Come home, you who are weary, come home

Since I last updated you, my mom's condition has gone downhill so significantly and so quickly. Late last week I just had this feeling that this coming week her condition would change in a big way. I didn't have anything to pinpoint it exactly. I just saw the tiniest of changes that weren't triggered for any reason other than because her body was preparing the way.

For the last several weeks, my mom has not been open to having visitors. In fact, she was only comfortable with me and my sister staying with her and taking care of her needs. Completely understandable given that slowly dying is a private and intimate event. Instead, she wanted her siblings to wait and gather around her in her final hours. Nevertheless, I thought I would try asking her if she was open to visitors this last weekend. Given that I had this gut feeling that something would shift this coming week, I thought it might be a good idea to let her siblings hang out with her one last time while she still had a bit of her personality and shining light about her. And surprisingly, when I asked, she said "well, yes, that's the plan isn't it?" So on Sunday they all gathered around and while Mom was weak and not very talkative, she was still herself.

On Monday morning, I could tell that she was losing herself. I know that she had lost herself a couple times before, but this time I hadn't changed anything in regards to her medication so I knew - this was because her body was failing and not because of outside changes. That morning was the last time I was able to hear a heartfelt "I love you". As the day progressed her restlessness grew and she became increasingly insecure. She didn't want me to leave her side even to grab a drink of water. I had to try to calm her down over and over again because her mind and her body would not let her rest. By the next morning on Tuesday, her personality was gone - the real Carolyn was gone. Instead we were left with a confused and distraught version of her. Hospice came and explained that it is what's called terminal restlessness and is something all people experience as they near death. By Wednesday evening we had to completely sedate her because she was not able to get herself into a place of peacefulness on her own. Today, she has been resting and sleeping quite a bit - but it's apparent that she is still aware of her surroundings. When we talk to her, she responds in her own way. She seems to enjoy hearing scripture read aloud, "I love you's" and when we brush her hair.

Please be in prayer that she passes peacefully. We don't know how much time she has left but our guess is no more than a week.

Softly and tenderly Jesus is calling,
Calling for you and for me;
See, on the portals He’s waiting and watching,
Watching for you and for me.
Come home, come home, You who are weary, come home;
Earnestly, tenderly, Jesus is calling, Calling, come home!
Why should we tarry when Jesus is pleading,
Pleading for you and for me?
Why should we linger and heed not His mercies,
Mercies for you and for me?
Time is now fleeting, the moments are passing,
Passing from you and from me;
Shadows are gathering, deathbeds are coming,
Coming for you and for me.
Oh, for the wonderful love He has promised,
Promised for you and for me!
Though we have sinned, He has mercy and pardon,
Pardon for you and for me.

Morphine > Hydrocodone

Happy Friday, everyone! Mom is doing pretty well given the circumstances. We've switched her from Hydrocodone to Morphine a week ago. The Hydrocodone pills were getting to be too hard for Carolyn to swallow and required her to drink more water than her body wanted her to consume ... so the pills usually ended coming back up after trying so hard to get them down. Morphine has not only been easier to ingest in its liquid format, but it has also helped her mind be a LOT clearer than before. She keeps saying over and over again how happy she is and how content she is. It's a great change from when she was anxious and confused before.

Her pain keeps going up though so we have to keep increasing frequency of morphine to every 2 hours. Which means I'm getting up every two hours throughout the night. At this point, her body is preparing to shut down. She doesn't eat anything anymore, she is experiencing pain in new areas, sleeping most of the day, her breathing is unsteady and uneven, etc. She is so weak that she can't even sit up by herself. I have to help pull her up. 

She is enjoying this warmer weather - requesting the windows to be open every day. Once a day we try to get out on the upstairs back deck where she sits in her wheelchair for 10 minutes to enjoy the sunshine on her face. Her pain is pretty high though that she can't stay out there for much longer than that. Some days it isn't even worth it to her and she declines the opportunity to go outside. For the most part she doesn't leave her bed.

I hope you are all enjoying this beautiful weather as well. If you see a robin, say a prayer for Carolyn! She loves loves spotting robins in the spring time.

Sweet Will be the Flower

Since my last post it feels like time has barely inched forward ... stood still in fact.

In the last two weeks Carolyn's health has leveled off and seems to be maintaining itself. She is still confused, still sleeping a lot, barely eating, nauseous ... but she is also still (barely) walking, still eating a bit here and there, still drinking water, still able to hold a (confused) conversation for 5 minutes.

These last few months have been the most stressful and insane experience of our lives. Carolyn's health will dip significantly one day and then over the course of a week it will start to get a little better, level off for another week, and then a week after that she will dip significantly again and repeat itself. So over the last few months her health has gone downhill overall, but with varying levels of ups and downs.

Her primary cancer doctor had always told us that her last days would go really fast. That one day she would be normal and then the next day she would decline significantly and then be gone within a week. This expectation had made it excruciatingly hard on me and Melissa as we were always asking "is this it?" "is it now?" "or wait is this it?"

Then enters Hospice. Our hospice nurse told me she didn't know why our doctor would tell us that she would go so suddenly. She told us that it would be slower ... and always cautioned that she probably had more time than what the doctor said. If you remember, back in December he said she had a couple months left. When Hospice came for the first time in January she said "No ... I think she has a few more months still. I would be surprised if she passed away within the next month or two." So then what were we to think? Do we believe the doctor? The nurse?

Fast forward to today ... and I'm realizing how right the nurse has been all along. This wasn't going to be a quick ending. Instead, it feels like it could go on forever. Last week, our nurse told me that she thinks Carolyn has at least a couple more weeks. I was devastated to hear that news. Carolyn's current state is no way to live. Sleeping for hours on end. No eating. Pills every 6 hours. Staying in her bedroom for days on end. And more gruesome details that I won't get into. I chose not to tell her that she still had a little ways to go ... I was afraid it would break her heart. She is SO ready to go and see Jesus.

Well the last few days, Carolyn has been anxious and frustrated. She asks "When is it time to go? Why am I still here? We need to call the doctor and ask him when I am going." So I finally broke the news to her that she still had a little while longer. This made her so sad that she had a breaking point a couple nights ago of severe depression and frustration. She told me that she cried out to God and asked "Why? Why won't you take me?" And through her confused and sad state God told her, "I am here. I am always here. You have to trust Me." And she was comforted. One of her favorite verses that she used to always tell me when I was anxious or upset was "I will never leave thee nor forsake thee." She clings to those words now.

This has been a difficult time not only for Carolyn but also for Melissa and I. Melissa isn't able to take a lot of time off work because her employment doesn't offer any sort of FMLA (although she did choose to take the last couple weeks off). So she is balancing not only her work and kids but traveling between work, their school and driving over to my place to spend time with Carolyn. My work has been gracious enough to give me the time and support I need to take care of Carolyn as her primary caregiver. But this has put stress on my team and the organization. I hardly ever get to leave my house because Carolyn isn't comfortable having anyone else (other than Melissa) watch her. So I'm starting to get cabin fever along with depression. There is nothing worse than just sitting for days and days in one room watching one of your favorite people slip away before your very eyes. Or in my sister's case, to know that your mom is slipping away and you can't be with her. There is no winning in this situation.

I'm reminded of a Beth Moore study I did when I had recently graduated college. It was a study of Esther. And Beth said something that has stayed with me ever since. (this is paraphrased) "What is the worst thing that could possibly happen to you? Close your eyes and go ahead - imagine it. What was it? Now cling to this - If ______ (fill in the blank with that worst thing), then God. THEN GOD." I think she then went on to say something about God swooping in and cherishing His loved ones (she has a knack for making God feel so real and personal). Anyway, I had imagined several "worst possible scenarios" in that moment. Ironically, one of them was my mom dying. So when the news came - that dreadful day - I told myself "If Mom dies of cancer, then God. If Mom dies of cancer, then God. IF MOM DIES OF CANCER, THEN GOD." I had to say that to myself over and over, while her reaction as soon as she found out the extent of her cancer was "I get to see Jesus soon!" with a smile on her face.

Ye fearful saints, fresh courage take
The clouds ye so much dread are big with mercy
And shall break in blessings on your head.
His purposes will ripen fast
Unfolding every hour
The bud may have a bitter taste
But sweet will be the flower.
- William Cowper