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Can't stop crying---just want to write

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

We are home from the hospital. We have hospice now. I'm probably the only person who has ever said this but I HATE HATE HATE hospice. Oh, they are nice enough and helpful but I hate strangers in my house, trying to hug me though I've only known them an hour, talking to me about things I don't want to talk about, telling me that they won't pay for pradaxa or metformin (blood thinner med and diabetes med,) asking if Inhave chosen a funeral home, how I doing....endless questions....

I wake up in the morning and cry. I dry my face, get up, and go through the ritual of feeding and medicating David through his peg. Clean him, get him comfortable. Turn onTV like always, say my usual cheery "let's see what's going on in the world today." First thing on tv: a commercial showing a guy David's age running on the beach holding hands with a beautiful girl. Change the channel, it's a commercial for Applebee's with delicious looking food that David will never eat again. Change channel, it's a Reebok commercial showing young people doing cross fit training like David loved to do. Next channel, Cancer Centers of America commercial. Next channel, basketball---David's game. I finally put on an animal show and go cry my head off in the shower. Get out, call hospice, cry some more---but get decision reversed and they will cover metformin and pradaxa. Head out to pharmacy and see David's sporty little car in my driveway with a layer of dust on it. David never let it get dirty. Cried while I drove---I could barely see. Came home and curled up on my recliner in David's room--five minutes later, hospice shows up.

So that's what my days are like. In bed now, crying again. Will the pain ever get any easier to bear? Or will it hurt this bad until David draws his last breath? It's killing me too.

Beckymarie
Posts: 358
Joined: Aug 2009

Cindy, I was told once that crying is a good stress reliever. I still do it frequently.
This sucks and there is no getting around it. It is so unfair. That bothers me still after 2 years of losing my husband. How unfair that he was taken at 56...missed out on so much in our lives. But we all know life is not fair. You have been a warrior in this battle and done all you could for David. Now it is time to try to find some acceptance and peace with the outcome. I know how trite that sounds, but it is what it is. I am so sorry for what you, David and your family are going through. It is heartbreaking. Please know I am thinking of you and David.

Raani01
Posts: 68
Joined: Mar 2011

I reread my post to your previous thread and feel terrible. I sounded like hospice is so fun! Cindy, I am so sorry and I wanted you to know the feeling you have is very normal and I had all of those feeling in the beginning as I started hospice for Jacob. They first said they wouldn’t cover medications; the nurse wouldn’t come very often to check his vital when I wanted etc... But, eventually they did everything?! Everything during hospice is painful, but like Bechymarie said you should be willing to go through the pain with a determination/intention to make everything good for David. That is what I did and as I look back now, even though it still hurts, I find lots of comfort in knowing I did everything to make Jacob feel loved all the time until the last min.Sometimes I feel guilty, thinking why I spent time thinking about other people's actions or to make things better around the house, I should have spent those times just laying by his side hugging. Please remember, your David still has cognitiveness and you could make him feel your presence and you get some feedback from him. You know how much I wished Jacob showed some expression that he knew my love.I still wonder whether I gave him all the food he liked before he stopped eating. One day he just stopped eating with no warning. The last real food he ate was his favorite pudding (flan) he always wanted me to make. How proud I am to tell that to my friends! I am at work and I am getting emotional thinking about those times and the craving to see him, just to touch him.
I don't know I am comforting you anyway, but, please know I am trying to tell that this time is very important, and as you know, a seizure or hemorrhage can come any time with no warning. My prayers are with you to get the strength to do everything your heart desires.

Raani

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Cindy,
Just go ahead, cry all you want, it part of the grieving process, for what you have, and what is changing in your lives. Crying is a great stress reliever, it must have been absolutely one of the most difficult decisions to have hospice come in for David. I personally don't care for people who start hugging, when they really don't know you or the situation, just stick to the facts madam and let's move on. Anything else feels fake at the moment. How is David doing through all this transition? The one question I always have, is do they know what is happening around them - even when Benjamin was first awake after his 4 surgeries, did he know? or did he rely on us to make the right decisions about his care.
I pray for you to have the strength and comfort needed to help you through this next
phase in life.

((((Hugs))))

Carol

On the side note: Benjamin just passed his DOT Physical- he can drive Semi again and keep
his Class A liscense. Big day in our household. The first time he tried, the PA was so
mean and nasty, he was really hurt - she told him to find another line of work. I could have
punched her lights out. So, this became a big hurdle for Benjamin to conquer, and conquer he
did! :o)

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

Cindy,

You and David have been on my mind a lot lately, and I haven't been on here in a while. I am so sorry you are going through this. Again I always say this, but David is so blessed to have such a wonderful Mother! I will continue to keep you and David in my prayers! We are all here to read your posts and to listen to your feelings. I feel like you guys are a part of my family, and my heart is breaking for you! Hope you find some peace through this hard time, and take care of yourself to for David's sake.

Love and prayers!!!

Michelle
Mobile, Al

Noellesmom
Posts: 1279
Joined: Aug 2010

Yes, Cindy, you can count on feeling miserable and bereft of anything but grief while you are going through this phase. There will be moments where you wish it was just over and then you'll feel guilty about that.

David's privacy is non-existent, yours has been invaded. These human bodies fail and require care until that last breath and all the effort you are putting into David's care seems as though it does not benefit him at all.

Please understand and know you are not alone. You are in thoughts and prayers all day and all night.

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

I am with you in thoughts. Always. I wish I could pluck you out of this nightmare.
lots of love,

Julia

mighty6
Posts: 47
Joined: Sep 2011

Dear Cindy,

I can't keep my eyes dry reading your post. this is beyond heard-broken. Like many others, I pray for you and David often, hope God grant David his inner peace and you too.

--Jane

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