Trading Places

by VivaLasViejas 5,286 Views | 20 Comments Guide

This is a story about two sisters and what "caregiving" really involves when the health of the elder one begins to fail and the younger---a registered nurse specializing in geriatrics---realizes that a lifetime of being taken care of is over, and she herself has become the caregiver.

  1. 18

    Trading Places

    It was never supposed to be this way.

    We were supposed to grow old together, my sister and I. We were supposed to sit on the porch---she in the shade, I in the sun just like always---and watch our great-grandkids frolic on the front lawn while we reminisced about our long lives. She is twelve years older than I; she changed my diapers and bathed me and taught me to read when I was only four. And I have to admit that with both parents long gone, it's reassuring to still be her "baby sister", even though I'm on the verge of becoming a senior citizen myself.

    But it's not going to turn out like that, because my sister is in end-stage COPD and I know from too many years of experience that she is going into that good night, and not gently. She is already on oxygen 24/7, can no longer walk more than a hundred feet without having to sit down and catch her breath, and needs assistance with ADLs that she's not yet willing to accept. Even more ominously, she has reached that time that all COPD patients come to if they live long enough, when they become selfish and angry because all their energy is spent fighting for breath.

    Living with my husband and me, she is difficult to tolerate at times. She wants to be served breakfast in bed rather than walk the thirty feet to the dining room. She fusses endlessly over tiny details---the toast is too dark, the eggs too runny, the bacon too crispy. It takes her over an hour to get ready for a doctor's appointment, and we're almost always late anyway because she has to do this last-minute search for her lip balm/cell phone/water bottle/fill in the blank. She drops things on the floor and doesn't bother to pick them up, which means her room is a dump; my husband does the best he can to keep it clean, but it's like shoveling the walk when it's still snowing out. She hasn't done her own laundry in years; she doesn't take her dinner dishes to the kitchen (a jaunt of about five feet from the table); she leaves used Kleenex all over the place.

    But about the time I'm ready to punt and find her a nursing home, I remember the gentle arms that held me when I was little. The funny facial expressions and warped sense of humor that still crack me up every time she lets loose. The voice of wisdom that has guided me all of my life.

    I have not been handling this well. At all. When she caught pneumonia in December and nearly died, I crashed into a horrible depression once the emergency was over. When she accidentally overdosed on Klonopin, it was I who almost ended up in the psych ward. When she decided she was going to give up and let death come when it would, I became angry and started sniping at her and criticizing her every chance I got.

    It wasn't until a recent therapy session that I came to understand what's happened. Now, over the course of my career in geriatrics, I've helped literally hundreds of people accept the fact that their parent, grandparent, uncle/aunt, or sibling was failing and needed help; but until my doctor pointed it out, it had never occurred to me that I was now in the same situation.

    My sister and I have traded places. I have become the caregiver.

    It's been difficult to accept that she is now the one who needs a calming influence, a port in the storm that her life has become. On her good days, it's almost like old times as we sit together in her room and trade "war stories" about our careers (she was a legal secretary for years) or talk about what it was like growing up in our dysfunctional family. We have always been polar opposites---literally!---in everything; she was the model child, the good student, the dutiful daughter, the perfect lady. She dressed well and had an innate grace that has never failed her, even in this final season of her life. But for all our differences, we have always been best friends......and though she probably isn't leaving me tomorrow, her eventual absence is already creating a gaping hole in my heart.

    As a clinician, I know the time has come to research assisted living or adult foster care. She needs help with bathing and washing her hair. She needs transportation to appointments because she can no longer drive safely, and because she has to have someone help her with her oxygen. She needs space for all her belongings. She needs someone to clean her room, wash her laundry exactly the way she wants it done, and fix her three meals a day. My husband and I are being run ragged with her incessant needs. It's time to make the move, and all three of us know it.

    But as a sister, I can't help putting off the inevitable. She is 66 years old. The same age our mother, grandfather, and her biological father were when they died. I keep telling her that she HAS to break what I call the "curse of 66", but I don't know if she will.......a lot can happen between now and her birthday in late September. I would hate to move her to an ALF just so she can get sick and pass away a few months later; I know the guilt would be immense, and I would forever second-guess myself and regret not allowing her to spend those last months with us.

    Even now, I vacillate back and forth all the time, with every bad day and each new episode of frustration with her unwillingness to do even what she is able to do for herself. Truth is, I don't know what she is experiencing; the only frame of reference I have is my infrequent asthma attacks, which can be severe. And I wonder what it must be like for her to have to battle for every. single. breath.

    There are no easy answers. I'm not even sure there are any answers. All I know is that my sister is dying and I am in charge of her care.....how I handle it will determine, in large part, what the last of her life will look like. And like many of my patients' families who have gone through similar processes with their loved ones, I am far from certain that I'm equal to the task.
    Last edit by Joe V on Mar 16, '13
    gamber2313, poppycat, leslie :-D, and 15 others like this.
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  3. About VivaLasViejas

    VivaLasViejas joined Sep '02 - from 'The Great Northwest'. Age: 55 VivaLasViejas has '17' year(s) of experience and specializes in 'LTC, assisted living, geriatrics, psych'. Posts: 25,161 Likes: 36,308; Learn more about VivaLasViejas by visiting their allnursesPage


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    20 Comments so far...

  4. 2
    ((hugs)) and much love to you and your family.
    herring_RN and VivaLasViejas like this.
  5. 2
    Hugs to you Viva!
    herring_RN and VivaLasViejas like this.
  6. 2
    Quote from VivaLasViejas
    It was never supposed to be this way.

    We were supposed to grow old together, my sister and I. We were supposed to sit on the porch---she in the shade, I in the sun just like always---and watch our great-grandkids frolic on the front lawn while we reminisced about our long lives. She is twelve years older than I; she changed my diapers and bathed me and taught me to read when I was only four. And I have to admit that with both parents long gone, it's reassuring to still be her "baby sister", even though I'm on the verge of becoming a senior citizen myself.

    But it's not going to turn out like that, because my sister is in end-stage COPD and I know from too many years of experience that she is going into that good night, and not gently. She is already on oxygen 24/7, can no longer walk more than a hundred feet without having to sit down and catch her breath, and needs assistance with ADLs that she's not yet willing to accept. Even more ominously, she has reached that time that all COPD patients come to if they live long enough, when they become selfish and angry because all their energy is spent fighting for breath.

    Living with my husband and me, she is difficult to tolerate at times. She wants to be served breakfast in bed rather than walk the thirty feet to the dining room. She fusses endlessly over tiny details---the toast is too dark, the eggs too runny, the bacon too crispy. It takes her over an hour to get ready for a doctor's appointment, and we're almost always late anyway because she has to do this last-minute search for her lip balm/cell phone/water bottle/fill in the blank. She drops things on the floor and doesn't bother to pick them up, which means her room is a dump; my husband does the best he can to keep it clean, but it's like shoveling the walk when it's still snowing out. She hasn't done her own laundry in years; she doesn't take her dinner dishes to the kitchen (a jaunt of about five feet from the table); she leaves used Kleenex all over the place.

    But about the time I'm ready to punt and find her a nursing home, I remember the gentle arms that held me when I was little. The funny facial expressions and warped sense of humor that still crack me up every time she lets loose. The voice of wisdom that has guided me all of my life.

    I have not been handling this well. At all. When she caught pneumonia in December and nearly died, I crashed into a horrible depression once the emergency was over. When she accidentally overdosed on Klonopin, it was I who almost ended up in the psych ward. When she decided she was going to give up and let death come when it would, I became angry and started sniping at her and criticizing her every chance I got.

    It wasn't until a recent therapy session that I came to understand what's happened. Now, over the course of my career in geriatrics, I've helped literally hundreds of people accept the fact that their parent, grandparent, uncle/aunt, or sibling was failing and needed help; but until my doctor pointed it out, it had never occurred to me that I was now in the same situation.

    My sister and I have traded places. I have become the caregiver.

    It's been difficult to accept that she is now the one who needs a calming influence, a port in the storm that her life has become. On her good days, it's almost like old times as we sit together in her room and trade "war stories" about our careers (she was a legal secretary for years) or talk about what it was like growing up in our dysfunctional family. We have always been polar opposites---literally!---in everything; she was the model child, the good student, the dutiful daughter, the perfect lady. She dressed well and had an innate grace that has never failed her, even in this final season of her life. But for all our differences, we have always been best friends......and though she probably isn't leaving me tomorrow, her eventual absence is already creating a gaping hole in my heart.

    As a clinician, I know the time has come to research assisted living or adult foster care. She needs help with bathing and washing her hair. She needs transportation to appointments because she can no longer drive safely, and because she has to have someone help her with her oxygen. She needs space for all her belongings. She needs someone to clean her room, wash her laundry exactly the way she wants it done, and fix her three meals a day. My husband and I are being run ragged with her incessant needs. It's time to make the move, and all three of us know it.

    But as a sister, I can't help putting off the inevitable. She is 66 years old. The same age our mother, grandfather, and her biological father were when they died. I keep telling her that she HAS to break what I call the "curse of 66", but I don't know if she will.......a lot can happen between now and her birthday in late September. I would hate to move her to an ALF just so she can get sick and pass away a few months later; I know the guilt would be immense, and I would forever second-guess myself and regret not allowing her to spend those last months with us.

    Even now, I vacillate back and forth all the time, with every bad day and each new episode of frustration with her unwillingness to do even what she is able to do for herself. Truth is, I don't know what she is experiencing; the only frame of reference I have is my infrequent asthma attacks, which can be severe. And I wonder what it must be like for her to have to battle for every. single. breath.

    There are no easy answers. I'm not even sure there are any answers. All I know is that my sister is dying and I am in charge of her care.....how I handle it will determine, in large part, what the last of her life will look like. And like many of my patients' families who have gone through similar processes with their loved ones, I am far from certain that I'm equal to the task.
    Viva hugs to you your story brought tears to my eyes.
    herring_RN and VivaLasViejas like this.
  7. 2
    Wow, Viva...(HUGS)...wonderful post...remover to take care if yourself as well..(HUGS)
    herring_RN and VivaLasViejas like this.
  8. 5
    Thank you for telling this painful story. It sounds like you had such lovely memories and that is a blessing. There is a fine line between love, obligation, and resentment. It sounds like you have done all you can for her and if you decided to put her into assisted living know that you truly have gone the extra mile already with her. You are caring for her in a different way by allowing her to get better help than you are physically or emotionally able to provide. I work in peds on a floor with a lot of total care kids who live in long term care homes. I don't judge the parents-- I am exhausted caring for these patients for just 12 hours-- with the help of trained nurse's aids and therapists. It sounds like you don't have any help at all in your home. Your strength is a testament to your love. My thoughts are with you as you grieve in so many ways.
    poppycat, Twinmom06, prnqday, and 2 others like this.
  9. 1
    You are such a great writer. My sis is 10 years older than me and practically raised me. I can only imagine what you have been going through. Have y'all considered private duty as an option? I'm sure that you are doing your best and I am equally sure she knows it. Thanks for sharing your story.
    VivaLasViejas likes this.
  10. 1
    ((HUGS)) dear friend
    VivaLasViejas likes this.
  11. 1
    *hugs and prayers*
    VivaLasViejas likes this.
  12. 1
    I am so sorry you are going through this. It sounds like you at the least need a break. Perhaps arrange some respite care for a weekend or a few days. Caregivers become so fatigued and often miss out on living life for years. You should go and look at places, it doesn't mean you have to move her out tomorrow, but if something should happen you'll feel better knowing you had time to decide. Many hugs to you and your husband.
    VivaLasViejas likes this.


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