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Cindy and David you are on my mind today

BenLenBo's picture
BenLenBo
Posts: 137
Joined: Feb 2012

Hello Cindy and David,
You guys have been on my mind today, wondering how everything is going, praying you are all still hanging in there. I know it's not easy, but am praying for you all to have the strength and courage to continue the fight.

((((HUGS)))

Carol

cdolive4
Posts: 34
Joined: Sep 2011

Cindy -

Just wanted you to know that I was thinking about you and David. I saw your update on momsworld's post, so I know that David is now on hospice, and I pray that you are being sustained as you continue this journey. It is an exhausting one, but I know that there are many prayers being offered on your behalf, and I pray for peace for each of you. Lots of love being sent your way. CindyO

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

I have had you guys on my mind a lot lately as well. You are continuously in my thoughts and prayers. Just know that we are all here for you and praying for strength to get through this.

Michelle
Mobile, Al
DX: 10/20/09 AA3

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for remembering and thinking about me and David. It really helps me to come on csn and see your notes. It brings me comfort and eases my grief and loneliness.

David has c diff. Clostridium difficile. You can google it for the scientific definition. What it means for us is that David has terrible diarrhea 8-10 times a day. He is super dehydrated and I'm afraid he is not absorbing any nutrients. It shoots out of him almost immediately after I pump,it into his stomach. The hospice nurse told me that this will "throw David's gears out of whack" which means that his overall status will be impaired. Which it is. Now David rarely nods or shakes his head. Never talks. He just looks at us. Sometimes his look is totally disconnected, but other times I think he is totally aware. One time we were talking about an earthquake that we felt a long time ago, when all of our kids were little, and David had said, "Mommy! Mommy! Godzilla is shaking my bed!" David smiled when I told that story....a sad, weak little smile on one side of his mouth. So heartbreaking.

Because of all the diarrhea, David's butt is like raw hamburger. It must hurt so bad but he can't tell me. I change his position every two hours and I check him and change him all the time, but it's so hard on his skin. And now on top of the c diff, David is fighting an outbreak of shingles. I have been watching him like a hawk, and as soon as I suspected shingles, I was on the phone to hospice. They called in a prescription and I went and picked it up at 11:30 at night. I am hoping and praying that we caught it in time to forestall a huge outbreak.

I do believe that David's pain is under control, and I am very grateful for that.

Sometimes I feel relatively strong, and then an hour later, I'm crying so hard that I can't breathe. I put this picture of our family--all six of us, plus my daughters' husbands and the four grandkids, in a frame on a table next to David's bed. He stares at that picture for hours at a time. I wonder if he looks at that picture and longs for his life that is lost. Even as I write this, I start sobbing out of control and I feel like I can't stand the pain. I want to be strong so bad but I feel cracks in me. I'm so fragile and brittle and so so so heartsick. I pray and I feel a little better but in only a short amount of time, I'm doing bad again. I'm afraid I'm going to have to get professional help and take medication and I don't want to. I don't want to add another thing to deal with in my life.

How sad for me that in the final stretch of this long HORRIBLE battle, I'm going to fall down. All three years, I fought so hard and now all I can do is cry my eyes out. The only thing left for me to do is make sure that David is comfortable, free from pain, and that he gets the best care possible (I am fanatical about his care and I believe he couldn't get better care anywhere else, including in the hospital). And that David is always surrounded by people who love him.

Please pray for strength for me and mercy for David.
Love and blessings,
Cindy

barbn
Posts: 33
Joined: Jan 2012

I am thinking and praying for you and David. David has been through soooooooooooo much. You are a wonderful strong mother. There is nothing wrong with letting your emotions go. It helps to release.
WE have Hospice in our lives also with my husband Jesse. Every day there is something else happening but Hospice organization is wonderful. I don't know what I would do without them. It is comforting to know they are right by my side for everything.I feel the same way you do. I want my husband to be at home where he is comfortable and the surroundings are familiar.
I know we all want our loved ones not to suffer pain. Top priority.
Maybe you will need help eventually, but knowing our loved ones won't be suffering in due time, might help some. The part is missing them so much.
Speaking for myself, I would love my husband to be with me forever, but his quality of life has diminished so much.He can't come back to me whole anymore and we talked years before any of this GBM took place if our quality of life is not there please LORD have mercy on us.I don't know what the future will hold for me and it is going to be so hard...... But I want what is best for Jesse at this point.
Believe me tears are always on the surface for me too.
Let your family and friends support you and know we all care too.
Thinking of you daily
I have not been posting much on CSN lately but we have been trying to keep the caringbridge site up to date
www.caringbridge.org/visit/jessenowak
Take care my friend
barb

connsteele
Posts: 232
Joined: May 2011

Thinking and praying for you and your precious David. You and he are strong and I agree, you are giving him the best care, better than in a hospital or even an inpatient hospice. I hope you can take comfort in that.
Hugs and prayers,
Connie

sadinholland
Posts: 221
Joined: Apr 2011

Cindy, not a day passes that I don't think about you and David and ALL that he and you have and are going through. I do pray for your strength and I will pray for mercy for David. Hang in there, I know it's hard. Talk to someone face to face and get some support. Maybe a support group, I don't know. My heart aches for you and your son. This is a frightening battle. It seems all can be going so well an then BAM! It really scares me what the future holds. Stay strong and lean on your Savior. He will see you both through it.

BenLenBo's picture
BenLenBo
Posts: 137
Joined: Feb 2012

Cindy, my heart just breaks for what you and your family are facing. Know that you are an excellent caregiver to David. I do wish you strength and courage to continue on in this fight for life. Does not seem fair that David should have to suffer so much. He has a beautiful heart, compassion and love in his life, along with a great family. He is so blessed!!!!
Just a little something:

To My Son: When I tell you I love you, I don't say it out of habit or to
make conversation. I say it to remind you that your the best thing
thing that every happened to me> :o)

Remember: One day at time is enough. Do not look back and grieve over the past
for it is gone; and do not be trouble about the future for it has not
yet come. Live in the present and make it so beautiful it will be worth
remembering.

Those little smiles from David are precious and a treasure worth remembering he is so
loved and appreciated.

(((HUGS)))

Carol and Benjamin

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