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Troubled Water

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

This week is something I can't even describe.

This past week, where do I even begin? Range of emotions...I think I felt everyone there is to feel. And here I sit now feeling completely defeated.

Everything started a week ago thursday, when we sat in the Surgery center waiting for my Dad to have his scope and esophagus Dialation. The procedure we've been waiting for...He had one done back in Novemeber, and it helped for quite a while or at least what i saw was quite awhile. As you all know each day when you yourself are dealing with the diagnosis of cancer, or a loved one.. each day seems like a year..anyway it helped for about 2 months maybe three if we were lucky..

I've been caring for my dad since his diagnosis back in feb 2009...

*I need to apologize for skipping around, Im not able to really concentrate atm and you will see why shortly*

Back to the surgery center, I was called back to recovery, where I found "superman" *my nickname for him* still asleep from the sedation. I sat there for what seemed like an eternity waiting for the doctor to come out and talk to us..*reality about 40 mins*

The doctor finally came out, I looked up expecting great news, He ran his hands through his hair, and we all know NOT good news. He proceeded to tell me that they had a hard time getting the scope in even much less dialate. He tells me Give it a week call the office we will get thoracic surgeons involved..in the meantime lots of rest and fluids... ok fine fluids...meaning more trouble from dad. He's still trying to drink normally knowing it won't go past the throat, fear of choking, and alot of vomiting..

So I take superman home, for the next week just as we suspected he loses even more wieght he's now sitting around 140lbs...no body fat no muscle. He's managing to get about 6 ensures in a day via feeding tube J tube. I notice he's starting to sleep more, Im sleeping less, about 45 mins a night if I'm lucky..with my fear he will just stop breathing..

This is the way it's been for the last 10 months or so..My life has become HIM, I do nothing but care for him make sure he's ok, Tending to the house and mundane tasks to take my mind off things coming in to check on him every 5 mins..Really hard to get anything done but Im trying my best. Im 35 my dad is 57 much to young to be facing this ..

Fast Forward to a week after the scope, We are sitting in his oncologists office, in the exam room Dr. Meyers walks in and sits down. He's been telling us all along stage IV stomach cancer ....my dad's cancer is odd. It's at the junction of the esophagus but considered stomach cancer...but the espohagus is involved..

Up at this point we have been told He has responded well the the chemo the 5FU therapy at first and the latest xeloda the tumor has shrunk ect. Of course Dr. Meyers had the result from the scope. Wasn't good. He told us he wanted to expedite an appt with thoracic. Ok fine.. I finally asked him point blank.. what's going to happen. I regret asking this now.

Only chance at this point...Thoracics being able to put a stent *shunt* in, will get him opened so he can enjoy food ect. Will buy some time maybe. I'm devastated...as we proceed to talk..well while I cry.. I've been a Rock through all this... I crumbled.

Dr Meyers has referred us to hospice.. Yes I said Us reguardless what anyone thinks as a caregiver we go through it the same as the person diagnosed.

I talked to the doctor not really knowing the criteria for a hospice referral I had heard 6-9 months expected left was criteria...Dr. Meyers said generally 6 months but I need to be honest Your dad has 1/3 of that most likely..I just sat there for what seemed like an eternity and finally looked up and asked "are you telling me 2 months????" Reality set in.. My dad has 2 months left?? I know this is just a guess but talk about bad news.

So here we are two days later..I've talked to hospice they will be coming in Day after Tomorrow, His Thoracic appt is Wednesday *my moms birthday*. I've made so many difficult phone calls that I can't even bare to hear the phone ring anymore. Had a really bad blow up fight with my dad yesterday and here I sit today feeling...I don't even know. Numb mad emotionally a wreck, I can go from laughing to crying in no time.

My grandparents will be here Tuesday from Ohio and Im trying to figure out how to hold myself together. I've always been the Rock there for everyone and the glue that holds my family together even in the midst of my dad's and my fight yesterday he just stopped and looked at me and said "Valerie I don't know why Im mad at you right now. You are the ONLY person that has ever been here for me even before I got Sick. I've trapped you in this with no way out, After I die You have to be here still, You are the one that always has been what held us together, and I know you, You will be the caregiver to so many others I want you to be ok" So at least after that things calmed down and I knew he Knows Im here for him.

But even with that said Im lost right now and guess Im looking for support and advice. How can I get myself back together here. So I can do what has to be done.

Noellesmom
Posts: 1278
Joined: Aug 2010

My mom said the same thing to me before she passed away, Valerie, so I can identify with that. Even so, I get the feeling that at 53, I'm considerably older than you and probably a bit more ready to deal with the reality of what my mom's passing meant and what your dad's passing will likely mean to you in that respect.

Don't try to think about how you are going to take care of everyone when your dad is gone: that doesn't even register on the scale of things you have in front of you right now. Focus on spending quality time with your dad, listen when he wants to talk and, above all, take care of yourself as much as you can, Valerie.

Keep coming back - we are here.

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

Asking the hard questions and getting the answers we didn't want. That is sadly the role of the caregiver for a cancer patient. Hospice will help and they are there to help the family as well as the patient. Don't be afraid to ask for help dealing with the family, too. I know you are feeling all kinds of emotions. I remember how hard it is when hospice becomes the option and you know your loved one's time is limited. Try to see each moment as a blessing. Your dad is with you now. Don't let all the worries of tomorrow steal the time you have today. Easier said than done, right? I know, but share memories, look at photos and tell him how much he has taught you, how much you love him. You have time to say good bye. Many don't get that time. Cherish it.

Now take a deep breath or several and try to take care of yourself. I know that is hard when you are the caregiver, but it is also the most important thing you can do. Yes, you will be there for your father and he knows and appreciates that. Concentrate on caring for him and yourself right now, and let the others take care of themselves. You can't take care of everyone. You really can't. Besides, they are not your responsibility at this time. You are a very caring person. That's a good thing, but don't let others take advantage of you. Ask for help. If others are there for meals, send them for pizza or something. You already have enough on your plate. Most importantly, get some rest, take a walk, do something for you. I was not in the room when my husband took his last breath. He slipped away in his sleep. Our sons think my husband wanted it that way so I wouldn't dwell on his last breath. Who knows. I do know that he knew I loved him and I know he loved me. That's what counts. I was there for him every step of the way just as you have been for your father. Hugs, Fay

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Yes I am pretty young in the scale of things...I'm 34 Im the only girl and youngest child i have a brother that isn't really in the picture even though he is 20miles away..

I do take care of every aspect of the family. And with this all I've learned many things. From the outside my dad looks healthy minus his wieght he's lost over 50lbs since christmas. Other than that you couldn't tell he's ill.

I take every moment I can with him. I will deal with things as they come. Im finding this to be the most exhausting thing I have ever been through. No matter how much sleep i would get I think that I would still be drained..part of being a caregiver Im told.

Today Hospice came in and yes very exhausting..My dad's wishes are importatnt to me. And I will make sure they are followed. Funny how he is kind of like a yo yo of acceptance or non acceptance right now. Sadly Im ready for him to stop all treatments and just enjoy the time he has left to the best of his ability...maybe i shouldn't be but I've seen him suffer enough. He has what is diagnosed as stomach cancer but as alot of people know stomach and espohagus are closely combined.

SO he is being "labeled" stomach cancer with mets to the esophagus *it's almost completely closed no fluid or solids or medication can pass* and mets to the kidney and lymph nodes affected. So the journey is going to be difficult...

But I have been his sole advocate through all of this and I won't stop now.

sue5749
Posts: 170
Joined: Dec 2010

I read your story this morning and you have been on my mind all day today. You are such a strong young lady! You will be in my prayers! So sorry about your dad, try and stay strong for him! Sue

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Sue,
Your words mean more than you can ever imagine, Today Im feeling pretty down so to ready your post it means the world to me. Without this site and the people i've come to know here as "family" I really don't know what i would do!

Valerie

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