If we go NH all our money is taken. I'm ok but Mom's not.
My mother and I care for my grandma. Grandma is 95, bed-ridden, has partial dementia and an overall VERY high-maintenance personality, to the point that dementia and her own personality are the same (can't tell when it's dementia sometimes). I am able to tune her out when she is screaming from the bed. I used to jump at her every scream, but this makes me lose my sanity so I stopped. I've learned that she is unhappy no matter how much I help her, so I only go when it seems necessary/change her/feed her. I am somewhat annoyed at the limitation on my own personal schedule, but I still make time to go to church often and teach some violin students. I would like to teach more students sooner than later, and sometimes am annoyed that I can't work more.
My mom is going nuts. She is already obese, and after a long-needed doctor's checkup, she learned that she is pre-diabetic and has high blood pressure and some other things. She is neglecting her physical health. Also she feels stressful tightness in her neck and upper chest. She is falling asleep while driving sometimes, and even stumbling on her feet occasionally. She is 63, and commutes to work up to 4 hours a day driving from Queens to Brooklyn. Her job is stressful and she often takes work home, but can't do it because she's either helping grandma while I'm out, or too stressed by the screaming to do anything. She can't sleep because she sleeps on a couch right next to Grandma's bedroom, so she doesn't sleep very well.
My situation is more fortunate: I can sleep because I am far away, I am refusing to stop going to church so I can get away, etc. I'm actually sacrificing my working out exercise schedule that I put in plac 2 months ago. I started working out a lot 6 weeks ago and lost 20 lbs. But now I am not doing that anymore because Grandma can't be left alone anymore. I would like to resume that but right now I can't, until we hire home health attendants.
As far as Medicaid goes, we lose grandma's life savings and the co-op we live in if she goes NH. There is no way around this except to keep her at home. We have been doing this so far, but Mom is going crazy. Also I am to a lesser extent, but I would more say that I am annoyed at this point. I was going crazy earlier, when she was not bed-ridden. Now that she is in bed it is easier. But I would still like her gone. Not gone from the world, goodness no, but just in the hands of people who do this for a living. I would like to work. At this point, I treat her like a nurse would treat a patient. I talk in a "false cheerful voice." and I don't take her seriously. Taking what she says personally, or trying to reason with her is not going to help her. Just fulfilling her basic needs is what is best, and making sure she doesn't get into danger.
I'm not really asking for advice, because any suggestion I make to my mom is ignored. She is in total control of what we do, and she doesn't make decisions unless something happens and she is forced to act. I don't work like this, I prefer to plan ahead. My suggestion to her is to forgo the money, and send grandma to a nursing home. Our health and sanity is much more important. What good is money in the future, if we are too sick or dead to enjoy it? Life is much more important than money. Also Grandma is not near death like you'd think. She eats A TON. And the doctors told us that she is so old, that even if she got cancer, it would grow so slowly that it wouldn't be a threat. And she's got enough energy to scream all day and night. She even thinks she'll be using the toilet again some day. Lord willing, she won't, because it is a great strain on me to supervise this. Also she has the desire to use the toilet every hour or sooner because she doesn't want to be wet.
Just wanting to share my story. Feel free to relate experiences, offer thoughts, etc.
THe co-op is in my grandma's name. She has left the co-op to us after she dies, so that is not a problem. The problem is that if we go NH while she is alive, the gvt will take her assets (savings, co-op).
Things don't seem as grim as they were when I wrote the message before. My mom is getting more energy and she is not as tired right now. We will probably keep grandma home, and hire home health attendants. Also we are going to apply for Medicaid in May (we were advised by our elder care lawyer to do this), and then if that goes through we will potentially have someone coming to our house for 10-12 hours a day. That would kick in in about 3 months.
It's hard. I'm not a natural caretaker. I have always planned to not have children because I am not a nurturing type. As for being a loving granddaughter, I think that is really hard. I'm basically interacting with her the way I've always interacted with her. We're not a lovey-dovey family here. But I do enjoy her company sometimes. We are affectionate as a family, but it's more like loyalty rather than true love at times.
Some other random thoughts on reading your story:
I take it the co-op is solely in your grandmother's name? Have you checked into Medicaid thoroughly, as in talking to an estate planner or an elder law attorney? Since you have been living with her and caring for her, I think there may be some exceptions about the state taking the home after GM dies. Check it out to be sure. In fact, check out all your assumptions so you are not basing decisions on false premises. (Oops, that's advice, isn't it? Sorry.)
I find your first sentence interesting. In what sense is the money "ours?" Only your grandmother's money would be involved in spend down. Isn't her money for her welfare? If you and Mom are thinking that she "owes" you this money because you have been taking care of her, she should be paying you now, monthly, shouldn't she? Hoping to get it after she dies is taking a risk you won't get it. And why shouldn't she be paying you? That is what her money is for, isn't it -- taking care of herself in her old age? She needs to use her money for her own support, either paying caregivers in her home (you and/or hired professionals) or paying for nursing home care. When she can no longer pay, then us taxpayers kick in via Medicaid.
Right now Mom is taking all the control. But is this really what you want to do for the next year, two years, three years of your life? Why don't you get to make some decisions about your own life? Why have you turned control over to your mom?
Right now you are coping by treating grandma as if you were a nurse. Wouldn't it be nice to go and visit her as a loving granddaughter, and let the nurses play the nurse role?
Do you think the concept of enabling might apply here? Maybe that is way off base, but it popped into my mnd unbidden. You see your mother engaged in self-destructive behavior, and you continue to make it possible for her to behave that way. Hmmm ...
OK, some of this borders on advice. I hope you realize that absolutely none of it borders on criticism. You have done and are doing amazing, caring things. I truly admire you.