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From Bad to Worse or The No Good Very Bad Day

Posted by Sue on January 8, 2009 in Deep Thoughts, Life |

Monday started out with a little bit of hope. My mom, myself, and my dad's youngest sister and her husband were meeting with a rehab facility to see what they could do for dad. We'd been told they had a couple of "coma" beds where they worked to wake people up. After meeting with them, it was decided they couldn't help us. Dad had to have a minimum response and at this time, he had none. We were disappointed, but were meeting on Tuesday with his trauma nurse and a social worker from the hospital. The trauma nurse was present at the big weekly meeting of all his doctors and caregivers and we would find out the latest prognosis. The rehab facility thought our next step should be to look into a skilled nursing facility.

Tuesday things went downhill fast.

The trauma nurse and social worker had dad's chart with them and the jist of the information was that dad was not coming out of his coma. They could get no response from anything exept pain and when they'd tested him he had actually decreased a little in his response. When we'd first seen him after surgery he would hold our hands if we put ours in his, now he wouldn't even do that reflective act. The consensus was that even if he was to wake up the next day, he would never have the quality of life he had before. He would never go home, probably never be able to dress, feed or care for himself. In my eyes… knowing how independent my father was… it would be hell on earth and he would probably try everthing in his power not to participate in any rehab and would try to end his life as soon as he could possibly manage. On the other hand, if we continued to care for him in a skilled nursing facility, he could last for years… virtually taking my mother into poverty without any improvement. That, too, would make him upset. He spent his whole life trying to provide a good life for my mother and to see her have to give up everything to keep him in that state wouldn't be what he wanted.

After listening to all of this and watching my mother quietly weep and my aunt and uncle sit in stunned silence, I finally broke the ice. "When I get done saying this, you all may think I'm a hard, cold bitch… but my personal opinion is that dad would not want to continue like this. I feel we should discontinue the gastrotube feedings and put him into a hospice setting and allow him to go. At this point we are keeping him here for us, not because it is what he would want or on the chance he will come back the way he would want."

As soon as I said it, my aunt then said that when she and my dad's brother, other sister, and their spouses had discussed things before they had come they felt this was probably going to be the outcome and that they supported our decision to do it. Mom was quiet, but nodded her head and agreed this was for the best.

It was a rough day.

About an hour later the hospice admitting person came and talked to us and answered all our questions – putting any of our fears to rest. It was difficult to see my aunt and uncle breakdown when the time came to go tour the hospice because they were going home to Missouri and she felt this would be the last she would see him alive.

Touring the facility, it was confirmation of how right the decision was. Yesterday, they had a bed available and moved him in the afternoon. We are currently spending days… and maybe nights… until the end. It is a beautiful facility, totally covered by their insurance, and everyone we've met has been so caring and warm and compassionate. They also have counseling and after-care for the families for 13 months after. I brought in a cd player and have been playing dad's favorite irish songs and trying to keep him as comfortable as possible. Mom is in a recliner near his bed and is still in a lot of pain…going to her first doctor appointment tomorrow afternoon. She wants to stay overnight, but I won't let her until she goes and I find out if she's well enough to. She's not sleeping well and is still in a lot of pain, having a lot of trouble remembering when to use her oxygen and when she can go without. She keeps saying "Okay mommy" in a derogetory tone, but I know she's under a lot of stress so I just let it go.

The hospice people say it will most likely be two to four weeks. Mom and Dad's wedding anniversary is in about six weeks, so I hope he goes quickly. I can imagine how extra painful it would be for her if he would go near their anniversary.

I'm having lots of support from my husband (who came to stay a few days ago) and my youngest daughter (who is staying at our house taking care of the critters) and the rest of my family who are so loving and supportive. I've gotten so many nice emails and comments and I thank you all for the good wishes, the support and the caring. It touches my heart more than you know.

15 Comments

  • cmk says:

    I wish I had words of wisdom, but I have none. My heart breaks for you–I will keep you and your family in my thoughts and prayers. And, by all means, take care of yourself–you are no good to ANYONE if you are sick!

  • TheQueen says:

    Oh, dear, you are doing the right thing, you are doing the right thing, you are doing the right thing. Your father taught you to be unselfish, and you are being unselfish.

    Remember you don’t need to be there every minute, or the moment he dies. Don’t weigh one moment at the end of his life as more valuabloe than every moment you showed him you loved him during his life.

    And cry. Everybody cry. And drink water so you don’t get dehydrated.

    Oh, and take advantage of those hospice people. They are very nice. My hospice program offered massages, and I’m a little sad now I didn’t take advanyage of it.

  • pat says:

    Sue, I say a prayer for you daily.

  • Melanie says:

    Sue, I am so sorry that you are having to go through this. You are in my thoughts. Don’t forget to take the time to take care of yourself in all of this.

  • Becky says:

    I’m sorry that you and your family are in the position to have to make the decision. Ted and I have been pretty vocal that we both feel the same way — so that if that time ever comes, the other one makes the same decision you did. I know what you’re going through at this point and my thoughts are with you. It’s a strange and guilty feeling about hoping they go quickly to end their pain and suffering.

  • sizzle says:

    Oh Sue…I am so sorry. I think you made the right decision to speak up, as hard as that might have been. Hospice was so good to my Grandma and my Dad. It’s really a dignified way to leave this life and I wish only peace for you, your father and your family.

    Big hug, big love.

  • Briony says:

    You are so brave and strong for speaking up. I am thinking of you and sending you all my positive vibes. I wish peace for your Dad and hope that you will all be able to get through this a little better because of all the thoughts of us bloggers being sent your way.
    Hugs,
    Bri

  • Jody says:

    I am sure you are doing what it best. Logic sometimes sounds cruel but I’m sure you were right about how your dad would/wouldn’t want to live.

    Prayers with you and yours.

  • whall says:

    Here’s some more good wishes and thoughts. Compared to what you’re going through, my life is pretty dang rosy and I don’t need them right now.

  • Nat says:

    I wish the outcome was different but for what it’s worth, I think you are making for him and for your mother.

    A huge dose of support from me.
    Huges

  • Lisa says:

    Oh Sue, I am sorry for all that you and your family are going through right now. It is not an easy decision to make and it is not easy to be the one to have to say it, but I think you guys are truly doing what is best.

  • Michael says:

    Sometimes the world can seem so very grim but life has a way of balancing sorrow with joy. The pendelum will swing again and soon I hope.

  • PlazaJen says:

    Oh, Sue. I’m so sorry. As you must know in your heart of hearts, the choice you have made is the best one. To die with dignity is an amazing gift, and your hospice people will support all of you through this. For all of your family, and especially you, I wish you peace, love, and comfort through this. We’ll all be here …. whenever you need us to listen.

  • Hi, Sue – I haven’t visited your site in a while, and I’m glad I came by today. Please accept my deepest condolences. I’m saying a little prayer for you and your family now.

  • Amy says:

    My heart goes out to you and your family, Sue. You’ll be in my thoughts. I’m so sorry for your loss.

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