Please, God, help me be strong until the end

ketziah35 said:

To say I am sorry...
To say I am sorry doesn't seem enough. I do not know you nor have I exchanged greetings on the boards, but I offer you my sincerest prayers for strength for you, your son and your family.

God bless.

Ketz

I_Promise said:

Cindy
The PEG tube is a very personal decision. I know that I or my sister would decline having a PEG unless it meant it was temporary. If I could not have chemotherapy anymore (or any other treatment specifically for brain cancer) then I would concentrate on making my life pain free. I guess I know too much and I see too many complications associated with aggressive treatment during the end of life.

Nothing can prepare us for what you are going through. It is horrendous disease. I wish the David that you described so many times was still with us. I wanted his scans to improve. I wanted him to beat this. I think of him every day. I am crushed and so desperately sad for you and him.

I will be with you until the end.

J.

unknown said:

Prayers for you, and some wonderful news to share
Cindy,

I'm so grateful that you are still sharing your very sacred journey with David in such a personal, powerful way, which takes great courage but blesses countless lives. I try to check for your posts as often as possible, and I think of both of you many times every day. The difficulty of this road literally takes my breath away, and I'm thankful that we support one another during these overwhelming times.
You are in my heart, and I will hold you close forever - I promise. This has been a difficult summer for us as well - we have had 7 funerals (including my husband Dave's) this summer amongst our family and friends. 2 of the funerals have been for young adult children of friends I have known for 25 years - at times, the magnified pain seems too much to bear. I'm just grateful that I'm not alone in this - I know that God is with us, even when He feels far away, and I'm thankful for friends and family who are loving enough to walk the path with us for a time.
Sometimes, though, there are wonderful things which happen which help us remember that there is still joy in the world - and I'm thankful for those reminders. One of the most joyful of all possible events happened to me today - I became a grandmother. Our son and his wife had their baby, a little boy named Samuel David, at 4:24 this morning. The whole family is doing well, and we spent the day cuddling him, while he looked around at this world and listened to his parent's voices.
This day was especially tender because it marks 3 months since my Dave crossed the veil and continued his journey back to God. But now, rather than only remembering the sad events of 3 months ago, our family's lives have been transformed and we have rejoiced together. I'm confident that Dave was saying goodbye to Sam in heaven as we were saying hello to him on the earth.
My heart aches for you and for each of us as we struggle with these changes in our lives, and I don't have any magical answers which will take away your pain, but I do know that "weeping may endure for a night, but joy cometh in the morning. Feel free to borrow some of our joy as you serve David - we truly are in this together, and it's a blessing to be able to share both joy and sorrow. Wishing you love and peace, CindyO

connsteele said:

My heart goes out to you and
My heart goes out to you and David, because we have been there. We also faced the dilemma of whether to start tube feeding our son. This was about two weeks before he passed, when swallowing became a problem. I asked our hospice nurse about tube feeding and she said that Hospice does not support that for end of life care. It was hard...the idea our son would spend his last days hungry was anguishing. But looking back, I think it was the best. I think he just wanted to rest undisturbed. He was peaceful during that time which is comforting. You have given 110% to caring for your David, and he is fortunate to have had such a devoted caretaker. Don't feel you are weak because you cry. Tears are the healing waters for those who are broken and weary.

Hugs and prayers for peace.
Connie
Mother of David
2/28/77-4/14/12

Tubbs said:

I am going through some of
I am going through some of this with my wife now. She officially started hospice care on Sunday. Her oncologist recommended NOT giving her the feeding tube and I'm grateful that he wasn't insistant. She has a tumor on her brain stem which makes it hard for her to swallow, but she has small bites through the day. We've discovered she likes orange juice so she has that and small pieces of watermelon to start the day.

The hospice nurse came over today and said her vitals are good. I asked how long she thinks my wife has to live and she couldn't give an answer since she is still eating and drinking. Not much, but she's still somewhat capable of eating.

Now I'm worried that we put her on hospice care too early, but I'm sure most people second guess this. My wife is so miserable, and learned today that the radiation we hoped would help has not done much for her.

I hate to lose her, but I also hate seeing her live like this: dependent on others, unable to go to the bathroom by herself, bath herself and feed herself. It's really no way to live.

My prayer is that she goes painlessly and somewhat quickly, so her sadness and pride are taken care of in short order.

cindysuetoyou said:

thank you to everyone
Thank you, everyone, for your comments and support. I am barely hanging on by a thread and your notes to me here on csn really make a difference. It's amazing to me how people I've never met have become so important to me and have been such a source of support and help to me. I hope God blesses you for your kindness to me.

I tried giving David 2 oz of formula via his tube. He had such violent diarrhea, and many episodes of diarrhea. I don't understand where it's coming from. I called hospice, called the palliative care dr, even called our old home health care nurse that we had before we made the switch to hospice. They all think that David's digestive system is failing and he is passing the water thru his gut and it's coming out from his bowels instead of processing it through his kidneys or something like that. The dr said that David's body is producing bile and other stuff and that's what makes the diarrhea have that color....a dark greenish black. I hope I'm not being too graphic...please forgive me if I am.

The other night, I cleaned David up at midnight and went to bed. Then I woke up and checked David, and he had to be changed. This was at 4 am. At 6 am, I bolted awake and checked him again...had to clean him up again. Then again at 8 am. I felt so desperate. It runs everywhere, from the small of his back all the way down to his knees. It's like black inky water. I'm cleaning him up by myself because my husband works graveyards. I keep thinking it can't get harder, I can't be sadder, and then it gets worse.

So I am not giving David any formula. I do believe what the palliative care dr said about it causing David to die faster...that he will actually burn more calories digesting the formula than he actually takes in. She said it's just a matter of time now. It all depends on his body's "machine"....how much does he have stored to run his body's machine before he totally runs out. No way of knowing, but since he's young, it could be several weeks. I guess you can live off water (and a ton of pills) for quite a while.

In the meantime, David doesn't look connected and aware of what is going on very much any more. He has periods of apparent clarity but they only last a few seconds. He looks so bad. His eyes don't match...one eye looks one way, the other eye looks off a different direction. It is so upsetting to me! He makes chomping motions with his mouth...really rhythmic. I don't know if he's trying to talk or if it's a mini seizure. He used to look at me when I talked to him and he would track me with his eyes. He rarely does that any more. I wonder if he's dehydrated but the dr said to cut back on water and see if it helps the diarrhea but so far it hasn't helped and I don't like holding off on the water, so I am going to start increasing it again. He is still having diarrhea with less water so why not give him more?

Today Portland State University called to check on David's student status. I thought i was okay but I ended up having a total meltdown on the phone with a complete stranger. He was very kind and sympathetic and I told him about David coming home from the hospital after having brain surgery and being so sick and weak but he tried on a new jacket and was so pleased and said he was going to wear it on the first day of class. He never was able to go back to school, and when we moved him out of his apartment, there was that jacket hanging up in his bedroom. It made me cry my head off back then, and I cried my head off when I told that guy on the phone today. I've been a wreck all day today, crying off and on and not being able to get on top of things.

My family has really rallied around me and has been so supportive. I think they are worried that I might crash and burn. I notice that they are coming over a lot and they seem to be making sure that I'm never alone. My niece comes over all the time and grocery shops with me, runs errands with me, helps me clean and reposition David, does housework. My sister spends the afternoons and evenings with me. My daughters and my other son come over every day. We all eat dinner together and we sit around and talk a lot. They all got together and fixed up my house...painted the entire interior, finished putting in our laminate flooring, new molding, switched out all the outlets and light switches, put up new light fixtures, redid my bathrooms.....just totally fixed up our house. It hasn't looked this good since we moved in 18 years ago. I took pictures and showed David and he seemed interested. That was last week though....

Julia, I have really mixed feelings about a PEG. I don't know if it was the right choice for David. I'm such a neophyte with all of this medical stuff. I didn't know what we were getting into with having a PEG put in. But I guess if I was going to do it all over again, I would probably do a PEG again. I felt like I needed a way to give pain meds and other medicines, and to keep David hydrated. I just didn't know about all the other implications that are involved with a PEG. It's been a real nightmare....

Thank you again, everyone, for your posts. I am so grateful.
Love and blessings, always,
Cindy