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Renaissance_Red
Renaissance_Red Member Posts: 6
edited March 2014 in Caregivers #1
I am a 40 yr old female and I met my BF just months ago. We hit it off and have been inseparable since. He told me his leukemia was in remission for 3 years. He went in Sept for his routine labs and they found it had returned. By the first of October he was in the hospital for his first round of chemo. He was out for 2 days last week and spiked a fever, now he's back at the hospital--neutropenic fever/mucositis.

I am his caregiver and I took a respite day today but I am trying to figure out how I can be his full time caregiver since working at my job full time just doesn't feel like an option right now. I can't focus at work, I just want to be near him and help him in any way I can. The prognosis isn't grim but it's not great either. So all I think of is the time we have together and making the most of it.

Of course since we're not married, I can't ask for FMLA leave but I have been looking into being his paid caregiver. I feel pretty lost right now, because I want to help him fight this and be there while he navigates through the process, while keeping his family in on the East Coast updated on his condition. I don't know if anyone else has dealt with supporting yourself, being your partner's caregiver and being able to pay for the necessities....right now I'm looking into PT work. Just need some guidance, so I can keep him at home as much as possible ( since he'll need some daily assist), keep up with the bills/rent and keep my sanity.

My full time job won't tolerate my absenteeism much longer I'm sure of it. And all I want to do is make sure we meet our basic needs. I don't want to use charity, etc just need some sage advice from others who have juggled all this and learn from them.

Comments

  • Luv2lunch
    Luv2lunch Member Posts: 270
    #2
    Hi,
    Welcome to the site. I
    Hi,
    Welcome to the site. I am 47 years old and taking care of my Mother who has rectal cancer. She moved in with my husband and me in April of this year and has not left. She has her own house about 15 minutes away but doesn't want to go back just yet. I am basically her caregiver full time. I have a 20 hour per week job, have a husband who is disabled at home, two dogs, and Mom. I sometimes feel like I am losing my mind. I do everything around the house, no help. My two brothers are basically no help.
    I have been trying to find full time work for a while now. There were two jobs I applied for right before Mom's diagnosis. Then I had to turn them down because of the situation. I do not regret that for a minute. It gives me more time with my Mom. No, it does not help me financially, but we are making it. I'm trying to cut corners every chance I can.
    If you feel that strongly about being near your BF, maybe part time work is an option?
    Like that old saying goes, life is short. I would rather struggle some with the bills, (cut out the premium cable, etc), and spend moments with my Mom. I don't know what next year will bring.
    I hope you will find the right situation for yourself. I will pray for you and your BF.
    Linda
  • Renaissance_Red
    Renaissance_Red Member Posts: 6
    #3
    Luv2lunch said:

    Hi,
    Welcome to the site. I
    Hi,
    Welcome to the site. I am 47 years old and taking care of my Mother who has rectal cancer. She moved in with my husband and me in April of this year and has not left. She has her own house about 15 minutes away but doesn't want to go back just yet. I am basically her caregiver full time. I have a 20 hour per week job, have a husband who is disabled at home, two dogs, and Mom. I sometimes feel like I am losing my mind. I do everything around the house, no help. My two brothers are basically no help.
    I have been trying to find full time work for a while now. There were two jobs I applied for right before Mom's diagnosis. Then I had to turn them down because of the situation. I do not regret that for a minute. It gives me more time with my Mom. No, it does not help me financially, but we are making it. I'm trying to cut corners every chance I can.
    If you feel that strongly about being near your BF, maybe part time work is an option?
    Like that old saying goes, life is short. I would rather struggle some with the bills, (cut out the premium cable, etc), and spend moments with my Mom. I don't know what next year will bring.
    I hope you will find the right situation for yourself. I will pray for you and your BF.
    Linda

    thank you for the kind words and having someone else's insight on being a caregiver is very helpful. I really am putting my BF first and trying to find any means possible to support him and spend as much time as we can together. Since we don't know the final outcome,I want to utilize the time we have. It sounds like you are feeling the same way. Time is precious.

    take care of yourself and your Mom....enjoy each day together.

    Ailsa
  • Luv2lunch
    Luv2lunch Member Posts: 270
    #4
    Renaissance_Red said:

    thank you for the kind words and having someone else's insight on being a caregiver is very helpful. I really am putting my BF first and trying to find any means possible to support him and spend as much time as we can together. Since we don't know the final outcome,I want to utilize the time we have. It sounds like you are feeling the same way. Time is precious.

    take care of yourself and your Mom....enjoy each day together.

    Ailsa

    Ailsa,
    Just wanted to check
    Ailsa,
    Just wanted to check in and see how you were doing. Hope everything is ok.
    Linda
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
    Luv2lunch said:

    Ailsa,
    Just wanted to check
    Ailsa,
    Just wanted to check in and see how you were doing. Hope everything is ok.
    Linda

    Welcome Alisa
    Hello and welcome to our caregivers family. I was a caregiver for my dad. He passed in March from esophageal cancer with mets to the liver. You are a wonderful person to be willing and able to help your boyfriend by being his caregiver. God bless you. I agree with the others, we can all live without a lot of things. No cable, no computer, (like me, you can use the library computers), no outrageous cell phone plan, buy store brand products instead of name brand products. Hoping this will help. If you can manage it all by working part time, go for it! Also do not be afraid to ask for help from friends and family. Keep in touch. We will be thinking of you.
    Tina in Va
  • Renaissance_Red
    Renaissance_Red Member Posts: 6
    #6
    Luv2lunch said:

    Ailsa,
    Just wanted to check
    Ailsa,
    Just wanted to check in and see how you were doing. Hope everything is ok.
    Linda

    Hi Linda,

    thank you for the note. Tired is the new normal for me. I am just at wits end right now. The BF's mother is leaning on me hard to get stuff done and get it done now. I feel I'm getting pretty stretched and my BF's father is going through Multiple Myeloma so the whole family is under a lot of stress. But I seem to be the one with all the answers but really none of the power...I am the only one that is here in Seattle everyone else is back East.

    I am also still working full time as I try to find something with less hours, my company has made it clear they don't offer part time work.

    My BF is inpatient right now and should be out of the hospital soon. I still have to pay my own rent, bills etc and do the caregiving. I WANT to help him through this I just don't see any resolution to what is going on....The nurses keep telling me he NEEDS a caregiver and I'm willing to do that...but we weren't even living together when all this happened. I keep mentioning to his family that I can get hired on through DSHS as his caregiver but I'm not getting any input on that topic. Regardless, he will need a caregiver whether it's me or someone else.

    Sorry to unload I am just trying to sort all this out and do what I need to do...

    Ailsa
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #7
    Renaissance_Red said:

    Hi Linda,

    thank you for the note. Tired is the new normal for me. I am just at wits end right now. The BF's mother is leaning on me hard to get stuff done and get it done now. I feel I'm getting pretty stretched and my BF's father is going through Multiple Myeloma so the whole family is under a lot of stress. But I seem to be the one with all the answers but really none of the power...I am the only one that is here in Seattle everyone else is back East.

    I am also still working full time as I try to find something with less hours, my company has made it clear they don't offer part time work.

    My BF is inpatient right now and should be out of the hospital soon. I still have to pay my own rent, bills etc and do the caregiving. I WANT to help him through this I just don't see any resolution to what is going on....The nurses keep telling me he NEEDS a caregiver and I'm willing to do that...but we weren't even living together when all this happened. I keep mentioning to his family that I can get hired on through DSHS as his caregiver but I'm not getting any input on that topic. Regardless, he will need a caregiver whether it's me or someone else.

    Sorry to unload I am just trying to sort all this out and do what I need to do...

    Ailsa

    Being Here
    First, welcome to the board we never wanted to be on. I was a caregiver to my husband off and on for six years. Whether you are doing the actual caregiving or someone else is, your life will be filled with stress. You need to have a hear to heart talk with your bf. What does he want you to do?Then if it is something you can make happen, you need to decide what is right for you. Don't let others pressure you into doing something that is not in your best interest both emotionally and financially. Does your bf have an advanced directive for health care? You might want to talk to him about that, too. Who will make the decisions if he is unable to do so?. Also, what will happen when your caregiving chores end? Only you can answer these questions. They don't have easy answers either? Do you have a trusted friend or relative who can help you think through your options? Best of luck? Fay
  • nyogus1
    nyogus1 Member Posts: 30
    #8
    Renaissance_Red said:

    Hi Linda,

    thank you for the note. Tired is the new normal for me. I am just at wits end right now. The BF's mother is leaning on me hard to get stuff done and get it done now. I feel I'm getting pretty stretched and my BF's father is going through Multiple Myeloma so the whole family is under a lot of stress. But I seem to be the one with all the answers but really none of the power...I am the only one that is here in Seattle everyone else is back East.

    I am also still working full time as I try to find something with less hours, my company has made it clear they don't offer part time work.

    My BF is inpatient right now and should be out of the hospital soon. I still have to pay my own rent, bills etc and do the caregiving. I WANT to help him through this I just don't see any resolution to what is going on....The nurses keep telling me he NEEDS a caregiver and I'm willing to do that...but we weren't even living together when all this happened. I keep mentioning to his family that I can get hired on through DSHS as his caregiver but I'm not getting any input on that topic. Regardless, he will need a caregiver whether it's me or someone else.

    Sorry to unload I am just trying to sort all this out and do what I need to do...

    Ailsa

    Being practical
    It is hard to be practical when emotions are involved. I was my husband's BF in a committed relationship for 8+ years before his dx in April 2010. We decided to marry in May, 2010. We arranged our finances to be mutually beneficial. With the marriage, I am able to take sick time for Dr. appts., and FMLA is available (when the time comes). My work is a prioirty, as I am young enough that I will need to continue working for years to come. In this economy (Michigan) we value my job and medical insurance. Luckily he is well enough that I do not need to stay home continually to care for him. We will make considerations when/if that time comes. Since we now live together, he shares expenses with me, allowing me to plan for finances for the future. He was approved for Social Security Disability due to the Stage 4 cancer, since he can't work anymore (had to close his business). This helps us financially as well.

    Maybe the steps we've taken are not where you are, but you do need to put yourself in a position to be secure now and in the future.

    Only food for thought. Only you know what feels right for you. I'm just providing a side of the conversation that you may not have considered.
    Nancy
  • Caregiver1963
    Caregiver1963 Member Posts: 46
    #9
    nyogus1 said:

    Being practical
    It is hard to be practical when emotions are involved. I was my husband's BF in a committed relationship for 8+ years before his dx in April 2010. We decided to marry in May, 2010. We arranged our finances to be mutually beneficial. With the marriage, I am able to take sick time for Dr. appts., and FMLA is available (when the time comes). My work is a prioirty, as I am young enough that I will need to continue working for years to come. In this economy (Michigan) we value my job and medical insurance. Luckily he is well enough that I do not need to stay home continually to care for him. We will make considerations when/if that time comes. Since we now live together, he shares expenses with me, allowing me to plan for finances for the future. He was approved for Social Security Disability due to the Stage 4 cancer, since he can't work anymore (had to close his business). This helps us financially as well.

    Maybe the steps we've taken are not where you are, but you do need to put yourself in a position to be secure now and in the future.

    Only food for thought. Only you know what feels right for you. I'm just providing a side of the conversation that you may not have considered.
    Nancy

    I agree with being prepared and practical.
    I too was in a long term relationship with by BF and we decided to marry last February as it was clear his condition was worsening. Although it was not the ceremony we would have wanted, JP came to our home and did a simple ceremony with our 2 cats as our only witnesses- it was important for both of us. My husband's family was dificult through his illness and criticized everything I did for my husband. He wanted me to be the decision maker for my care so once we were married and he got to the point he couldn't communicate his needs I was the decision maker. Even if marriage is not an option making sure your boyfriend has an advance directive in place that details his health care wishes in the event he can't temporarily or permanently express the wishes is very important
    Take Care
    Mary

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