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      CommentAuthorshoegirl*
    • CommentTimeJul 27th 2008
     
    Dear God, Universe or Whoever Is Listening:

    Please give me grace under fire.
    Let me have the compassion of a saint, the kindness of a gentler soul and the courage of a warrior.
    I also need boundless energy, composure, a quicksilver mind and a generous sense of humor.

    In exchange for these gifts I will give my life's companion love and guidance through these last days on earth.
    I know his departure has begun and that I will not be accompanying him
    It is my job to keep him safe and guide him
    Until he reaches that final veil between the worlds of earth and spirit.

    While I appreciate the vote of confidance in me,
    I still question your choice.

    Doing my best and hoping it's somewhere close to good enough,

    Anne
    • CommentAuthorAdmin
    • CommentTimeJul 27th 2008
     
    Are we really supposed to have all of that? Compassion, energy, grace, kindness, courage? I have one or the other sometimes on various days, but all of it? Not me.

    May I add to the last line? We are doing our best in the best way we know how, and it has to be good enough.

    joang
    • CommentAuthordivvi*
    • CommentTimeJul 27th 2008
     
    Anne, how beautiful, and oh so true. you have written this for each of us. thank you. divvi

    i sometimes relate myself to a being the dominant female lioness of a pride. there is always a presence of unforeseen dangers to avoid, a need to protect and provide for the weak, an intolerance to aggressiveness within the boundaries of family , and the fortitude and burdens of being the decisonmaker for the good of the ones under her care. ironically, it seems to tell the same story of us who care caregivers. divvi
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      CommentAuthorshoegirl*
    • CommentTimeJul 27th 2008
     
    Thanks divvi! I can see you as a lioness. I can also see myself as one, snarling and snapping my ferocious jaws when provoked-ha, so far i haven't quite bitten off any heads...although I have come very close.

    Joan, I'm lucky if I get any one of those qualities any given day :) However, I've always been the type of person that wants it all.
    • CommentAuthorMya
    • CommentTimeJul 27th 2008
     
    I'm w/you Joan. I'm doing the best that I can. Wish I could have all those attributes every day. But then I would be perfect!!! I will print the prayer and add it to my daily meditation. Can't hurt.

    hugs,
    mya
  1.  
    Anne-beautifully said,
    Nora
  2.  
    Absolutely, perfectly beautiful, Anne, the harsh and beautiful truth. We are all blessed to read it.
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      CommentAuthorshoegirl*
    • CommentTimeJul 27th 2008
     
    Thanks all, appreciate the feedback.
    • CommentAuthorPatB
    • CommentTimeJul 27th 2008
     
    CFS/FM Serenity Prayer (Alzheimer's)
    Author Unknown

    Lord, grant me the serenity to accept
    The things I cannot change,
    The courage to change
    The things I can,
    And the wisdom to hide
    The bodies of Doctors I shot
    When they said,
    "He (she) is perfectly healthy,
    It's All In Your Head."

    PatB
    • CommentAuthortrisinger
    • CommentTimeJul 27th 2008
     
    PAtB, you are my hero. You deserve the Poet Laureate Award of the Year. Priceless.

    yhc
    • CommentAuthorPatB
    • CommentTimeJul 27th 2008
     
    trisinger,
    Can't take credit for this, but is is a favorite.
    PatB
    • CommentAuthorMawzy*
    • CommentTimeJul 27th 2008
     
    That is so funny. Love it!
    • CommentAuthorsheila1951
    • CommentTimeJul 27th 2008
     
    Oh, PatB, your poem is so so true!
    Sheila
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      CommentAuthorStarling*
    • CommentTimeJul 28th 2008
     
    PatB, every time I see something like that I bless the doctors I'm dealing with in Pennsylvania. I know that in California I would have landed in the looney bin by now, although with those doctors I probably wouldn't have been allowed admittance and I 'd be wondering the streets like Ophelia.

    Not one person that I've dealt with has told me there is nothing wrong with him. Even his own family practice doctor, who didn't see anything wrong himself, sent him to the stroke rehab hospital for an assessment as soon as I asked and kept him with them once he started seeing reports and then sent us to the dementia neurologist once that was obviously necessary.
    • CommentAuthorSunshyne
    • CommentTimeJul 28th 2008
     
    A word in defense of California doctors ... not a single doctor has told me there's nothing wrong with my husband -- they've all listened to what I have to say and have acted on it, even ER doctors seeing him for the first time.

    Starling, I think you were extremely unfortunate in CA, and they're trying to make up for it in PA. Glad things are better for you there. But you could've just moved to San Diego instead of all the way across country!
  3.  
    I have to agree w/Sunshyne here. I have often been thankful that I live in Los Angeles where so much excellent and diverse medical care is available. Since 1993 I've seen a plethora of doctors for DH. None of the meds were available then, but most docs did their best. Two were all but impossible, the rest were more than kind. When I didn't like a doc, I simply went to another in an endless choice.

    BTW, I've been to PA a couple of times, took the kids when they were little to do the Liberty Bell stuff--great place.
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      CommentAuthorStarling*
    • CommentTimeJul 28th 2008
     
    Sunshyne, <grin> I've never figured out if it was the insurance company, the medical group or the combination. It is possible I only needed to change doctors, which is why I tell people who are having problems to do that. It is possible that was the only thing I really needed to do - and the easiest.

    Complained about the California specialist to my therapist this morning. She joked that here in PA I even found a therapist that didn't try to send me to marriage counseling. You have to laugh. She isn't a specialist in dementia caregivers but she had done enough caregiving therapy, and dementia caregiving therapy that she "gets it". Today we talked about self-care for caregivers. I told her that SHE was part of my self-care plan. <grin>
    • CommentAuthorKitty
    • CommentTimeJul 28th 2008
     
    Even after the therapist I visited twice commented, "your husband is obviously not functional", she did ask if I had tried marriage counseling. Oh that would have been fun! In counseling with someone whose reasoning skills are close to nil. That was last year, before I realized what I was really dealing with. But even then my common sense told me it would be a waste of time.
  4.  
    I've had bad luck with therapists. The ones my family and I have gone to want every one to be happy. Read this book and all will be well. What do you plan to do-hmmm that's good. When I took on of my kids to a therapist he wouldn't share what was going on be caused that was "privileged". When I took my husband to a psychiatrist he came out of their visit shaking his head. His comment to me was-he's clueless isn't he. Now don't jump on me. I know there are excellent therapists out there.
    • CommentAuthorKitty
    • CommentTimeJul 28th 2008
     
    There should be a sub group of therapists who deal with dementia only. THEY wouldn't be recommending marriage counseling.
    • CommentAuthorSunshyne
    • CommentTimeJul 28th 2008
     
    Starling, my comments don't extend to therapists here. (Unfair, I suppose, I only tried one.) It was just after my husband had been diagnosed, there were all sorts of rotten things going on in my life as well, and I had a meltdown at my annual physical. Doc recommended this therapist, to help me deal with stress. I took my husband along (a) because I was nervous about leaving him alone, (b) he is used to going everywhere with me, and (c) I figured he could use some pointers on dealing with stress as well.

    Being ever so sensitive, the therapist insisted that I didn't need help dealing with stress, I needed grief counseling to help me while I watched my husband die. Mind you, my husband was sitting right there. I couldn't get her to switch topics, even after I suggested that might not be something he'd like to listen to.

    So I dealt with stress by cancelling the rest of my therapy appointments.
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      CommentAuthorStarling*
    • CommentTimeJul 28th 2008
     
    Sunshyne, Oh boy!!! Talk about clueless. And yes, I'd have cancelled the rest of my appointments too.

    But I have to admit that the fact that there is no time during my husband's appointment with his neurologist where I can talk to the doctor WITHOUT him makes things difficult. My daughter was with me for the last one because I thought I was going to be able to hold off the whole driving issue and she really hated the fact that there is no caregiver exclusive, and/or family exclusive, time built into the appointment.

    And although she is wrong that this is the wrong doctor and/or practice for us, she certainly does have a point.

    On the other hand, I haven't asked for consult time. I came here instead. <grin>
  5.  
    I asked the appointment clerk to make me an apointment to speak with the neuro. and she said he didn't do that unless the
    patient is present. (The last time we visited the neuro my husband called him a "pill pusher" after he left the room) I would think if a confidentially paper is signed there shouldn't be a problem. I mainly just deal with our family Doctor now, who tries to work with us during this terrible illness. We live near a small town with only 1 Neurology practice and the next option is 2 hours away. I thought I would go with the 2 hours, then thought maybe I better go there once a year and
    continue keeping the Neuro here in case of Emergency.
  6.  
    Sunshyne: I actually let out an unconscious yelp when I read what the therapist said in front of your DH. I, too frequently I'm sure, would talk in front of DH & one day our son said, Mom, don't do that, he understands. I was heartsick, realized he was right & I was sooo wrong, but I was not a professional. I never did it again.

    Long before I knew what was going on, I dragged DH to marriage counseling twice. I knew we loved each other, had a good marriage, home, kids, etc, but something was terribly wrong. Both counselors said the same thing, 'leave him now while you're still young and pretty enough to get another man.' I wanted my money back! I didn't want to break up my home, find another man, yada, yada. I wanted what I had. Later I would realize that they saw something wrong with him but had no idea what it was, they just knew there was no help for it--no one ever thought his behavior was being caused by a brain disease. P.S. I never left, never had any regrets. I'm glad I was there for him when AD finally came out.
    • CommentAuthorAdmin
    • CommentTimeJul 29th 2008
     
    Sunshyne,

    We may not have medical degrees, but most of us have common sense, and we KNOW when a doctor/therapist/counselor is JUST PLAIN WRONG. I wish I could say I can't believe she would say something like that in front of your husband, but I've had too many bad expereinces with therapists to know how incompetent some of them can be. Most are very good - I'm not dumping on therapists, but there are some who really are clueless.

    joang