Thursday, September 27, 2007

Time marches on

Whenever I go for a long time without writing in here, it's either that my life is very good, or.... like today. Today it's finally sunny, after 3 days of rain. I know we needed the rain, but... well, *I* didn't need it. ;)

Things basically suck here, and not in a good way. On Sunday, Michael got ambitious and went for a walk of his own, while I was out for my walk. I came home and he was on the bathroom tile, face down, wet, bruised and confused, but otherwise not hurt. I could not get him up at all, so called the hospice on-call nurse. She took an hour to get here, so while I was waiting, I just covered Michael with a blanket and put a pillow under his head. He was asleep when she got here!

So we got him up and cleaned up, and she changed his catheter. Then she ordered us a hospital bed, which the guys set up in the living room all ready for us for Sunday night. Bed rails! YAY! I had things moved so that the bed could go in front of the window. This enables Michael to at least see trees and sky and stuff, even though he is asleep 99% of the time now. I have not been getting him out of bed - just cleaning him up there. It's killing my back, and ... my goodness, but this does suck!

I do keep reminding myself, though, how fortunate I am that I'm only 50, am just about as strong as I've ever been, and how much worse it would be to do this when I'm 80! Lots of women are in that situation.

The main upshot of all of this is that I can no longer leave the house, unless someone is here to look after Michael. The Hospice nurse from yesterday told me that he could get out of even the hospital bed with railings, though.. I don't think that he could. He has a hell of a time just turning over on his side so that I can clean him up. I am not going to leave him alone anymore, though. That Sunday morning bit was just too ugly.

Today I went walking in the driveway! I got a baby monitor (Carla brought it to me! :)) and clipped it to my belt. Plus I could see Michael when I was on part of the driveway. He just slept, and Maddy and I got a good workout. For those of you who don't know, our driveway is steep and long.

I just can't imagine that he'll be alive much longer. Dr. Kane told me that he would be surprised if Michael lived another week, and that was last Friday (nearly a week ago) when he said that.

We've had lots of visitors, including Michael's kids -- Rachael and David -- and Rachael's kids. David brought Rachael and her kids up here from Florida, which I thought was a classy thing to do. She had a visit with them in MI and then the families drove down here. David brought just Rachael and her kids over; the rest stayed at the hotel to swim, and that was good.

Michael is confused by everything, and is completely unable to communicate, even with me. Breaks my heart to see him try to talk and he just says "bih bih fih" and shakes his head because he knows that didn't come out quite right.

We've eaten out in public for the last time, I am pretty sure. Michael's eating is .. err... LOL... not really pretty enough for company now. When we have anything messy at all, I feed him. He does handle pizza and toast ok, but it's all over his face and his "bib" towel by the time he's done. I give him drinks through a straw, but I have to hold the glass.

I seem to spend all my time on email these days, but that's ok, because it gives me an outlet. And I do love hearing from people! The comments that I've gotten in this blog are really bolstering and always make me smile.

13 comments:

  1. This last bit is bad, no doubt about that. Your attitude is great. Nobody need give you any advice. You're doing great.


    best,
    Bob and Claire

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  2. Janee, I check in here daily to look for updates. You and Michael have handled all this with class and bravery. I'm so glad he has you. Hang in there, girl.

    Love,
    Lynell

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  3. Hi Janee,

    You know what I'm thinking when I read your entries...I think of myself in your situation......

    You're my idol.

    Anne

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  4. Sis: I think Anne says it all - "You are my idol." I know what Michael would say if he could. I know he would be thanking you for your love and patience. For your understanding, kindness, and caring.

    I am proud to call you my sister!

    I will call you either tomorrow or Saturday for a chat. Love you. Sis.

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  5. Janee,
    When my dad was dying our hospice nurse said it would be about 2 more weeks; it was 13 days. She told us during that last week that she believes dying people often try to hold on, to take care of the living, however much they are ready to go. And she said it's important to tell them it's ok to die. I wasn't sure about that, but Dad was in a lot of pain, was in a hospital bed, could no longer be left alone -- well, you know all that. So I screwed up my courage and held his hand and told him how much I loved him and how grateful I was for a terrific childhood and that I'd be ok now, he could go when he needed to. He couldn't talk by then but he squeezed my hand and I think he was glad for what I said -- a few hours later he died. You and Michael have had more consistent communication than I'd had with my dad, but he still might need to hear that. Or not. I don't pretend to understand anything about death but after going through it with my dad I find I fear it less. I send you hugs & prayers and strong thoughts!

    Susa

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  6. Hi Janee, its wonderful that you have the strenght to give the care that you do! You two are in our prayers and tears everyday. Would you give Dr. Mike a little squeeze for us? Say hi to Maddy & Eddie also! Al & Donna

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  7. Janee I love you. I pray that Michael is aware that you are walking with him and knows he is not alone. But you are not alone either!

    Kath

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  8. I don't really know you well beyond the courses I have taken with you since Blank Canvas in 2004 but I too am an admirer of your spirit and your humanity. You are a born teacher, even now and perhaps especially now. Inspirational.

    God bless you both.

    Sophie

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  9. Dan and I are so sorry, Janee, that you are having to go through this, and we are in awe of your love, strength, and courage. The way you have shared this journey has been more than inspirational to us.

    Peace and love,

    Kathryn

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  10. (((((((Janee & Michael)))))))

    Patsy & Jim

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  11. Janee,

    Thanks for keeping us in the loop and posting the latest. Even though it is hard for you, we all appreciate knowing. I am thinking of you and Michael daily, and sending my love your way.

    Love,
    John and Leilani

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  12. Janee,
    The folks at Aegis let me know about your blog, I wish I knew sooner, and I wish there were something I could do. I always enjoyed calling on him, and really admire him and you for your strength. You are both in my prayers.

    Geoff Cochran

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  13. I'm sorry to hear these sad news...

    I'm just coming from your Photoshop tutorial and I wanted to thank you for them. Your blog seemed appropriate for that ;)

    Anyway, I was able to do cool stuffs for my blog thanks to your tutorial and you really have a great way to explain stuffs step by step (and I'm a teacher, I know that !).

    Thanks again and I hope you're alright despite the tough time you're describing here.

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