Wednesday, November 5, 2008
Change
Yesterday seems so monumental. The change we are about to experience in this country is huge, at least I hope. We need it. This change comes on the heels of so much change in my life. I sort of don't even know how to feel. Looking back a year, if you had told me I would be where I am now, this country would be where it is, I wouldn't have believed you. But here we are. Everything happens for a reason right? Lets continue on with our change and see where it takes us. Here's to change!
Friday, September 19, 2008
Coming back to life
Its been 3 months since mom has been gone. Every day it hurts. But I am trying to come back to life. This little thing found us somehow. She helps.
Friday, June 27, 2008
Thursday, June 5, 2008
Hold the phones
Talked to Dr yesterday. Mom isn't moving to the new unit. He has some concerns, another meeting tomorrow.
Tuesday, June 3, 2008
Moving along
Had a meeting at the hospital yesterday. They are moving mom to a different part of the hospital. She no longer needs the constant heart care she has been getting (good) but still isn't ready to go to the next phase. Where she is going they will work on her pain managment and rehab mostly. So that is good. Scary too. They are talking about discharging her in about 7 weeks. Now that could be to home or it could be to a rehab center (although no one wants to take her due to her condition). The scary part is her condition. If she has one of her episodes she needs to get on the dialysis machine asap. Near her home, the dialysis machine isn't available for urgent things like that...the closest machine for that is an hour and a half away. Is that enough time? I guess we will start asking them those questions in a couple weeks. But I would really hate to get to the point where she can be released then have her have an episode at home only to either end up back in the hospital or passing away.
One step at a time, thats all I can do right?
One step at a time, thats all I can do right?
Tuesday, May 27, 2008
More of the same
Not much new on the mom front. The procedure did not take on her back, so she is on limited mobility until it heals. Basically she can do whatever she can until it hurts. So slowly they will start moving her more.
She has an intestinal infection that bums her out. But like I told her that is minor compared to everything else she has been through.
She is eating some more again. They say she is getting enough calories in so that is good.
So more of just holding the line.
I have the same intestinal infection...so I figure now is as good a time as any to get back on the WW bandwagon. Today is day 1. I have had no appetite for 6 days so all is good. I should lose weight at least.
Will update more when there is more to update. I am ok right now with the no news is good news theory that seems to be going on.
She has an intestinal infection that bums her out. But like I told her that is minor compared to everything else she has been through.
She is eating some more again. They say she is getting enough calories in so that is good.
So more of just holding the line.
I have the same intestinal infection...so I figure now is as good a time as any to get back on the WW bandwagon. Today is day 1. I have had no appetite for 6 days so all is good. I should lose weight at least.
Will update more when there is more to update. I am ok right now with the no news is good news theory that seems to be going on.
Tuesday, May 6, 2008
3 steps forward 2 back
After complaining of back pain, they did xrays on mom only to find that she has osteoperosis and a cracked vertabrae. So she is back in bed 24/7 and hopped up on pain pills. Refusing to eat and demanding a feeding tube. Which is riduculous because only 72 hours ago she was eating just fine. This angers my father, he feels mom is just being "lazy" and doesn't want to do any work on the eating front. I say it is the pills making her this crazy. Cause she knows it doesn't make sense...but the pills make everything sound good. I am sure someone at the hospital said "if you don't eat you will have to get a feeding tube" and she said good...give me one. But dad won't listen...he thinks she is just being stubborn and saying that if she insists on a feeding tube he is done, he is having nothing to do with her anymore because he can't handle it.
I talked to the head nurse, and she agreed that it seems like a drastic measure seeing as sometime this week mom should have a procedure done that will fix the back and will feel immediate relief. Thus, she should be back to her eating. Now dad thinks that she should still be plowing the 2100 calories a day down that she was doing before. I understand that with pain she might not be that hungry. So in talking with the head nurse/dad/myself, we agreed that we are going to try to get her to drink her ensure drink at each meal. That is 1500 calories a day and more then sufficient. Its also the same thing they would put in a feeding tube. They are also going to tell her she has to do it. Period. Because if you give her an option she won't do it. Which is what happened this weekend. The nurse on duty said she wouldn't force mom to eat so she was lucky to eat 500 calories each day. So now the nurses are under orders that they have to tell her she has to drink her drink period...if she eats on top of that its a bonus...but not drinking the drink isn't an option.
I feel this is a huge setback and am severly anxious about it. Probably mostly by my fathers attitude. I worry about him. I worry about mom. What don't I worry about?
I talked to the head nurse, and she agreed that it seems like a drastic measure seeing as sometime this week mom should have a procedure done that will fix the back and will feel immediate relief. Thus, she should be back to her eating. Now dad thinks that she should still be plowing the 2100 calories a day down that she was doing before. I understand that with pain she might not be that hungry. So in talking with the head nurse/dad/myself, we agreed that we are going to try to get her to drink her ensure drink at each meal. That is 1500 calories a day and more then sufficient. Its also the same thing they would put in a feeding tube. They are also going to tell her she has to do it. Period. Because if you give her an option she won't do it. Which is what happened this weekend. The nurse on duty said she wouldn't force mom to eat so she was lucky to eat 500 calories each day. So now the nurses are under orders that they have to tell her she has to drink her drink period...if she eats on top of that its a bonus...but not drinking the drink isn't an option.
I feel this is a huge setback and am severly anxious about it. Probably mostly by my fathers attitude. I worry about him. I worry about mom. What don't I worry about?
Wednesday, April 30, 2008
Back to anxious
I am back to being anxious and unable to keep my head off the mom situation. Has anything changed? Not really. She is still in the hospital. No rehab facility will take her due to the risk of her breathing episodes. Even though she goes weeks without one and may even stop having them now that they are changing her dialysis schedule. I guess the anxiety comes down to a few things.
1)Mom is down. She says she doesn't see any progress and just wants to be home. She has made progress...in the last 2 weeks alone she has improved in the following
Able to sit in the chair for 3+ hours up from 15 min. And this is without dizzyness or pain
Able to sit on the edge of the bed with minimal support for 17 min.
Arm strength way up
Able to move her left leg.
Eating her meals on her own, we don't have to feed her. And she eats it all!
2)Last week the Dr asked dad if mom was a DNR. Now this conversation should have happened months ago admittedly, but the timing stinks. Just when the light at the end of the tunnel goes out a little bit more they hit you with this making you feel like there is no light at all. Dad had a good plan he gave to the Dr...now he tells me he is changing his mind, but he won't tell me what it is until I go up there this weekend. So I don't know if it is more agressive or if he is getting down and telling them to be less agressive. I am guessing it is less agressive. Which I don't agree with. But he said he won't tell the Dr it until he gets to talk to me, so hopefully I can talk him out of it.
3)Monday mom and dad had a meeting with a dr who is really a consultant of sorts. Mostly with people though who are towards the end of their lives. To help them make plans and decisions. Not that mom is going into hospice or anything like that. But I think for both of them knowing the end is most likely within a couple years at best is really hitting them and thus it hits me. This Dr also laid it out that if mom had one of these breathing episodes at home, it could be the end. That being said, she would need 24 hour supervision.
So I had stopped seeing the shrink, had been feeling better. But that is all gone now. So I have pulled the phone number out and will call today to see when I can get in to talk to her. I am not sure if it will make any difference. I mean, moms condition isn't changing.
I just try to remember all the progress she made and hope that dads dnr plan doesn't have to go into action. I also try to remember how lucky I am. When I hear about stories of how young some people are when they die, or even my friends who have lost their parents, I try to remember that I have been lucky to have mom this long. It doesn't stop the pain, but it does make me feel not alone so much.
1)Mom is down. She says she doesn't see any progress and just wants to be home. She has made progress...in the last 2 weeks alone she has improved in the following
Able to sit in the chair for 3+ hours up from 15 min. And this is without dizzyness or pain
Able to sit on the edge of the bed with minimal support for 17 min.
Arm strength way up
Able to move her left leg.
Eating her meals on her own, we don't have to feed her. And she eats it all!
2)Last week the Dr asked dad if mom was a DNR. Now this conversation should have happened months ago admittedly, but the timing stinks. Just when the light at the end of the tunnel goes out a little bit more they hit you with this making you feel like there is no light at all. Dad had a good plan he gave to the Dr...now he tells me he is changing his mind, but he won't tell me what it is until I go up there this weekend. So I don't know if it is more agressive or if he is getting down and telling them to be less agressive. I am guessing it is less agressive. Which I don't agree with. But he said he won't tell the Dr it until he gets to talk to me, so hopefully I can talk him out of it.
3)Monday mom and dad had a meeting with a dr who is really a consultant of sorts. Mostly with people though who are towards the end of their lives. To help them make plans and decisions. Not that mom is going into hospice or anything like that. But I think for both of them knowing the end is most likely within a couple years at best is really hitting them and thus it hits me. This Dr also laid it out that if mom had one of these breathing episodes at home, it could be the end. That being said, she would need 24 hour supervision.
So I had stopped seeing the shrink, had been feeling better. But that is all gone now. So I have pulled the phone number out and will call today to see when I can get in to talk to her. I am not sure if it will make any difference. I mean, moms condition isn't changing.
I just try to remember all the progress she made and hope that dads dnr plan doesn't have to go into action. I also try to remember how lucky I am. When I hear about stories of how young some people are when they die, or even my friends who have lost their parents, I try to remember that I have been lucky to have mom this long. It doesn't stop the pain, but it does make me feel not alone so much.
Friday, April 18, 2008
TGIF!!!!
Thank god its Friday! What a long week its been. Nothing dramatic happened, but I feel like life has been sucked out of me! This will be the first weekend in a long time we will be home and not at the hospital without having plans. My goal is to have a "normal" weekend. Doing stuff I used to do, prior to 5 months ago, on the weekends. You know, clean, relax, do errands...stuff like that. I even came up with a to do list since there is so much to do!
Mom is making steps forward. It has been about 3 steps forward, 1 step back for the last 3 weeks. She can now get out of bed, use the bathroom, stuff like that. Still in the hospital though. Not physically ready to go to rehab. They have certain things she needs to be able to do physically that she can't from being kept in bed for 8 weeks. So she has to rebuild to them. The Dr is hoping in the next few weeks though she will get to rehab. Although it will most likely be the rehab right by the hospital vs the one close to home. They just want to be safe because she has need some extra dialysis sessions due to being in bed so much. And if that happened on the weekend, they would end up taking her to the hospital anyways...2 hours away...so might as well keep her near there until she gets out of that pickle.
Last night I purchased a bunch of wine for when my friend comes over to visit next week...I have a feeling though that it will all be gone by then.
My goal this weekend: Relax!
Mom is making steps forward. It has been about 3 steps forward, 1 step back for the last 3 weeks. She can now get out of bed, use the bathroom, stuff like that. Still in the hospital though. Not physically ready to go to rehab. They have certain things she needs to be able to do physically that she can't from being kept in bed for 8 weeks. So she has to rebuild to them. The Dr is hoping in the next few weeks though she will get to rehab. Although it will most likely be the rehab right by the hospital vs the one close to home. They just want to be safe because she has need some extra dialysis sessions due to being in bed so much. And if that happened on the weekend, they would end up taking her to the hospital anyways...2 hours away...so might as well keep her near there until she gets out of that pickle.
Last night I purchased a bunch of wine for when my friend comes over to visit next week...I have a feeling though that it will all be gone by then.
My goal this weekend: Relax!
Tuesday, April 8, 2008
Status Update
Mom has finally started making progress. Her bedsore is healed, and they are working on building her strength back in order to get her ready to go to rehab. She is sitting up in a chair for over an hour at a crack. She has to get to 3 hours so she can do Dialysis. Once there, they will send her to rehab where she will have to relearn to walk again. I have been in regular contact with her Dr and discussing her medical condition. She has shown signifigant improvement in that area as well, and we are working on adjusting her meds, specifically the ones that play with her head. For the first time in such a long time this weekend I got to really talk to my mom. She carried on full conversations. What a relief.
On the home front though my husband admited to me that he feels left behind. That I am not making him a priority right now and he misses that. I am having difficulty juggling making everyone happy. Mom and Dad want me at the hospital (4 hours from our house) every weekend. My husband wants me home. I can't please everyone. In some ways I feel like he is being selfish...this hasn't been years...its only been 5 months. But yet I understand...if I lost him for 5 months I would be going insane. I just don't know how to make everyone happy. But in the same token, everyone keeps telling me, do whats right for you...make yourself happy. I don't even know what makes me happy though...is it going up there? Is it staying home? I just don't know. Seeing the shrink isn't helping me either. She helped me figure out a few things, like why I was so angry at my mother for so many years...but now that we are trying to work on "me" I don't feel she is helping, so I will probably stop going to see her. I just wish there was a magic answer...but there isn't. Please just give me strength to get through it, that is all I ask.
On the home front though my husband admited to me that he feels left behind. That I am not making him a priority right now and he misses that. I am having difficulty juggling making everyone happy. Mom and Dad want me at the hospital (4 hours from our house) every weekend. My husband wants me home. I can't please everyone. In some ways I feel like he is being selfish...this hasn't been years...its only been 5 months. But yet I understand...if I lost him for 5 months I would be going insane. I just don't know how to make everyone happy. But in the same token, everyone keeps telling me, do whats right for you...make yourself happy. I don't even know what makes me happy though...is it going up there? Is it staying home? I just don't know. Seeing the shrink isn't helping me either. She helped me figure out a few things, like why I was so angry at my mother for so many years...but now that we are trying to work on "me" I don't feel she is helping, so I will probably stop going to see her. I just wish there was a magic answer...but there isn't. Please just give me strength to get through it, that is all I ask.
Tuesday, March 18, 2008
Up and down
The last 4 months have been beyond hellish. My mother is still in the hospital due to her stage 4 bedsore. I have so many things to say about that that I don't even know where to begin. So I will just say one thing.
Bedsores are 100% preventable. If you or one of your loved ones are in the hospital for an extended period of time, and are not capable of moving yourself, make sure that the nursing staff turns you at least once every 2 hours. And not just turn, they should use a foam wedge to ensure that you are properly moved off your backside.
Since all this has begun, I have found out that the government agrees that bedsores are preventable and as of October 2008, is making hospitals pay for the care of these sores for anyone who gets one while in the hospital. That doesn't help my mom, but at least it is a start for others out there.
Mom could have been released to rehab back in January if it were not for this sore, and now we are still looking at least a month in the hospital. All the while, I watch her mental health deteriorate because they are doing nothing to stimulate her. So she just stares at the ceiling. I just pray that when she gets home or in another setting that this will improve. That is the hardest thing of all to see.
How have I been hanging in there? I haven't. I see a shrink now to try to deal. My husband doesn't think I am dealing at all. Its is an up and down roller coaster...one day I am fine, the next I cry at a commercial. Life just feels hard right now. Like its hard to get up, like its hard to function. But I will go on. I have to...for my family.
Bedsores are 100% preventable. If you or one of your loved ones are in the hospital for an extended period of time, and are not capable of moving yourself, make sure that the nursing staff turns you at least once every 2 hours. And not just turn, they should use a foam wedge to ensure that you are properly moved off your backside.
Since all this has begun, I have found out that the government agrees that bedsores are preventable and as of October 2008, is making hospitals pay for the care of these sores for anyone who gets one while in the hospital. That doesn't help my mom, but at least it is a start for others out there.
Mom could have been released to rehab back in January if it were not for this sore, and now we are still looking at least a month in the hospital. All the while, I watch her mental health deteriorate because they are doing nothing to stimulate her. So she just stares at the ceiling. I just pray that when she gets home or in another setting that this will improve. That is the hardest thing of all to see.
How have I been hanging in there? I haven't. I see a shrink now to try to deal. My husband doesn't think I am dealing at all. Its is an up and down roller coaster...one day I am fine, the next I cry at a commercial. Life just feels hard right now. Like its hard to get up, like its hard to function. But I will go on. I have to...for my family.
Thursday, February 28, 2008
Your help needed!
Have you known anyone who has not recieved the quality of care they should have at a hospital? If so, I would like to hear from you and find out how you handled.
We are having issues with how they are handling Mom and hitting a brick wall.
Your assistance is appreicated. Thank you.
We are having issues with how they are handling Mom and hitting a brick wall.
Your assistance is appreicated. Thank you.
Friday, January 25, 2008
Making a commitment
With all the craziness of the last 2 months I have fallen off the Healthy Lifestyle bandwagon. My eating has been crap, I haven't excersised and I am not even tracking my food.
So Monday I commit to get back on my Weight Watchers plan. Hell I am paying for it still. And to get in as much excersise as possible.
I am amazed that I have only gained 5 pounds during this time...but still, I need to get back on the bandwagon.
Wish me luck!
So Monday I commit to get back on my Weight Watchers plan. Hell I am paying for it still. And to get in as much excersise as possible.
I am amazed that I have only gained 5 pounds during this time...but still, I need to get back on the bandwagon.
Wish me luck!
Thursday, January 17, 2008
Mid January already?
Wow this month is flying by. Not only is it my busy season at work, there is allot going on in my life with my mom. I will try to summarize:
Work:
I am amazed on a daily basis how little people get done during the day and continue to look like they are super busy. I admittedly kill allot of time at work, but my co workers take the cake. They have failed to meet the minimum requirements for their job this month...yet, I have gotten mine done and some of theirs. How does that happen? No clue. Is it recognized by my boss, yeah...so I don't complain too much.
Mom
Mom continues to improve...slowly but surely. In fact this weekend she was able to carry on a full conversation...so I would say her head is coming back. She isn't plugged into anything...no oxygen, no iv's, nothing. The only thing holding her at the hospital vs the rehab center is the bedsore. Which they say is doing well, but will leave her in the hospital for at least another 2 weeks. She is starting to go stir crazy there now that her head is back. Please keep your well wishes coming. I truly believe that peoples positive thoughts help!
Other then that, no time for anything else. My birthday was last week and the best gift i got was to be able to have an actual conversation with my mother. That was such a wonderful thing. My husband got me a GPS system which was a very close second, but Mom was #1.
Work:
I am amazed on a daily basis how little people get done during the day and continue to look like they are super busy. I admittedly kill allot of time at work, but my co workers take the cake. They have failed to meet the minimum requirements for their job this month...yet, I have gotten mine done and some of theirs. How does that happen? No clue. Is it recognized by my boss, yeah...so I don't complain too much.
Mom
Mom continues to improve...slowly but surely. In fact this weekend she was able to carry on a full conversation...so I would say her head is coming back. She isn't plugged into anything...no oxygen, no iv's, nothing. The only thing holding her at the hospital vs the rehab center is the bedsore. Which they say is doing well, but will leave her in the hospital for at least another 2 weeks. She is starting to go stir crazy there now that her head is back. Please keep your well wishes coming. I truly believe that peoples positive thoughts help!
Other then that, no time for anything else. My birthday was last week and the best gift i got was to be able to have an actual conversation with my mother. That was such a wonderful thing. My husband got me a GPS system which was a very close second, but Mom was #1.
Tuesday, January 8, 2008
Tornados in January?
In Illinois yesterday we had tornados in January! Do things get any more out of whack then that?
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