Just needed someone to listen

dar_sJune 16, 2006

HELLO! I am a newbie. I take care of my mother. She has been trached and is on a ventilator. In 2004 she had got a cold which turn into the flu, then turned into pneumonia. Her lungs filled over night and she stopped breathing. She was in an coma for 2 weeks. While she was in a coma, the doctors told be she was not picking up breathing on her own and that she need to be trached. It was one of the hardest things I ever had to decide.

The doctor says that maybe one day she would get off but it may take a while. Well it has been a while and she still is on a vent and I am still taking care of her I get nurses 16 hours of the day. That is when they can staff it and they never do holidays. I have done more hours taking care of my mom then the nurses.

I took my mom to the doctors a couple of days ago and he told me that my mom has a anemia that turns into leukemia. The doctors before that told me that she has 2 spots on lungs and a mass on her kidney.

I do not know how much more I can handle. It is so hard being here every day. It has taken such a toll on my personal life. I fight with the nursing agency on a daily bases.

I look on the web all the time to see if there is any special funding to help with nursing for my mom. I will not put her in a nursing home. I feel as she will die in one of those place they do not care. I promised her I would not ever do that to her.So I fight every day to get her what she needs. Some way I get her what she needs and some of what she wants.

Every day I pray because you see I have MS and both of my knees have been replaced(total knees).

I guess I just wanted someone to talk to. Thank you for listening.

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Oh my!!! you really do have a lot on your plate. Keep on coming here and talking, there is always someone here that is listening. Every person is different, so sometimes the advice isn't what you need, but everyone will be trying to help make things easier for you.

Now, this may depend on where you live but one of the most caring group of people that will be able to help you is a Hospice. If you haven't contacted them, you should. In my area, there is a non-profit one that Medicare helps pay for.

I am certain that your mom would qualify for home help. Then, as her condition worsens, and it will, she will have access to medications and care that will make things much easier for her. I know that you made the promise not to put her into a nursing home, but you may find that she needs around the clock care at some point. Hospice would be there for her. You want her to have the best possible care.
Take care of yourself too. The road ahead may be a rough one.

    Bookmark   June 16, 2006 at 2:38PM
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Sorry, I forgot to say that most Hospices are set up to also provide home care when it is needed. I believe, (but not sure) that Medicare helps with that care too. It wouldn't hurt to find out what is available in your area so that when you need it, all the paper work would be set up and everything would be ready.

    Bookmark   June 16, 2006 at 5:05PM
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Welcome to the Forum, Dar. You really do have a complex situation there. Your Mom sounds like she needs 1 on 1 care, which she will not get in a facility. But it IS really hard being trapped at home every day by someone else's needs. Vent patients are a handful.
You deserve a lot of credit. Many folks are afraid to care for patients this complex. Do stay in touch...some one is always around here to listen and bounce ideas off of.
The Hospice idea is a good one...you should check it out. They were a life-saver for me.....
Take care, Derry

    Bookmark   June 16, 2006 at 10:31PM
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Do you have confidence in the doctor or would you feel better with a second opinion from an oncologist? I learned I had to stick up for myself and require answers, not generalities concerning my husband. If you like the doctor, it may be time for you to have a talk with him about the trach "for a little while" has dragged out to 2 years - why? Does your mother need to see a specialist now?
Other options may be your church has someone that is a nurse that they know does this type of care, or the council on aging in your area, and the dept of Human Resources for the state. I have found they have lists of names but be very careful as I found some very unreliable people as far as taking care of my husband and liked sitting watching TV instead of helping him.
It's difficult, frustrating, patience draining, and sometimes lonely to care for someone. My momma gets smarter as I get older and realize how wise she was and is. She told us as we were growing up that when things seem so hard to bear, look around and you won't have to look far and there is always someone so much worse off. I was going through a hard time with my husband's health deteriorating and my sister had cancer and little time left. People kept telling me " the Lord will not put more on you than you can handle". Well, my heart just ached with the sadness and I told the one person that said that as she was selfish and a nosy ol' witch, "Well I think the Lord has me confused with somebody else as I don't know how much more of this crap I can take". Her mouth fell open and she left me alone. Sometimes we just have to find a way for people to take their good advise and leave us alone to let us think it out and make the decisions we feel are right.
I wish you the best and pray for an angel to sit on your shoulder to watch over you.

    Bookmark   June 16, 2006 at 11:11PM
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Hello! Again. Thing just keep getting worse. I really do not know how much more of this I can do. I know it is getting bad when I hope that when she goes to sleep she never wakes up. But then I feel so guilty for thinking that way. It gets really hard when she sits here saying that she hopes she dies. It is so hard for me to sit here and listen to it every day. Every day I wake up and wish this all was a big night mare but then I get hit with the reality of it.
Today for the first time she blamed be for putting the trach in her neck, she hates that trach so much. She know that I feel so guilty for that trach because my mom and I have both said we never wanted to be put on a machine. But I tried to explain to her the her mine was fine, and that I had them run 4 cat scans so I was sure she had no brain damage before I would sign that paper. So now she throws that in my face.
I am just burned out.
Thank you for listening to my rambling.

    Bookmark   June 23, 2006 at 12:33PM
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