Wednesday, January 12, 2011

Family crises are exhausting, Continued

Our sudden arrival in Utah seemed to drive it home to my mother that perhaps the news about my father is serious. He was waiting to hear more about his scans from his doctor, and got a phone call from the nurse instead: "We are referring you up to Huntsman Cancer Institute." Well, that was probably a year and a half overdue. The doctor ended calling my dad the day I left Utah to apologize for being out of town so much last year. I would like to pick out a few tall, male friends to come with my brother and I to pay this doctor a personal visit.

My dad wasn't feeling well-- very tired, nauseated, no appetite. He would sleep for most of the morning, get up and drink an Ensure shake, and return to bed for another nap. He'd be up for maybe 5 total hours a day. We finally got an appointment for HCI for the Wednesday after Christmas, which was Tommy's birthday. They ended up changing this to Thursday, when the weather was abysmal.

Christmas passed quietly without much event. The kids got an XBOX 360, so that helped them pass the time. We also did try to get them out a bit in the snow and to the nickel arcade and to play laser tag. However, we all spent a lot of time at my parents' condo. My brother arrived the Monday after Christmas with his family. Dereck and I met them at the train station at night and we stopped at the state liquor store on the way back to my parents' house.

While we were in Utah, we worried. We worried about money, we worried about my mother's dementia, which means she now requires 24-hour supervision, and about the fact that right now my sick father is her primary caregiver, and the fact that Matt and I don't live in Utah. Matt is exhausted, and I am absolutely determined, with class flashing, that he should not be assigned a caregiver role here. I need him to get well. I need him not to get worse. I need his body to repair itself, and for him to keep his blood pressure down.

On Thursday morning, there was a little discussion over who would drive to Salt Lake City from Provo for the appointment in the snow. My dad insisted he was fine. My brother offered, but technically he *still* shouldn't be driving. I finally insisted on driving. My dad was later proud of me when I successfully avoided two traffic accidents due to the weather by keeping my head, downshifting, and turning into skids. It was a long drive.

The oncologist says that Stage 4 Melanoma is considered incurable. However, the cancer is not directly attacking any of his major organs at this point, so they were going to see if he qualifies for a clinical trial of palliative treatment. Any treatment is aimed at quality of life, not extension of life, though. They are also measuring his lesions. We mentioned that my dad was sleeping a lot, and the doctor asked him if he was depressed by the diagnosis.

My dad did perk up considerably after his appointment. However, we had still not contacted insurance or put any plans in place for home care or assisted living or our mother, and my dad kept saying that they would take care of it. So, with nothing in place except the addition of my brother and I to their bank account, we came home after almost 2 weeks.

Last week, my aunt Ann came up for a day and stayed for most of the week. I talked to my dad and he was talking about having my mother in a nursing home in two or three weeks, while I had spun fantasies to myself that we would have her go to an adult daycare as a transition and then do home care and then keep them together at home as long as possible.

However, what's the prase? About God laughing when we make plans?

Burke kept in close touch with my parents through the weekend. Matt spoke to Tom Sunday night and reported that Tom sounds "done."

Monday, he was having some trouble with breathing, even though he is on oxygen at night. Burke came in and took my dad to the ER. They admitted him and that night he told me that they were looking at his heart. The next day the nurse told me that it's the cancer and Burke started talking about transferring my dad to Huntsman Cancer Institute. They moved him up there today, telling me that now it's his kidney functioning that is a concern. Tomorrow they are going to drain fluid from my dad's stomach. I don't know what is causing this.

Since my dad is in the hospital, and we don't know how long this will be, we have to figure out what the best course of action is for our mother. This is more difficult than anything else. Ann couldn't even convince Pat to spend a week out of town. My aunt Susan graciously offered to take my mom in Idaho for a month, but Pat called me today to tell me that that's not going to happen. She insists that she has to be home so she can "look at Tom every day." I assured her that a) she doesn't need to do that and b) she can't ask others to stay with her and drive her to him daily. She snapped, "I'm not asking!" I know she is grasping for her independence, but she cannot stay alone. Therefore, in light of the fact that she is unsafe staying alone, she is going to have to acquiesce a bit to the needs of her caretakers.

She thinks her caregivers will do the right thing for her and keep her at home, but I know she is flailing for remnants of control. She kept repeating that she couldn't find the checkbook. When I asked her what she wanted to write a check for, she said the monthly bills. Well, she can't be trusted with the monthly bills right now, either. And she gets upset when she reports that Burke has decided to come take care of this or that. It offends her status as eldest child, and threatens her autonomy. But how do you gently allow someone with dementia to keep their dignity when the simple truth is that their autonomy has been gone for a long, long time? I told Burke that when the time comes to put her in a home, I will come out. I told him that we have to be careful about how much choice she thinks she can assert about going to Susan's or home. I said, "It is eventually, for someone, going to be very very unpleasant. And I can be that person."  She thinks I'm in on it anyway. She calls accusing me of already knowing about things (like her going to Susan's).

She is on the phone with me now, talking in circles, not making sense. Burke called, so I got off the phone with her quickly.

Burke is ready for us to come out, at least for moral support for our dad. None of us really know what is going to happen when-- how bad this is, whether the cancer is worse than they thought, but we all agree that it's coming a lot more fast and furious than any of us anticipated. And maybe rather than trying to juggle my mother to Susan's, we just need to put her in a home now, so my dad can at least have some peace in his final days.

I cried so much the first few weeks of this, but now I don't even have the energy. I went to bed on Sunday afternoon for a nap and I couldn't get back out of bed for longer than a trip to get more orange juice and go to the bathroom. I felt dizzy, but just also so tired, just sick, so I just slept and slept and slept. I've been asking Burke daily to tell me when I need to come. I've been dreading and postponing it just for the sake of my own health. But now I better go and start looking at plane tickets. Matt will go out tomorrow.


  1. Oh Jen. I'm so sorry that so much is falling apart out there. Your whole family is in my thoughts and I wish you all the best.

  2. Jen,

    I'm so sorry that you are going through all of this at once. Dealing with a parent with stage 4 cancer can be exhausting. My mom is dealing with her second bout of ovarian cancer and I'm the one taking care of her. During her first bout, my dad contracted Staph and spent 6 weeks in ICU before his body shut down and he died. Let me know if you need to commiserate. I'll keep you in my thoughts and prayers. I know it doesn't help now but you will come out the other side of all of this a stronger person.

  3. My heart goes out to you. Prayers, love, and kind thoughts all for you and yours, Jen. None of this will be easy. But like me, you're the one who can do the hard things, can be the scapegoat, can be the hardass when necessary.

    Call if you need a ride to the airport (whichever one). My number's on fb.