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The end game

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.

  1. 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.

    1. 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

  2. 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

    1. 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

      1. 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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