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Disease progression

09 Nov

My mother had a CT Scan this past Saturday to determine the progress of her disease and whether the current medication is doing any good. This afternoon, the doctor called to talk to her, then he called to speak to me at her request. She has trouble processing the things he says over the phone; I took notes while he and I were talking as best I could. He’s a nice person and very compassionate. I feel like he cares about my mother, and by extension, me and the family. I’m appreciative that he is honest, though he tries to couch things the best he can. I think he is a bit more straightforward with me than with my mother. But in the end, I generally tell her what he has said, because I don’t want her to not know things. There is little I won’t discuss with her, even when it’s difficult. I know my parents’ end of life decisions, as I’m their health care agent. We’ve done the paperwork for both of them, with me in the room to discuss things openly. I’ve spoken to my mother about concerns my brother had about my father’s mental health condition due to the pain he is in from his diabetic neuropathy and some back problems he is having. I know about their wills and their wishes. We’ve talked openly about death.

This time, I don’t know how to share with her. This time, I want to keep the words to myself, even from my brother and my husband and my mother’s brother, all of whom have been a part of this ongoing journey.

My mother’s doctor confirmed that her disease continues to progress, despite the current medication she is on. Spots are developing on her lungs, previous spots on her liver and in her lymph nodes are increasing in size. He is ready to try a new protocol at her option. But upon being questioned by me, he told me that this disease is going to continue to progress at a fairly fast rate, as it has to now. Post chemo, she had a recurrence in less than 3 months. Post radiation, basically the same time-frame, another three months.

We’ve been dealing with this since March of 2014. Eighteen months. What do I wish for at this point? That she makes it through to her birthday at the end of the year? To my birthday shortly after the new year? My husband’s birthday in early spring? The 2nd anniversary of her diagnosis? What do I hope for? No pain? No being bed-ridden? No needing 24 hour caregivers? No loss of dignity? No feeling of being a burden on the family?

The doctor is ready for us to talk to a social worker in his office about palliative care. He offered information to me on “what is to come”. He says Mom will start to lose weight for no reason. She’ll start being more fatigued and have even less stamina. She’ll move to being chair or bed-bound.

Those are the things I don’t want to discuss with her. The words I didn’t want to repeat to her.

She has been using a wheelchair and/or rolling walker with a seat (called a rollator) due to the stress fracture in her pelvis. But her ability to rebound from that has been poor. She’s been using the wheelchair and now the rollator since my niece’s wedding at the end of September. She’s tired a lot. Walking hurts her, and she’s exhausted after a short walk through the house. Is that the fracture or the disease? She’s short of breath sometimes, but she says it’s fatigue, the doctor is concerned it might be the spots in her lungs.

She tells me she wants to keep moving. She wants to go out and do things. I certainly don’t want her to give up. I just ache for her. I ache for what is to come. And I’m finding myself conflicted as to what to share with her…how much of my concerns I should and can share with her. There’s nothing she can do to change how I’m feeling, so why burden her with that? But I don’t know how to stay UP and positive all the time, especially since I’m working hard to hide the pain I’m in a lot of the time. I’m struggling to stay positive, to be her cheerleader, to put on a good face every time I see her.

It was easier to talk to her about all these things when she was still on the high side of this disease. Now, on the downward slope, it is all too painful and too real. I hope she will lead me to what she wants to talk about. But at some point I know there will be things she WON’T want to talk about that I will need to find the strength to address.

My mother is dying. How fast it will progress is beyond any of us. What to hope for, what to wish for, what to do…all beyond me at this point. I’m lost and angry and overwhelmed and sad and crying.

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6 responses to “Disease progression

  1. joey

    November 9, 2015 at 3:27 pm

    I’m not going to like this post.
    I am so sad for you. How strong and scared you must be, holding this knowledge and all the pain. You’re not helpless. You’re helpless to stop the disease, but you have so much control over increasing the quality of her life. Just you being there with the fake smile like a Band-Aid over your anguish is really beautiful.
    This is a gift you give your mother regularly. It’s a return. Mothers plaster those same smiles on their faces when we proudly cover the walls with crayon, or fall madly in love with the wrong man. It’s a return of all those times your mother supported you when she was beside herself with fear and frustration. It’s not a payback, just a return. What you’re giving your mother is exactly what she wants. She can tell you’re suffering, and she is, too, but she would rather think she’s shouldering the burdens alone. You’re right in your effort to hide your pain, because she needs that. Watching you fall apart now would be unbearable.
    When I was in my 20’s, I once asked my mother if she had felt burdened by being the only child near her mother at the end. To be the one to do all the things YOU do. She got uncustomarily angry with me and said, “I WAS FUCKING HONORED.” Now, if that doesn’t make you cry a tear of joy, I don’t know what will. I can’t even think about it without weeping.
    She’s lucky to have you because she’s done such a good job with you. You’ll keep her spirits up, you’ll cherish every moment, you’ll keep her as comfortable as you can. You’re much more powerful than you think.
    ❤ ❤ ❤

     
    • meANXIETYme

      November 9, 2015 at 5:34 pm

      Thank you for this reply. This was what I needed to hear. I am extraordinarily honored to be here, to be able to help, and to be the one she trusts to help her. That is never in question in my mind. What I question is the how I am able to accomplish it and whether I will actually be able to do it. I wouldn’t want this any other way…my husband and I planned to be here for just this reason. So that we are close and can do what needs to be done.
      These are the things my mother did for HER mother. And what she told me was that she wanted no regrets in how she spent the remaining years with her mother (who slowly went blind, then had a stroke, and then suffered with dementia). I want no regrets. I want to be there for her and make things as comfortable as possible and as GOOD as possible. And yes, if that means hiding my pain and hiding things from her that would cause her more distress, I will do it and I will do it without regret.
      Thank you. Even if you made me cry, thank you, Joey.
      Thanks for exchanging one word hug for another.

       
      • joey

        November 9, 2015 at 5:46 pm

        The human spirit is capable of withstanding too much. I think the real goal for you should be to plan, but not obsess, about the things that will come up. I have no doubt that you’ll make the right decisions, and you shouldn’t either.
        You maybe should consider increasing your therapy sessions, too?

         
      • meANXIETYme

        November 9, 2015 at 7:05 pm

        Plan but not obsess is a goal. I tend to overplan in order to control, so I have to keep myself in check with that. We have a doctor’s appointment on Wednesday, so we’ll see how that goes. Fortunately, my mother is still at a point where she’s fighting, so we’ll likely move on to try another medication. The doctor said on the phone that he’ll keep moving to new medications as long as Mom is willing and her body is able.
        I have great support from my therapist, so I know I can get to her when I need her, in addition to the regular appointments I have. I’m lucky to have found her!
        Thanks.

         
  2. April

    November 10, 2015 at 10:46 am

    Joey has said so much that reflects what I think. Even though I wonder what I would want people to say if I have a recurrence, I still don’t know what to say to others or the family members supporting them. I have lost a few friends in the last couple of years, one of them my sister. They all knew they were dying but had seemed to find some sort of inner peace with it. I send you my thoughts for strength to support your mom and hope she finds her inner peace.

     
    • meANXIETYme

      November 10, 2015 at 11:09 am

      Thank you, April. I know that others in my family ask me what my mother wants or what they should do or say and I have no answers for them. In some instances I will ask my mother, but often she has no answer either.
      I hope she finds some peace with what is happening, but I don’t know if or when that might happen. I will just continue to be there and as much as possible will let her lead the way. I hope that’s enough.

       

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