When Joe asked one of the hospice aids today what more we could do for Laura, the reply was “permission.”
Laura is tenaciously hanging on. It is very hard to communicate with her, but when she is awake she often gesticulates dramatically with her hands (my favorite is when she did air quotes) and speaks a lot even though we can’t understand her. When someone unexpected appears she suddenly moves, reaches out, tries to sit up to be attentive, and “talks.” Sometimes she responds when we ask her questions. About once a day she’ll have a spurt of energy and awareness and will rise up and start walking (with much assistance). Yesterday, in fact, she headed to the top of the stairs and so we brought her downstairs for a while where she sat at the table for maybe a half hour while she nervously paged through a book, picked at crumbs on the table, and drank a few gulps. (I took some extended video of her as I have done frequently in the last three weeks, although I don’t know if I will ever want to watch it. Probably too morbid. But I have this desire to keep her alive on film.)
She has been very agitated and her arms jerk regularly. Repeatedly she has nervously removed clothes while lying in bed. I gave her a soft ball to squeeze to try to calm her hands. She hasn’t much slept for at least 48 hours. It seems like she is unconsciously fighting death by fighting sleep. Or more generally, she’s unconsciously fighting to maintain control. Sometimes when I understand a word I can make a leap to link it to a sentence that she might have normally said and it usually seems to be associated with some part of day-to-day life that she’s still trying to keep track of: taking care of guests or asking if there are any appointments, for example.
It would be nice if there were an easy way to tell her not to worry, that everything is under control, that she should relax — for good. But I don’t know what it is.
I became so exhausted myself responding to her through the last three nights that last night Joe, Natalie, and I took shifts being with her. But finally this afternoon Laura fell more deeply asleep and she still appears to be sleeping soundly now, interrupted only occasionally by a still very strong cough. I hope she sleeps well.
Permission
Wed, Oct 1st, 2008 10:37pm by dkulp
Tags: Uncategorized
32 responses so far ↓
1 Heather // Oct 1, 2008 at 11:30 pm
Sending all hugs & kisses in advance of next weekend. Tell Laura I love her.
2 Mark Taggart // Oct 1, 2008 at 11:59 pm
I don’t think I’ve ever understood the meaning of the act of “fighting cancer” as clearly as I have now, after reading this. Laura is my hero for struggling so hard to fend off chaos & stay here, with you all. My main wish is for her to fight without suffering, because you’re right– with you next to her, she doesn’t have to worry.
3 Rocky // Oct 2, 2008 at 12:48 am
Dear David,
Hospice folks are very experienced. “Permission”
can be very helpful at this point should you and yours be ready to grant it.
I care so very much about all of you. Please know that and feel all the love of everyone around you now. Lots of Love, Rocky
4 Irene Bosch // Oct 2, 2008 at 7:21 am
The love I witnessed in your family has been a blessing to us. I will be traveling to South America this morning and I wanted to leave you all with a note of friendship and wishing Laura peace.
I will not be around physically, but with all my heart, I will be next to your family.
Good bye Laura.
Love always,
Irene.
5 Aunt Cathy // Oct 2, 2008 at 8:54 am
I, too, understand the permission part. I’m not sure Laura would hear you or understand you but when it is said, and when you are ready, it makes a dramatic difference in the way she will respond. You all have given Laura everything you have, how do you stop, when do you stop? that is up to you. I send all our support, love and courage to you to make it through these unending days of pain and agony. You have been generous in sharing all that has happened in the last 14.5 months. It means everything to those of us who love you and are far away. Thank you!
Love,
Aunt cathy
6 Ashley Longbine // Oct 2, 2008 at 8:57 am
I am Jake Arbeen’s teacher and Heather has openly shared this part of her life with me. I want to let you know that our thoughts and prayers are with you and your family.
Ashley Longbine and the staff in Room 11
7 Darby // Oct 2, 2008 at 9:22 am
Joe and Natalie:With all my love to your entire family. Darby Falls
8 Suzy // Oct 2, 2008 at 9:42 am
It is just like Laura to put others before herself, i.e. asking about guests. I remember in college when she didn’t want anyone to walk to their dorms alone, so she would escort everyone home. I had to explain to her that she would then have to walk back to her dorm alone and she would just brush it off. I will be thinking and praying about your family all day.
9 Karuna // Oct 2, 2008 at 10:59 am
Hi David,
I hear the exhaustion and Love in your post, and I’m glad you have help to sit with Laura. Hospice is absolutely right – Permission. And it’s more than just permission, it’s also telling her and reassuring her that you and the girls and all the family and friends will be all right. That you will indeed be sad and miss her, and always love her, AND that you will be all right. It is even really good to mention specifics that she may be concerned about (it may sound weird to mention these, but sometimes people at this stage are worried about all sorts of things that you won’t think could be worrisome), like “I will make sure to water the flowers everyday.” Or “We will take care of sorting through and organizing all the pictures into albums.” Or “We won’t feed the cat from the table.” Or whatever has been something she has taken care of that you will now need to attend to, however mundane it may seem at this very intense time. Speaking these things also reassures and gives permission.
The easiest way to tell her not to worry is through the intention of Love and care – which you are already doing. The hard part is not knowing if she is understanding, and seeing her agitated despite your efforts to reassure. Know that you can continue to reassure her; love her and give her permission. Just like we all may need to be told something more than once, this time is really no different. She is and will understand at a deeper level, and unfortunately will not likely be able to tell you she does so – then again she may well be able to, at some point. It’s all really up to the Divine at this point.
Taking videos of her at this time is not at all morbid. It is an act of Love and care. And when/if you watch it later, yes, you may indeed ask yourself why you took this because it may seem so hard to watch. However, over time (and maybe not so much tine), you will also be able to see and sense in this video the pure essence of Laura, all of who she is in these final moments. It is a beautiful and courageous thing to document this time. You won’t regret it at all.
Please know that I hold you all, and am praying for you.
Love & Blessings,
Karuna
10 dickie and ginny // Oct 2, 2008 at 11:20 am
At this point , Laura is figthing and having her life torn away . She has so much to live for — why would she want to go ? Sometimes giving permission is just impossible. Every death is different and cancer is the worst thief of all, but it cannot take away love. Laura will always be will you and a merciful God is still there– even if he seems deaf and far away now. We pray for strength and peace for you all now and in the coming days.
11 Enten & Mary // Oct 2, 2008 at 12:12 pm
Oh, David. Much love and strength to you as you struggle yourself to give permission and tell Laura it is okay, and that the love is still there just a strongly even when she goes. Our love to you, to her, to your two precious daughters. E&M
12 Kathy Pearse // Oct 2, 2008 at 1:37 pm
Natalie, Joe, David and girls: all our thoughts and prayers surround you. Know that you loved by so many – Kathy and Bill Pearse
13 shannon coleman // Oct 2, 2008 at 1:53 pm
Sending many prayers your way.
Shannon and Madison Coleman
14 MaryAnn Hassan // Oct 2, 2008 at 2:04 pm
David,
15 MaryAnn Hassan // Oct 2, 2008 at 2:09 pm
David, what an amazing, loving husband you are! Our prayers go out to you, Laura, and all the family during this painful time. God bless you, MaryAnn, Matt Hassan andchildren in Warrenton, VA
16 Mary (Jaminet) McClusky // Oct 2, 2008 at 4:02 pm
My heart and prayers are with you during this difficult time. I’ve been friends with PJ for many years, and have had the honor of meeting many Colemans. You are all such a loving family, that I am sure Laura must feel it even now in her weakened state. May God shower you all with strength and peace, and bless Laura.
Be assured of our prayers,
Mary and Tom McClusky
17 Katy Means // Oct 2, 2008 at 4:13 pm
My thoughts and prayers of strength, courage and peace are with you always.
18 Carla Johnson // Oct 2, 2008 at 5:50 pm
I am a friend of Calvin, Donna, and Robin Chastain. Robin lives beside me and my family in Greenwood, MS. She showed me your site and i read it daily. My thoughts and prayers are with your precious family.
19 Diane McLaughlin // Oct 2, 2008 at 11:54 pm
Please know that all the Christian Mothers of St. Michael Parish are praying for your family. Tonight I had the opportunity to be in the Adoration Chapel and thoughts of Laura and her strength came into my mind. I have been checking the blog daily and now at this hour just got back on. I will send out an email to our group to pray for your family as you go through this process of “permission”.
Blessings and Prayers,
Christian Mothers
20 Betsy Blake // Oct 3, 2008 at 1:23 am
I have fourteen used tissues next to my computer and still have come up with nothing, so give my love to Laura and tell her to be at peace…she will be amongst friends and so too will her loved ones.
21 Lisa Young // Oct 3, 2008 at 7:56 am
David,
Our thoughts and prayers are always with you and Laura and the girls and your extended family. My five year old just asked me what I was doing going on the computer before School. Funny– how i started to tell her, and she got distracted. I always wonder what five year olds are thinking, and I can’t imagine what Lily is thinking right now. All is know, is that while she may not fully understand everything you and everyone else are doing and going through, one day she will. And those girls are going to be beaming with pride– and Laura will shine through them and the strength she is showing will live on forever. One day they are going to understand everything, although they may not be happy about it, and are going to be so proud of their mom and dad– and they should be. I wish all the hugs and kisses in the world could make everything better for them right now. My daughter would want me to tell you that the world is better colored purple and covered in sparkles, and I wish Lily and Naomi were thinking the same thing right now, but they aren’t. But sometimes if we believe what five year olds say, they are usually right. You have our upmost admiration and we will continue to pray for Laura to be at peace.
Lisa, Jason, Bryan and Emily
22 Amy Hatheway // Oct 3, 2008 at 7:56 am
David, please know that Michael and I are thinking of you always and sending you, Laura, and the girls love and peace.
23 Janice Everett // Oct 3, 2008 at 9:09 am
We wish we could all be there to hold your hands and show our love…I am sending the love of your Arkansas family, we are holding you all close to our hearts. Squeeze Laura’s hand and whisper to her that we all love her so much. You could try naming us all one by one but that would take a while…starting with Momma(Aunt Bobbie) and family all the way down to Aunt Rhonda and family. That’s a lot of love and prayers for you to add to so family and friends that you have. All our love, Janice
24 Maria E. Sazonov // Oct 3, 2008 at 10:32 am
Dear Laura and family, May God Our Father and Our Blessed Mother be with all you at this time of trial and always!
All of you are in our thoughts and prayers. I just don’t have the words to express our sentiments of admiration, peace and love!
Mike. Maria & family
25 Tom Duesterhaus // Oct 3, 2008 at 11:21 am
Give my best to Laura, David – and know that you both (and the girls) are in my thoughts and prayers.
Tom
26 Vesper White // Oct 3, 2008 at 12:07 pm
Laura is such a beautiful, phenomenal, inspiring person. I’ve never known anyone like her. Wonderful Laura, wonderful David. You are constantly in my mind. All I can do is send my love and my hopes that you will both have peaceful rest.
Love, Vesper
27 the Hollandsworths // Oct 3, 2008 at 6:32 pm
We love your family, and we pray for peace and comfort in your house during this impossibly difficult time. Dave, please give Laura and the girls a kiss for us. You are an amazing group of folks.
Love, Tom, Mary, Emma, Henry and William
28 Phyllis Eller // Oct 3, 2008 at 7:44 pm
David, giving premission is so hard to do, for it is the goodby you don’t want to say, but just gather around her, tell Laura how much you love her and always will, but that she can go on ahead , and you and the girls will be OK .
My love to you all.
29 Donna Chastain // Oct 3, 2008 at 9:26 pm
Dear David, Joe, Natalie ,brothers and sisters, I am so glad you can all be together for Laura. Hold on to her and let her know you are there close. She’ll have comfort just knowing you are there with her. Please tell her we love her so much. Our hearts are with you all.
Love, Donna and Calvin
30 Suzy // Oct 3, 2008 at 10:00 pm
We are praying for you all. I continue to relive memories I have of Laura and when I retrieve a new one, it feels like a blessing. The latest one was a walk I took with her and some other friends around Lake Matoka. I just wish I could be closer so that I could give her a hug, squeeze her hand and be with her. So give her some extra hugs and squeezes from me.
31 Musa Mayer // Oct 3, 2008 at 11:03 pm
Thinking of you at this precious, excruciating time, and sending prayers for you and your whole family…
Musa
32 Andy Charest // Oct 4, 2008 at 2:48 pm
Much love and prayers for your entire family.