingly, she was still on the phone. Having said my peace, and hopefully preventing this kind of misguided opinion from impacting other families in the future, I was ready to end the conversation when she made the mistake of saying I'm sorry for the misunderstanding.
Are you even kidding me?! What misunderstanding are you referring to? Because it is clearly listed in his medical record that you just determined he has MORE THAN 6 months to live! I don't remember what else I said, but I continued to drive the point home, until she actually apologized and said the words I very much needed to hear: I'm sorry.
I felt so much better. I had originally wanted to file a formal complaint, but this was better than that - to be able to talk to her and convey the enormity of her error, and the damage it caused. Or was it a blessing in disguise? My husband has since aptly pointed out that it gave Dad hope toward the end. It gave us all hope, and so maybe the news that he was not dying just a few days before he died was a good thing, and all a part of the plan.
I walked into Dad's room, that last day of his life, on January 17th and he was asleep. The priest arrived and Baptized my father, gave him his Confirmation as well as his Last Rites and still, he remained asleep. I incorrectly thought that he was maybe on a lot of morphine and learned that they had not given him any in quite awhile. How can you tell he's not in pain? I inquired, as the nurse explained that they look for signs such as grimacing. He looked peaceful. I held his hand. I sat with him. The day went by and I kept expecting him to wake up; a moment of consciousness. It was not to be. Nathan brought the kids to see their Grandpa, for what would be the last time. We left and went to dinner and then I came back and stayed until the end.
Around 11pm Dad's breathing changed. I called my husband, who found a family member (thanks, Cassandra) to come stay with our sleeping children so he could get back on the road to be with me. I called over the charge nurse who checked his hands and, taking his socks off, the color of his feet. “He’s changing” she confirmed. She noticed that his feet were cold and left, quickly returning with a heated blanket. Sometimes, the smallest acts show the greatest amounts of kindness. In that moment I was immensely grateful for her small act, and I still am. “I can’t stand it when my feet are cold,” she said. She asked if I had given him “permission” to leave. I had not, and I had not even thought of that and she encouraged me to, leaving the room. I told him how loved he was, how we would always watch over Glen and how his work was done here. He could go and be with Mom. I sat by his side a while longer. Then, Dad's breathing slowed and then it stopped. No final gasp or discomfort, fortunately. Before my husband reached the freeway for the hour drive, I told him Nevermind, he's gone. But he continued the drive, which was good. He arrived while I was still in the room with Dad and their Chaplain, August. They were preparing for the hero's procession, viewable here:
A few days after Dad's passing, I had a dream which I like to believe was more than a dream. I believe that it was a message and a sign that Dad is home, reunited with Mom in Heaven. I fell asleep in Aut's room. In my dream, I was asleep in Aut's room, only it was my room and I was in Mom and Dad's house. I woke up slightly to my Mom closing the door over, the same door of the same room that I was in. Although I was sleeping, I saw here do that and knew that she was doing it because my Dad was returning home late from a trip, and she didn't want it to wake me up. I saw her walk downstairs and let him in the front door. He had his large military backpack with him and left it there in the foyer, as the headed back upstairs to our (their) master bedroom and closed the door. In my dream, I didn't know where he had been for so long, but I was glad that he made it home safely. When I woke up, the dream was so real that I actually thought Nathan had come over to close the door rather than waking me up. I was surprised when he said he had not. To me, this dream was a comforting depiction of a heartfelt reunion in Heaven with Mom and Dad. The way she welcomed him home, like she knew he would be there; it wasn't a surprise.
I regret not fully embracing this final phase of my father's life, but I understand that I did the best I could with where I was at. I'll give myself some grace, as I know he would. I thought we had more time, and yet was worried we would have too much- that it would be long and drawn out and painful. I am thankful that it was not, but wish I had taken a day off sooner, when he was awake and aware. I urge you to be present and intentional, when the time comes, just like the attentiveness shown to a new baby. Cherish time with your loved ones, even in especially in the face of an impending loss. Sit with them, and hold their hand, even if they can't talk. We couldn't talk when we were babies and yet they held us. They sat with us and took it all in. They were intentional. Be intentional and and cast aside all of the fears of what it to come and what might happen as much as you can because the fears rob you of the present moment. Be in the moment with them, as much as you can; bear witness. We need to cherish our parents when they are nearing the end of their life just like we cherish babies when they are at the beginning of theirs; just like they cherished us when we were born.