End of life hospice

LonelyOnly
LonelyOnly Member Posts: 11
in Caregivers #1

So I know people can be on hospice for a long time. My mom recently went on hospice but she was already in pretty rough shape. At home she was in such horrible pain that she was needing a lot more morphine than was prescribed. The night before we finally decided to go back to the hopital, she was asking for morphine every hour. At that point she hadn't eaten for at least 3 days because every time she took a bite of something she had a spasm or threw it up. At the hospital I asked the palliative doc if she thought it was the end. With my mom so cognitively with it she thought not. The very next day my mom was barely waking up from all the pain meds and was still crying out in pain. The same doc thought we should go ahead and transfer to inpatient hospice.

So now we've been here for almost 3 weeks. She still hasn't eaten by the way. Weeks 1 and 2 can be summed up by still more pain/increased pain meds and my mom waking up every so often sometimes confused, sometimes quite lucid. Sometimes lucid would turn into confused and even distressed so they would give her a small dose of Ativan. Actually now, they give her a small dose of Ativan and Haldol on a schedule.

I have been here with her every day, sleeping on an army cot at night (I've spent one night at home). Luckily, I substitute teach so I have the flexibility to be off work although it will make it rather difficult for us financially later. My husband works and takes care of our 3 yr old.

So, going into week 3 she is completely unresponsive - pupils, no bowel sounds etc. A couple of nights ago one of the nurses thought she'd pass either that night or in the morning but she didn't. They keep giving her one day, and another day comes and goes. Her vitals are up and down. Her breathing is up and down. She is looking more and more like a corpse and I don't know how much longer I can handle this. I've "given her permission" to go, and assured her that I'll be ok.

I love my mother and obviously don't want her to die, but don't want to watch her in pain or be a vegetable either. But that's not why I'm writing this. I'm totally over my feelings of guilt. What I need to know now is WHAT IN THE ACTUAL HELL IS GOING ON??? What is happening? How is she doing this? Is there something else I/we need to do or say? I mean, what is going on right now? Don't give me everyone is different or she'll go when she's ready. Sorry, but I may actually lose my mind if I don't get solid answers here. 

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    First of all

    I think you must be close to the end.

    If your mom had a strong heart and or lungs it can take awhile.

    For now, tell your mom good bye, give her a gentle hug and tell her, audibly, that it is okay to go. Then, go home for the night. It n

    May be what she is waiting for.

    Hugs. 

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Your mother

    I agree with Noellesmom.  Tell your mother you love her, you will miss her but you will be okay and then go home for the night.  My husband died at home in a hospital bed in the family room, each night I told him I loved him and to go home that I would be okay.  Thankfully he was pretty much out of it the last week.  I was giving him Ativan every 6 hours and morphine every 2-4 hours as needed.  He was on in-home hospice and our nurse said we could transfer him to inpatient hospice, but I didn't want that and he didn't either.

    When my mother passed she was living with us and on in-home hospice because they didn't have a bed for her and she was on a waiting list.  She was in a coma like stage for 5 days, no food or water was given because those were her orders.  I asked the nurse how long she could last without food or water and he said several weeks.  He did tell me that the morphine she was on was keeping her heart beating.  She was in no pain thankfully and one night my older sister was here and the hospice nurse and we were talking about all the good times we had and he was getting ready to leave.  My son was sitting back in the bedroom with her and he called us back and said he thought she had just passed.  The nurse checked her and said she had and she had probably heard us talking and laughing and decided it was time and that we would be okay.  Two of our sons were with me when their dad passed and I would like to think he heard us talking and laughing about things they did when they were younger and then my daughter-in-law touched him and said she thought he was gone and he was. 

    I think that if your mother could hear you say you will be okay and laughing instead of crying and be upset, she might just go.  It is hard to watch a loved one die and it is something that takes a long time to get over.  It has been 12 years since my mother passed and only 20 months since my husband passed and I think of them and cry but I try to remember the good times but the bad times do creep up too.  But I'm sorry to say everyone is different and so is the dying process.  None of us are the same, none of us handle pain and dying the same.   I have read many entries on this site about how their loved ones change during this process, I can honestly say my husband didn't change.  He was the same quiet man and never blaming me for anything.  I will admit that I lost my temper from time to time, but I always said I wasn't mad at him, that I loved him,  but I was mad the situation.  So see not all are the same. 

    Wishing you peace and comfort

  • LonelyOnly
    LonelyOnly Member Posts: 11
    #4
    Thanks

    Well, she passed away last night. I had been with her nearly every minute for the past 3 weeks and she went while I went down the street to grab some dinner. A friend of ours who had been keeping vigil with my family and I saw that I just needed a little air. I said, "Mom, Janette and I are gonna go grab some sushi really quick. Do you want anything?" I kissed her on the forehead and told her to be thinking about what kind of sushi we could bring her (even though I knew she wouldn't respond). I had read that some parents choose to wait until their kids are gone so I was very deliberate about letting her know I was leaving. We settled our bill and were about to leave when we got the call that she was very close - it took us 7 minutes to get from the restaurant to her bedside where the nurses were listening to her heart beat it's last few beats. Maybe that is what she wanted or maybe I'm just telling myself that to make myself feel better. I feel robbed, I feel guilty, I feel relieved that she no longer has to suffer. Ultimately I know she knows that I love her and knows that I rarely left her side in the end.

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #5
    Perfect

    You did what your mom needed when you stepped away for those few minutes.  No guilt, please.

  • here4lfe
    here4lfe Member Posts: 306 Member
    #6
    She went when she was ready

    My wife died the same way. She waited until I was out of the room then passed away. Sorry for your loss.

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