I'm A Caregiver Who Is Losing It

Hi all.

First, my sympathies to everyone doing battle with this dread disease.  My heart & prayers are with you all.

 My 59 yr old father was diagnosed with stage ?? (he claims he doesn't know, and his doctor won't talk to me) stomach cancer in April.  Operation late April removed 95% of stomach & some esophagus.  He had a heart attack on the table and so they stopped the operation as quickly as possible, resulting in their not being sure they removed all of the cancer.  He then recovered very well for a month, eating normally and feeling quite well. 

Trouble started on week 5 post op, when he lost his appetite & energy.  He THEN began radiation.  This worsened everything.  He began gagging on any food.  He is cold when the room is 100 degree. Diarrhea lasting 3 weeks.   He is 6 feet tall and down to 105 pounds.  Decided to stop radiation.

He had been living three hours away in an apartment by himself.  No friends around, not even familiar neighbours.  He is running out of money.  I was making trips back and forth while trying to run my business & raise my family, too.  FINALLY I got him to my house when the emergency room sent him away & his own doctors told him everything was fine.  The man could hardly walk and everything he was eating was making him gag.  He couldn't do any self-care.  I couldn't keep driving back and forth.

 Since being at my house there have been improvements, however he is still clearly in denial.  At first he tried right away to eat a BLT.  I tried to advise against it, but it's difficult to take someone's hope away.  For three days he tried eating things he shouldn't.  Now he's just on soup, which is better, but he's not drinking much at all.  The diarrhea is back though not as bad.  he hasn't put on any weight.  Still can't eat anything solid.  He doesn't want me to get him a doctor where I live and keeps talking about going back home & back to work. 

 On top of all this, too, is that he's taken over my house - it's a very small little wartime home.  I have set up a television, couch & bed in a private room for him on the main level, but he wants my only family room, where he sits like a ghost with CNN on all the time, the curtains drawn, and he doesn't want me to open any windows.  My child is so out of place with him here - she barely knows him in the first place.  At least he has stopped picking his nose at the table, but there are a lot of other little uncomfortable things.  We are all trying to sacrifice, but I'm starting to really crack under this situation.  I'm trying to balance too many needs, and he doesn't seem to want to get serious about either helping to make this bearable OR allowing himself to believe he's as sick as he is.

 this was so long.  I just need a friendly word, and any experience anyone has with caring for a stubborn family member while balancing a small business, spouse, and children. 

I am so sorry that you are going through this. My dad also has stomach cancer-stage four and is losing wieght at a rapid amount of time. He won't eat or drink much of anything.

I know how difficult this can be, on you and your family. I can only imagine what it must be like for our dads.

Please try to keep plugging along, no matter how hard it may be.

I know it is much easier said than done. My family has only been doing this for two months and some days I just don't know how much more any of us can handle. If you would like my email, send me a PM and I will send it along to you. Maybe we could chat some. You are in my thoughts and I am sending prayers and hugs your way!

Ame

hi and thanks for your kind words. it is nice to 'talk' to someone in a similar situation.

Did your dad have his stomach removed?  Mine was eating fine for the first month after but started to go downhill.  Now he won't accept that things have changed - he keeps wanting it to go back to the way it was right after the surgery but it might never do that.  Does your Dad try to eat things only to gag or throw up?  what types of foods work for him?  My dad is fussy and won't eat hardly anything I suggest.

The strain on the family is really immense.  Is your father living with you?  Where does he spend his time.. out in the house, or in a bed, or somewhere else?  I'm finding it hard to share my whole home with him, especially since he resists getting dressed properly, he's always cold and of course, the gagging makes it difficult for any of us to have a meal.

 I never imagined I'd be in this position so young, I really didn't.  What has been the hardest part for you?

I had the same gagging and I had vomiting every time I would try to take a bite of food. After suffering for the last 5 months with it, I finally found a doctor that would do a scope. Where the esophagus meets the stomach was almost all the way closed. No wonder I was gagging. He used the balloon procedure to open it up and now I can eat. The doctor said it was probably caused by the 5 weeks of radiation I had.

I feel for you in this situation. Wish I had some words of wisdom, but don't. Sounds like he is depressed and scared.  I hope it gets better for you.

It is a very difficult position that you are in, being the main caregiver.  As hard as it is on you, I believe that you will one day treasure this time spent with your father.  My sister has stage iv stomach cancer.  She did not have her stomach removed because of seeding elsewhere.  I have noticed her appetite has dropped drastically.  She told the doctor she has been drinking Gatorade (for the electrolytes) and Boost.  It seems to be helping her maintain her weight for now.  I have also found soup or anything like watermelon or cantelope is something that she will at least try.  She has been doing chemo for about 9 months now and it is holding the cancer at bay for now.  Although she has been very sick from it and had a blood transfusion last week which did perk her up a little bit.  Her doctor never recommended radiation and I always wondered why.  Does your dad have mets anywhere. 

 I hope you can hang in there and know that what you are doing for your dad is a very special thing.  Even if he doesn't say it verbally I am sure he does appreciate what you are doing for him.

Amy

Although my father has tongue cancer rather than stomach cancer, he is also stage IV.  I could almost have written your post.  He is almost 88, and receiving radiation five days a week and chemo once a week.  He lives across the country from me, and I just got home last night after visiting him for five days. 

It was the most miserable visit I could have imagined.  I anticipated that it would be difficult, just not THAT difficult.  He is 6 feet tall and his weight is now 136.  He has always been an extremely difficult person, bordering on cruel, but now I believe it is his age and the cancer that have accentuated all the negatives, and he hardly seemed like the same person.

He yelled, he screamed, he swore, he tried to maintain control, but control has fallen away from him.  He is now being fed by PEG tube 100% of the time.  When we got there he was in the hospital because the night before he had tried to take his pills by swallowing them with water, but aspirated them into his lungs.  He still hasn't filled the prescription for the antibiotic for this pneumonia.  I cannot seem to talk him into doing so.  Made a little headway in that direction by phone this morning, but it's hard to tell whether he'll remember to do it.  He also didn't take his heart medication for four days because he didn't trust the nurse who handed him the prescription in the hospital.  He didn't realize that it was the doctor who wrote the prescription, not the nurse.  He is completely unreasonable.

He has become really annoying, accusatory of everyone doing everything when in fact no one has done anything but try to help him.  He has accused his caretaker of stealing books and artwork when in fact those very books and pieces of art were exactly where he left them.  He would not apologize to her.  He too sits and watches TV, although does try to get up and do some other things.  He's never been much for TV.  Sometimes he stays in his bathrobe and slippers all day and just lies in his recliner.  He sleeps a lot.

He is demanding, commanding, and just plain mean.  It was the worst visit I've ever had with him.  I went because I wanted to support him, and be there for him, and, I admit, for myself, as I'm not sure he will even make it through seven weeks of treatment.  Yesterday started week five.

But the stress of being around him was more than I could tolerate.  As an epileptic, I have to watch my stress levels, and I tell you, it was off the charts.

I really relate with the things you are saying.  I wish I could offer you suggestions and comfort, but knowing firsthand what you are going through, I can only tell you that I understand.  It is hard work, very frustrating, and it seems hopeless.

He seems to not appreciate anything anyone does for him unless HE asks for it.  He ordered us around, told us where to sit, when to come, when to leave, what to say, what not to say.  His curtains are closed all the time, and he wears long-sleeved shirts and doesn't use his air-conditioning.  This is in Arizona where it was 106. 

He doesn't trust anyone, and the doctor and nurses in the hospital were among this group.  He only trusts his radiation oncologist and one of his nurses.  If they say something is OK, he will do it.  Everyone else is "that girl" (nurses) or "that doctor from such and such a country."  It's pretty unpleasant.

I wanted to help make these days more tolerable in whatever ways I could, but I got shot down for trying to help.  So I backed off, in self-protection mode.  My husband finally said to me, "You're going to have to let him die on his own terms." 

My counselor said, "He wants to die the way he has lived--thinking he is in control, and accepting help from no one."

I share your frustration.  It is so real and so very difficult.  I find it a strange emotional mix, that of wanting to help, being rebuffed, and seeing that his way of handling things will likely result in his death sooner than what need be.

Prayers, hugs, and understanding come to you from me.  It's a monster disease, isn't it?

God bless you.

Maggie