How Do You Say Goodbye?

The fifth installment in my series on taking care of Mary Claire in hospice earlier this year. 

Thursday, March 20, 2014
Mary Claire continues to weaken. We can all see it. She’s determined to do things on her own, but this morning, when I fixed her breakfast (chocolate milk and malt o’ meal) she couldn’t feed herself. She was just too shaky. She got frustrated and wouldn’t eat any more. Absolutely refused to let me help her. We are worried because she doesn’t realize that she can’t do things by herself anymore and very concerned that she will wheel herself too close to the stairs or try to stand up by herself and fall. So, we kept a close eye on her. Much to her annoyance, I’m sure. She also got upset when Julia helped her put her makeup on. It hurts MC to see her face in the mirror, which is so thin, and to see the swelling she has in her lower body. She can’t move by herself and she’s not herself. And all she wants is to be ‘normal’ again.

Today really started the goodbyes. Family is beginning to come in. Clark came in this morning early and when MC saw him, she called his name and just clung to him when he hugged her. She was so happy he was here. My daughter Emily came in for a quick overnight trip, and a few friends stopped by. Mom was also told today about what is happening. She is stunned and heartbroken. I finally saw her this evening. Julia called me to come join her at a restaurant, where she had taken Mom and our friends from home to get me out of the house. Amid the laughter and talk, much about old times, Mom suddenly became quiet and teary. It’s a shock, because we tried to protect Mom from the worst of this. And I have no idea if that was the right or wrong thing to do. 

After everyone else had gone, Julia and I stayed. And talked. And cried. And on the topic of the right or wrong things to do, we agreed that no matter with what has happened so far and with what happens in the next few days, there will be no second guessing, no guilt, no recriminations. And we told Clark that when he and his wife came and joined us. This loss is going to tear us apart in so many ways. We cannot tear each other apart during or afterwards. 

One bright spot in this day. The weather finally was just warm enough with no wind to allow MC to sit outside on the deck. We got her out there and just sat and visited while music played on an iPad. It wasn’t long, but I’m so happy that we had that moment with MC.

The low spot: When I was getting MC ready for bed, much earlier than her usual time at her request, she asked me, “Why can’t I remember anything?” And my heart broke again.

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.

Heroes

I have a small confession to make: I have a sort of litmus test for people. Basically, if they say their hero or one of their heroes is Princess Diana, I tend to put them down as people who are, shall we say, a bit shallow. Nothing against Princess Di. But based on what I know about the late princess, I have a hard time thinking of her as a 'hero.' In the interests of complete disclosure, I admit I do have a bit of a fascination with the British Royal Family. As in, if I see a news headline about them, I am more likely to read the article than I am to pass it up. Yes, I am shallow that way. But are any of them my heroes? No. And are they or any celebrity ever likely to be?

No. I have higher standards for heroes than mere news coverage or wealth. And my standards, as vague as they are, are high enough that if someone had asked me last year who my hero is, I would have been hard pressed to come up with an answer. But the months since this past February have changed that. I can honestly say that I do have a hero now. It's my little sister, Mary Claire.

In February, Mary Claire was diagnosed with cancer. I was with her when she got the news and let me tell you, my heart still stops when I think of that day. Because the news was awful in the truest sense of the word. That day was the day when the bottom dropped out of my family's world. Many people, hearing that diagnosis would have simply given up. Quite honestly, that was one of Mary Claire's choices. But she didn't take that choice. Instead she chose to fight the cancer cells that invaded her body with everything that she had.

Over the past six months, I've watched my sister transform. She readily admitted that she well may have done this to herself with heavy drinking and smoking. She told me early on, after she had first found that telltale lump near her collar bone that, "I knew I shouldn't be drinking and smoking this way, but I couldn't be bothered to stop. I had my fun, now I have to pay the price." But instead of deciding that since the damage was done, she might as well continue to enjoy her vices, she gave up her vices. Cold turkey the night before we received the news. Some might say that she took the easy road and it was too little, too late. But I have been there with her and I can tell you that my sister looked at the fork in the road before her and she did not choose the easy path. Even though she has made it look easy.

As she has made much of this ordeal look easy. From the very beginning, Mary Claire has looked this disease in the eye and faced it with grace and courage. When something she's facing does get to her, she has her cry and moves on. As she did one day when she was told that the new chemo mix they were going to use would require her to stay in the hospital for five days instead of three. She cried, but then later that day when I called to check on her, she told me, " Oh, I had my pout and I'm over it now."

Even when we were children, I knew Mary Claire had that core of courage. She could outrun everyone in the neighborhood. She would dive off the high diving board at our local swimming pool without hesitation. She did not let her fears get in her way and she hasn't let them get in the way of her fight to get well. And she is getting well. She has amazed her doctor with the way she has responded to the chemotherapy and with how rapidly the tumors have shrunk.

This past week, Mary Claire was rewarded with a respite from all the chemo. She is not yet in full remission, but she's made such incredible progress, that her doctor has decided that she can have a break from treatment for three months to rest and get her strength back before hitting the remaining cancer with whatever it takes to take it out. We were stunned. We cried. We hugged. And we rejoiced.

At some point in time, Mary Claire will resume chemo treatments. When she does, I'm sure that she will continue her fight against cancer with the same determination she has shown so far. And I'm also sure that she will get well.

This is my sister. And she's my hero.

Past Time for Change

About a week ago, my sister Jane was honored as a 2011 Distinguished Alumna of the University of Texas at Austin. When we first learned that she would be receiving this honor, I did some research on this award and yes, it's a very big deal and everyone in the family is extremely proud of her. Now Jane admits that she is not the typical honoree. In which I mean that she doesn't have an air-conditioned box at the football stadium, hasn't given tons of money to UT, she has only been a member of the Texas Exes alumni association for the last three years, and, up until the awards ceremony, she didn't own any clothing that was burnt orange unless she really liked it or orange was 'in' that year.

So why did they pick her? Well, she does support the School of Communications and has been involved in several things through that school. Like talking to classes when she is in Austin and being a commencement speaker at the School of Communication's graduation ceremonies a few years ago. And she freely credits UT with opening her eyes to a much bigger world than she ever dreamed existed outside of Kenedy, Texas. Add to all that twenty years as editor-in-chief of Woman's Day magazine (preceded by stints as health, beauty and fashion editor at that same publication), and founding the Woman's Day Heart Awards, plus coming up with the idea of wearing red in February to support research and education about women and heart disease. And supporting women's issues and a few other things. Yep, that's all worth some major recognition.

 Jane w/ the siblings and two nieces (aka my daughters).

Jane's the one in the center wearing the burnt orange jacket.

So the entire family gathered in Austin and we celebrated this achievement together. It was a great time and as I said, we are all extremely proud of Jane. But there's just one tiny problem I had with this award. It was given to six people this year and only two of them were women. The award given is a throwback to the early fifties when the award originated: A burnt orange blazer that was obviously created because, back in the time of Ozzie and Harriet, no one could conceive that the award would be given to a woman. That blazer is highly prized by those who 'bleed' burnt orange, but it bothers me as it seems to scream 'men only' club. And given the disparity between the number of men who have received this honor compared to the number of women, it's not really surprising that I feel that way. Here's a fun fact for you: In 2003, all six award recipients were men. Only eight years ago. The most women who have received this honor in a single year is three. The number of women recognized in a single year has never been more than the number of men.

Since 2003, the Texas Exes have tried to make sure that at least one or two women are included in each group. And as much as I'd like to blame the organization because that would be so easy, the truth is we, the alumni of the University of Texas, nominate people for this award. The recipients are chosen from those nominations. And if we aren't nominating women, then women are not going to receive this recognition.

While I'm sure the men who have received this award over the years deserved it, I refuse to believe that there aren't just as many talented, successful women who also deserve it. And it is past time for a change. Quite honestly I had no idea this award existed before Jane received it. I'm betting there are quite a few alums who also have no idea. Especially women, since, let's face it, the Texas Exes are better known for tailgate parties than award ceremonies, and if you're like me, you don't give a damn whether the football team is winning or losing. But now I know and so do you. UT is fond of saying that what starts here, changes the world. So, how about we change the world? Go out there and find those talented, successful women who have a degree from UT and then nominate them for this award. Every year. Here's the link: Texas Exes Alumni Awards. If we all do it, then we can finally give the alumnae of the University of Texas the credit they so richly deserve. And if you are not a UT alum, then take a few minutes to search your college website to find out how you can nominate a deserving woman for that institution's alum awards. I guarantee every college has one.