Near the End

The time is drawing near for Carolyn to meet her Father in heaven.

Last Tuesday, was like any other day this last month. With the warmer weather, she was able to get out of the house and be out and about. But the next day she slept almost the entire day away and kept complaining that she couldn't seem to stay awake. Thursday was much the same with a lot of sleeping and little eating. Then on Friday she was not only sleeping and not eating, but the moments when she was awake she was more distraught than normal and confused about what was happening and had trouble expressing her thoughts. Saturday/Sunday she lost a lot of her mental capacities. She herself complained that she was losing her "senses" and having trouble keeping her bearings. To date, she can barely walk, doesn't eat, and is very confused altogether. She has a few moments of clarity here and there, but they are few and far in-between.

These last few months have had so many ups and downs and uncertainty around how long she has left. But if she continues at the rate she is now, we can't imagine that she has even a week left. Saturday evening she told us that she was going very very soon. It's interesting how people know when their last days are coming. When I had last updated you a few weeks ago that we thought she had days left ... she definitely didn't agree with us. Even though she was at that time sleeping all day, confused and in pain ... she'd wake up and we'd try to say our goodbyes and she would look at us like we were crazy. Well, this time is different. Now she is the one telling us that this is it and that she doesn't have much time left.

Please be praying that she will not experience any pain and that she will pass peacefully. I fear most that her confusion will cause her to twist thoughts in her head to think things were said that are not true, or think something happened that didn't occur. Please also be praying for Melissa, her girls, and I  ... as well as the rest of Carolyn's family that we will enjoy to the fullest our last days/hours/minutes with her.

Miraculously, she was able to muster up just enough strength on Saturday evening to make it to a performance at the Indianapolis Symphony Orchestra. We didn't think she'd last 10 minutes, but she somehow made it to intermission. We know it was definitely her last time out of the house and a miracle that she was even able to go in the first place. It was the last item on her bucket list to attend a performance at the ISO. I'm so glad we were able to get out and create that one last memory together. She was so happy. <3

Slow and Steady

Happy (almost) Spring, everyone! I hope you are enjoying the gorgeous weather we've been having. Carolyn sure has! She has been getting out almost every day since it's been warmer. It's really lifted her spirits after being trapped in the house so much all winter.

She continues to do well considering the circumstances. It's crazy to think that a few weeks ago we thought she had "days" left. Since then, it's been an emotional roller coaster with good days and bad days. One day she will be like her old self, wanting to get out and go for a drive or go out to eat. And then other days she will want to sleep the entire day away and only wake up to take pills, sip water, or get a bite of something.

Nonetheless, we are still creating memories - trying to soak her up until the last drop! This past weekend she was able to go to her grandchild's birthday party, go on a carriage ride downtown, and see Cinderella in theaters. However, she doesn't talk much while we are out because it takes too much effort to think through what she wants to say, she doesn't walk much because she isn't strong and instead uses a wheelchair, and she falls asleep any moment she can get - in the car or otherwise.

God is Good.

Since I last provided an update, Carolyn's health has miraculously improved a little bit each day. Last Wednesday and Thursday we thought she had maybe a few days or up to a week left. Melissa and I even took Thursday and Friday off work because we were certain it would be her last coherent days. Well here we are one week later and she is much improved.

I asked Hospice about this and our contact - Jackie - said that it sounds like Carolyn had bile build-up that just needed to pass through her system. Really? It was as simple as that? Last week, she couldn't keep her eyes open for longer than 5 minutes before drifting. And her conversations with us were confusing and unclear - she was saying the oddest things. But then each day since then she has been able to stay awake a little longer and is getting her personality back.

However, other aspects of her health continue to steadily decline.

• She gets weaker and weaker every day. Soon she won't be able to walk upstairs at all, which means she will need to stay downstairs permanently. She stays in her hospital bed on the main floor all day. Showers in the morning are difficult. It takes us around 3 hours to get ready in the morning because she needs to take so many breaks to rest between taking her pills, coughing up mucus, getting in the shower, washing, getting out of the shower, getting dressed and depending on what's going on that day - blowdrying her hair and putting some makeup on. 
• She doesn't eat much either, but not because she isn't hungry. Absolutely nothing tastes good. So at least once every hour, I try bringing her bites of different food to eat just in case it tastes good to her in that moment. It's pretty unpredictable which means my fridge is filled with the most random food that only has a few bites taken out of it. Because of this, she has lost 30+ pounds in one month! She has to wear my jeans because her old jeans won't stay up. 
• She has difficulties with reading and writing. It's hard for her mind to grab onto things so she has to use all her concentration to read or write. Why is she reading and writing? Well she has several last minute projects she is trying to finish up before she goes. Notes to her grandchildren, etc. And I bought several recordable children's books for her to record her voice for her grandchildren to read later. Which on that topic, we bought the COOLEST book for each of her grandchildren to have called "Grandma and Me". She sits down with one of her grandchildren and together they answer questions about Grandma that gets recorded. It's so adorable and fun - and amazing moment in time captured forever. Chandler and Taylor LOVE their books. I bought one for my future grandchildren where together Mom and I recorded conversations of us talking about her. I told her that instead of giving the book to my children, I might keep it and listen to it before bed every night. :) 

Today, she had a doctor appointment at the Simon Cancer Center. I wouldn't have believed it if you told me last week that she would be able to actually make her appointment. I was certain she either wouldn't be here by today or that she would be too ill to get out of bed. Well after spending several hours this morning trying to get her ready, we were off in the freezing rain to go see her doctor one more time. 

He was surprised to see that she was still doing decently well but at the same time not in disbelief. She has been a trooper and a fighter throughout this whole ordeal that it is no wonder that she would continue to shatter the odds. So of course we asked our favorite question - how long do you think she has left? And he answered ... "You don't have days - that's for sure. But I would say anywhere between a week and four weeks." I think our jaws dropped collectively. A week to four weeks doesn't sound like a significant difference in time to the average person, but for those of us in the midst of this - that is a HUGE gap. Especially for Melissa and I as we are in difficult situations determining when to take time off work to spend with her. If she has one week left, we'd want to spend every moment with her. But to spend 4 weeks away from work is not realistic. It's a difficult decision either way especially given how much work it is to care for her. She needs someone to stay home with her at all times now and it is unpredictable as to when she would need help - so taking calls at home becomes difficult. Either way we are so grateful for any extra time with her. Thankfully, both of our employers are supportive of the situation and have assured us to take the time we need.

Please be praying that Carolyn will get the sustenance she needs each day - physically and spiritually. She is still anxious to go to heaven, but we are praying that her last days on earth will not be stressful for her. Please also be praying for Melissa and I. This is a really stressful situation for us in more ways than one. So many people have wanted to see her for "the last time" and so not only are we trying to care for her needs and health, but we are entertaining guests on a daily basis. Which isn't to complain - we want everyone to be able to say goodbye and don't want to be selfish with her time. But nonetheless we are emotionally and physically drained. 

Beginning to Decline

Wanted to provide a quick update.

Carolyn's health is beginning to decline significantly and very quickly over a short period of time. She is sleeping a lot more and only stays awake for 5 minutes or so at a time. A couple times during the day she will stay awake for 20 or so minutes. She is also very weak and every day gets weaker. She doesn't eat much at all. We are fairly certain that she has very little time left. We dont know exactly how long but it is no longer measured in weeks but rather days.

Thanks, everyone, for your prayers and support!

Also the videos below should be working now. I know a few of you had problems viewing them.

Videos of Carolyn

Carolyn's health continues to gradually decline. After I wrote that last blog post, her health seemed to take some harder turns. Her nausea continues to increase and throwing up in the mornings is becoming a norm. Her leg muscles are also weakening making it harder for her to go up and down stairs. It won't be long before I'll need to be home with her full-time.

I've felt a sense of urgency in capturing her in videos so that we will be able to always easily remember her smile, her laugh, her voice ... but capturing videos isn't as easy as it looks. Candid is only interesting for a short while before your attention span is distracted. Canned videos are difficult because it's hard to come up with specific topics and you feel put on the spot. Also, she is in her PJs most of the time lately and therefore doesn't want to be videotaped. But the times where she has normal clothes on are fewer and further inbetween.

Nonetheless, I have captured a few videos over the last couple of years. I've uploaded some of them to YouTube under a playlist and will continue to add to it as time goes on. I've put them in order by length of video instead of by time. So the shorter ones are first and then move towards the longest ones. That way if you want to see her in different elements, you can do so quickly. Enjoy!

Answers to your Questions

I've been receiving a LOT of questions lately regarding Carolyn's status - so I thought I'd provide an update here.

Carolyn doesn't respond to my texts, calls or messages. I've been getting this feedback from a lot of you. Please keep in mind that you aren't the only one not hearing from her - she is getting calls, texts and facebook messages from everyone frequently throughout the day looking for a status check or to just say they are thinking of her. And she responds to almost none of them. If she were to respond to all of the texts and calls she is getting, she would be doing nothing else all day! So please don't be offended if you texted her and didn't receive a text back. What she has most appreciated lately are cards from people! If you want to send her a card - please message me for my address. They really brighten her day - and THANK YOU to everyone who has sent a card or flowers. They remind her that people love and are thinking about her.

But how am I supposed to know how she is doing? I know that this is a stressful time for everyone because you dont know what is going on and you want to make sure you haven't missed anything. I know because I've received a LOT of questions from people. If something significant changes in Carolyn's health I promise that I will either update via this blog or on facebook. 

Ok great. But how is she doing?? Ok now that I've got the above points out there - I'll explain how she is doing. :) She is honestly doing much the same as usual. Nothing significant has changed which is why you haven't received any updates from me. Everything about her decline in health has been SUPER gradual. And hospice continues to confirm with me that in her case, she will decline gradually. At this point, she sleeps a little more as each week progresses and gets a little bit more yellow in the skin tone and in her eyes because of jaundice. It's so gradual that I have a hard time even seeing the changes. She is able to still walk on her own but can only walk short distances and can't stand for very long. She can walk up and down the stairs by herself and can get herself something to eat as long as it is pre-prepared in the fridge. 

Here is a great article (the "controlling symptoms" portion) that explains all of the symptoms she is currently experiencing.

How much time does she have left? It's hard to say. The doctor told her that she has been a miracle all along and that she shouldn't still be here. He refused to tell her how long he thinks she has. Now ... back in December he told her that once you start to jaundice you have anywhere between 6-10 weeks left to live. Next week marks the 10 weeks since he had said that ... and I can tell you she does NOT have only one week left. In fact, Hospice today told us that she doesnt understand why our doctor told us only 6-10 weeks ... that people can live longer with jaundice. She thinks Mom has another month or two to go. But nobody can really say.

What can I do to help? As I mentioned above, sending cards lifts here spirits. As she starts to go down-hill more there might be other needs. But right now that is about it!

Thank you for being you! BIG thank you to Uncle Ron and Aunt Kathy for dropping off some food and to my friend Katelyn for dropping off some as well! A BIG thank you to Mary Ryan and Tom and Amy Flynn for sending flowers. A BIG thank you to everyone who has sent cards (so many to name). A BIG thank you to Aunt Kathy, Debra and all the other angels who are helping Carolyn with a special project to give to Melissa and I. A BIG thank you to Uncle Leon for creating an amazing slideshow of Carolyn! I'm hoping to upload it to youtube so that you all can see it!

Be strong and take heart and wait for the Lord

I know that I am past due on an update! I'll give the quick highlights below:

Clinical Trial - Fail: The clinical trial did not go well. It made Carolyn so sick that she couldn't eat for a week. She lost a lot of weight and to this day hasn't fully recovered from how monstrous the trial affected her. The only option to continue the trial was to cut the dosage in half - we felt cutting it in half was still going to make her too sick that we exited the clinical trial.

She's Moved In: Carolyn has officially moved into my house where I can help take care of her - prepare food, wash her clothes, and provide a warm, clean environment that is worry free for her! I like to think she is living like a queen. :) Melissa and her girls come to stay on the weekends where she helps take care of our mom's needs as well. Truly she is better at things like that than I am.

Current Health: She is starting to sleep a lot more, but is still awake for most of the day. Her body is starting to slowly shut down and her metabolism has slowed significantly that she now needs very little to eat. She snacks throughout the day on popsicles, flatbreads, and (her favorite) Tomato Potato Soup (a family recipe). She has low energy and is for the most part pretty weak. She hates getting ready in the mornings because it takes up so much of her energy.

Severe Cough: She started to develop a cough in August and as we moved into the Holidays it only got worse. By Christmas it was so bad she almost went to the ER. But because that would mean she would have been there overnight during Christmas, she decided to wait until her next doctor visit. The doctor took some scans and couldn't identify why she was having such a strong dry cough. She has not developed any water on the lungs or anything like that - so he is puzzled as to what the cause could be. He prescribed her some medication that has done WONDERS for her. It's like she is a new woman! She can now have longer conversations and has a lot more energy!

Jaundice: As her liver starts to fail and shut down, her body will move into Jaundice. Her skin and eyes will start to turn yellow and at that point has anywhere between 6-10 weeks left to live. In December the doctor said that she has started to Jaundice which starts the process of the 6-10 weeks left ... but then her most recent visit he said her coloring looked a lot better. We're not really sure what to think since Carolyn's skin has always had an olive complexion and she doesn't look any different to us. At this point we know she doesnt have a lot of time left and whether its 4 more weeks or 2 months, we are just trying to enjoy our time with her as much as we can.

Hospice: Hospice came to visit for the first time. They gave us a run down of what the end days will look like. I guess I didnt realize that Hospice is not in-home nurse care. Instead, they are there to enable ME to be her nurse. So as Carolyn's days come to an end, I will be administering her meds, morphine, etc. As such, I will have to take medical leave from work to help take care of her. That was a little unexpected, but Melissa and I would do anything for our mom so it doesn't bother us too much. As of now, Hospice will be coming once a week to take her vitals and to get her any new medications she might need.

Social Life: She has the most active social life I've ever seen right now! Her family has been taking her out to dinners to spend some 1:1 time with her and this weekend we'll be getting together as a larger family to look at old photos, etc. Last weekend Melissa and I took her out to get a pedicure and then I took her to St. Elmo's as she had never been before! It's the little things...

Her new address: If you would like to send her cards, flowers, etc at her new address (my place) - please message me on Facebook and I will provide you with the address.