Saturday, March 22, 2014

Heartbroken

Sorry for the lack of post yesterday. I had a really hard day, and I just didn't have the energy to write a post. I spent the entire day with Mark. My mom and I went to the group home at 9:00, because we knew the hospice nurse would be coming to evaluate him at 10:00, and we wanted to be there. Nothing went as we'd hoped.

Ever since December, when Mark was hospitalized and diagnosed with Stage 4 lung cancer, my parents really wanted to take him to their house under hospice care. Mark is very comfortable when he goes to their house, and he's spent a lot of time there over the years. Mark and my dad have been very good friends for 35 years, and when my dad mentioned to Mark about going home with him, Mark was thrilled.

Unfortunately, because Mark has a nephew, we don't have guardianship or durable power of attorney, so we can't make any medical decisions for Mark. When the hospice nurse evaluated Mark, we were hoping that she would find him competent enough to sign himself into hospice, and sign over durable power of attorney (decisions for medical care) to my dad. It was really hard having to explain to Mark that the treatments didn't work, and that he wasn't going to get better. When the nurse asked him where he wanted to go for the rest of his life, he told her several times that he wanted to go to my dad's house; but when she asked him what the date was, he thought it was 2007. She said he wasn't competent to sign, and because there was a living blood relative, Mark's nephew had to sign the papers.

They contacted Mark's nephew, and he did sign Mark into hospice (which we were grateful for), but he decided to take Mark to his house instead of letting us take care of him. Since we aren't blood relatives with Mark, there was nothing we could do to change it. So today at noon, Mark will be going to his nephew's house. His nephew said we can visit if we call first, but I didn't want to assume that would happen, so I acted as if yesterday was the last day I would see Mark.

Mark was very tired, and could hardly open his eyes all day. My mom and I sat with him for about eight hours, and he just wasn't very lucid when we tried to talk to him. He did sip some of the strawberry shake I brought him, and he took a few bites of broccoli cheddar soup (from Panera!). But mostly, he slept.

When it came time for us to leave, I had a heavy pit in my stomach, knowing it was likely the last time I'd see him. My mom asked if I wanted to spend a few minutes alone with him, and I said yes. It was the strangest thing--once we were alone, Mark opened his eyes, and really SAW me. He kept his eyes open while I told him everything I wanted to say. I could see that he actually heard me and understood. Those couple of minutes were the most lucid I've seen him recently, and I felt really good about leaving like that. The last thing he told me was, "I'll be okay". I needed to hear that, and I think he knew how much I needed to hear that.

I turned on his favorite Jackson Browne CD for him, and he kept his eyes open long enough for a picture :)


It's my hope, more than anything, that Mark's nephew really wants to take good care of Mark, and make his last days the best they can be. I want Mark to feel loved during the time he has left, and I hate feeling so powerless. I really hope that the hospice nurses make sure that he's getting the best care, too.

I'm just so sad right now. I've never felt this much grief before. I'm very lucky that nobody really close to me has ever died; but this is the first time I've ever really experienced this, and it's awful. I've spent the last four months seeing Mark a few times a week, and trying to make him as happy as possible, despite the cancer. He has made an enormous impact on my life, and I just wish that I could do more for him.

Again, I am sorry for such a downer of a post. I feel bad, because with the Runner's World and Woman's World articles out right now, I've gotten some new readers, but all I've written about this month is death and dying! On the bright side, I did manage to get out for a run yesterday evening. I ran six miles, even though I was completely drained, and I'm glad I did it. Mark was excited for me to go to San Diego and run with my Ragnar team, although I was prepared to cancel my trip to stay and take care of Mark; but now, I plan to go run because he would want me to.

I'm not sure how consistently I'll be posting for the next few days, but I want to say thank you all so much for your kind comments and emails. My mom and I were both very touched by how supportive you've been, now and for the last few months!

49 comments:

  1. Hi Katie, I've been slowly making my way through your blog and am now up to date. I'm so sorry about Mark and that your parents can't bring him to their house. You all have put some much time, energy and love into his care, and that's a beautiful thing. Praying for peace for all of you.

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  2. Katie, you are a strong and amazing woman. Mark is so lucky to have you in his life. When my grandfather passed I had a tough time but a quote from Dr Seuss I like to remember is "Don't cry because it's over, smile because it happened." You will take away so much happiness from knowing and caring for Mark. It is OK to grieve and write about it, it is your blog and you write what you want. Hang in there and know that your readers are here to support you!

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  3. Katie, you have done so much for Mark and you did all you could. Mark may not be lucid enough to sign power of guardianship over, but you know in your heart he is "there" enough to know what you did for him, how hard you tried, and how much you love him. It is sad that his nephew who didn't seem to want anything to do with him before has suddenly taken this interest in his Uncle at the end of his life because it prevents you from taking care of Mark at this stage. However, everything happens for a reason. You saw Mark this last time looking as good as could be. His nephew's selfishness just may be a blessing in disguise. Remember Mark like this and cherish those memories. Once he goes home, I am sure the happy go lucky Mark you know is just not going to be the same due to the deterioration. You are a good person Katie. Mark and your God know that. I pray he rests easy for his last days but at least he has your good memories to reflect upon now which he wouldn't have otherwise.

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  4. Katie-- Your story about Mark and all you've done for him over the months shows all of us (your readers) a very important aspect of exercise and weight loss. That real life happens. I know everyone appreciates that you give a real depiction of how maintenance goes, and this is part of it. Just know that you are in our prayers. We've been trying to teach our 5-year-old to think before we say our prayers (since she just automatically prays for a little brother!!), and today I asked her if she could please pray for my friend, Katie and her friend, Mark. So-- guaranteed that you'll be in Ru's prayers for at least a month or two. :)

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  5. Focus on the great memories you have of Mark and what an impact he made on you.

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  6. I've been reading for a little over a month or so now, but have not commented often. Sorry to hear of the sudden turn for Mark. Prayers to all. Too bad is nephew wouldn't let him go with you guys. I hope they have a good relationship and he will be well taken care of. I also hope you are able to get a few more visits in. Take care of you, too!!

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  7. I'm so sorry Katie. Mark is lucky to have your family in his life. He knows it too. ((HUGS))

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  8. Praying for you, your family and for Mark during this difficult time!

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  9. Hugs, blessings and peace to your family and to Mark, Katie. Your blog covers a wonderful gamut of games, challenges, graphs, ideas, and creative day to day gearing up for weight loss and maintenance. From recipes to running plans, from binge free streaks to surgery advice. You give all of us a friend on the slippery slope to support each other in gaining our footing. Including real life coping with heartache and sadness - thank you sharing the front and center relationship you have with Mark and inviting us into your life to help care for him (setting up the PO box for the cards) Thank you for letting us navigate with you, in all types of maintenance races and marathons. I will pray Mark's nephew will have a softened heart and allow you to hold hands with Mark through the finish line and into the next race. And I am so thankful your family has been with Mark so significantly in the recent months and past years.

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    1. June, I do not know you but your words just really touched me...I even got a little teary! Your words could not have been more perfect...."I will pray Mark's nephew will have a softened heart and allow you to hold hands with Mark through the finish line and into the next race."

      I just felt the need to say something and I hope you have a wonderful evening.
      -Bridgette

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  10. Many prayers to Mark and your family. I feel like I have gotten to know Mark over these last few months. He really has been remarkable. I cried as I read this post today. Keep running, it will be your saving grace once again. And don't ever apologize about what you post. This is real life. And sometimes, life sucks. You have to go through the emotions now. Thank you for sharing your journey, in so many ways, with all of us. Thinking of you and Mark.
    Carol Tarby

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  11. I have just started following your blog and it is so inspirational! I'm so sorry for the situation with your friend Mark. I will pray for peace for all of you!

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  12. Katie I am sorry. I'm thinking about you and Mark. I hope you get to spend time with him real soon

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  13. Don't know how comforting this is but I truly believe everything happens for a reason. Sometimes we may not know what that is but I really believe things turn out the way they are supposed to be. I've been reading your blog for quite awhile. Both of my grandparents, whom I was very close too, passed away within a month of each other last year and it was just after we moved out of state. It was really hard on me and my family but something I realized and will never forget is to make sure to first and foremost take care of you. You really have to make sure you do this. If you need time to grieve then do it, Do what YOU need. Hopefully this makes sense and helps. Prayers and thoughts are with you, your family, and Mark.

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  14. Praying for peace for you all.

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  15. Oh, Katie. I'm so sorry to hear this! I've been reading about how hard this is all for you and you are in my prayers!

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  16. Katie, first of all, please don't worry yourself about new readers being bummed out. It is your blog, you are a real person and this is real life. Real life isn't always pretty, and if people can't deal with that, oh well. The only thing you need to worry about is you and yours right now. Please accept a huge virtual hug from me and my husband, and you and Mark have certainly been in my thoughts since all of this started. You and your family have given such happiness and love to Mark. How many people going through a terminal illness have such a loving support system, including delicious junk food and treats? You and your family are amazing Katie. I am wishing Mark peace, and your family comfort.

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  17. Sending many prayers for Mark and your family, most of all for peace for each one of you. I also wanted to say Thank you for looking after and showing love to Mark. My son has severe special needs and its one of the thoughts that weighs most heavy on my heart, who will be there to love him when his mum and dad are gone. Reading your posts about Mark has restored my faith that God will take care of my special boy, and i pray he will have a family like yours that will step in at the end if there is no one from his own family that can.

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  18. Oh, Katie, I am so sorry about this. It's bad enough that Mark has taken a turn for the worst when you least expected it, but I am also so sorry that he was not able to go live with your parents as planned. My thoughts are with you.

    Dede

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  19. Thinking of you Katie, & Mark & your family. *hugs*

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  20. I'm so glad you updated your post as I was so worried about Mark and you. I know it must be incredibly hard to have to say goodbye under circumstances that weren't what you and your family had hoped for. I've lost many people close to me, including my Dad, 14 years ago this coming May 10 and nothing prepares you for the loss. You've changed as a result of having Mark in your life - you admitted that yourself and for that, you should be forever grateful as Mark is a wonderful person. I wish you, Mark and your family all the best and again, you will all be in my thoughts and prayers.

    Hugs!

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  21. Your posts about Mark have been heartbreaking, but all at the same time, they have reminded me what life is all about. I reminds me to live for the moment - the here and now. I do not know how you summoned the strength to say goodbye to Mark. I will not soon forget your example of bravery, courage and kindness.

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  22. Sometimes, I just don't have the words. I'm sorry for your grief and for Mark's prognosis. Blessings to you and yours.

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  23. Katie, I'm a fellow runner and have been reading your blog for awhile now, but have never commented. I am SO sorry about Mark, but so inspired by all you've done for him and all he's taught you. I will be praying for him, as well as you and your family. What a gift you've had in him.

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  24. Sweet Katie

    Today, I finally gathered the strength to explain Mark's decline to my husband and our 10 year son. We've all shopped for his cards, his gifts and taken his packages to the post office .... the number of people his love and joy has impacted is countless....

    I'm so glad you had the chance to spend time with Mark.... I spent 14 years as an ICU/CCU nurse... and I'm completely confident that he did hear and understood you.

    Our son asked that I relay a message for him.... he said : "tell Katie that Mark will always know her love for him because your heart always feels, no matter where you are, that never changes ...."

    As always, I'll keep you and your family close to my heart and in my prayers. May the grace of God fill you with peace...

    Mark and your friend,
    Kimberly from NC

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  25. I'm so sorry about this latest development. Praying for you all.

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  26. Based on your lack of post last night, I had the terrible feeling that something bad had happened. I'm so, so sorry to hear how things are turning out...especially that he won't be able to go back to your parents house-that's just heartbreaking. I'm sure the hospice nurses will have his best interest at heart as they care for him. Hospice nurses as a whole are absolutely fantastic You, Mark and your family have been in and will continue to be in my thoughts. I know how incredibly sad you are but you must always keep in mind how this tragedy has brought you so close to Mark. Keep that in your heart and in your thoughts and they will guide you through this sad time.
    Bridgette

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    1. Oh, and I also meant to say that I agree with several of the above posters that you really MUST remember to take care of yourself. Running last night couldn't have possibly been something you really wanted to do after the day you had but taking care of yourself is so important. It will give you the strength to get through some very hard times that are sure to come as well as to be strong enough to help your family-your parents, Kids and Jerry especially-get through it as well. My mom has been taking care of my 92yo grandfather since September and I remind her of this all the time. She reluctantly agreed to take a short vacation somewhere warm with her husband this week and I couldn't be more happy to step in and take over for her so she can rest.

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  27. Oh Katie, I am heart broken for you. Praying for comfort and peace for you, your family, and for Mark. ((Hugs))

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  28. I've recently found your blog (I was searching for ideas about WW Simply Filling) and I've been very very inspired by you. I'm so sorry about your friend and especially about this turn of events. You, Mark, and your family are in my thoughts!

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  29. First, I don't think you should feel bad at all for writing what you feel here on your blog. I have followed along with all of Mark's journey these past few months and know how very much you and your entire family love him. I'm so sorry that you are having to say good-bye sooner than you anticipated.
    Huge hugs to you!!!

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  30. Sometimes things in our lives are happy, sometimes sad and you should feel free to share both. So sorry for your sadness. Praying for everyone involved.

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  31. My heart aches for all of you. I am praying each day that you all find peace and comfort.

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  32. So sorry...I do hope you get to see him again. That the nephew makes is easy for you. Does he have your number in case Mark asks for you? I sent three new postcards to him yesterday...---Mishka

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  33. My heart is aching for y'all. I will keep praying for Mark.

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  34. I'm sorry you guys weren't able to get the nephew to let your parents care for him. Know that the past few months were made so much more joyful because of you and your family's visits and love. You said what needs to be said to him, take peace in that and the gift you were given of him being able to see you and be fully lucid for that moment. (((HUGS)))

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  35. Hi Katie. I have been reading your blog for over a year now but have never commented. After reading tonight's post, I couldn't resist. Your post tonight affected me in a way I never thought possible. I have loved reading about Mark and the affect he has had on your family. However the part that really moves me is your family's dedication and love for him. You have made him part of your family and my gut tells me he will cherish that forever. I hope you can understand the affect you have on people and sharing your love for Mark has just made us see how truly genuine and kid hearted you are. God Bless you and your family and most of all Mark.

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  36. Hi Katie, im so sorry to read all this and im shedding a few tears for your family and for Mark..his nephew sounds like a bit of a jerk. He should be taking Marks wants into account. I know the hospice here in Missouri is pretty good, my mom was in it when she passed away last year. You are all in my prayers.

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  37. So sorry to hear of yet another sad turn of events...but I'm glad you at least got to have a good moment with Mark before you had to say goodbye. Hang in there.

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  38. Truly sorry to hear this - I know this is a rough time. Have faith and you will get through it. This makes me heartbroken for you. Truly sorry!

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  39. May you know God's peace and comfort, Katie, as you comfort Mark.

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  40. St├ęphanie from BelgiumMarch 23, 2014 at 9:46 AM

    I'm so sorry Katie ! Big hugs to all of you.

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  41. I don't comment much being a bit of a lurker but having lost both my beloved Granddad and my Dad to lung cancer I have been where you are and just wanted to send ((((hugs)))).

    You have been a wonderful friend to Mark, a sister, really and you should be proud of how you have supported him these last few months.

    The next few days and weeks will be harder than you can imagine, but be safe in the knowledge that you loved and were loved back by a special man.

    The pain gets better sweetie, you'll never forget it but you will he through it, I promise....

    S x

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  42. Katie, I'm so sorry. :( I love reading about Mark and love seeing his little face. You and your family are such a blessing to him.

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  43. (((Katie))),
    Sending lots of healing thoughts and prayers your way for Mark and all those who have had the honor of knowing him. I know it's hard to take care of yourself right now... unfortunately it takes time. I recently lost my wife, and am trying to deal with not being able to save her, along with every other emotion. It's like a human blender of feelings. If you ever need to vent, or whatever, let me know. And just know, Mark loves you and no matter what happens, he will always remember these past few mths you've been with him, making him happy.

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  44. Katie,
    I am new to your blog (just started reading it today actually). I am sorry to hear about Mark but happy he likes his new room. My dad died from lung cancer just before Christmas in 2003. We had just moved him to the hospice home. He was only there a few hours. We stayed with him just over an hour and then went home to get his Christmas presents. My stepmom called for us to come back as soon as we could. My present for him was a picture of us on my wedding day 3 months earlier.I loved him very much but we had not spent much time together over the years before his death. I regret everyday not spending more time with him. I'm glad you got a chance to really speak to Mark yesterday. I know you are struggling now but remember you are surrounded by people that love you. My heart, my thoughts, and my prayers go out to you and your family.

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  45. Katie I'm so sorry his health is deteriorating so quickly but all you've done for him is amazing. I am sorry you're in such pain and Mark as well. You both will be in my prayers.

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I'd love to hear from you! I read all of my comments, and if you have a question, I do my best to respond; sometimes, however, I get busy and forget to go back to reply, so if it's important, just email me! :)