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The monster that is called MS.


shanrucas

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The sad thing it wasn't the nursing home that notified me when she went into the hospital Monday the hospital called me and said when I come up they want to talk to me. Then I found out and yes they do look bad the nursing home she has been in for 2 weeks did not say anything!!!! Today I called the head of the nursing home today and of course said she woul look into it. Now here I well my mom really paid this lawyer all this money had to call the office her name is Sara she tried to tell me she probably got them form where she came from up north. Well of course I had a choice of words for her --------------------------------- She shut up real fast and said she would take care of it. My mom had no sores on her at all when she arrived here saw her been there done that HUH wouldn't you also say that because you already know what nursing homes are like. I donot care what is going on either you take care of her or I will advertise to the point where they will be paying me to shutup. I will not go through this crap again uh uh!!!!!

Would you shannon?

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oops..I got too excited typing my response to this that I hit something and lost it...gotta start over..

Anyway, much different when it wasn't the nursing home telling you about it....I would of been so p....d as well. No I wouldn't of done anything different at all...Im glad you got on them about it..Nothing changes in these places unless us family members speak out, you go girl! You tell them that if this happens again, especially if it happens again and they don't notify of any little thing that may go wrong...you will report it to the state or the senior and disability agency...The money that these places make off of people like your mother or their family or even the state..it ridiculous...they can afford to hire the proper amount of CNAs to take care of people...I don't know what they charge where you are...but I know here they charge around six thousand a month...respite care is 130 dollars a day...and if she still has her own retirement..she's paying this out of pocket...Can't tell me that these facilities aren't a for profit business....Stay on them about this...don't tell them when you are checking it out...just show up...or have someone on your behalf show up..if you can...Stay on top of them. Tell them that if they are getting paid to take care of your mother..you have high expectations of them..and want them to treat her as if she was a queen..or their own family member....Ok..on my soap box now....oh if I was only there with you Leo...they would hear me Roar! I would help you anyway I could. This treatment has got to stop!!!!

Keep me posted..

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  • 4 weeks later...

Thanks so much Jim....I couldn't do it without the support I have from friends, especially as heartbreaking as it is, family is no where to be found at this time. Mom had been doing fairly well this last week, but today is not such a good day, but we WILL get through it.

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Hi Allan, thanks for asking. I guess I am still hanging in there..yesterday was a bad day for me, but I got through it cause I am lucky to have a great support system with some very special friends..they kept tabs on me all day yesterday. One of those days where I couldn't stop crying, cried till I was totally exhausted. Then I slept. Today is a bit better. Im doing the best that I can, scared that mom may out live me at this point. if not Im not sure what will be left of me. So many obstacles to get the help we need. It seems our situation just does not allow us to access the help we need. She needs to basically loose ALL her retirement and belongings to be able to access anything. I am trying to figure out how to get back to work and still be able to pay for in home help. Im burned out at this point and can't think myself out of a paper bag. Its all I can do to place one foot in front of another. Right now I am so infuriated with our health care system, Im going to start getting extremely vocal about it. Gonna start writing to our state rep first. We need a revolution in getting things changed...The baby boomers are coming and the system is not prepared for it.

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Hey!

Just read your post that I think you should do call your congressmen in your area. You make a appointment to go see him or just go in and wait hoping he is there. When my daughter was first diagnosed with a major medical problem that insurance wouldn't pay or just not give a damn I got alot of response from him. He is representing you in you area state whatever. That is a good move do it! Raise hell you need help & you need it like yesterday! Also you said you have lawyers rite? Ask them about putting your mom's house in trust. That would protect her & you.

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I also want to tell you I have not been on here for a couple of days. For the same reason I just have been crying to the point I have gotten physically ill. I just have about all I can handle. I am also deciding something that I might regret but, I'm not sure yet.

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  • 1 month later...

I am currently surviving the situation with mom..I don't know how, but I will become so depressed i can't even more...then I seem to find strenght to go about the daily needs. I am afraid though that I will break down..Im doing the best I can not to do so.

She has deteriated even more, somethimes she is aware of her surroundings and who I am and then she is like a little girl calling for her mommy, this can go on for hours, even days..all i can do is wear my head phones and listen to music when she is like this cause no matter what I do, she keeps going on until she finally falls asleep at night...late night. Its like she is awake but isn't. A nurse said her father had the same MS and he did the same exact thing. I don't feel I am doing as well with her, I find I interact with her less and less and just attend to her needs..its getting way to hard on me mentally and emotionally..its almost that I am in a grieving process..a process that may last a very long time. Many people her have offered help and suggestions to get more help in this situation, but my mind has been off line and anyting I make a phone call to some agency or something, Its like they are speaking a foriegn language to me.

I do have an appt with a psych nurse at clinic..can't afford my pdoc anymore especially having to pay for labs on top of that..I need to see someone on a more regular basis. I must prepare myself.

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I hope your appointment today offers you some relief. Will you be going there regularly as you've said you needed? It makes sense that you are going through a grieving process in this. I"m sorry things are so difficult and painful. :) I still hope there is some way for you to get help with your situation. Maybe the psych nurse will have some suggestions? Take care.

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  • 2 weeks later...

I'm so sorry that you also have to see your mom slip away and there is not a damn thing you can do. My mom is just surviving don't know how. I'm not seeing her as much as I was I call and just make sure she's OK. You are having it much harder because she is with you and I definitely understand this has got to be hell for you. I wish I knew what to say but, you know how I feel about what you are having to go through and it's a bitch. Try to take care of yourself I know it's easier said than done.

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Thank you both for your support..We seem to make it through each day, I take advantage of the good moments she has. This can keep going on for a very long time...her body physically is in rather good shape for someone who has been bedridden for ten years, she has a blood pressure of a teenager doesn't look her age at all.

Random..its good to hear from you, I hope all is well.

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