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Thread: My mom

  1. #1
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    Default My mom

    Hello,

    I'm new to the site, but not the disease. My mom was first diagnosed when I was about 4 years old. For most of my life, she did really well. Within the last 5 years, this has all changed...and I find myself needing to talk to someone who understands.

    My mom is only 60 years old, but she has lived in a nursing home for the last 5 years. She has SLE, ESRD, Sjogren's, and Scleroderma. On top of all of this, she has had to have back surgery because of a MRSA infection in her bones and has lost two fingers due to SIRS.

    I realize that the woman I go to see every other day at the nursing home is not the same person that I grew up with. She is so fragile and seems so lost. I never imagined in my wildest dreams that my mom's whole world would someday be comprised of one half of a hospital sized room, and her recliner at dialysis.

    It breaks my heart and sometimes I just have to sit in the parking lot before I leave and cry. I constantly have to re-assure my grandma that my mom is not mad at her, that she is just not her anymore. She love us and I know she does...but she just....I can't even explain it. She goes some place sometimes, within herself and you can see it on her face when she goes there.

    I just want to scoop her up in my arms and make it all go away...and I can't.

    How do you all deal with the fact that there is not a dang thing on God's green earth you can do to make them better?

    With every trip to the hospital, she seems to get weaker and weaker.

  2. #2
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    Default

    I am so sorry that you are having to go through this! I know how horrible it has to be for you. My mom died in June, and I will never get over it. My sister and I had to put my dad in a nursing home. He is in a wheelchair and can not walk at all. He broke his left hip twice within a 1 month period and he had polio when he was a boy and it has taken its toll. I have the same feelings you have when I go to see him. He also has dementia and sometimes when I go see him, I feel like he looks right through me and is off in some other world. Some days he is like his old self, but most days he is "out there." I know all too well about the look you are describing that your mom gets on her face. I hate that look. I always feel bad, but then I look around at some of the other people who are in there and I realize that he is doing better than some of them, especially the ones that are flat on their backs in bed. Just visist your mom as often as you can and let her know how much you care about her. Even though she may be in that "place that she goes" she knows that you love her. I feel bad for you. Your mom is young yet and this is awful. Try to stay strong and be there for her as much as you can. In some ways, this is probably harder on you than it is on her. Take care of yourself and God bless!

  3. #3
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    Default

    Thank you Southernbelle for your comments. It does sound like you know exactly what it's like and that look.

    I think the human mind is an amazing thing and that place they go, I do believe that it helps them to deal with and live what they have to endure. It just hurts to dang bad.

    *hugs* to you.

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    Sometimes when I visit my dad, I will be talking to him and he will be in another world, another place, another time. It is like he does not hear me. I often wonder what it is that he is thinking, but I don't question him. He is 83, and like I said, somedays he is just fine. You are so right about the human mind. There is just no way to get inside anyones mind and see what is going on. The look is like a stare that does not end.

    "hugs" back to ya!

  5. #5
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    Default

    I think maybe they are back in the past, re-living happier times, being young again. My mom went through a long, lingering illness - sometimes when she had "that look" I would say something to her, and she would smile and call me "Jen" (her sister, who died before I was old enough to remember her). So I think she was back in her childhood, where she was safe and happy. At least, that's where I like to picture her.

  6. #6
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    I think you may have something there! I had forgotten, but my dad has called me by my moms name a couple of times since June 23rd of 2006, the day she died. It's funny, but my dad can tell me things that happened before I was ever born, and I am 54 now, but he can't remember what he ate for breakfast! Lol. We'll probably all be there if we live long enough. Geeez, maybe I'm there already!

    Grace

  7. #7
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    Default

    My Mom has dementia (Alzheimer's) and has been in a nursing home for some time now. She held her own for quite a while, and Aricept helped. But now, she's in an advanced stage and watching the woman I've been so close to my whole life just gradually disappear is a heart breaking thing. Kokopelli, I have also sat in the parking lot in tears. I think illness makes some folks retreat deep into themselves, and like many have said, they retreat to happier times. Keep visiting your mom, Kokopelli. She knows you're there, on some level, and feels your love. And, something else to remember: the more family is involved, the better the care. I've seen it time and again at the nursing home.
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  8. #8
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    One of my favorite songs to perform is "The Slender Threads" (Kathy Mattea). Although it wasn't written about Alzheimers, the first time one of my friends whose mother has Alzheimers heard it, she said it described her feelings perfectly. I think it's also true for any of us trying to hold on to elderly parents.

    The Slender Threads

    The dawn of youth, the twilight years,
    The tender life we hold so dear
    The memory of the smile, the tear,
    The slender threads that bind us here.

    I look away from you,
    trying to hide my tears,
    Praying for grace at the end of the day.
    I want to hold you and never let go
    but I look up to find
    that you're slipping away.

    The dawn of youth, the twilight years,
    The tender life we hold so dear
    The memory of the smile, the tear,
    The slender threads that bind us here

    I long to speak with you,
    I try to reach for you,
    Wake up to find that there's nobody here.
    I walk away from you,
    Still I can feel you near
    Forever with me, forever alone.

    So strong they hold
    till we let go
    and still they're there
    as light as air.

    The memory of the smile, the tear,
    The slender threads that bind us here.

  9. #9
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    Default mnjodette

    It was one of the hardest things my sister and I have ever had to do when we placed my dad in Arkansas Health Center. It is better than any of the nursing homes around here. I think I mentioned before that it is a cross between a hospital and a nursing home. The waiting list is usually a year or more to even get in. The reason my dad got into the center, I believe, is because of all of the pull from our local hospital. I believe with all of my heart that my mom would not have died the way she did if the doctor in the ER had just listened to me. I took her there 2 days in a row and told them repeatedly that she had heart disease. The doctor insisted that "heart trouble was not indicated, tests are not warrented" and sent her home, after giving her a good dose of ativan (!!) where within 30 minutes she had a massive heart attack right in front of me. I see it in my minds eye every day. After that, they went out of their way to do any and everything for us. I think they thought we were going to sue. I regret and blame myself everyday for not taking her somewhere else, but we have always used this hospital and had always found it to be good. NO MORE!
    You could not be more right when you say that the more the family is involved, the better the care. I go to see my dad every other day, and not always at the same time on those days. My sister goes on the days that I don't go. On Saturdays, we go together to see him. I am more involved than my sister because she works full time and it is harder on her. I also agree with you about no matter how far out of reach our parents may seem when they reach this age and are in the care of others, I believe they know who is there and even though they may not talk, they just have to know in their heart. I am sorry that you are going through this with your mom. I wish so much that my mom was still here. Besides my husband, she was my best friend, and we talked on the phone sometimes 4 or 5 times every day. I miss her so much. It really makes me mad when I see some people talking to their parents the way they do. It is so disrespectful. You know what "they" say, what goes around, comes around. There are so many of us who would love to have our parents the way "they were." God bless you.
    Grace

  10. #10
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    Default Marycain

    I love the song! The words are so true and beautiful. It is so hard to lose someone you love. That is the very way I felt when I found out that Larry had all of these diseases. I just knew that I had lost him. Now I have re-newed faith that he will feel better. I have to feel that way, it is the thing that keeps me going.

    Grace

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