My dad is a very difficult patient
I hate that he's going to put himself through as much torment and hell as he can to try to prove to himself "He's a man." If it isn't that, then maybe it's some sort of way he wants to hasten his death? I don't know. I know that when I had cancer I wanted to eat what I could hold down, but then again, I wasn't stage IV either. What else can I say except this sucks.
Comments
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Rock and Hard Place
You are really between a rock and a hard place. I'm sorry you are dealing with a stubborn patient. My dad passed away about ten years ago, but I remember fighting with him just to see a doctor. He actually laid in his bed for three days after a fall. He kept telling my mom that he just sprained something. No, he broke his hip. Have you called in hospice? They might be able to give you some support in the diet area. Maybe your father's dr could give him a list of foods that will cause problems. That way you could say sorry, that is on the no no list. Then the dr would be the bad guy instead of you. Otherwise, you may have to just keep taking him to ER. Remind him that that is his choice. Remind yourself, too, that you are not responsible for his choices. Or you can just flat out refuse to give him the offending foods and walk away. Go outside, take a walk, or whatever. Tell him that you aren't going to be responsible for his pain, and you aren't going to listen to the abuse. Then stick by it. Not easy. I literally cussed my dad out to get him to the hospital with the broken hip. I felt pretty guilty on the ride there, but it was the right thing to do. I think I shocked him. You may have to make your dad mad, but don't feel any guilt. Also, take care of yourself. Fay0 -
Thank yougrandmafay said:Rock and Hard Place
You are really between a rock and a hard place. I'm sorry you are dealing with a stubborn patient. My dad passed away about ten years ago, but I remember fighting with him just to see a doctor. He actually laid in his bed for three days after a fall. He kept telling my mom that he just sprained something. No, he broke his hip. Have you called in hospice? They might be able to give you some support in the diet area. Maybe your father's dr could give him a list of foods that will cause problems. That way you could say sorry, that is on the no no list. Then the dr would be the bad guy instead of you. Otherwise, you may have to just keep taking him to ER. Remind him that that is his choice. Remind yourself, too, that you are not responsible for his choices. Or you can just flat out refuse to give him the offending foods and walk away. Go outside, take a walk, or whatever. Tell him that you aren't going to be responsible for his pain, and you aren't going to listen to the abuse. Then stick by it. Not easy. I literally cussed my dad out to get him to the hospital with the broken hip. I felt pretty guilty on the ride there, but it was the right thing to do. I think I shocked him. You may have to make your dad mad, but don't feel any guilt. Also, take care of yourself. Fay
Thank you for your response, and I mean that from the bottom of my heart. I'll try the list thing. The Dr. at the ER was a Godsend. He did what he could by giving him a verbal list of what would upset his stomach but maybe an actual written list of good and bad foods in his hand would help. When he was diagnosed he threw the social worker out, refusing to discuss hospice, support groups or a DNR. Thinks that's for the "weak." My sibs are not up to taking the abuse from him that comes with being his caregiver. Extended family say stupid things like, "it's the pain meds that are messing him up" and of course they make him food that literally makes him sick for 3 days. I told them he can't eat spicy but they do it anyway with some ignorant thought that the spices will burn the cancer out. He eats it without complaint and holds on till we drive off, then it's hell for the next couple of days. Family. They don't call to ask if he's up for a visit, they just call and say, "We're coming." Then they say stupid crap to him about "why bother with chemo" or "if I get cancer, I'm not going to a Dr. I'm just gonna power through it." His brother actually thought he was being funny by calling him, "crip." I already put my foot down with them about unexpected visits but telling them to stop with stupid comments, well, I'm afraid I'll go nuclear on them. Thanks Fay, just knowing that others had hard times with their ill loved ones helps. I'm gonna book a one hour massage for myself.0 -
two massagesKinzieK said:Thank you
Thank you for your response, and I mean that from the bottom of my heart. I'll try the list thing. The Dr. at the ER was a Godsend. He did what he could by giving him a verbal list of what would upset his stomach but maybe an actual written list of good and bad foods in his hand would help. When he was diagnosed he threw the social worker out, refusing to discuss hospice, support groups or a DNR. Thinks that's for the "weak." My sibs are not up to taking the abuse from him that comes with being his caregiver. Extended family say stupid things like, "it's the pain meds that are messing him up" and of course they make him food that literally makes him sick for 3 days. I told them he can't eat spicy but they do it anyway with some ignorant thought that the spices will burn the cancer out. He eats it without complaint and holds on till we drive off, then it's hell for the next couple of days. Family. They don't call to ask if he's up for a visit, they just call and say, "We're coming." Then they say stupid crap to him about "why bother with chemo" or "if I get cancer, I'm not going to a Dr. I'm just gonna power through it." His brother actually thought he was being funny by calling him, "crip." I already put my foot down with them about unexpected visits but telling them to stop with stupid comments, well, I'm afraid I'll go nuclear on them. Thanks Fay, just knowing that others had hard times with their ill loved ones helps. I'm gonna book a one hour massage for myself.
Kinzie,
Book two one-hour massages and get them back to back.
I am sorry you are going through this with your dad. It's not fair and it's not right.
I really hope you get a break soon from somewhere.
Bless your heart.
Hugs.0 -
AHHHH!!!!Noellesmom said:two massages
Kinzie,
Book two one-hour massages and get them back to back.
I am sorry you are going through this with your dad. It's not fair and it's not right.
I really hope you get a break soon from somewhere.
Bless your heart.
Hugs.
Your dad sound a lot like my father-in-law. He has pumonary fibrosis and is not a compliant patient. He curses at the hospital staff, makes demands, and talk to everyone like they are idiots. I think he is just horrible at times. He goes in and out of the hospital, smokes, drinks at times, and is just a really grumpy old man. Thank God he's not my father. I like the message idea, do something really nice for yourself. God bless you..Alison0 -
Love Those MassagesKinzieK said:Thank you
Thank you for your response, and I mean that from the bottom of my heart. I'll try the list thing. The Dr. at the ER was a Godsend. He did what he could by giving him a verbal list of what would upset his stomach but maybe an actual written list of good and bad foods in his hand would help. When he was diagnosed he threw the social worker out, refusing to discuss hospice, support groups or a DNR. Thinks that's for the "weak." My sibs are not up to taking the abuse from him that comes with being his caregiver. Extended family say stupid things like, "it's the pain meds that are messing him up" and of course they make him food that literally makes him sick for 3 days. I told them he can't eat spicy but they do it anyway with some ignorant thought that the spices will burn the cancer out. He eats it without complaint and holds on till we drive off, then it's hell for the next couple of days. Family. They don't call to ask if he's up for a visit, they just call and say, "We're coming." Then they say stupid crap to him about "why bother with chemo" or "if I get cancer, I'm not going to a Dr. I'm just gonna power through it." His brother actually thought he was being funny by calling him, "crip." I already put my foot down with them about unexpected visits but telling them to stop with stupid comments, well, I'm afraid I'll go nuclear on them. Thanks Fay, just knowing that others had hard times with their ill loved ones helps. I'm gonna book a one hour massage for myself.
I love massages. I get one every other week for my fibromyalgia. They were real life savers when I was the caregiver. Of course, it didn't hurt that my massage therapist is also the leader of our cancer support group. She is a breast cancer survivor and lost her father to cancer. Actually, my husband's cancer was dx before she learned she had breast cancer. I leaned on her. Then she leaned on me. Then we both leaned on each other. I, however had the added bonus of getting a massage at the same time. Take care and hang in there. Fay
P.S. Tell the relatives who bring inappropriate food that you will call them to take him to the ER when your dad gets sick. Then do it. Even if you don't expect them to actually take him, maybe a midnight call will wake them up. As for the stupid statements, just look at them and ask, Why would you say something like that? Then just do what my husband often told me. Just let it go, dear. Just let it go.0 -
Tough patient
Although I'm nowhere near to having all of the issues you are facing, my husband is a difficult patient also. He's great with the staff, and his doctors don't seem to be having problems. The eating and drinking part is what is going to make me pull my hair out. Since his laryngectomy last Friday, he wants to eat. He says he can swallow his spit what's the difference. I'm terrified of him coming home, cracking open a beer and wanting tenderloin and cabbage or london broil with potatoes and peas and gravy.
Don't you understand, loving husband, that if you put fistulas in your throat you will go back in for surgery and will be in the hospital for longer? Don't you understand, sweet man, that I'm trying to help you from getting pneumonia, or drowning in your own spit if the staples don't heal? Don't you understand, man of mine, I'm trying to help you get better?!
This is not easy when you first instinct is to give in to get them to A) get off your back or
smile and forget about things for a while. I can't be around him 24/7 to make sure he does what he is supposed to. He has to take responsibilty for himself.
Lots of hugs - I prefer pedicures myself. Have to get scraped off the chair when they finish.0 -
Welcomemswijiknyc said:Tough patient
Although I'm nowhere near to having all of the issues you are facing, my husband is a difficult patient also. He's great with the staff, and his doctors don't seem to be having problems. The eating and drinking part is what is going to make me pull my hair out. Since his laryngectomy last Friday, he wants to eat. He says he can swallow his spit what's the difference. I'm terrified of him coming home, cracking open a beer and wanting tenderloin and cabbage or london broil with potatoes and peas and gravy.
Don't you understand, loving husband, that if you put fistulas in your throat you will go back in for surgery and will be in the hospital for longer? Don't you understand, sweet man, that I'm trying to help you from getting pneumonia, or drowning in your own spit if the staples don't heal? Don't you understand, man of mine, I'm trying to help you get better?!
This is not easy when you first instinct is to give in to get them to A) get off your back or smile and forget about things for a while. I can't be around him 24/7 to make sure he does what he is supposed to. He has to take responsibilty for himself.
Lots of hugs - I prefer pedicures myself. Have to get scraped off the chair when they finish.
I recognized a new name here and wanted to say welcome to the board none of us really ever wanted to be on. It is good to be here with others who are facing similar life changes. You are right, your husband will have to take responsibility for his own health, but it sure is hard to stand by and watch them do potentially damaging things. Caregiving comes with it's own challenges for each of us. Hang in there. Fay0 -
hi miss faygrandmafay said:Welcome
I recognized a new name here and wanted to say welcome to the board none of us really ever wanted to be on. It is good to be here with others who are facing similar life changes. You are right, your husband will have to take responsibility for his own health, but it sure is hard to stand by and watch them do potentially damaging things. Caregiving comes with it's own challenges for each of us. Hang in there. Fay
thank you for the welcome. Would it hurt anyone's feelings if I said if I had to choose to be in the caregiver army, I would have run away? At some point I may go bald from all the hair I pulled out. He's doing way better than I thought. Think sometimes I just need to let him be instead of going w instinct and being around and available all the time. Today I stayed home. I didn't want to wear the Emperor's New Clothes and had to do laundry. He is texting me off and on what's going on and when he has a complaint. Nice to have the distance, even if it's just for a day. Don't think either one of us thought I would stay home all day. Ahh the wonders of technology that allow me to be 25 miles away but still talk to him
especially good now. until he gets better with his new voice box, phone calls are a no go. 0 -
Time offmswijiknyc said:hi miss fay
thank you for the welcome. Would it hurt anyone's feelings if I said if I had to choose to be in the caregiver army, I would have run away? At some point I may go bald from all the hair I pulled out. He's doing way better than I thought. Think sometimes I just need to let him be instead of going w instinct and being around and available all the time. Today I stayed home. I didn't want to wear the Emperor's New Clothes and had to do laundry. He is texting me off and on what's going on and when he has a complaint. Nice to have the distance, even if it's just for a day. Don't think either one of us thought I would stay home all day. Ahh the wonders of technology that allow me to be 25 miles away but still talk to him especially good now. until he gets better with his new voice box, phone calls are a no go.
I'm glad you got a liitle time off. Isn't it sad when we consider washing clothes or grocery shopping time off? I lost my husband almost a year ago, but I remember those days. Now I have too much time on my hands. Life can sure throw us some curves. You do need to take care of yourself, though. I think that is the hardest thing to do when we are caregiving. Fay
PS. No, you won't hurt anyones feelings if you say you would chose to run away from caregiving. One thing that is really nice about this board is that we understand that feeling.0 -
Caregivers Armymswijiknyc said:hi miss fay
thank you for the welcome. Would it hurt anyone's feelings if I said if I had to choose to be in the caregiver army, I would have run away? At some point I may go bald from all the hair I pulled out. He's doing way better than I thought. Think sometimes I just need to let him be instead of going w instinct and being around and available all the time. Today I stayed home. I didn't want to wear the Emperor's New Clothes and had to do laundry. He is texting me off and on what's going on and when he has a complaint. Nice to have the distance, even if it's just for a day. Don't think either one of us thought I would stay home all day. Ahh the wonders of technology that allow me to be 25 miles away but still talk to him especially good now. until he gets better with his new voice box, phone calls are a no go.
I had some major major doubts about my ability to be my husbands caregiver, I had just spent the end of 2009 being my mothers before the breast cancer took her. When I went to the liver cancer support group at the VA with my husband and found out what would be expected of me, I thought I was going to have one of those totally-lose-control-hyperventalating-panic-embarrass-myself-in-public panic attacks. I DID NOT SIGN ON FOR THIS< ITS MY SECOND MARRAIGE<WE"VE ONLY BEEN TOGETHER FOR EIGHT YEARS<NOT AGAIN!!!(I called my sister and asked her if she remembered whether I'd said that "sickness and in health thing" at my wedding)
I have since started therapy, gotten on antidepressants, and am learning that if I don't take care of myself, I have nothing to give to anyone else. Its still been a rocky road, because his ammonia levels from the liver cancer make him very hostile to deal with sometimes,and I feel guilty for getting mad at him when he's so sick, but it's been getting better. Actually, I've been getting better. So welcome to the caregivers board. Hang on, cause this is the rollercoaster of your life!
Penny0 -
Getting madPennymac02 said:Caregivers Army
I had some major major doubts about my ability to be my husbands caregiver, I had just spent the end of 2009 being my mothers before the breast cancer took her. When I went to the liver cancer support group at the VA with my husband and found out what would be expected of me, I thought I was going to have one of those totally-lose-control-hyperventalating-panic-embarrass-myself-in-public panic attacks. I DID NOT SIGN ON FOR THIS< ITS MY SECOND MARRAIGE
Getting mad seam prefectly fine to me. I get mad at my husband he gets mad at me. That started the day we married. I don't want to get mad at him cause he is sick, but that would be pity and I know he would not want that, so if the feeling is to get mad I get mad and I tell him. He is my husband and he knows I love him. Same if he gets mad at me He tells me . We yell sometimes but you know we did that before he had cancer.
I say to get mad proves we are still in it. That we still love each other no pity party.
Love him like you always have and if that means little yelling sometimes go for it. Bottle it up and will do you or him any good.
Normal as close as I can get. We are still going to but heads. Love him always,the way you always have.0 -
walk the linezinniemay said:Getting mad
Getting mad seam prefectly fine to me. I get mad at my husband he gets mad at me. That started the day we married. I don't want to get mad at him cause he is sick, but that would be pity and I know he would not want that, so if the feeling is to get mad I get mad and I tell him. He is my husband and he knows I love him. Same if he gets mad at me He tells me . We yell sometimes but you know we did that before he had cancer.
I say to get mad proves we are still in it. That we still love each other no pity party.
Love him like you always have and if that means little yelling sometimes go for it. Bottle it up and will do you or him any good.
Normal as close as I can get. We are still going to but heads. Love him always,the way you always have.
we still argue too. before his surgery it was a walk on the wild side tho, as the tumor was making him super aggressive. you just have to walk the fine line between "you're being a butt cuz you're sick n scared n I'll leave you alone" and "you're being a butt cuz you're being a butt. I don't think so." You know him best so yell away! He's still your hubby, just have to think like I've been lately: this is hubby 2.0 and still working out the bugs 0
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