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Posted

Hello all....

I have wanted to write so many times, but have been so drained...

Dad is still in the hospital and now as pretty bad superior vena cava syndrome. They weont radiate on it because they have already done that twice.

They say " it will take along time for him to die from that"

He is really swollen though, and uncomfortable though. I wish I could give him some kind of releif. I have been visiting him everyday. The hospital is 1 hour and a half away. But today I needed a break.

So, I have been reallly depressed.

He is having these wierd episodes that when he coughs, he starts to shake and tremble like crazy. Falling etc. He says he sees things when they happen, colors and trees.

Yesterday one lasted 50 seconds, very scary.

They dont seem too concerned about finding a cause etc, because they look at all as a lost cause..

I hate that, he is a person, dont they know that...?

anyways the hardest part of this week was that they want to send him home because they feel like there is nothing they are offering him.

He lives alone, only a few blocks away, he wont come here, and I cant move in there, because he smokes sooo much , and with my son, he cant be around it.

So the only alternative right now is a home for 2 weeks they say, he started chemo last monday again. in hopes to get the superior vena cava tumor down.

I feel like I am letting him down by him going into a home.

But he honestly cant even walk, and last night he went number 2 all over himself.

I feel so bummed.

This disease is unreal... I tell ya,

Thanks for listening and thanks for all the advice.

lukiss

Posted

Oh, sweetie! I am so very sorry that this is all so bad right now. I sure wish I could do something to make it all go away.

Your dad will be ok in the home, and I will pray that the chemo will do exactly what it's supposed to do and he will be feeling better soon.

Hang on tight to this site. We are here for you!

Love,

Peggy

Posted

This is such an incredibly tough time for you and I am so sorry. You must not feel guilty about putting Dad in a place where he is safe and taken care of.... my Mom tried to take care of Dad alone when he was at your Dads point and it completely overwhelmed her. They were fortunate enough to be able to hire a nurse 24 hours a day . Please remember that you are doing whats best for Daddy and for yourself. it is nearly impossible to maintain a child/dad relationship while you are being the sole caregiver and right now, you need to be his child, not his nurse. I am praying for you both.

Posted

I hope they can do something to relieve the pressure from the vena cava syndrome. The episodes you describe are most likely from the lack of oxygen when he is coughing due to the svca. I have seen John do this a few times and it is really scary...looks like a seizure. Have they mentioned putting in a stent to help keep the vein open?

The home will give him good care, don't feel guilty about that.

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