Sunday, December 16, 2012
Good morning everyone. I have been a bit busy these last two months my mom has IPF Idiopathic Pulminary Fibrosis which is a terrible lung disease and there is no cure for it all we can do is manage it. In early November she got a terrible cold that turned into pneumonia and had to be hospitalized in ICU. We had one night where we thought for sure she was gonna die but pulled through. After five day in the hospital she was released and sent home on hospice care and with hospice someone needs to be in the house 24/7 and seeing how I'm the only one in the family not working or with small children at home I became the one to stay. My one sister who lives in San Jose Ca was planning on moving into moms house to help out, two days before leaving her car got stolen. "what luck" anyway life goes on. There was another time a couple of weeks ago we thought she was gonna go again and again she pulled through which I am very glad. Needless to say this has taken a hugh toll on me. I do have a caregiver that comes in mon-fri from 8-4pm but I cant go home during that time because I live an hour and a half away so it makes no sence to go home just to turn around and drive right back.
Here are a few things that I have learned by this all. I do love my mom very much
1. I HAVE to loose weight, I weigh 190 and I'm 5'9 althought this is not too bad but when someone has to change you or lift you it is NOT easy. My mom weights 190 and wow it is very difficult to change and lift her as her legs are very weak and can only stand for like 5 seconds. But what I take away from this is that I in no way in He double hockey sticks do I want to put my daughters through this if and when I get to a point in my own disease. Now my husband thats a different story I will allow him to care for me only up to a certain point and then I just want to end it all. If I cant feed myself, wipe myself,dress myself, and so on, I dont want to put my family through this. But what has made this even harder on me is that I am taking care of her at her house not my house so I have a plan that after the holidays if my sister has not made it down here I will move my mother to my house where I can care for her with a bit more help because I have two sisters that live about 10 minutes from me and my daughter lives like 5 minutes away. And I will still be able to have a care taker for 8 hours a day. Don't get me wrong I told my mom a long time ago that I would never put her in a convelesent home and that I would take care of her so I am honoring that promise. She has always said she wants to die at home and so I'm here, but when I suggested moving her to my house I asked her about that very question and her reply was well if I'm at your house then that is my home...
2. I need to get my end of life papers in order. ie Will or living trust with my final wishes, DNR papers,
3. I need to take time for me, my mind body and soul. Gosh where do I start.
4. Make time for your most valuable friends. One of my very dear friends was in the hospital for a week and almost died and I didnt even know. She called me after getting home to see how my mom was during.
Well thats all for this time. I will be back again. I hope you all have a fantasitc day and Merry Christmas and Happy New Year to all.
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It truly is important for you to lose weight but for another reason...
ReplyDeleteLupus can destroy the lungs and if it does you can not even think of being on the lung transplant list if your BMI is too high. Once you are on steroids it is almost impossible to lose weight no matter what you do.
I'll pray for you and your mom. I have end stage IPF and know somewhat what she and you are going through.
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