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The end game

  • By teddy s.

    I have posted in this forum several times about my caregiver relationship with my fiancee Tracey. She is a 23 year SPMS survivor, who is in the end stages. In addition to her MS, she suffers from multiple stage 4 bedsores. Several days ago, I had to call an ambulance after she suffered a major seizure. She does not receive any DMT medications, she is too far advanced. She receives 3900 mg of Gabapentin a day for the burning nerve pain, for which Medicare will only cover 2400 mg. (not a big deal), but she is also prescribed 100 mg of Baclofen per day to control her spasms. My research shows this is a very high dosage. My research also shows that there is a lot of documentation of Baclofen induced seizures.

    The ICU doctors immediately reduced her Baclofen dosage, but will not admit that this was the cause of her seizure. Now she is on a respirator, and the pulmonary doctor is reluctant to remove her breathing tube, for fear that she will not be able to breathe on her own, despite her DNR and my POA. She is responsive enough to say she wants the breathing tube removed, and does not want it reinstituted if there are problems.

    This is the end game. If she survives the removal of the breathing tube, she will be forever subject to pneumonia, which she will not survive. I do not want her, nor does she, do die in a cold, sterile hospital. Her doctors, and Medicare, do not want to release her. She and I only want her to come home, where she can live out her final days in a loving, supportive environment.

    We are prepared for the end game. The hospital and Medicare are not.

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  • By Erin Rush Moderator

    I am so sorry you and your fiancée are in this situation, teddy s. Do you have any avenues to file an appeal or complaint? Is hospice a viable option at this point? I am so sorry they are not respecting the wishes your fiancée has made quite clear. I sincerely hope she is able to recover and choose the time and place for her passing. Please keep us posted and I apologize for the delay in this reply.

    You and Tracey are in the thoughts of the MultipleSclerosis.net community.

    Thank you for sharing so openly and honestly through out your caregiving journey.

    I wish you peace, strength, and support as you face the days ahead.

    Best, Erin, MultipleSclerosis.net Team Member.

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    • By Cathy Chester Moderator

      Teddy S,

      I wish I could offer more than my prayers and concern.

      Does your fiance have a living will to specify what instructions she’d want in case of a health emergency? Or did she ever fill out a health proxy where you would, as power of attorney, have the authority to make medical decisions for your fiance?

      Oh, I just re-read your question. You do have POA. So you can use your authority to demand what you want to happen for your fiance. You are in charge of her demands and it is the LAW that they be honored.

      I will keep you both in my prayers and PLEASE keep us posted. We are always, always here for you 24/7. Blessings to you both. I hope my answer has helped and given you some comfort.

      Cathy, moderator

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  • By Kelly McNamara Keymaster

    Hi teddy,

    As Erin mentioned, we’re so sorry to hear everything you and your fiance are going through. Know we’re all thinking of you both! The caregiver alliance might be a good resource to reach out to and see if they can provide any advice or support on some available options: https://www.caregiver.org/. Keep us updated on how your fiance is doing when you can. I can’t imagine everything you’re going through but you showed so much strength in everything you’ve written here. If you ever need it, the community is always here as a place to talk things through.

    Warmly,

    Kelly, MultipleSclerosis.net

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  • By Devin Garlit Moderator

    Teddy,
    I’m so sorry to hear about your situation. It is awful enough without them not respecting having you and your fiancée’s wishes. Perhaps you can talk to one of the hospital’s social workers or counselors or even a chaplain to help advocate for you and act as a middle man? Or request a new doctor. I hope you can find someone there that will be willing to help.

    My grandfather who had MS (I do as well) was, physically, in a very similar situation as Tracey. So I know how hard it is to witness, let alone have to handle medical staff during it. I wish you the continued strength that you have already demonstrated and you and Tracey will be in my thoughts.

    Devin, MultipleSclerosis.net

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  • By Kristine Zerkowski Keymaster

    Hi Teddy, I also want to echo everyone’s sentiments and also let you know that we are thinking of you and your wife. I can’t imagine how difficult this must be for you both, and I’m keeping you in my thoughts. Please know that we have a wonderful, supportive community here and you can reach out to us whenever you’d like.
    Best regards,
    Kristine, MultipleSclerosis.net

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  • By teddy s.

    Thank you everyone for the advice and the warm wishes, it is all greatly appreciated. There have been some changes to the story since my original post, which was written out of frustration from the lack of respect given to a long term, loving caregiver who lacked the piece of paper known as a marriage license. With the help of the social workers here at the hospital, and her mom, who fully supports me, the doctors did finally agree to honor my power of attorney, and Tracey’s wishes.

    They explained that it would be very difficult to let her go home, so we all agreed to remove the breathing and feeding tubes and transfer her to the hospice unit in the hospital. It is a very nice unit where I am able to stay with her all the time, as I have been doing, with the exception of a few short trips home to attend to necessary matters there.

    They did not expect her live long after the tubes were removed, but she is still hanging in there after three days with nothing but a morphine drip and some anti seizure medicine. But her breathing is very weak, and continues to decline. I have used the time while I keep vigil over her to notify all her relatives, mostly half-siblings and her three adult children, all of whom have more or less abandoned her, of her status. They are all very supportive of me, even though this is the first time I have spoken with most of them. I am in constant contact with her mom, the only relative who has any sort of a relationship with her. Unfortunately, she lives in Florida, and cannot travel due to her own poor health.

    So I remain here at Tracey’s bedside, wondering if she will survive the night.

    I have learned a lot about this disease, love, and life in general in the 11 years I’ve been with Tracey. There is on thing in particular I have learned, however, that I believe we can all agree on.

    MS SUCKS!

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    • By Kelly McNamara Keymaster

      Hi Teddy,

      Thanks for keeping us updated! Glad to hear Tracey has been transferred and that you can stay with her all the time now. Sending you both our thoughts and virtual support through the night. Our hearts go out to you both.

      Warm wishes,

      Kelly, MultipleSclerosis.net

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  • By Cathy Chester Moderator

    My heart goes out to you. Your courage, love and strength knows no bounds. I hope you have the support you need to help you during this very difficult time. I send you prayers to help you both. I am glad your fiance is now in the place you both wished for her. Blessings to you both.

    Thank you for your update~
    Cathy, moderator

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  • By celindasfriend

    Hi, Teddy,

    Just joined the forum. My best friend has PPMS. She is a health professional. She knows what will probably happen. She has given her POA to a professional guardian. I teared up when I read your story. Wish you well.

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