Sunday, April 13, 2014

Figuring out the unknown…

Tuesday, March 18, 2014
Last night I found myself looking up end stage metastatic urothelial bladder cancer online. There is not a whole lot of information available on what happens when a patient goes home to die, but what is available, fits with what we are seeing with Mary Claire. Her legs are swollen with the lymphedema and her abdomen is experiencing swelling as well. There is some blood in her urine. And she’s becoming more confused. At one point yesterday, she noticed the scars on one knee that are from when she had surgery back when I was in college. She asked what they were and I told her. Then she said, the surgery wasn’t on that knee, it was on the other knee. She is also sleeping more. I am hoping that eventually she will just drift off to sleep and simply go peacefully from there.

It is so hard to know what to do. I admit I have a tendency to want to shield her from the reality of this end that is coming. Despite being the ‘official’ Catholic among the siblings, I have a harder time putting my faith in a glorious afterlife. Maybe it’s the residual effects of being taught by a nun who believed in scaring 2nd graders into good behavior via rather vivid filmstrips of a fiery afterlife and the implication that we kids would be lucky to get off with purgatory. (All of which she did right after my father dropped dead in front of me when I was in 1st grade. Not exactly what I needed at that point in my life.) At any rate, having spent over 20 years of my life being utterly terrified by the thought of dying, I'm not sure I'm ready to help my sister confront her end. Julia on the other hand, believes in a glorious heaven enough for the both of us. I'm amazed by the depth and strength of her faith.

We are noticing other differences in Mary Claire. As I said, she was much, much more confused today. We would be talking with her and she’d just stare off into space and not respond. This morning I went to shower and when I got out and checked on her, she was lying on the couch, where we had left her, with her cell phone up to her ear. She had fallen asleep while talking to her husband Mike, who came back this evening and was, I think, a bit shocked at the difference in her since he left on Sunday. She's also having trouble feeding herself. She had issues getting the spoon to her mouth and kept dropping food. And it takes longer for her to take her pills. When we got here on Saturday, she'd pop them into her mouth easily. Today, I had to put each individual pill in her hand, then she would slowly raise her hand to her mouth, barely get the pill in, then take a sip of water.

So, we are afraid that the end is nearer than we originally thought. She does still know us. Our brother Clark and his wife are coming in tomorrow night instead of Thursday night. Jane is coming in Friday instead of Sunday. And I am beginning to see that I may be here still next week, even after Jane comes in. I know Larry is worried about me missing work next week. But I just can't bear to think of leaving MC. And I do have quite a lot of sick time that I can use if needed.

In one of Diana Gabaldon’s books, the main character talks about the ‘…heartrending and necessary task of helping a man to die.’

That is the business I am engaged in now. Only it is my sister who is dying. And it is breaking my heart.

Thursday, April 10, 2014

Best Laid Plans

This is the second installment in a series of posts I wrote while taking care of my late sister Mary Claire Luce when she was in hospice in March.

Monday, March 17, 2014 
Jane, Mary Claire, Julia and I were supposed to be in New Orleans today.

A couple of months ago my sister Jane had come up with the idea of all four sisters meeting in New Orleans. It was a good choice, as New Orleans would have something for our many different interests: shopping, museums, antiquing, great food, and gambling. It was also a convenient place to fly into
for all of us. Mary Claire and I were on board from the start. Mary Claire called Julia and convinced her that she could come, despite the trips being scheduled during part of one of the busiest weeks of the year for Julia's store on the coast of Texas.  Once we had all committed to the plan, Jane had flown into action and made reservations at the Windsor Court Hotel near the French Quarter and figured out how we could arrive at more or less the same time at the airport from three different cities. Tonight we had reservations at R’evolution for dinner.

It is the trip that will never happen. We are on a different journey now. 

The truth is, we cancelled the New Orleans trip a few weeks ago, before we knew that Mary Claire would be going into hospice. The swelling in MC’s right leg had gotten worse in January, so we had requested a return to lymphedema therapy at MDA. During one of the sessions, MC mentioned the plans for our trip and was told by the physical therapist that a flight, even a short one from Houston to New Orleans, was a bad idea for someone with her type of lymphedema. We already had doubts about the trip with Mary Claire’s increasing limited mobility and our worries about what we would do if she had a crisis when we were there. The therapist’s pronouncement made it official. We scuttled the plan for NOLA and decided to go to Plan B. We would all hang out together in Rockport or in Port Aransas during those days. We had already blocked out the time, we just changed to location to one that didn't require MC get on a plane and would enable us to get her to M.D. Anderson easily if a problem arose.

So, Mary Claire, Julia and I are in Rockport now. But instead of sitting in Julia’s newly installed hot tub and pool relaxing together, we are dealing with the very new reality of providing hospice care to MC.

A few facts about in-home hospice care: There is no ‘round the clock’ nursing care provided by the hospice service. The patient’s family provides the actual round the clock care. Yes, the hospice service is available 24 hours a day, but that is via phone. You call the main number and the nurse assigned to your loved one calls you back to advise you. If the issue is one that requires them they will come out, but at this point in time, we are scheduled to see the hospice nurse every other day. We also have a nurse’s aide who is assigned to Mary Claire who will come in Monday, Wednesday and Friday to help bathe MC and do other tasks for us such as change the bed linens, etc.

I don’t know how a person who is the sole caretaker of a patient who is in home hospice care does it. It is truly a 24-hour a day job, which requires a variety of skills: Organization, communication, and basic nursing skills. As it turns out, Julia and I have divided the tasks automatically. She is a take charge organizational genius, keeping on top of what is needed and dealing decisively with any issues that come up. I do the physical nursing including keeping track of Mary Claire's medications. And it works. Beautifully.
We are fortunate in that Julia and Jane both have financial resources that have enabled them to hire a lovely woman, Connie, who is staying with us at night, allowing us to sleep and get some rest. Julia had originally interviewed Connie as a possible nighttime care person for our mom, who is on the verge of needing round the clock care/supervision. But then Mary Claire reached this crisis point. So Connie comes at night to allow us to sleep. Not that sleep necessarily comes easily. But I am not taking anything to help me sleep because I want/need to be available if an issue comes up.

In between taking care of Mary Claire today, I worked today on setting up a remote office. Since there was no wireless network here at the house, my niece Ashley called the local network tech guys who came over and set up a wireless network for me here at the house. And I contacted the tech department at the school where I work to overnight the backup drive I have the majority of the photos and graphics I will need to get work done from Julia’s kitchen table. I am fully aware of how lucky I am to be able to work remotely and be supported by my bosses in this situation. Because right now, leaving Mary Claire is not an option. She needs help with almost everything.

We are noticing subtle changes in Mary Claire today. Signs that she is weakening faster than we expected. It worries us and we are concerned about when Jane should get here.  Julia has called Clark again and asked him to take some time off this week so he can be here by Thursday. My children are also making plans to come see Mary Claire. They cannot bear to not see her again. It’s a bit of a logistical issue, figuring out who is coming when and where to put them, but I work it out with them. I know how very much they love her. But I fret internally about MC ‘realizing’ that everyone is coming to say goodbye to her, knowing all the while that deep down, she knows.

One reason I know that is that today, MC’s main doctor from MDA called her to see how she was doing. I filled him in on what was happening with her while the nurse’s aide finished dressing her after her bath. Then I turned the phone over to MC, who told Dr. Zinner about how beautiful and peaceful it is here. And how happy she is to be here with the water and the birds and the sky. MC tells Dr. Zinner he must come down to Rockport as she is sure he needs a break. She tells him he can drink wine and Julia and Steve will take him on a canal cruise on their boat. We laugh later telling Julia about how MC has invited Dr. Zinner to come for ‘dinner and a boat ride.’ But not once during that conversation did MC mention getting better and coming back to Zinner for treatment. Not once.

Tuesday, April 08, 2014

The End of the Story

My younger sister, Mary Claire Chesnutt Luce died on Wednesday, March 26, 2014 at the age of 55 after a valiant fight against urethral cancer. While taking care of her for the last week and half of her life, I wrote about the experience of caring for her in hospice. I will be posting what I wrote over the next few weeks as part of a small series about the experience.  It is part of my mourning process and I hope those of you who read my blog will understand why I need to tell this story. 

Sunday, March 16, 2014
At some point in time, all of our stories will come to an end. This week my siblings and I began watching our beloved sister Mary Claire’s story reach that final chapter. After a long, brave struggle, she has exhausted her treatment options at MD Anderson (MDA) and we have placed her in hospice care.

Yesterday afternoon, I walked out of MDA for what will almost certainly be the last time and followed Mary Claire and her husband Mike down to Rockport, Texas where we have installed her in a room at our sister Julia’s house. Julia’s house is a beautiful place to be and once we determined that when Mary Claire entered hospice, she would no longer be a patient at MDA, we saw no reason for her to stay in Houston. So, we have brought her here. Where she can look out on the water and see the sky. And be surrounded by all of us who love her.

For me this is about finishing the journey I started with MC over two years ago in December of 2011, when at our family Christmas gathering, she pulled me aside and told me about a lump she had found near her collarbone over Thanksgiving. At the time, she (and I) thought that the most likely diagnosis was going to be lymphoma. Not great, but treatable. Instead, the diagnosis was Stage IV urethral cancer, which had spread to her lymph nodes and various other spots. Urethral cancer and other cancers of the bladder are not easily treated, especially once they have spread. There are limited drug and drug combinations that will reduce the tumors and the chances of her going into a full remission were slim to none. In fact, her original prognosis was 5 to 6 months without treatment and 15 to 18 with treatment. 

We were lucky, if you can call having her with us for just over two years instead of 18 months lucky. We had an additional Christmas with her that we did not expect to have. And I was blessed with truly getting to know this sister of mine. Taking care of her has been a joy and a privilege.

Today, Mary Claire has slept quite a lot, a reaction from the very long day we had yesterday between arranging the discharge from the hospital, the 3-hour drive to Rockport, and the meeting with the hospice team when she arrived. A meeting where she signed a do not
resuscitate (DNR) order. A document that hospice services require. One can gloss over the facts a little bit: about a third of patients who go into hospice care will leave hospice care to continue treatment, but the reality is if you go into hospice care, you are acknowledging that you most likely will die within six months or sooner.

One of the most emotionally tearing facets of this is that her husband Mike still thinks that Mary Claire will somehow overcome all that is now wrong and be able to leave hospice care and resume treatment at M.D. Anderson. He cannot let her go. And while we are fairly certain that Mary Claire does know that this is the end it hasn’t been clearly said yet. My sister Julia took Mike aside today and told him, “Mike, you have to know this is it.” She urged him to change his plans to go home for a few days to take care of things there so that he would not miss out on any of the good days Mary Claire still has, but he went anyway.

We have called our brother Clark to urge him to come down to see her sooner rather than later. Our sister Jane, who was with us in Houston at MDA this past week, is back home and trying to decide when she will return to Texas. Complicating matters for her is that she has come down with a nasty cold. Does she come sooner and potentially risk shortening Mary Claire's life by exposing her to an infection? Or does she wait and risk possibly never having Mary Claire recognize her again? And we have yet to figure out what to tell our 92-year-old mother. She lives here in Rockport and I have yet to see her. Which is quite strange for me as before this, I've stayed at my Julia's house just once before. I am the one who always stays with Mom when I come down here. Quite honestly, I’m more worried about how telling our mother will affect Julia. I worry right now about Julia as much as I worry about Mary Claire. And I need to figure out how to take care of all these people (my mother syndrome) and work remotely so I can spend the maximum amount of time with Mary Claire as her life draws to an end. At this point, it could be a two weeks, a month, two months or more. We simply do not know.