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May 20, 2019 Life is hard!

Monday, May 20, 2019

Things have gotten really bad here in my home. My sweetheart started having seizures on Friday and they keep happening. He has already fallen soo many times that I am having to basically make it where he cannot get out of bed without someone helping. We are getting a bed rail tomorrow for our bed so he can't get up when I am asleep. He had a really bad fall this morning at 5, he has bruises, a black eye and scraped up head and knees from the fall. I called Hospice and asked for a nurse to come check him. The nurse said he was ok, just some bumps, bruises and scrapes. I feel soo guilty that I was not there to stop the fall. I was awake and standing on the other side of the bed when he sat up on the side of the bed instead of waiting for me to get over there. I should have moved faster..then maybe he wouldn't have fallen.

He barely ate anything today and only drank about 6 ounces of water. He can't stay awake and he is unable to remember things. He talks about things that nobody knows what he is talking about. Hi son and a son he raised but did not father came over again today to visit. He woke up for about 10 minutes to visit with them. He ended up not being able to stay awake any longer, so they promised to come again tomorrow. He said he would be here and his son said "you promise?" and Mike said yes. I know this is part of the disease but it hurts soo bad to see the love of my life fight this losing battle.

I don't know how much longer he has here on earth, but I want to protect him the best I can while I have him. I am not doing a very good job keeping him safe. This is the hardest thing I have ever had to do and I should be doing a better job at it. I need strength to keep on going and to learn from my mistakes and improve. I am having a real hard time taking care of my needs because I am soo worried about taking care of his.

On the positive side, my kids have been really trying to help me with him. I have needed them at all times of the day and night to help me get him from 1 room to another. He is still trying to use the bathroom like a man "should"(his words), but he is having accidents at least 3 times a day. His regular Hospice nurse is a man and I plan to ask him to talk to Mike tomorrow about using the Depends underwear. It is time, he knows it but doesn't want to admit it. I completely understand. My kids have helped me get him to the bathroom when he is too weak to lean on me or the walker and he has already made a mess of himself. My kids have been great with saying "how can I help?" This is teaching my kids to have more compassion for other people. He is not their biological father, but he is the best step father they could have ever had.

For the last 12 months and 10 days, I feel I have learned more than I have my whole life. I sure hate the way I am having to learn the lessons that life is giving me, but I am grateful for how much it is changing me for the better. I am not ready to lose this wonderful man God gave me, but I also don't want him to suffer more than he has to. I pray he doesn't have to go through too much more pain (physically and emotionally). I make sure to tell him several times a day how much I love him, but that I will always have him with me even after he is gone.

I know this was a ramble, but it helps to get it in writing.
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Member Comments About This Blog Post
    Kristi, you are so courageous during this very difficult time. Your faith must be your strength. Your family surrounds you with support and comfort. Spending every moment you can with Mike is exactly where you should be. Everything else will take care of itself. He knows how much you love him and even when the end is near and he is no longer responsive sit with him, hold his hand and talk to him. He will feel your love and be able to find peace. I am praying for you.
    757 days ago
  • MJPECK7015
    My heart is breaking for you, Kristi. Please tell yourself that you ARE enough. You just can't do everything, and that makes you feel like you aren't doing enough. I know the struggle, as I've been there, too. I'm praying for strength, comfort and peace for you, friend. Hang in there, and don't be too hard on yourself. Much love and caring coming your way.
    757 days ago
    OH Kristi, my heart aches for you and he. HUGS and prayers and YOU ARE DOING THE BEST YOU CAN. Don't 2nd guess yourself. I took care of both my parents and you can only do so much. It's just tough.

    I am glad you have Hospice help.

    HUGS and prayers.
    757 days ago
  • MJK0430
    Kristi, Sending all the Love in the world to you and Mike. I am so thankful that your family is surrounding you and him with tenderness.
    757 days ago

    Comment edited on: 5/21/2019 5:57:30 PM
    Oh Kristi, I'm bawling for you. Much love and hugs, and don't forget about yourself in these horrible, trying times.
    758 days ago
    Kristi, you moved quickly enough, you are doing enough, and YOU ARE ENOUGH.
    When you are doing everything in your power already, you can't ask for more. I'm so glad that your kids are doing so much to help both of you through these hard days.
    I love that you are finding the silver linings in the worst of times.
    Your strength and compassion and love for Mike shine through.
    Love you, friend.

    758 days ago
    Truly a difficult situation. It's OK to be human and to struggle with this kind of hardship. Try to be gentle with yourself.
    758 days ago
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