Sunday, January 5, 2014

The system


I'm not sure where to start with this post so excuse me if I ramble a bit.  There is a mix of good news and some not so good.   Might as well start with the background and then hit you with the good.   On December 18 I met with the doctor who quietly advised me that Mom had about 2 weeks to live.  Throughout the holidays we had good days and some very bad days, all along as I quietly and sadly counted down the days in my head. 

Following a pretty bad New Years Eve, Mom seemed to rally a bit.  She stabilized which was a blessing but also what I assumed was what people often term "the brightening" before the end.  However the rally continued for the past few days.  She isn't getting better, but she isn't getting worse. 

Yesterday I was advised that since Mom had several consecutive good days, she is no longer considered palliative and is now deemed "medically stable".   Which is great news - truly.  But it also means something else.....it also means that now I will be charged for her care AND she is now in what I call "the system".  

All the hard work that Auntie and I have done over the past few years was to keep Mom at home as long as possible and be able to select the Long Term Care facility of our choice for when that time came.   As long as she was at home, we had that ability.   This is no longer the case.   As she is hospitalized and "medically stable" we now have lost all control over the future.  She is unable to be cared for at home now.  She will remain in the hospital until a bed in a facility opens up.  This could take months.  But the worst part is that she will be forced to take the bed in whatever facility, wherever, once it's her turn.  That means it could be anywhere from a 20 minute drive to an hour and a half drive away.  There is no guarantee that she will be placed in our town.  

Having said all that rant, I have extremely grateful for Moms strength and the fact that she continues to fight.  That's what is happening around here.  I have to of back to work tomorrow.  At least things have settled down a bit. 

24 comments:

  1. Welcome to Obamacare. Sad to say but is true.

    Saundra

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  2. Kim I am so very sorry for the predicament you and your mom are in with her care. I am not sure what it means you will be charged doesn't she get health care under your system? My heart aches for you keeping you in my prayers.
    Cathy
    Cathy

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  3. Trust in the Lord that all will work out ok. You take care of you for a bit.

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  4. I suppose it's called taking the good with the bad...I pray when your mom's time comes to be placed in a home, it will be one that is close. How difficult this situation is for everyone...Stay strong...We all are praying for you, your mom and auntie...

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  5. Kim, I can't imagine what a sad Christmas and New Year you've had. I was hoping your Mom would be able to come home again. I wish there was a better solution for what's happening with her care. Please know I'll keep on praying and hope she can go some place close by.

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  6. I wish I knew the answer to this Kim but unfortunately I don't. One day at a time, that's all you can do. I will keep you in my prayers.

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  7. Oh dear...I hope something works out to make things a bit easier on your family.

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  8. Kim, I have tried to write this comment more then once with the tears in my eyes knowing what you are going through. It seems like what we have fought so hard to have control over gets taken away from us as though we know longer know how to take care of our love ones. Just know that there are many prayers being said for you and your family. Prayers being said that a opening will be soon and that it will be close to you. Stay strong, I know it is easier said then done. Many Hugs and Prayers from Your Missouri Friend.

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  9. Well I will be hitting my knees and keeping this in my prayers. We have a big God who loves to do great things. I know that since He got you through the holidays and your Mom just isn't ready to go, He can keep your Mom close to you. I will be praying about all of the other things that you have shared, remember nothing is impossible with God, maybe with men but not God.
    Every thing will work out. It will be okay. I am so sorry you are in the system too. You have both worked so hard.

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  10. Oh Dear kim, so sorry to hear that you lost control of your Mom, pray she is placed close by....Big Hugs Francine.

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  11. Kim,
    My heart breaks for you. All that you've worked so hard to do has been taken from you. It seems so unfair.
    I will keep you in my prayers.
    Sending big hugs :)
    Lauren

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  12. Kim, I am so sad for you! Please know that there are prayers from here for a good placement for your Mom. Hugs!

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  13. I am sending you a hug and a prayer. sandie

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  14. Yes, I hope, too, that they choose somewhere very close to you ~ we'll say prayers for that outcome ~ thinking of you!

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  15. All this uncertainty must be hard to bear for you and Auntie. Our prayers have been answered for your Mom to get through this frightening episode with the septic shock, I'm sure that God will answer our prayers that a place close to home will come available for her. Keep your hopes up and never give up.

    I'm so sorry that you are going through this bad time. The weather isn't helping either.

    I'm keeping you in my thoughts and prayers.
    Hugs,
    JB

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  16. Oh no. The hospital here tried that with my mom. I had legal power and signed her out, rented equipment and aides for home. My aunt brought my uncle home with all the expense and equipment, then luckily got him moved to the facility they chose. Such uncertainly plus her condition must be constantly weighing on you but her improvement is good news. I hope her transfer is close and meets with your approval. Your photo says it all. It may work out with the best possible outcome.

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  17. Keeping your family in my prayers! Hugs,Jen

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  18. Kim it probably won't help a great deal, but try to focus on all you have been able (and willing) to give your mom in the years she's been with you. It's a kind of love (and life quality) more parents than I'd care to think of never receive from their children.

    The 'intervention' of the system is maddening, but add it to the list of things that are done with no thought of the big picture in every country/city/town. On the other hand don't underestimate how much of a difference (albeit not the one you'd choose) you can/will continue to make in your moms' life as her advocate (even by phone) now at the hospital and once she's placed. Having you watching over her and watching out for her will make a night and day difference in ways too lengthy to count.

    Damn any system that contradicts the heart ~ but the 'system' and distance can't diminish love - and with luck (which you all deserve) she won't be too far from you.

    Stay strong lady and be proud of yourself - because you're doing all you can. All anyone could.

    Hugs
    Issy

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  19. Aww Kim. One day at a time. I am praying that it works out. It just has to.

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  20. ohdear. Sorry to hear that things are going badly. I will keep you and your Mom in my prayers. Hang in there.

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  21. Kim, I am so sorry. This is such a terrible time for you. My heart goes out to you and you are in my prayers. xo Laura

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  22. Ugh, I hate the system. I'm so sorry this is now a worry for you, on top of everything else. I will be praying that a bed opens up quickly, and closely!

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  23. Glad to hear your mum is hanging in there.. Boy the system sure doesnt make things easy and to me its different for everyone.. Thinking about you kim and keeping you, mom and auntie in my prayers.

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  24. Thoughts and prayers for you, your mom and auntie. I will be praying that a placement opens up in a facility that you would have chosen and that is close to you.

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