Dealing with my father

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 67

Okay - I hope I don't offend anyone here, please hear me out, as I'm just venting. Long story short, Daddy was diagnosed with Stage IV rectal cancer with mets to liver, lungs. Hospitalilzed from December through February. Went to see him EVERY day (30 miles away), sometimes twice a day, and stayed with him at least 2 hours each time. Took care of his animals and his house EVERY OTHER day (30 miles the OTHER direction). He came to stay with us from beginning March through May 23. He was in our living room, as we have a small house. He was very rude and inconsiderate about EVERYTHING. Each day, gave him meds, prepared his meals, cleaned his colostomy bag(which he wouldn't even attempt on his own), his urinary catheter bag, helped him shower, etc. He wouldn't even TRY to get more mobile until we started harping on him, first gently, encouraging, then a little more insistent until he got mad. As the doctors said at the time, there was no reason for him not to have been more active at the time, especially with no pain. He's just now gone through his 12th chemo (10th on Folfuri), has 2 more. Amazingly he's not having any nausea or pain, except from his prostate, which won't calm down because he drinks a 1/2 gallon of whiskey every two weeks despite the doctor telling him not to. Takes pain pills for that and keeps drinking. He's very proud to tell me every time I talk to him that he is feeling better "now that I'm having a good stiff drink". He is fatigued and weak after the chemo, I completely get that, and we help him around his house as he needs it. Thing is, he wanting us to do stuff HE didn't even do before he was diagnosed, and he gets pissy and gets the neighbors to do it if we can't come out and do it THAT DAY. Then he badmouths us for not "helping" him. I take him to every doctor appointment, every chemo, every chemo pump disconnect, to the tune of over 100 miles a week on my vehicle now, and missing LOTS of work to the point I'm afraid I will lose my job. And he's making noises to his neighbors that my husband and I don't do enough for him. I am an only child, so there is no one else. And he manages fine when no one's looking, but when there's someone around (like his neighbors), all of a sudden, he "can hardly get around". Not just my opinion, other witnesses have said this, too.

I love my dad - I will do whatever it takes for him to get to the other side of this, whatever that means. But he's never been a nice man at all, has never had any friends, and he's very demanding.

I do care what the neighbors think to a point, but I know they don't really know the whole story, so I try to let that go. But it really hurts my feelings that he is doing all this. Really makes it hard to feel much compassion sometimes.

I don't know if I'm asking for advice, or what. I think the next time he tells me that he's having a good stiff drink, I might want to tell him, as nicely as possible, that I don't want to hear about him drinking when the doctor has strictly forbidden it.

I don't know what to do...I guess I am asking for advice after all.

thanks,

Johanna
_________________
Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 67

I just want to say this - I know that my Dad is facing a terrible diagnosis, I know that I cannot possibly know his suffering. I just know that I can only do so much, and I don't think it's right for him, or anyone else, to try to make me feel guilty because I can't do more.

This is just a crappy situation - for everyone here at this forum!

Johanna
_________________
Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2403

((((Johanna))))))

I've got no advice off the top of my head, but I'll think on it for you. I just wanted to tell you that I'm sorry. Some patients --- even beloved family members, can be real stinkers. You are doing a great job and YOU KNOW IT.

I'm having difficulty typing today, so I'll touch back with you again soon.

God love you and sending warm hugs.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 67

Thank you so much for your kind response...I was really afraid that I'd be blasted for that post! I feel SOOOO guilty. I know that I am lucky that he's still here. That he can do for himself so far, and that I can hear his voice, even if it is demanding and sarcastic (but this is nothing new). I guess I also feel that God has given him some more time. Time to mend a LOT of fences that need mending, time to lend some smiles (he has a beautiful smile and the most beautiful blue eyes - I got his smile, but not the eyes). But he never did smile so much. I just wish he would be able to better take advantage of that.

I try to step back and think that he IS living his life the best way that he knows how - right or wrong. You're right. I am doing all that I can. Thank you for reminding me of that, sometimes I lose sight of that.

And thank you for letting me vent. I guess it is what it is and we just have to keep "rolling" with it.

Thank you so much, PBJ, and God bless you and big hugs to you, too!

Johanna
_________________
Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2403

Johanna,

Here I am, with hands that working better today!! Laughing

Sorry it was so brief yesterday, but I really wanted to get across the point that this IS the place for you to safely air your feelings and concerns. If you don't get them out somewhere, you'll explode, and that wouldn't be pretty for anyone. Wink

I have to tell you that, after reading your posts here, I noticed that you were right back in the forums asking questions about further treatment, as it looks like there has been some spread to your Dad's spine. Brought a tear to my eye to see how strong and caring you are to keep pushing for the best for him despite less than stellar treatment from him.

I'm not sure why some people react this way to a cancer diagnosis and subsequent treatment. It's brutal -- as you well know and I think it can bring out the best and the worst in people's personalities. I'm not really sure how I'd respond to all of this and used to tell my husband that all the time.

If I may be blunt --- screw what the neighbors think!! The only person you have to answer to, in the end, is YOU. Like I said before, you know you are doing everything humanly possible and then some, for your Dad. At the end of the day it's how you will look back on what you did for him and feel assured that it was the best, that will keep you going.

Don't forget that when it seems so overwhelming, is when God truly picks us up and carries us through the dark times. That one smacked me right in the face one time, during our fight, because I realized that it wasn't "ME" getting through this on my own, but God carrying me and picking me up every time I stumbled. He's there for you too. We are never alone. Even at times when we can't pray or are angry, God knows what is in our hearts.

I'm truly sorry that he's being so difficult for you. I can't imagine how much more difficult that journey would be. Just keep doing the best you can and when things get too rough, go stick your face in your pillow and scream at the top of your lungs!! Won't accomplish much, but you'll feel better! Laughing

A good sense of humor is the special ingredient that makes this journey a little easier.

God bless and thank you for your comment on my post in the LC forum. It meant a lot to me. Always know you can come to these forums to vent too. That's part of what they are here for. It's not an easy job being a caregiver.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 67

Thanks so much, PBJ! Yes, I know you are right, God certainly does have his hands full carrying us through - we must be like teenagers to him, always whiny and complaining, and thinking we're big enough to do things all on our own! Good thing he has big hands!

Yes, I did post about it possibly being spread to his spine. I haven't heard that from the doctor, and I certianly don't have MD behind my name, but the cat scan report definitely states a "new sclerotic focus in the T12 vertabral body...suspicious for a neoplastic bone lesion". And we've known Daddy's onconlogist for several years now, he's a hematologist, too, and Daddy has been having polycythemia vera (too many red blood cells) for about 6 years now that they've been monitoring. I can tell from the doctor's sweet face that he is VERY concerned about Daddy when he's looking at his file, so even though he hasn't told us yet, I know that the news is not good. Maybe I don't really want to know at this point.

There's only so much you can take at one time, BUT on the good side, I am finally getting some relief from these adrenal and thyroid issues I have been having, and it is really good to start feeling like I can actually deal with things somewhat - not that I want to deal with them, well, you know. After two years of misdiagnosis and not knowing how I can possibly go on in a "normal" day with debilitating fatigue and horrendous headaches 24/7, these cancer adventures have not made that ANY easier. Now at least I'm beginning to be able to think again and have been able to have days where I haven't had to take pain pills for the headaches. So I have been having some bright spots.

There again, God lifting me up.

do you have arthritis? The reason I'm asking is that my Grandmother had arthritis terribly bad in her hands and I remember how bad it hurt her...I hope you get relief with that!

Big hugs!

Johanna
_________________
Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 67

My Dad finished his 14th round of chemo a couple of weeks ago. The same week he finished up, something went wrong with his back. He's had back problems all his life, so didn't think too much of it, but after a couple of days he really became a mess. I think it was because he was taking too many pain meds, and he doesn't think it hurts at all to overlap by not taking at the correct time, nor does he think it hurts to take multiple types (in addition to the whiskey he drinks a great deal of). Anyway, he was in a bad way, and although I'd check on him, there wasn't much I could do since he wanted to live by himself. A week ago last Sunday at 6 pm, he decided he wanted to go to the hospital for the pain. When he called, he was slurring his speech so much I could hardly understand him. We went and got him, took him to the ER. They took Xrays and said he's got arthritis in his back, but nothing "major". They couldn't admit him. So they gave him a shot of morphine and sent him home. Mind you, he was so dehydrated that they had a VERY difficult time getting blood out of him to test. He wasn't drinking anything but alcohol and eating nothing but honey buns - seriously.

So we took him home with us "for a few days". I thought it would help him to get stronger, since his blood counts were low from the last chemo. He's been with us a week, and he's looking much better, but he wants to lay flat on his back ALL DAY (and he lives in our living room, our house is small) It's not good enough to lay on the couch either, he want us to have the roll out bed out for him ALL THE TIME, which means we can't use our living room at all. We still however, put the bed up at noon and he can sit or lay on the couch until 10 pm - at which time we make his bed up for him.

Anyway, thankfully, he's having no pain or other symptoms except for his back, and I've had bad back pain after a car accident, so I really can sympathize, but you can't just stop moving. He gets mad at us when we make him get up, but he moves around so much better after he's up awhile.

but this is the kicker. Yesterday he decided he was going to go check on his stuff at his house. Now, all day he was moving like he could not make another step, hunched over and loudly moaning and groaning at every step. It is so heartbreaking to see, it just absolutely rips my heart out! But when he walked out to his car, when he thought no one was looking, he stood up straight, walked spritely, without using his cane, and just plopped down in the seat of his car, reached over like NOTHING and fastened his seat belt. Okay, we thought, he's feeling better.

Then he came home, obviously having drank alcohol at home (on top of the Lortab 10 he's taking), and could barely move again. He does this stuff a lot. When people aren't looking, he moves around like nothing is wrong with him, but as soon as he thinks you're watching him, there he goes again.

To hear the way he carries on, he's been on his deathbed every moment of every day since before his surgery in December. I just don't know how much more of this I can deal with, and I don't know what to do. I don't want to go home, I don't want to talk to him because I know he's playing some kind of game. Isn't his diagnosis BAD ENOUGH, do we have to add more drama to it? I feel incredibly sorry for him and loathe him all at the same time. This is wreaking serious havoc on our family, too - we're all holding together but sometimes it is by our fingernails.

I feel so incredibly guilty for feeling all this - it's eating me up and I'm having to take Ativan several times a day just to keep a semblance of control of myself.

Any advice, or do you know who I can contact for personal counseling (and for him too)? We don't have any money to afford to pay for this sevice, so we're at a disadvantage there.

Any help would be greatly appreciated.

Thanks so much!

Johanna
_________________
Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.

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