guilty

pb
pb Member Posts: 2
edited March 2014 in Caregivers #1
I have been dating my bf for over 5 yrs. He was just dx'd w bladder ca, which is his 2nd cancer dx (our first together). He is understandably depressed but does not want to go for psych support. He also understandably wants to pursue surgery ASAP.

I am scared and concerned and sad and angry. I want to "be there" for him. But I don't want to "lose myself," either. The holidays are approaching and I wanted to visit my family. I also have a demanding job and planned on taking a couple of days of much-needed vacation time.

I am high risk myself and come from a family with cancer, so I DO understand how serious this is. How can I set some reasonable boundaries without abandoning him---or building up a storehouse of burnout or resentment?

Thanks.
pb

Comments

  • ketziah35
    ketziah35 Member Posts: 1,145
    #2
    I am sorry for your bf's
    I am sorry for your bf's diagnosis and you have a right to have concerns. Since you are not married, you will not be available for family leave. Unless he has given you power of atty it may be difficult in assisting him with coordinating with his finances and getting medical information. I do not say this to scare yOy, but the realism is that not being married or a blood relation complicates things. Has his family been notified and are they willing to help? Has anyone contacted the ACS to see what transportation and support teams they have fr home services? Has anyone looked at hiring a nurse or recruiting friends to come and sit with him while you are at work or doing other things like going to the store? Does he belong to a church or organization, where people can be asked to come and help. The work situation is going to. Be interesting, since you can not quaify for family leave. If you are to be the primary caregiver do you have. Some vacation time or are you prepAred to take unpaid leave?

    This is the realism of the situation. Not trying to scare you, but trying to motivate you to begin researching options. This will reduce your stress. Also see what bf did last time he was dxd. How did he recruit his support team?
  • pb
    pb Member Posts: 2
    #3
    ketziah35 said:

    I am sorry for your bf's
    I am sorry for your bf's diagnosis and you have a right to have concerns. Since you are not married, you will not be available for family leave. Unless he has given you power of atty it may be difficult in assisting him with coordinating with his finances and getting medical information. I do not say this to scare yOy, but the realism is that not being married or a blood relation complicates things. Has his family been notified and are they willing to help? Has anyone contacted the ACS to see what transportation and support teams they have fr home services? Has anyone looked at hiring a nurse or recruiting friends to come and sit with him while you are at work or doing other things like going to the store? Does he belong to a church or organization, where people can be asked to come and help. The work situation is going to. Be interesting, since you can not quaify for family leave. If you are to be the primary caregiver do you have. Some vacation time or are you prepAred to take unpaid leave?

    This is the realism of the situation. Not trying to scare you, but trying to motivate you to begin researching options. This will reduce your stress. Also see what bf did last time he was dxd. How did he recruit his support team?

    thanks ketziah
    Thank you for responding. It was quite validating. You did not scare me. Unfortunately, you also did not tell me anything new. I realized long ago this could be an issue if either of us got sick. I mentioned this to him 3 yrs ago when we were both well, but unfortunately, he was not ready to get married!!!! So now we are in this position. I guess he will---once again---have to rely on his family to provide most of the care and make the tough decisions, since I do not want to marry him under these circumstances (marriage is tough enough as it is w/o these complications). That means I fear I will have to stand on the sidelines through some or much of this...not an easy place to be since I am used to being involved. Re taking time off: I need my job. As I said before, I am also high risk for cancer and have had several biopsies and procedures (including a prophylactic oopherectomy), so I NEED my insurance. I will not be ready for retirement for at least a couple of years so downtime, aside from paid vacations, is not an option. We live in separate locations---and I have to pay my own bills---so unpaid leave is also not an option.

    That said, while I am obviously concerned about the physical consequences of his cancer, I am almost equally concerned about his mental health. I am a professional in the field so I know---and he expresses---the "hot buttons" of a person in crisis. I cannot ethically provide services to him and, although I have expressed my concerns, he will not seek out mental health support b/c he feels this is a "private matter." As you point out, I don't have legal access to his doctors, so they do not have to talk with me. I may need to find a way of appealing to his family so they can intervene, but they are not in the mental health field (and appear dubious of mental health supports) so my concerns may fall on deaf ears.

    I have faced cancer and cancer scares as a professional, as a high-risk single person, and as a caregiver to family members. I know the value of a "fighting spirit," the "will to live," and a "positive attitude," which appear to help both the patient and their support network. That he refuses support leaves me feeling helpless and scared. My own anxieties kick up: what if he tries to hurt himself? what if he just gives up? what if he refuses medical treatment? All of these are possibilities.

    I feel like I am providing support with my hands tied behind my back locked in another room.

    How do you guys cope under these circumstances??? I am not proud. I will happily avail myself to some of your strength and ingenuity.

    Thanks for your help and thanks for listening.
  • karenbeth
    karenbeth Member Posts: 194
    #4
    pb said:

    thanks ketziah
    Thank you for responding. It was quite validating. You did not scare me. Unfortunately, you also did not tell me anything new. I realized long ago this could be an issue if either of us got sick. I mentioned this to him 3 yrs ago when we were both well, but unfortunately, he was not ready to get married!!!! So now we are in this position. I guess he will---once again---have to rely on his family to provide most of the care and make the tough decisions, since I do not want to marry him under these circumstances (marriage is tough enough as it is w/o these complications). That means I fear I will have to stand on the sidelines through some or much of this...not an easy place to be since I am used to being involved. Re taking time off: I need my job. As I said before, I am also high risk for cancer and have had several biopsies and procedures (including a prophylactic oopherectomy), so I NEED my insurance. I will not be ready for retirement for at least a couple of years so downtime, aside from paid vacations, is not an option. We live in separate locations---and I have to pay my own bills---so unpaid leave is also not an option.

    That said, while I am obviously concerned about the physical consequences of his cancer, I am almost equally concerned about his mental health. I am a professional in the field so I know---and he expresses---the "hot buttons" of a person in crisis. I cannot ethically provide services to him and, although I have expressed my concerns, he will not seek out mental health support b/c he feels this is a "private matter." As you point out, I don't have legal access to his doctors, so they do not have to talk with me. I may need to find a way of appealing to his family so they can intervene, but they are not in the mental health field (and appear dubious of mental health supports) so my concerns may fall on deaf ears.

    I have faced cancer and cancer scares as a professional, as a high-risk single person, and as a caregiver to family members. I know the value of a "fighting spirit," the "will to live," and a "positive attitude," which appear to help both the patient and their support network. That he refuses support leaves me feeling helpless and scared. My own anxieties kick up: what if he tries to hurt himself? what if he just gives up? what if he refuses medical treatment? All of these are possibilities.

    I feel like I am providing support with my hands tied behind my back locked in another room.

    How do you guys cope under these circumstances??? I am not proud. I will happily avail myself to some of your strength and ingenuity.

    Thanks for your help and thanks for listening.

    not married
    I am not married either, and am caregiver to my bf of 8 1/2 years. I was panicked at first, worried that i wouldn't be able to advocate for him in the hospital, and that I would be sidelined by his family, who are lovely people but haven't been close to him over the years, and live in another state, but so far that hasn't happened. I have found that the doctors have no problem talking to me once they know I am always with him. I made it a point to go to every appointment with him, and make phone calls on his behalf, so they know i'm the contact person. And sometimes I just say I'm his wife--no one questions it. Most of the doctors refer to him as my husband by now...but I worry about what will happen if he has to be hospitalized again...that is a different story.

    If he gets sick enough that he can no longer work, we may have to get married so he can be on my health insurance. It sucks to have that as a reason to get married, but I would do it in a heartbeat. My situation is different from yours, as we live together and I feel married even though we aren't. But I do have some of the same concerns as you, if he gets sicker, if tough decisions have to be made on his behalf...if his family wants to step in...it's scary.

    This board is a great place for getting advice, for venting, for being listened to. Good luck to you and your bf.

    Karen
  • ketziah35
    ketziah35 Member Posts: 1,145
    #5
    karenbeth said:

    not married
    I am not married either, and am caregiver to my bf of 8 1/2 years. I was panicked at first, worried that i wouldn't be able to advocate for him in the hospital, and that I would be sidelined by his family, who are lovely people but haven't been close to him over the years, and live in another state, but so far that hasn't happened. I have found that the doctors have no problem talking to me once they know I am always with him. I made it a point to go to every appointment with him, and make phone calls on his behalf, so they know i'm the contact person. And sometimes I just say I'm his wife--no one questions it. Most of the doctors refer to him as my husband by now...but I worry about what will happen if he has to be hospitalized again...that is a different story.

    If he gets sick enough that he can no longer work, we may have to get married so he can be on my health insurance. It sucks to have that as a reason to get married, but I would do it in a heartbeat. My situation is different from yours, as we live together and I feel married even though we aren't. But I do have some of the same concerns as you, if he gets sicker, if tough decisions have to be made on his behalf...if his family wants to step in...it's scary.

    This board is a great place for getting advice, for venting, for being listened to. Good luck to you and your bf.

    Karen

    O have a gay friend who has
    O have a gay friend who has a partner of 30 years who has been battling colon cancer. This is what he said. You have to get him to do a power of attorney to give you control over his financial management and medical management, a living will and will. Then you can make decisions on his behalf without being married. The kicker is you will not be able to use family leave or can not put him on your insurance.
  • karenbeth
    karenbeth Member Posts: 194
    #6
    ketziah35 said:

    O have a gay friend who has
    O have a gay friend who has a partner of 30 years who has been battling colon cancer. This is what he said. You have to get him to do a power of attorney to give you control over his financial management and medical management, a living will and will. Then you can make decisions on his behalf without being married. The kicker is you will not be able to use family leave or can not put him on your insurance.

    POA
    Yes, that's correct. You can purchase the durable power of attorney forms on the internet for a small fee, if you don't want to go through a lawyer. I have them ready, should we need them. You can also be named the health care proxy.

    I am lucky that we work at the same place and everyone knows us and our situation, and if I have to take a leave of absence they will let me.

    Just got word that his latest scan results were "mixed." That has me terrified. We see the oncologist tomorrow for his recommendations. ugh.
  • Barbara53
    Barbara53 Member Posts: 652
    #7
    pb said:

    thanks ketziah
    Thank you for responding. It was quite validating. You did not scare me. Unfortunately, you also did not tell me anything new. I realized long ago this could be an issue if either of us got sick. I mentioned this to him 3 yrs ago when we were both well, but unfortunately, he was not ready to get married!!!! So now we are in this position. I guess he will---once again---have to rely on his family to provide most of the care and make the tough decisions, since I do not want to marry him under these circumstances (marriage is tough enough as it is w/o these complications). That means I fear I will have to stand on the sidelines through some or much of this...not an easy place to be since I am used to being involved. Re taking time off: I need my job. As I said before, I am also high risk for cancer and have had several biopsies and procedures (including a prophylactic oopherectomy), so I NEED my insurance. I will not be ready for retirement for at least a couple of years so downtime, aside from paid vacations, is not an option. We live in separate locations---and I have to pay my own bills---so unpaid leave is also not an option.

    That said, while I am obviously concerned about the physical consequences of his cancer, I am almost equally concerned about his mental health. I am a professional in the field so I know---and he expresses---the "hot buttons" of a person in crisis. I cannot ethically provide services to him and, although I have expressed my concerns, he will not seek out mental health support b/c he feels this is a "private matter." As you point out, I don't have legal access to his doctors, so they do not have to talk with me. I may need to find a way of appealing to his family so they can intervene, but they are not in the mental health field (and appear dubious of mental health supports) so my concerns may fall on deaf ears.

    I have faced cancer and cancer scares as a professional, as a high-risk single person, and as a caregiver to family members. I know the value of a "fighting spirit," the "will to live," and a "positive attitude," which appear to help both the patient and their support network. That he refuses support leaves me feeling helpless and scared. My own anxieties kick up: what if he tries to hurt himself? what if he just gives up? what if he refuses medical treatment? All of these are possibilities.

    I feel like I am providing support with my hands tied behind my back locked in another room.

    How do you guys cope under these circumstances??? I am not proud. I will happily avail myself to some of your strength and ingenuity.

    Thanks for your help and thanks for listening.

    it takes a village
    Hey PB,
    I'm another happy cohabitator, and fortunately it's my mother rather than my man who is sick. We live together in his house, which he has willed to me (with mortgage) should he die before I do. We should execute mutual Power of Attorney and Health Care proxy forms -- thanks for the reminders!

    Like Karen, we often call each other "husband" or "wife" in the interest of convenience, and I doubt that anyone would question it if we got into a pinch. It does all become about personal boundaries, doesn't it? In two years of helping my mother, the one thing I have learned is that it takes a village to help someone get along in cancer-land.

    Good luck! Your image of hands tied behind back is a common feeling, because we caregivers have such impotent roles. We make no decisions, only follow orders and try to anticipate needs. You often must check your ego at the door, and make worldly matters get in line where they ought to be anyway. On the other hand, it may be the best chance we ever get to explore the frontiers of unconditional love.
  • karenbeth
    karenbeth Member Posts: 194
    #8
    Barbara53 said:

    it takes a village
    Hey PB,
    I'm another happy cohabitator, and fortunately it's my mother rather than my man who is sick. We live together in his house, which he has willed to me (with mortgage) should he die before I do. We should execute mutual Power of Attorney and Health Care proxy forms -- thanks for the reminders!

    Like Karen, we often call each other "husband" or "wife" in the interest of convenience, and I doubt that anyone would question it if we got into a pinch. It does all become about personal boundaries, doesn't it? In two years of helping my mother, the one thing I have learned is that it takes a village to help someone get along in cancer-land.

    Good luck! Your image of hands tied behind back is a common feeling, because we caregivers have such impotent roles. We make no decisions, only follow orders and try to anticipate needs. You often must check your ego at the door, and make worldly matters get in line where they ought to be anyway. On the other hand, it may be the best chance we ever get to explore the frontiers of unconditional love.

    Barbara53
    I like this --"exploring the frontiers of unconditional love"--nice way to put it.

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