I know there is hope.
There is always HOPE.
And Faith.
And Love.

Thank you for all of your kind comments yesterday.
It was a difficult weekend and today wasn’t a lot better.
I did want you to know that I was comforted reading your comments and felt kind of silly for posting that I wasn’t very hopeful at this point.
Sometimes, it’s just difficult to see. But it’s always there.

I know that.
Thanks for helping me remember.

I have started discussions with our hospice team to enroll Chad in full-time care at an outside facility.
I have been in turmoil about this decision, but knew that our situation would probably come to this.

This is, by far, the most difficult decision I’ve ever had to make.
There are so many things to consider.
And in case you’re curious, here is my thought process.

First, I am trying my best to preserve a positive experience for our daughters.
They have seen and heard so much in the last few weeks — and Chad & I never wanted them to experience the harsh reality of end stage brain cancer. We weren’t exactly sure what to expect, but we had discussed it prior to his terminal diagnosis.
He didn’t want them to see him this way.

Also, the girls (and I) need to get used to the idea of Chad not being here.
He is dying. And one morning, day or afternoon, he just won’t be here anymore.
That will be traumatic for them, even though I have prepared them for the coming events as best I can.
A move to an outside facility will help ease their anxiety and fears. Or at least I hope it will.
We will be able to visit and stay with him as long as we’d like, but we will also learn to adjust to a life without him physically here at home.

As the disease progresses, he will become increasingly agitated. I’ve seen it first-hand in the last couple of weeks.
He has said and done things recently that are clearly NOT him.
And I do not want our girls to remember that part.
I do not want them to see that part.
I want to shield them from the tough stuff as much as possible.

Chad is having a lot of seizure activity; most of which are manifested as falls.
He trembles a lot in bed while sleeping. Seizure.
He stares into space, almost catatonic. Seizure.
He is taking an extraordinary amount of anticonvulsant medication. And still, the seizures break through.
We are getting to the point where traditional forms of his medications just aren’t cutting it.

Today, we noticed his left leg is weaker than it has been. The toes on his left foot are starting to curl under, just like his right.
He has such a hard time trying to walk – but he tries anyway. And he falls. A lot.
He has been using the wheelchair more in the last few days and doesn’t resist my urges to bring it to him.
I don’t want him to hurt himself — or someone else who may try to help him up.

Eventually, and I use that term very loosely because I know it’s coming sooner than later, he will not be able to swallow.
When this happens, he will be unable to take his medications. He will need an IV. He can, technically, have this at home.
But, again, I do not want our children to have memories of their father receiving all nourishment and medication through an IV.

His sporadic incontinence is also becoming more regular. Another thing I never wanted the girls to see or remember.

There are things that also make me feel guilty about a move to an outside facility.

I do not ever want my kids to think I sent Chad away or that I didn’t love him anymore. The girls take things well, but I often wonder how much they internalize. Will they feel that daddy is being punished for being sick? Will they think it’s their fault that he had to go away because they were being too loud or their toy-strewn bedroom floors made him fall? I’ve assured them that none of this is their fault — but I also know how kids think. They will think it is their fault, at some point.

In the very beginning of this journey, nearly three years ago, Chad told me that he would not want to die at home. He wanted to keep the girls and I away from the difficulties as much as possible. At that time, I was shocked. He did change his mind, after all of hospital admissions in 2009. He wanted to be home, in a comfortable environment — and away from the sterile and impersonal nature of a nursing home hospital.

I struggle with the thought of what life will like without him here.
I feel terribly guilty already about the thought of him anywhere but here. He belongs here. Our life is here.
I cannot imagine the guilt I will feel every single day when I know he is not able to experience life with me, with us, anymore. I will get to go to school functions and be the parent my kids deserve; while he will be immobile in a hospital bed.
It’s just not fair that my life will continue to be normal.

I also have the overwhelming sense that I am failing my husband.
That I am betraying my marriage vows.
That I am letting him down.
That I am letting others down.
I do not want people to think I gave up or that I wasn’t strong enough to handle it.
I am trying to do what is best for my family, for my children. I am trying to keep everyone safe and it’s incredibly hard to juggle the emotions of a situation like this.
No one else is here daily to witness the decline and sudden bursts of energy that leave me confused, upset and bewildered about Chad’s health.
I see it. Every. Single. Day.
I live it. Every. Single. Day.

I worry about the financial strain it will put on us to move him to full-time care.
I worry that he will be angry with me.
I worry that he will resent me and I will bear that burden for the rest of my life.
I am consumed with the thought that I am being selfish instead of selfless.

It all comes down to a few pivotal points.

– This decision is about safety. For everyone. Mainly Chad, but also the girls & I.
– This decision is out of love. I love Chad and I want the best for him. I’m certain I am not able to adequately give him the best possible care.
– This decision is about the emotional well being of our children, who should never have to witness this kind of cruel health decline.

As stated previously, I’m not sure when this transition will take place. I should know more later this week.

I’ve prepared Chad, though I’m not sure he remembers talking to me about it.
He was quite agitated that I brought it up; but seemed to understand when I laid out my thought process for him. He knows he
is declining quickly and I think he knows this is the best decision we can make at this time.

I will keep you posted.
Thank you, as always, for your support for our family.

This entry was posted in Chad, Chatter, the girls. Bookmark the permalink.

20 Responses to HOPE

  1. Vanessa says:

    This must be so hard and heartbreaking for you in so many ways that I can't even begin to understand. However, I do know that you have nothing to feel guilty about. You have always had your family's best interests at heart and anyone who knows you, knows that you love Chad with all your heart. You have been such an example of what its like to unconditionally love someone and their family. As always, I will continue to pray for you and send a hug. Please let me know if there is anything I can do.

  2. Lawpirate says:

    Oh Skye, I'm so sorry that your family has to go through all of this. I am amazed at how calm and wise you are. Your concerns all around are so real and well thought through. Your girls are lucky to have you. I know that you have lots of support, but I wish I could help you!

  3. Ehoneycutt says:

    God Bless your whole family. I think you are an amazing person. I hope when my time comes there is an angel like you to care for and make decision for me. Everyone knows you will do what is best for your family. Thinking of you.

  4. Meg says:

    Oh Skye, I wish there were something I could do to help ease your mind. I know that feeling guilt is a huge part of this process. I remember my mom being in a hospital bed in our living room and I hated those memories. She was hospitalized before she died so none of these big decisions you have to make came into play – however I think for the sake of your girls you are being very rational and logical and Chad would completely agree if he were in the state of mind to do so. Please let me know if you need anything at all. Praying for you all the time.

  5. Candy says:

    Skye baby,No one will ever doubt the love and strength and courage you and Chad have both demonstrated throughout this ordeal. You have been, and continue to be, completely selfless in your thoughts and actions. Guilt! Really…? That has no place here. You have set an example of love in action from which your girls (and all of the rest of us) will benefit forever. As they grow older and understand what love, compassion, dignity and class truely are, they will be as awestruck by thier mom as the rest of us are. Much love surrounds and supports you. Aunt Candy

  6. Camillebwatson says:

    Skye, I agree with the below statement NO ONE will EVER doubt the never ending love, strength, courage, compassion, selflessness that you have given Chad… and if they do.. TO HELL WITH THEM!!!!! You are an amazing wife and mother. God loves you all very much, and he will help you make this tough decision. I pray that you have peace about your decision, I pray God take away your worries, anxiety.. I pray God give Chad peace and understanding…and take away his pain. If you need anything please call, day or night, no matter what time… I timed the drive.. 6 minutes.. I can be there in a “flash”.. We all love you and are praying for you!

  7. Debi says:

    We all know how much you love your husband. Soo sorry you have to make this decision. We send lots of love from NY. I wish we lived closer so I could be there to help with everything. Love and miss you all.

  8. Mary says:

    Skye, I love you guys, but I am at a loss for words. Trust in God. I know you do. 🙁

  9. amy says:

    Since your family began this journey, I have prayed that you would never have to make a decision like the one now. It is easy for us to tell you not to feel guilty because we have all witnessed how selfless you give to Chad & the girls. None of us are in your shoes, but I think of ALL of us as a wall standing behind you, Chad & the girls. No matter what decisions you make we are here!! You have to make the choice that is right for your family & if someone doesn't like it or thinks that it is wrong remember what Camille said…”To hell with them”. You are such strong protector of your girls, they may not understand it now but they will one day. And then they will be in awe of you & your strentgh just like the rest of us. Sending love,peace, hope & strentgh your way.

  10. Lchorba2005 says:

    Skye – you are absolutely making the right decision. I know how hard this is. I still feel terribly guilty about putting my Mother in hospice – you have no other choice though. You have no other choice. For Chad, you, your girls. It is the best for everyone. I know it doesn't make it any easier but it IS the right decision. I wish I could take all of the away from you….hugs. Linda

  11. Bhutch78 says:

    I hate that I have no words to comfort you Skye. I WISH I knew just what to say to help you through this. All I can say is that you have done so well making decisions for your family and their well-being. You continue to think things through with both your heart and your rational mind. I have faith that you have and will continue to do what is best for you, Chad and your girls. The Lanfords remain in our thoughts each day as my heart aches indescribably for you all. You are so strong and that strength that you process is such an inspiration to me. I will keep praying for you.
    With Love, Becky

  12. Mom says:

    You don’t have to have all of the answers to make the right decision. You don’t have to please everyone to do the right thing. You don’t have to justify your choices to a single soul on earth. You only have to know that you followed your heart and acted in love. That’s the only truth that matters. (It goes without saying that I love you and am beside you every step of the way!)
    To every one of you who is supporting and encouraging Skye, Chad & the girls: Thank you for being there. Thank you for caring. Thank you for every thought, gesture, kind word or action. Each and every one of you makes a difference.

  13. Heather says:

    Skye, I just cannot fathom how much strength and courage it takes to let the whole world into your most personal and intimate thoughts. You certainly do not have to justify any decision to anyone. But Thank you. Thank you for allowing all of us to be a part of this journey. I admire the way you have upheld every vow as a wife and mother in all of the difficult decisions you have had to make. There are no wrong decisions here and there is no selfishness in you. Have faith that you are doing the right thing…. we all have faith in you. I will continue to pray for peace in your heart.

  14. Laura says:

    Skye, you are a remarkable mother and wife. The decisions that you are making are difficult yes, but they come from love and you should never doubt yourself in that. We will continue to pray for Chad, you, and the girls.

  15. heather says:

    Well, as I take a little journey of my own I cannot help but read your blogs and know that God continues to bless me through you. You are a tremendous wife, mother, daughter, and a even more amazing Child of God, your decisions and prayers are gonna get you through and in the end it will be the best thing, Print these blogs out and make some kind of little book for you to read to the girls and give them when they are older, your girls are precious to you to their Dad, and most of all to their heavenly father, you are thinking of them and that is what God tells us to do as parents he gives us our babies to take care of, and when it's time to get serious about it the decision can be “heart wretching”, but it must be done. Skye, I am so thankful to have been a part of this journey without it I don't think I could ever think I would get through my hardships, you are a true blessing to those that are going through many difficult trials or circumstances of their own. I will continue to pray for your decision, whether right or wrong in the sight of others. What matters most is what God would have you do, and what best fits the family. We all have purpose, a meaning in this Life, let God continue to carry you through yours. Much Love and Many Prayers!!!

  16. Kelly Marsh says:

    Skye … I just came across your blog and read it for the first time. No one …. NO ONE can understand what you're going through unless they have experienced it. We've experienced it.
    The decision to put Kay in a nursing home when she was to the point that they couldn't care for her anymore was agonizing for Billy and his family. But once they put her in there I can't tell you the relief they felt. No one knows the burden of caring for a loved one when you're just not able. Physically and emotionally … or professionally trained. They did it out of love, because Kay needed better care, and they got to the point that they were unable to give it to her. Did they love her any less, heck no. Someone from the family was there every day and in the end she got the care she needed. Kay died in Bethesda Nursing Home surrounded by her family and loved ones, with the professional care to keep her comfortable and out of pain and suffering. Much love to you and your family sweetie!!!! Kelly Marsh

  17. Francine_mcallister says:

    Skye – I am so sorry that your family is going through this. I read your blog and I am in tears writing you this note. I wish there was something that someone, anyone, could do to make this all go away. I know that you would love nothing better than to have the Chad back that has always been there and still is, just buried in all the pain and damage from this terrible disease. The one thing that has been constant in his life is you and you can not even think that you haven't been a godsend to him. You have endured so much more than most people could take and have handled yourself with dignity and have loved him more than anyone else could. Don't ever question what you have done for him and please don't question your decisions. You do have more to consider than anyone not living it can imagine and NO ONE could question your loyalty and devotion to him and your family. You are truly a hero in my eyes and probably in everyone else's!!! Please take care of yourself and the girls. You three are the people that Chad would want taken care of. I am here if you need me and would be glad to help you with whatever you need now and whenever. Please remember – you are an ANGEL and will see him again.

  18. Loralee says:

    Skye – don't ever doubt yourself or feel guilty. You have been so strong and faithful through everything. Keep your hope, strength and faith. You are a wonderful mother, wife, and friend, don't ever forget it!!! Your girls see your strength and will understand the difficult decisions you are dealing with. You are all, always in my throughts and prayers. Please do not hesitate to ask if there is anything you need. I love ya, friend – Loralee

  19. Savvygrace says:

    Awww Skye. (((HUGS) )) You and your girls deserve to remember the happy memories:) As always I am always thinking of you and your ability to remian so strong.

  20. Crystal says:

    My grandfather was in his early 50's when he passed from cancer. He was a kind, gentle, loving man, but toward the end he became angry with my grandmother and would even throw things around in his hospital room. My grandma said he would say very nasty things to her and the staff. I never saw him like this, my grandma never let me and she told me she didn't want me to remember him like that. I don't. Skye, I've been following your blog for a while now, (I know a friend of yours- April) and just wanted to tell you not to question yourself, nobody knows what they would do until they are faced with whatever challenge. You are doing the best anyone could hope to do! The girls will also, understand MUCH more when they are older. So, don't dwell on harsh words that might be spoken now, whether it be from Chad or them. It's a tough time. Don't forget about your own emotional well being throughout this process. Give YOURSELF what you need as well..whether it be a break, or a pat on the back. You are doing a great job.

    Prayers to your family~

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