I generally keep things lighthearted and perky on my blog. But well, this is heavy on my heart and it's something that my family is struggling with so I'd like to share. We have family and friends all over the country and this is one way I can paint a picture, in a sense, of what is going on.
I "babysat" my dad last week. As you may know, my dad has terminal cancer that started in his kidney ten years ago and has now metastasized into other areas of his body. We don't actually know where the cancer has spread now because he has been completely out of a doctor's care for the last month or so. When the doctor realized that the treatment medications that had been keeping the cancer from growing the last five years was no longer working, he recommended that my mom call hospice. No more monthly tests or appointments with oncology, no more twice weekly visits to the nurse's clinic to clean and wrap unhealed wounds and no more driving around town for my mom, picking up prescriptions here and there and transporting my dad in and out of a wheelchair. It's actually a relief for my mom to have bandages and medications delivered to the house and for her not to be making sometimes twice daily trips to the pharmacy.
Within a day of starting hospice a hospital bed had been set up in their bedroom. My dad hasn't slept in the bedroom for at least fifteen years that I can remember. Working late nights and having a tendency towards night owl habits with frequent wakings had him sleeping on the living room sofa. He liked to lay on the couch to support his bad back as well. So the hospital bed stayed unused for a bit. My mom also felt that it might be a psychological thing as well, she speculated...he knows that this bed will likely be where he's going to die.
However after last week, early in the morning, when he had an incident where he was having difficulty breathing and hospice brought in an oxygen tank, my mom thought it best that he start sleeping in the hospital bed. So now he sleeps in the bedroom so she can keep an ear out for him in the night if he needs her assistance. He was afraid that he would wake her too often and at first she said he was fine; heavily dosed with morphine and an anti-anxiety med he had been sleeping solidly through the night. Unfortunately now that his body is more accustomed to the meds, he requires more frequent doses so my mom is waking constantly to my dad moaning in pain, to administer medications or even just massage the aches in his back. She can feel lumps under his skin which we can only surmise to be growing tumors.
On our wedding day
He falls asleep at a moment's notice, nodding off in the middle of conversations and during his TV programs. He's barely eating any real food, sipping away on protein drinks instead. He has no energy and no strength. Even up to a few weeks ago he was able to move around the house with a cane, able to leave home for a few hours in the wheelchair. But now he can only walk with his walker very short distances and mostly requirs my mom to push him on the seat of the walker. Maneuvering into the bathroom has become more difficult.
Dad doesn't bring up conversations anymore unless it's to ask for a drink or more pain medication. In the past, he always had an interesting tidbit to share with me about something he saw on the news. And he had great stories from working as a Sheriff, we'd make him tell and retell them time and time again. He still watches television, in between naps but how much he's actually taking in, we can't tell. He just seems to stare absently at the screen.
My dad cannot be left alone. He requires an hourly dose of morphine during the day. He needs help getting up or adjusting his bathrobe or pillows. He sits in a recliner in the living room, surrounded by pillows like a warm nest. He wears sweatpants, socks, slippers, a long sleeved tee (or two) and a giant fuzzy bathrobe. This is the same robe that I bought him about 20 years ago that, at that time, was too small and couldn't close over his barrel chest. Now it literally wraps around his bony frame twice, the sash tied into a knot and dangling below his knees in its excess. His bones protrude sharply, even through the layers. It's painful to see the slack skin on his face, the angles of his cheekbones and jawline, the thin legs and arms, every bit of him getting smaller and smaller each day.
My mom mentioned the other day that she remembers the first time she met my dad and the first time he gave her a hug. They were in their mid-20s. He was tall and strong and she said she rested her cheek against his big chest. She recalled the memory with a little smile. We hugged and had a brief cry, letting ourselves sit in the memories for a minute. She looked me in the eye and said that she knew if this was all reversed she knows that he would be doing all these things for her in a heartbeat. The sleepless nights, the changing of diapers, the bathing with a cleansing cloth, the constant medication doses. He'd do it all for her and he'd do it without complaint, we all know that. We each can recall times when we were sick and Dad was always right there, cleaning up after us, cooling us with a moist washcloth to bring down a fever, helping us to the bathroom when we were too weak and even just sitting by our bedside so that when we woke up, he was there in case we needed anything.
As I was sitting with him this past week, trying to chat as we always had in the past (let me say, it was a very one-sided conversation!), I recalled the last photograph I took of him. It was taken in September and at the time we were shocked at his appearance and deterioration. He'd lost so much weight that summer.
He's lost so much more weight since this photo was taken. I can't bring myself to take a more updated picture of him now. I am torn because yes, this is still my father but I don't particularly want any mementos of how he looks at this moment.
I can close my eyes and pinpoint moments in time that I'd prefer to remember about my dad. The look on his face when I learned how to ride my bicycle. His laugh as we rode the coasters at Disneyland. His gentle encouragements that I should be charging more for my artwork and boutique outfits. Playing board games with him where the prize was chocolate...what a sweet tooth he had! The detail he recalled in my dance performances ("You were the best one on that stage, Julie"). Good Lord, we have so many beautiful memories. And I will, in the future, remember these final days as one of those beautiful memories. Sitting with my dad on the sofa, touching his thin hand, chatting by myself about nothing just to fill the empty space as he gently nods off to sleep.