how do you know it's the end?

maryquita
maryquita Member Posts: 1
edited March 2014 in Caregivers #1
I brought my 88 year old grandma ("Nanny") to live with me back in the end of August...just 3 weeks ago. The reason I brought her here was because she's got Alzheimer's Disease. Well, I just kept noticing things that made it seem like something else was wrong, so I took her to the doctor. After a week long hospital stay because she is combative and confused and wouldn't take meds, we have been handed a diagnosis of stage IV rectal cancer. It's already metastasized to her liver and lungs. I went from having probably a couple of years to having (per the doctor) 10-12 weeks. That was 2 weeks ago.

Her decline in that period of time has been marked. In all my nearly 40 years, I have NEVER known Nanny to take a pill of any kind - she denounces them...but this week she has begun screaming in pain and begging for relief - asking me if I have medication for her. Fortunately for both her and for my sanity, the pain has so far been easily controlled - a single dose of morphine for each of 3 episodes that did not have to be repeated was enough to banish her pain for the time being. The docs gave me meds to give her to make her "calm"...but they made her into a zombie, so I reduced them, sometimes not administering them at all so long as she is not violent. The thing is, sometimes now, even when she is not medicated, she is "foggy"...she seems very confused (beyond just where she was with the Alzheimer's) and very weak, and she wants to sleep ALL day. And other times, she's clear and can walk fine and get dressed on her own and go get her own snack from the kitchen.

I don't know if the drugs do this to her or if this is the progression of the disease...and how will I know when it's time to call the family? How will I know that her "fog" is not going to end? I don't want to wait and not call the family until she is in a coma - I know they want to be here for the end...they all work too, and we can't all just stop and stay by her side 24/7 as much as we'd like to. And I live 2.5 hours away from everyone else. How will I know? What are the signs? Am I making the right decisions in withholding meds that alter her personality - I want her to be calm, not zombied!! I have precious little time left with her as it is - I don't want it stolen by drugs even quicker than it will be by the disease that ravages her!

ARGH! I am usually so strong and confident...but I feel reduced to a child - I feel like a little girl again - I am absolutely lost, confused, and above all, starkly terrified. What can I do? Anyone?

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    making good guesses
    You have taken on a huge job, but the returns cannot be measured. I have been caring for my elderly mother (late stage ovarian cancer) for over a year and a half. You learn a lot living among the old folks, and I can appreciate how difficult it can be to tell the difference between old age, cancer, chemo (in my case) and Alzheimer’s disease (in yours).

    It is common for advanced cancer in the elderly to lead to a “sleeping death” in which the person sleeps more and more, and eventually becomes comatose. I know, you’re saying, that’s the problem! It’s possible that experienced Hospice workers can help estimate time (they’re usually better at it than doctors). If you don’t already have H help coming in, make the call. They can help a lot with pain management, especially preventing break through pain that gets Nanny screaming for help. As long as you have her name, ssn and doctor contact, the Hospice people can take care of the paperwork.

    In the language of dying, there is the “active stage” of dying and the “pre-active stage”. Getting familiar with the signs of each may make for better guessing. Here are a couple of links:
    From the Hospice Alliance: http://www.hospicepatients.org/hospic60.html
    Mayo Clinic: http://www.mayoclinic.com/health/cancer/CA00048/NSECTIONGROUP=2

    If I were you, I would let the family know that grandmother is sleeping more and more, and it would be better to visit sooner than later. Good luck with the challenges ahead – some days are terribly tough, while others are a wonder.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
    I agree
    Mary,

    I have been in your position before: the primary caregiver for someone who doesn't have long to be with family members.

    Call her family and let them make their own decision. Please remember you are in no way responsible for their decisions regarding this. Some will come, some likely won't. It's okay either way.

    Hospice - absolutely call hospice. The visits may (or may not) be minimal at first - gradually increasing as your grandmother's needs increase.

    You are still strong and confident - that has not disappeared. That's why your grandmother is with you and not other family members.

    Facing uncertainty just brings out self-doubt in everyone - it is how we make sure we do our best.

    Trust God and trust yourself.

    You will do exactly what needs to be done when it needs to be done. Try not to anticipate too much.

    You are in my thoughts and prayers.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
    Love
    Your love for your granny is so evident in your post. That love will get you through this. I lost my husband to colon cancer 11 months ago today. Number one - call hospice. They can help walk you through this. The thing I appreciated most was that they were available by phone 24/7. They can answer many of your questions. I would call family members and tell them their are no guarantees how long granny will be here. Then they can't feel that you are not keeping them in the loop. Also, even if she is not responsive when they come, they can still say good bye. They say that hearingi is the last thing to go.I don't know how they know that, but it is what they say. Anyway, the family members can still talk to her even if she is comotose. I talked with my husband that last day. I told him I loved him many times. I also told him it was ok to let go.

    My mother will be 92 this month. She has dementia and has recently been dx with cancer. My sister is caring for her. I can't tell you how much I appreciate that. I hope your family understands the sacrifices you are making to care for your granny. You are a wonderful granddaughter. Bless you. Fay

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