Saturday, July 19, 2014

Taking to Her Bed

The sixth installment in my series about taking care of my sister Mary Claire in hospice.

Friday, March 21, 2014

Mary Claire is now unable to get out of bed. Little did I know when I put her to bed last night that we had seen the last day she would be mobile. The hospice nurse told us today that we should not move her now. She’s not capable of walking. She’s also having difficulty swallowing her pills. After trying mixing the crushed pills in grape jelly and that not working as well as I had hoped, I tried chocolate whipped cream. Success! She loved it. The only caution is that you simply cannot lick any that accidentally gets on your fingers. I almost did that automatically (I love chocolate), but stopped myself just in time.

Today I contacted our extended family and a few family friends to let them know the state of affairs here after a ‘friend’ of MC’s went on Facebook and announced that she only had two weeks to live. I was not happy when I woke up this morning and saw that post. But Julia immediately reached out to someone she knows who promptly dealt with the issue. Gratefully, MC is now past the point where she can use her phone to check Facebook. We have removed the iPhone from her room and have with us though just in case.

Jane arrived early this evening. Though MC had asked me today when she was coming, MC had forgotten Jane was coming until Jane went into her room. Which led to a funny Chesnutt sister moment: Jane was explaining to Mary Claire that she would have been here sooner, but that she had been sick with a cold and fever and knew that Julia wouldn’t let her in the door while she was sick. A long pause, then MC said, “Bitch.” And yes. We loved it.

It is a relief having Jane here. I had been worried about her getting here in time. And together the three of us will see MC and each other through this. Originally my plan had been to go home once Jane got here and return in a week. But it is very clear that I cannot go. Both for Mary Claire’s sake and for mine.

Thursday, June 05, 2014

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.

Sunday, May 11, 2014

After a brief break, I'm continuing the posts I wrote while taking care of my late sister Mary Claire in hospice. This is the fourth installment.

Wednesday, March 19, 2014
Today we made memories Mary Claire won’t be here to remember.  Mary Claire’s friend Sharon showed up at 11:00 am today with her arms full of crafting supplies, followed by my niece Ashley with more supplies. We dumped it all on the kitchen table and proceeded to have a major decoupage party, using scrapbook paper, mod podge, and paint. Mary Claire, Ashley and Sharon worked on birdhouses and I opted to paint and decoupage a clay pot. It was a major success and made MC so happy.

So that’s what I am going to say about today. Mary Claire was happy because we had a craft party. And I will be here to remember. As will Sharon. And Mike. We even got MC out for a while on the deck. It was a bit chilly, but it was such a beautiful day. We wheeled her outside and Ashley had music playing on her iPad.And Mary Claire was happy. She had Mike with her. And she had her best friend from childhood with her. 

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.