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Lupus Care From the Caregiver's Viewpoint

05/05/2011

  • Christine Miserandino:

    We’re so appreciative, as lupus patients, of our caregivers, but I know sometimes we want to know, how can we help you? So tell us, what is it like on the other side of lupus?

  • Cynthia Calhoun:

    I think, for me, the "I’m OK" all the time when you are really not OK is the hard part. If you tell me OK, I want to believe that you’re OK -- and then if I come back and you are curled up, you were never OK when I left you.

  • Debbie Cotton:

    It does confuse us. I think if we look at you, we feel like you need to rest, then you need to rest. I think as parents -- as a wife -- we can look at you and tell when you have gone far enough, and you need to take a break. I know my daughter wants to be stubborn and she wants to be like everybody else.

  • Debbie:

    I mean I’m sure mom; I don’t do that to you at all . (Laughter)

  • Janet Miserandino:

    Well I’m going to rat you out. ( Laughter ) Christine has a tendency to either be fine and wonderful, and calling me up and giving me updates about Olivia, or when she is really at her worst; she kind of shuts down and doesn’t even answer the phone. Then I get angry, because then I think something is really wrong. It makes it worse.

  • Cynthia:

    And not knowing is very, very hard.

  • Debbie:

    And I think it’s a little different for me than it is for either of you. I know you live with your husband, of course, and you live in the same town with Christine. My daughter has been living away from home for almost a year now, so telephone is our connection, and if she doesn’t answer the phone, or if she doesn’t answer my text ...

  • Group:

    You panic. 

  • Debbie:

    I panic.

  • Christine:

    And I am sure there’s plenty of parents out there that don’t live close to their child who might be living with lupus, and that connection is really important.

  • Debbie:

    Very, very important.

  • Cynthia Calhoun:

    And if you all don't open up and share and say well, "This is what to expect," we are blindsided.

  • Janet:

    We as caregivers need our support group, we need caregivers. And I have close girlfriends for years who will call and say, "How is Christine?" and other people stop asking because it is going on so long.

  • Cynthia:

    Exactly.

  • Cynthia:

    Because most people don't understand this is lifelong. It's not like there is a healing process, and it's over, and we're back to normal. Well this is normal, this is what we live with.

  • Debbie:

    And when you are working -- and you do work -- you do have to manage your time as best as you can, because your sick daughter might need you. At times during the year, I'll be sick myself, and I won't even take a day off, because I know that my days need to be saved up, because Robin might need me.

  • Christine:

    I am afraid to even look this way, because you guys have identified -- I'm like scared right now, because I know.

  • Janet:

    I feel that vibe, exactly. I never would take sick days, I would go in dragging sick, coughing, sneezing. It's terrible, I know. But I would try to save those days, because what if she was going into the hospital?

  • Cynthia:

    There is no such thing as taking off.

  • Cynthia:

    But you learn to manage your time for that. And even with family, you know, "Well can you guys take off for this?" I really can't. I need to save my vacation time for if he goes in the hospital, because when Eric goes to the hospital, Cynthia goes to the hospital.

  • Christine:

    This really is lupus intervention. (Laughter) But I'm guilty of all these things that you are saying, and it's so nice to talk you guys, because I am kind of getting it from the perspective from the other side but ...

  • Cynthia:

    It's hard.

  • Debbie:

    Not just your mom’s, huh?

  • Christine:

    Not just my mom. You know, I thought she was unique, but apparently, she isn't.

  • Janet:

    It’s like the worst thing that a parent can go through, and I’m sure a spouse. To see your child sick, you’d rather be sick yourself. It's so sad, it's so upsetting, and just like I believe the lupus patient is prone to depression, I think so are the caregivers, because I have been sad many, many times and we pretend to be OK, too. Just like you pretend that you are OK, and we all shouldn't, but we do.

  • Cynthia:

    It's a hurting feeling. I mean, I have my cry moments in the shower, I have my cry moments when I go and take me a bath -- you know -- you find times for those cry moments, because in front of that particular person, you want to be the strongest you can be. But on the inside, you are dying, you are ripped apart, you know? But you put on a happy face, and you smile, and you say, "We can get through this together," then you go in the bathroom and you bawl.

  • Debbie:

    Yeah, I think we have to be a little stronger actually than the patient -- to keep from putting that kind of pressure. I know Robin couldn't handle it if she felt that I was ...

  • Cynthia:

    Right. And my husband definitely couldn't handle it. I mean, the "man of the house" --come on -- I can't lose it in front of him when he's sick. It's not going to work.

  • Christine:

    Well, I think you all need to exchange phone numbers, because you need your own significant other support group.

  • Janet:

    And there are significant other support groups? I know there are some where we live. So I guess you have to look into it.

  • Christine:

    And Mom, I’m getting you their numbers.

  • Janet:

    OK.

  • All:

    (Laughter) Sounds good. Sounds great.

  • Cynthia:

    But we learn to compromise a lot, because you learn to live with lupus just like you all learned to live with lupus.

  • Christine:

    So wait, so I think I've learned that maybe it is our lupus?

  • All:

    Yeah, absolutely.

  • Christine:

    OK. (Laughter)

  • Janet:

    And that you should always call your mother! (Laughter)

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Christine Miserandino is a lupus advocate who writes, blogs, and speaks about living with lupus.

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