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the pain for me goes on

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

Here's where we are at....

David recovered from C-diff, thank God. He also fought off a shingles outbreak. I got him on an antiviral immediately and I think we headed off a big outbreak. David's pain is also being managed pretty effectively for the most part. I am very, very grateful for that. We also changed the way we feed him with the stomach tube...we went to gravity flow bags instead of bolus feeding with a syringe. That made a huge difference. I am fighting against being very irritated with hospice that they didn't tell me about how bolus feeding can cause diarrhea and that they didn't suggest gravity bags sooner. It would have saved me so much grief. The way I found out was via an emotional phone call from me, saying if David is over the c-diff, why is everything shooting out of him right after I feed him???? That's when they finally suggested the bags. Also, I had a nurse out to check David because I was sure he was dehydrated, and she pinched his skin and looked at his eyes and said he's not dehydrated. But he was barely peeing and it was so dark that I thought something terrible was wrong. Finally the bath aide said he is definitely dehydrated and she talked to another nurse. So they had me increase his water from 60 cc four times a day to 250 cc every two hours. Can you believe the increase???? He must have been terribly dehydrated!!! Why did they ever have him on only 60 cc 4x a day? I should have questioned that a long time ago. So mad at myself.....anyway, the increase of water has also made a big difference. He is much more connected...by that, I mean he tracks us with his eyes, looks at us when we talk, and seems totally aware of what is going on. Before the increase of water, his eyes were blank and he just stared up at the ceiling. He seemed oblivious to what was going on. Being dehydrated affects everything. He had really weird breath...sweet and cloying. Turns out he probably has some acidosis going on. But the hydration also made that better too.

So David's vitals are great...really strong. He's over the c-diff and shingles. He's hydrated. But he can't move at all, except his right hand, and he can barely do that. His butt looks like raw hamburger. He can't eat. He can't talk. He can't even nod or shake his head any more. He can't sit in a wheelchair. He breathes weird...tiny shallow breaths, then six long, deep breaths. That may be from the acidosis...Idk and neither does hospice. So what kind of a life does David have? Would he want to go on like this? How long will he go on like this? He seems totally aware of what is going on. He noticed when his dad had tears in his eyes and he stared intently at Larry--I wondered what he was thinking?

For me, it's like I am grieving his death every day, over and over again. I can't heal, I can't recover, I can't go on in life. I'm always crying, always so sad and so miserable. He looks at that picture of our whole family that's on his hospital table next to his bed every day, and it makes me cry every day. I think he 's thinking about the life that he had and how it's over for him. Maybe I torture myself, thinking about what I think he's thinking. I'm just so incredibly sad and grief stricken that he is 29 and he's not going to get the rest of his life. He was diagnosed at 25 and I was shocked back then, thinking how horrible it was to be 25 and to think that you were not going to get to live. I remember talking to another cancer warrior who is David's age, and he said that we all think that we are entitled to a long life, but it doesn't always work out that way. I guess I did feel that David was entitled to a longer life. He had so many plans, dreams, ideas for his life....just like everyone else. I guess I should be grateful that he had 29 years. After he was diagnosed, he courageously fought to make the best of every day of his life. I am so proud of him.

I'm writing this in his room while he takes his morning nap. Later today, some friends from a few years ago (all pretty girls) are coming to spend some time with him. They live an hour away, but they have been faithful to come up every week. I think David really enjoys their visits. They laugh and chatter and show him pictures and tell him all the latest girl gossip. We tell him to fake like he's sleeping if he gets tired of their chatter lol. But I think he likes having them chat too.

How do you caretakers continue on without having emotional breakdowns all the time? I have to admit that it has gotten a little...easier? Not really the right word...I guess I've gotten used to some terrible things and that's helped. But how do you deal with the intense grief on a long term (several months) basis?

Love and blessings and peace,
Cindy in Salem, OR

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 449
Joined: May 2012

I have been reading your blogs. I can't imagine what you are going through. Losing a child has to be the worst thing in the world. I am mother to 4 kids - 29, 26, and 15 year old twin boys. I have stage 4 colorectal cancer. I am scared, sick of chemo, and on my mind 24/7. But I would feather it be me instead of anyone else in my family. I am 49 years old and my 29 year old daughter is trying to have her first baby. I would love to have grandchildren. I would love to travel so many more places with my husband. I have a mother that is 82 years old and has said you can't die before me. I am the baby of 4 kids. The only one with cancer. Still with all this - I can't imagine losing a child. I have been thinking about you and hope you and your son some peace.
Sandy in Georgia

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I can't answer your questions. I would feel like I would be dying too if this was happening to my sister. I hate hate this disease. I feel also that we are entitled to a long life, especially if we are good people. My sister said once "Why couldn't Hitler or the child molester get brain cancer? Why me? What did I do?"

I can only tell you that you are not alone. I think of you often. I send you all my love,

Julia

Tubbs
Posts: 51
Joined: Jul 2009

How do us caretakers continue without having emotional breakdowns all the time? We read posts like yours and think about how much you have been through and use it as ammunition for whatever's next.

I do admit, I will have a short crying spell at random times, but I'm so distracted with keeping my wife comfortable...lifting her up, cleaning her up, feeding her, taking her to the hospital, making sure she has a wheelchair and so on.

Can I ask, how did you decide it was time for hospice? I'm facing that dilemma now. My wife hates going to her infusions and it doesn't look like they're working. I hate to put her through them, but I also hate to give her the impression that I don't want her to live. Ultimately, I just want her comfortable, no matter what that entails.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

Yes, you are grieving every day. My husband fought colon cancer for 6 years. We both grieved for the life we expected. As someone else said I can't even imagine losing a child. Caregiving and losing my husband was very hard, but our children just aren't suppose to die before we do. We want them to have long, happy lives, but sometimes that doesn't happen. We cherish any time we have with them, but like I felt with my husband, it is never long enough. We hate to see our loved ones in pain or enduring the many treatments they may have to go through to buy whatever time they can. We often wish it were us instead of them. As a caregiver, I just accepted that it was ok to cry, ok to be overwhelmed by sadness. One friend pointed out to me that it would be really sad if I didn't care. Loving someone makes us vulnerable to sadness and grief, but it also gives us the gift of love and memories.

My thoughts are with you. I know that there are no words that can make this better or easier. Just know that many of us here care. Fay

connsteele
Posts: 232
Joined: May 2011

Cindy, you ask how we caretakers do what we need to do without having emotional breakdowns? As one who has been there I can say, I don't know. You just do,it. You said that you seem to be getting "use to it." I think on one hand that is true. For me, each stage in our David's decline seemed like the new normal. I also know the torture of wondering how he must be feeling about all the losses in his life. But you know, I think toward the end, our son came to accept his lot and be at peace with what he knew was coming, much more than we we were. I wonder if your David has reached that point too? It was just so frustrating that when he reached that point, he couldn't tell us.

During the last days of our son's life, he was really at peace and the hospice chaplain said, "you are now walking on holy ground." That is so true. I pray that tou and David find peace during this time.

Connie
Mother of David,
2-28-77 to 4-14-12

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I think about you everyday. There are not any words I can even think of to make this better for you. You are a great Mom and David is so blessed to have you. Your in my thoughts and prayer.
Brenda

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:
I just want to let you know that I am thinking of you and David. I am sorry that David and you are suffering so much. This is an ugly illness. I will continue to pray for you and your family. I wish I had comforting words but I myself do not know how a Mother can survive watching their child suffer so much. Sarah is stable, but with each MRI I am sick with worry. She still has significant impairments with her mind and right hand, but we just go on day to day. You are a very strong woman and a loving Mother. May God give you and your family peace and love everyday.
Love, Edna

sadinholland
Posts: 231
Joined: Apr 2011

Praying for strength and well being! Praying for David, praying for no pain. Praying for healing. Praying for guidance. Praying for wisdom. Praying for you and David and your entire family. God Bless!

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