Long Distance and End Stage AD

Discussion in 'General Health & Wellness' started by RealisticGranddaughter, Mar 9, 2011.

  1. Brand new to the site & the board... just spent several heart breaking hours reading posts and replies. My heart goes out to each and every one of you.

    My story...

    Meet my Nanny... my mother's mother. Nanny has been diagnosed with Alzheimer's and dementia for approximately 7 years. The first 3 she was at home with my Pop Pop who was her 100% care-giver. Back then, she was manageable, or should I say... AD was. It got to the point that she required stronger, longer assistance than what he could provide. Though still ambulatory, she was incontenant, combative, refusing her meds, eating only junk. The meds and the personality deterioration were ultimately what gave him the strength to place her in a NH. This was November 2007. (Did you know the *average* life expectancy in a NH is 3 years?)

    Pop Pop, healthy if you don't count the 2-3x weekly dialysis treatments, went to see her every day he did not have dialysis. Upon her initial admission to the NH, she refused to eat. He chose to disregard her wishes (well planned before her health decline) of no feeding tubes, breathing machines, DNR, etc. He opted to authorize a feeding tube. It worked. She gained weight, responded to meds, came of the tube and fed herself... with his prompting. She was no longer ambulatory however and still incontinent.

    August 2010, Pop Pop went to a dialysis treatment, had a stroke and never woke up. We honored his wishes, had his breathing tube removed, refused dialysis and allowed Hospice/Palliative Care make him comfortable. My mother and I were with him, the Scared Moment. We listened to country music, Mom held his hand, I crawled in bed with him and I promised to take care of everything for him, item by item, to honor his wishes. About 10 minutes after exhausting my itemized list of every little thing we would "take care of" for him, in his absence, he took his last breathe and passed on. It was sad, tragic & beautiful.

    Now here is the real kicker.... this is all taking place in Virginia. The rest of their family... my mother, my uncle, my brothers, their children, their spouses, my husband, my children... we all live 6 hours North in Pennsylvania. Pop Pop has passed and now there is no one local.

    We considered moving her up her with us. Due to her advanced stages and the fact that she has accepted this NH and it's staff... we feared moving her up her, for OUR peace of mind, was the wrong thing to do. Not to mention, my Nanny would HATE to live up here with all of us Yankees. And the NH, while offering to support us in our decision & help in any way, suggested that it wasn't a great idea to move her up her. We decided moving up here would be selfish, it would be for us and would not honor her.

    The dilemma is this...
    She is clearly end stage. Refuses food. Refuses drink. Put a straw in her mouth-nothing. Incontinent. No longer mobile. Non responsive, the most she will do is open her eyes when spoken to, then to close them again. AND last night, the NH sent her to the ER due to excessive vomiting & diarrhea. She is dehydrated. She has a UTI. Now, she is on restorative fluids. She is on antibiotics. We already informed the doctor that she does not want a feeding tube. Palliative Care has called to touch base.

    I know every single case is different, every single person is different. There is no textbook timeline for these situations.

    My questions & issues are these:
    1) Are we prolonging life with the antibiotics? Is it right to refuse?
    2) How do I figure out WHEN to get there/be there to hold her hand as we let her go?
    (There are, of course, jobs, school & children to work around)
    3) Did we do the wrong thing by not bringing her up here?
    4) By refusing the feeding tube, are we causing her more discomfort?
    5) Do IV fluids count? Should she have them? Are they necessary for comfort?

    The doctor called and I tried to inquire but he had a very thick accent and was difficult to understand. I called the nurse who was wonderfully nice but very vague.

    I know my Nanny is done. We knew it was going to happen. Somewhere inside, she knows he is no longer for this world. We know letting her go is the right thing to do. It is not our decision for her, as it was not for Pop Pop. These were their decisions, years ago, when they still had their faculties about them.

    My Nanny & Pop Pop spoiled me in the best way possible when I was little. I was their first grand-baby and their favorite. It is so important to do the right thing. And my own Mother defers to my judgement, opinion & suggestions. I am our family's Matriarch. It's a lot of responsibility. I miss him more than I can tell you. And while she is still alive and breathing, I miss her more than words can say because she is but a shell now.

    Any thoughts, opinions, experiences, advice, opinions, etc are welcomed, encouraged, heck- I'm begging for them.

    Thank you for reading,
    Realistic Granddaughter... aka Shelley
  2. TwoCatDoctors

    TwoCatDoctors New Member

    I'm sorry for the loss of your Pop Pop.

    There are Boards here for Alzheimers and Caretakers and you may get some help there, but I don't know that they have been very active.

    I can suggest to you that it's time to see an elder-care attorney for the state in which your Nanny lives. It's important to get accurate info for your situation. Nurses, doctors and nursing homes don't always give you the accurate info, and sometimes they can refuse your orders if you don't have proper legal paperwork to act if the person is conscious or unconscious.

    As to a DNR, our state requires it to be paperwork on "bright orange paper," signed by the doctor of the patient, signed by the patient or guardian/power of attorney (and I believe witnessed) and several are prepared and signed and filed with the hospital, nursing home, etc. in order to be a legally active DNR. So it's not as easy as saying "put the patient on a DNR." So it may be that Nanny's state has something similar.

    Sometimes nursing homes are not compliant with requests to remove feeding tubes without all legal paperwork being in proper order and you having the proper legal authority (from the legal paperwork) because it may leave them legally liable if another sibling wants a feeding tube restored and a fight in court starts. So that is a reason why nursing homes and hospitals look for proper legal paperwork giving you authority to act on behalf of the patient.

    So do you have all legal paperwork to be able to make legally binding decisions for Nanny in the state in which Nanny resides? If not, you can run into a brick wall with the nursing home or a hospital or if one of your relatives sticks their nose in.

    Many of the numbered questions that you asked should be asked of Nanny's doctor. He can tell you answers. He can also tell you if moving her to your location would have been so painful on her or if it might have killed her so it would be a bad idea or if he would even have allowed it--remember, you would have had to consult with him before moving her and the trip (probably not by air) may have been too much and he may have totally refused as his patient comes first over your convenience. If Nanny is really at the end, you have to consider that she might die in the process of moving and that's not what you would want to happen either.

    My Dad is in Hospice care and there is a minister coming in (although my Dad was not religious, my Dad likes this now) and praying with him and he is getting music therapy and massage, and anything he will eat so that he does get food in him. It is a complete turn around from his normal care. I live across the United States from my Dad and my brother lives several states away from Dad, so no one is near him, and that is just how it had to be because he had to go in and he couldn't travel to be elsewhere. But they are making him comfortable and that's what is important.