Helpless

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Mary died early Tuesday morning, before I awoke. It was obvious when I went to check on her that she had just died within an hour or so. This means she spent the last 48 hours of her life fighting for breath, her eyes wide with what I and the daughters interpreted as terror. While we are relieved that she died and is no longer suffering as she has for the past several years, I am incensed that we were unable to get help for her in her last hours. We begged for some morphine to help her through. All she had was some Ativan 1 mg cream and I had to beg to increase the dosage on that when it was clear the 3xday was not doing the job. That did nothing, either. But the doctor (her PA, really) refused to allow the morphine because of her diagnosis of dementia, rather than one of cancer or other obviously painful disease.

A few days before Mary died, the Hospice nurse visited, and when I stated that I was upset that we couldn’t get anything stronger than Ativan to help Mary, the nurse said, “If it bothers you, you should find another line of work.” In other words, it’s ok for the patient to suffer, we just have to not let it bother us. I pointed out to her that the issue here is that Mary was suffering, and that I was bothered because I had spent most of my life working with people who were suffering, but at least I was able to do something that might ameliorate it. Now I seemed to be dealing with people who just assumed that it was ok to watch it happen.

What could a swab or two of morphine have hurt? Since when is it a given that all people with dementia die a painless death? I am not brokenhearted by Mary’s death, but I am about the way she had to die.

9 thoughts on “Helpless

  1. Avatar of KathyKathy

    Oh Kristin :(

    This is heartbreaking for Mary’s last moments and for you.
    you tried so hard and did so much to give her some quality while you cared for her and you did it selflessly and beautifully in the most difficult of situations.
    Well done good and faithful Kristin.

    it’s a shame your hospice experience was so negative.
    And shame on them for not being more compassionate to Mary’s suffering.

    You know in your heart you did everything within your power and then some for Mary.
    Prayers for your peace of mind and heart.
    {{{Hugs}}}

  2. Trish

    Kristin,

    I am so sorry to hear of the problems you experienced with Hospice and the suffering Mary had to endure. You made a valliant effort to provide Mary comfort in her final days.

    I am very disturbed she did not get the care and support from Hospice that is typical of them. The hospice nurses and PA really dropped the ball and they are in a line of work where they just cannot be so insensitive. I’m very, very angry about this and can only imagine what you and Mary’s daughters are feeling.

    I found a couple of websites that may be of assistance if you or Mary’s daughters decide to report this particular Hospice agency. I would be happy to do more research if you’d like.

    http://www.hospicepatients.org/hospic45.html

    http://www.hospiceny.com/PatientsFamilyFriends/PatientsFamilyFriendsHomePage/tabid/64/Default.aspx

    Please take care and know that you have been a wonderful caregiver to Mary. Take care of yourself, Kristin, and please let us know if there’s anything we can do.

    Reply
  3. Avatar of ejourneysejourneys

    Kristin, I am so sorry. (((Hugs)))

    And I am so angry at the way the PA and the Hospice nurse treated Mary, and treated you. That’s a completely arbitrary standard of care from people who should know better, and if there’s anything official about it, then it needs to change. What the Hospice nurse said to you was unconscionable.

    I agree completely with Kathy. You poured everything you had and are into treating Mary with the utmost of care. You eased her passage as much as you were able to, and you struggled to convince others that she deserved compassion that they chose to withhold.

    Bless you for everything. I wish you peace of mind and comfort.

  4. kristin

    Thanks, Trish and ejourneys. I am also obviously angry, and hope I get the opportunity to write hospice and the PA a letter. I don’t want to upset the daughters, but I feel the situation needs to be addressed.

    Reply
  5. G-J

    Kristin, my sympathies to you and Mary’s daughter on her passing. I stand in awe of you as you selflessly took care of Mary over these years when she was a difficult person not even related to you. I have always admired you for that.

    What a nasty thing for the nurse to say! Sounds like she’s the one who needs a different line of work! My Dad was on hospice, too, and did not have cancer, but as the end neared, they brought us a morphine and ativan. The first time I needed to administer the medications, they gave me directions over the phone, but after that it was our choice to use it as it was needed.

    Wishing you peace as you enter the next stage in your life.

    Reply
  6. Avatar of KristinKristin Post author

    Thank you, G-J. Apparently, there have been some restrictions placed on putting morphine in the comfort-pack. At least that’s what Hospice told us – that we’d need a special doctor’s order for it. The first time Mary was a Hospice client, last fall, the morphine was there. My issue is with the PA who wouldn’t order it, and Hospice for not advocating strongly for it, as they seemed to think it was not necessary.

    I will continue to hold you and Steve in my prayers and wish you the best.

  7. Avatar of Bette

    Hi Kristin,

    I’m sorry.

    I’m sorry for the frustration and despair you must have felt in trying to speak for Mary with no real responses given. You spoke Kristin – that was what Mary needed and as always – you tended to her needs.

    The nurse from Hospice didn’t show the compassion and concern that was needed for you or for Mary. I’m glad you will talk with Mary’s daughters and with Hospice – it’s important.

    I’ve been thinking so much about you and about Mary. Thank you for being the example you are to me. Your perseverance has always been one to admire.

    Thinking of you.

    Reply
  8. Avatar of DeniseDenise

    Oh, Kristin, I too am so sorry. You simply asked for comfort. I don’t understand why the health care professionals wouldn’t help you get that. You are an amazing advocate for Mary–and you continue to be as you share your concerns.

    We all want the end to be peaceful. We all deserve an end that’s peaceful. Please know you brought so much peace to Mary’s life simply by sharing it with her.

    Reply

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