As the world turns, do I?

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It's just this trapped feeling, I'm working around it, getting rid of it. But still, every now and then it gets to me...... Like today. I just want to curl up and sleep. I don't want to have to deal with life today.

It's 12:30 PM and Mother is setting the table for dinner. She needs to be constantly doing something. It drives me crazy. Now she's going to make jello............ I'm really, really starting to hate jello.

My pain levels are soaring, the pred and Lyrica aren't helping. And I have to wait 3 months because the doctors want to be sure the bell's Palsey is gone before we start again.

Sometimes paradise is hell, especially when you have to deal with Lupus alone. My support system is too far away. My parents don't want to know that I'm sick. They want me to care for them. I did find someone online who understands and helps me with her words and stories. She's cared for her Mother for 9 years now. I want to cry, but I can't. There are no tears, I just need to keep going forward. To go with the flow and see where life leads.

Will I ever know happiest? Some days like today, I don't think so.
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  1. Moonbeam's Avatar
    Don't let your parents get to you, Nonna. You know you are not ignorant. Try to get a breather, even if it is only going outside for a few moments. Are you ever able to get away for a little while? No one can do this caregiving 24/7. I hope you have some help. Feel free to contact me at anytime for online support.
  2. Nonna's Avatar
    Moonbeam thanks, there is no one here where we are and they won't leave. My family is all up north, this is my parents world and they don't want to or are afraid to leave it. My father says when he dies then I can take mother north. But the way things are going, I just don't know.

    My sister has condescended to come once a year. To visit, I leave for a break. Maybe I'm being to hard on her as she does live in Spain. I'm just at a low point right now, missing family and friends. Dealing with my Mother's deteriorating mind is the hardest. Things were better before she had to start all the meds and the hospital stays. The hospital broke her mind this last time. All she does now is fight me on most everything. Daddy try's to help, but ends up losing his temper too. They are just old and having trouble adjusting to their loss of independence.

    Something I won't have a problem with, as I've never really had any.
  3. Moonbeam's Avatar
    My parents were the same way. They would not leave their house. Then they got to the point that they couldn't physically leave. That is when my brother had to put them in a home. My mom was so bad with Alzheimer's, she fought me on everything too. Dad tried to intervene, but he was too sick to do much good. He had the patience of Job with mom. Much more patience than I had. It was a sad situation.
  4. Nonna's Avatar
    Moonbeam I can so understand and sympathize. Today seems to be a good day for us. I walked this morning and had time with just me. Of course my mind went where I didn't want to to go. Trying to start writing again, just need an idea and will go from there.

    Hugs for you my friend, and many thanks
  5. Nonna's Avatar
    Today was a good day until we got to the doctors. Mother refused to believe she takes so much medicine; then insisted on trying to fill out the forms herself. After that it was downhill. Miss independence tried to pull away from me to go down the steps on her own and luckily I caught her as she would have fallen yet again. Now she's in the other room complaining to Daddy about me. Moonbeam you said your Dad had patience with your Mom. My Dad's patience goes just so far and no farther. At 97 and an old world Italian man, he still believes his word is law in his house.

    Other than that it was a good, I got to walk again.

    Oh called my doctor about test results and got a message that the number was disconnected. I think their phone system may have been down. Will try again tomorrow.
  6. Moonbeam's Avatar
    Does your mom use a walker? If your mom is falling when you go out or are in the house, it might be time to consider one for her? My mom had fierce resistance to using one, but we made her use it anyway. As you know, she may only be one fall away from being bedridden for the rest of her life. I took my mom to the Dr. one time when she fell in the elevator onto other people. Luckily, they didn't get hurt. It got to the point where I could not take her to the Dr. anymore or to the dentist anymore. That is when they had to go to a rest home. There was a Dr. who made home calls there fortunately. It wasn't long after that that I got hospice to come in and help Dad with the pain. They were giving him less that a year to live at that time. He lasted about three or four months more by the time hospice took over. On a lighter note, I am glad you had a little bit of a reprieve before you took your mom to the Dr.
  7. Nonna's Avatar
    I don't know how people do caregiving as a profession. Maybe it's different when it's not family. Right now I feel like I'm being treated like a slave. It doesn't matter how I feel, I have to complete the task they want done at the time. You raise and care for your child, then expect time for you. I went from raising my kids to helping raise my grand kids and now caring for my parents. Feeling every much down at the moment. Need to pick myself up and make the bad thoughts go away.
  8. Nonna's Avatar
    I've decided that my mother is obsessed with time. She messes with her watch and is constantly asking what time I have. Meals, bedtime, everything must be by the clock.

    As for me, my mind to finger, eye co-ordination seems worse. I just spelled by as Byblos. What is that? How does that happen. Can't wait to get off this antibiotic I'm on, so I can take my pain pills again. The Lyrica doesn't help with joint pain.

    People in the complex are starting to go back up north now. I hope once it quiets down I can get back into a normal routine. Trying to adjust to Mother's current desires is hard. Some days we go smoothly others are rough. Wish I had funny stories to tell. Need to laugh more, None of the usual stress relievers are working lately. I'm at rock bottom I think, only place to go is up.
  9. Nonna's Avatar
    I'm so tired. I don't like having to cook every night. I used to love to cook and try new recipes. Now I can't it's the same thing , day in and day out. They don't like this, they don't like that. I'm so physically tired because I have to get up before I'm ready, I have to make sure all is going smoothly. I'm just so tired............ Lupus or stress? I don't know. I just want to sleep.
  10. Moonbeam's Avatar
    As you know the lupus can make us very tired, as can stress. I think both may be affecting you.
  11. Nonna's Avatar
    Moonbeam ((((((((((hugs)))))))). ;-). You do help me to feel better, never doubt that
  12. Moonbeam's Avatar
    I am glad I make you feel better. I have been nicknamed Pollyanna by another friend. He wanted to do himself in, but he said I gave him the strength to go on living. I never see myself as a cheerleader though. I just tell it as I see it!