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!