Husband is a horrible patient

skipper85
skipper85 Member Posts: 229
edited March 2014 in Caregivers #1
My husband finished treatment for Stage IV throat cancer. He also had a melanoma removed.
Now he has to decide whether to have surgery or not for non-small cell lung cancer. I try to talk with him about the cancer but he doesn't want to discuss it. It's taken him over a month now to think about surgery or some other treatment. He's really dragging his feet about a decision. He was in the hospital for 6 days after his biopsy because his lung didn't heal due to emphysema we just found out he has. The nurses were so glad to see him leave (even though they would never say it). He was a very difficult patient. When he's misearable - everyone is misearable.

He doesn't go to a regular physician and won't. So I don't know if he's depressed or his thyroid is low. His doctors at this point are kind of disgusted with him. He's not a good patient and doesn't want to hear what they have to say. I don't know if he's in denial or just doesn't understasnd the seriousness of his illness. He hasn't even gone for his follow-up appointments for his throat cancer or melanoma. He thinks because he had treatment he's cured. These are important follow-ups. I'm just trying to roll with the punches but it's wearing me down mentally. I see him everyday looking worse. I know he hasn't given up, yet he can't seem to move forward. We have a home based business and all his focus is on that. I ran it fine when he was in the hospital but now he's back in charge. Maybe it's one of the few things he can control. I'm happy he is able to still work and has something to keep him busy without taxing him too much.

Anyway, I'm sad, tired, frustrated and angry that he doesn't care enough about me or himself to at least make a decision about his treatment. He still smokes and drinks. I don't want him to suffer and I feel guilty that sometimes I wish it was all over with because I know there is only going to be one outcome and right now I feel like I'm being slowly tortured mentally. I am trying to be as supportive as he will let me. He doesn't require any physical care right now. It's just hard to see him like this - fighting every effort doctors are trying to make to prolong his life.

We've been married 40 years and this is the most difficult year of our marriage. I take my vows seriously and will be with him no matter what. Sometimes I just wish he'd be more cooperative and make things easier for the rest of us.

I am planning to join a local caregiver's support group but I'm waiting for his surgery decision first. I have put off all my doctor appointments and plans to work around him but I think I have to take care of myself too.

Does anyone have a spouse or relative that has reacted this way? Would love some input or suggestions. Thanks for letting me vent.
Thanks,

Skipper

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    the horrible patient
    Still drinking - you might think about AlAnon - this is a support group that will help you if you decide to stay with someone who is still drinking. There are people in the group whose loved ones are also ill with diseases along with their alcoholism.

    I don't think if I can tell if he has always been this way - about other things, I mean? We recognize selfish behavior, even if we don't know the cause - and sometimes they are just truly selfish. You know your husband's history and probably have a suspicion on why he is this way.

    Hugs to you. I understand staying but know how difficult it can be.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    Welcome
    Hello Skipper and welcome to our caregivers family. I was a caregiver for my dad. He passed in March from ec. I am counting my blessings as I type this. My dad was wonderful compared to some of these other patients! Wow, I give you all a lot of credit. There is another woman on the ec discussion board who has a husband that sounds very similar to yours. Her name is Linda. You might want to check that board out and hook up with her. As a caregiver you have to do the best you can. Which you are doing. It has to be his decision on where he is going to go next. You can suggest things, but it is totally up to him in the end. Make sure you do keep up on your own care. Go to your appts. Your husband is not going anywhere just yet. Give yourself the time you deserve. And for him to continue smoking and drinking is just down right nuts! That is what got him where he is in the first place! Some men are beyond stubborn, and we as wives just have to accept it and let it go. I will be thinking and praying for both of you. May God grant you both peace at this difficult time in your journey with cancer. Keep in touch.
    Tina
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
    Sorry
    I am so sorry you are having a hard time. Even with the best patient, care giving is very hard. When a patient is difficult, it makes caring for them even more frustrating and tough. I don't have any words of wisdom, but I can make some suggestions from my experiences with my husband. He died in October, 2009 after a six year battle with colon cancer. First, don't feel guilty about any of your feelings. You have a right to all of the many feelings you have. Second, don't put off joining the caregivers group. Our support group was really helpful. In fact, I went this morning and have continued to go every month as a surviving caregiver. You may even find that others there are having similar issues with their patient. Third, don't put off you own appointments. The number one thing a caregiver should do is care for herself. It is often the hardest thing to do, but you need to do it. Appointments can always be reschedued if they conflict. I know I did that many times. The decision to care for himself is one your husband must make for himself. Not making a decision is in itself a decision that he is making right now. That is his right, too. I didn't always agree with my husband's decisions but I always supported them. Just hang in there. Hopefully, he will find his way soon. Take care, Fay
  • kimmygarland
    kimmygarland Member Posts: 312
    #5
    grandmafay said:

    Sorry
    I am so sorry you are having a hard time. Even with the best patient, care giving is very hard. When a patient is difficult, it makes caring for them even more frustrating and tough. I don't have any words of wisdom, but I can make some suggestions from my experiences with my husband. He died in October, 2009 after a six year battle with colon cancer. First, don't feel guilty about any of your feelings. You have a right to all of the many feelings you have. Second, don't put off joining the caregivers group. Our support group was really helpful. In fact, I went this morning and have continued to go every month as a surviving caregiver. You may even find that others there are having similar issues with their patient. Third, don't put off you own appointments. The number one thing a caregiver should do is care for herself. It is often the hardest thing to do, but you need to do it. Appointments can always be reschedued if they conflict. I know I did that many times. The decision to care for himself is one your husband must make for himself. Not making a decision is in itself a decision that he is making right now. That is his right, too. I didn't always agree with my husband's decisions but I always supported them. Just hang in there. Hopefully, he will find his way soon. Take care, Fay

    Sounds Awful
    Sounds awful having an uncooperative patient. You both are dealing with a lot and it makes your job as caregiver much more difficult.

    Hang in there and please come back here to vent, WE UNDERSTAND.
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #6
    kimmygarland said:

    Sounds Awful
    Sounds awful having an uncooperative patient. You both are dealing with a lot and it makes your job as caregiver much more difficult.

    Hang in there and please come back here to vent, WE UNDERSTAND.

    My father-in-law is the same way
    He is a diabetic with all the symptoms. He won't take care of himself. He wants to argue about what anyone says including his doctors. He continues to smoke, and drink, eat all unhealthy foods. He won't allow my mom-in-law to go to the dr. with him because according to him "she asks to many questions." She gets so mad, and I see it taking its toll on her. She will come stay with me just to get away from him.
    You can't make him do what he doesn't want to do. No one can. Make him comfortable, and ask him what he wants you to do. Let him know you are there if he may need anything.
    Please take care of yourself. Don't miss your appointments etc...
  • skipper85
    skipper85 Member Posts: 229
    #7
    ms.sunshine said:

    My father-in-law is the same way
    He is a diabetic with all the symptoms. He won't take care of himself. He wants to argue about what anyone says including his doctors. He continues to smoke, and drink, eat all unhealthy foods. He won't allow my mom-in-law to go to the dr. with him because according to him "she asks to many questions." She gets so mad, and I see it taking its toll on her. She will come stay with me just to get away from him.
    You can't make him do what he doesn't want to do. No one can. Make him comfortable, and ask him what he wants you to do. Let him know you are there if he may need anything.
    Please take care of yourself. Don't miss your appointments etc...

    Thanks Everyone
    Thanks so much to everyone for replying. I am following your advice and taking care of myself. As a matter of fact I went to the doc yesterday and found out I have tonsillitis. I thought I was too old for that. Anyway I also made an appointment for my annual physical. I know I have to continue with my own life while giving my husband all the support I can. Next week I am going to contact the local caregiver support group. Hopefully they meet at night.

    As soon as I'm feeling better I am going to start working on getting a little more organized with our home based business and slowly transition everything so that when my husband can't work anymore it will all flow smoothly. That will take a lot of pressure off.

    I will feel better after we see the rad onc Wednesday and my husband can ask questions to help him make a decision about treatment, surgery or maybe nothing. I like to know where I'm going and I like to plan ahead. Unfortunately with cancer sometimes you just don't have time to plan or it doesn't work out because you just don't know what is going to happen next. So I'm learning patience (the hard way).

    You are all in my prayers. Thanks again.

    Skipper
  • KinzieK
    KinzieK Member Posts: 7
    #8
    my dad is a rough patient
    My dad shocks me at times with the statements he makes. It took a month to get him to agree to a pain patch. He has refused to go to an ER and even told me he'd refuse medical care if I took him. Now he's refusing to consider a pain pump. He doesn't drink or smoke but he is a rough patient. He's very angry at his own decline and it's awful to witness, so I totally feel for you. I have at times thought, "God just take him quietly in the night" only to then hate myself for having that thought. I've also taken a lot of verbal abuse over the past 3 months from him and quiet honestly, I had a moment where me committing suicide entered my mind. It was for a moment and I was under extreme duress. I know I can't be the only caregiver who has had that fleeting thought. A support group can help at any time. If I didn't talk to anyone I'd probably crumble. From stress, from shame that I can't be perfect. Don't think you have to wait for him to come around. My dad will not attend any support group as he considers them for the weak. That is his choice. Me, I'm attending. Sometimes you just have to do what's right for your sanity. If you do that, then you'll be in a better place to deal with him. Today I told my dad about a Pancreatic cancer "networking" group. I think phrasing it that way was better than saying "support group" to him. He didn't refuse, but he didn't agree either. The day of the meeting I'll take him. Either he'll get something out of it or he won't. I've told myself that in the end I've done the best I can in an unbelievably difficult situation. Take care Skipper, you aren't alone. PS: I'm going for my own breast cancer follow up appointment today. I missed my originally scheduled appointment back in August. I'll be a 5 year survivor November 2.
  • skipper85
    skipper85 Member Posts: 229
    #9
    KinzieK said:

    my dad is a rough patient
    My dad shocks me at times with the statements he makes. It took a month to get him to agree to a pain patch. He has refused to go to an ER and even told me he'd refuse medical care if I took him. Now he's refusing to consider a pain pump. He doesn't drink or smoke but he is a rough patient. He's very angry at his own decline and it's awful to witness, so I totally feel for you. I have at times thought, "God just take him quietly in the night" only to then hate myself for having that thought. I've also taken a lot of verbal abuse over the past 3 months from him and quiet honestly, I had a moment where me committing suicide entered my mind. It was for a moment and I was under extreme duress. I know I can't be the only caregiver who has had that fleeting thought. A support group can help at any time. If I didn't talk to anyone I'd probably crumble. From stress, from shame that I can't be perfect. Don't think you have to wait for him to come around. My dad will not attend any support group as he considers them for the weak. That is his choice. Me, I'm attending. Sometimes you just have to do what's right for your sanity. If you do that, then you'll be in a better place to deal with him. Today I told my dad about a Pancreatic cancer "networking" group. I think phrasing it that way was better than saying "support group" to him. He didn't refuse, but he didn't agree either. The day of the meeting I'll take him. Either he'll get something out of it or he won't. I've told myself that in the end I've done the best I can in an unbelievably difficult situation. Take care Skipper, you aren't alone. PS: I'm going for my own breast cancer follow up appointment today. I missed my originally scheduled appointment back in August. I'll be a 5 year survivor November 2.

    my dad is a rough patient
    Hi Kinziek:

    How did you make out with your follow-up bc appointment? Hope everything went well. I'm so glad to hear you will be a 5 year breast cancer survivor in Nov.

    Boy can I identify with you and your situation with your Dad. You are truly to be commended for the way you are handling your dad. Try and stay strong. I take an anti-depressant and I also have something for anxiety just for meltdown situations. It helps a lot.

    My husband is still dragging his heels about the lung cancer surgery. Last week he finally went for a pulmonary function test. I know the surgeon got the results Monday but we haven't heard anything. I've finally got my husband to agree to call the surgeon today to at least find out if his lung function test shows he is a candidate for surgery. Meanwhile he's been losing weight and I can see the decline in his health. I know he's scaird but he'd never admit it. He's become a little distant and does not like it when I ask if there's anything he needs or anything I can do for him. It's very stressful to see someone you love refuse treatment. It does have a lot to do with ego and not admitting to being weak or sick.

    So in just a short while he'll call the doctor and probably have to wait for a call back. Then I'm sure he'll say he needs the weekend to decide whether he wants surgery or not. He's afraid of the complications and being in the hospital for a long time. He knows he'll be there at least 5 to 7 days but it could be a lot longer if he has complications from his emphysema or general ill health. He still smokes and won't wear a patch so he gets VERY irritable in the hospital. The last time he was there I swear the nurses had a party after he left.

    Keep me posted on your health and how the support (networking) group works out for your Dad. I don't think my husband would ever go to any kind of health related function or group.

    Hang in there - you're doing a great job. Your Dad is a lucky man and I know he loves you. He's just probably very scaird and unhappy.

    Skipper85
  • KinzieK
    KinzieK Member Posts: 7
    #10
    skipper85 said:

    my dad is a rough patient
    Hi Kinziek:

    How did you make out with your follow-up bc appointment? Hope everything went well. I'm so glad to hear you will be a 5 year breast cancer survivor in Nov.

    Boy can I identify with you and your situation with your Dad. You are truly to be commended for the way you are handling your dad. Try and stay strong. I take an anti-depressant and I also have something for anxiety just for meltdown situations. It helps a lot.

    My husband is still dragging his heels about the lung cancer surgery. Last week he finally went for a pulmonary function test. I know the surgeon got the results Monday but we haven't heard anything. I've finally got my husband to agree to call the surgeon today to at least find out if his lung function test shows he is a candidate for surgery. Meanwhile he's been losing weight and I can see the decline in his health. I know he's scaird but he'd never admit it. He's become a little distant and does not like it when I ask if there's anything he needs or anything I can do for him. It's very stressful to see someone you love refuse treatment. It does have a lot to do with ego and not admitting to being weak or sick.

    So in just a short while he'll call the doctor and probably have to wait for a call back. Then I'm sure he'll say he needs the weekend to decide whether he wants surgery or not. He's afraid of the complications and being in the hospital for a long time. He knows he'll be there at least 5 to 7 days but it could be a lot longer if he has complications from his emphysema or general ill health. He still smokes and won't wear a patch so he gets VERY irritable in the hospital. The last time he was there I swear the nurses had a party after he left.

    Keep me posted on your health and how the support (networking) group works out for your Dad. I don't think my husband would ever go to any kind of health related function or group.

    Hang in there - you're doing a great job. Your Dad is a lucky man and I know he loves you. He's just probably very scaird and unhappy.

    Skipper85

    Missed my cancer follow up, took my dad to the ER
    Couldn't make my appointment. My dad needed IV pain meds. It was a pancreatitis flare up due to his dietary noncompliance. He ate bland for a day then wanted Mexican food yesterday. It was his 74th birthday. Hard to just say, "No" when ya know it's his last birthday. I did make it to my primary care Dr. the day after my dad's ER trip. My Dr. gave me a script for anti-anxiety meds for those pull your hair out days. I haven't even picked it up from the pharmacy, but just knowing it's there gives me great comfort. I've been taking my dad for short walks (he can only walk about 4 houses down to our community park). We sat in the park this morning. He has been distant through most of this. Too painful to talk I think. He did tear up yesterday. He was sad but my husband did his best to get my dad to chuckle. He's going to eat bland today. Maybe he decided eating spicy isn't worth the pain...at least for now.
    I've been telling myself that this is his death and it will to a large extent, be what he makes it to be. It isn't much I know, but it sort of gives me permission to not beat myself up for not being able to get him to find peace.
    I'm sure you husband will change his mind at least a hundred times over the weekend. Whatever he decides, Skipper, it's his decision. You've done a wonderful job being there for him. And I appreciate you being here for me too.

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