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Old 06-07-2012, 10:41 AM   #1
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And now, another wrinkle

Well, there we were, planning for my mother's discharge from the rehab center TODAY... All of my goals had been met; all the things keeping me from taking her home were resolved: the infections (all cleared up), the immobility (she can now maneuver herself in bed and chair, help transfer herself, and even walk 5-10 feet on her walker), diarrhea resolved (soft poops on the PEG tube, but solid poops), even the itching has ended (!), so no reason not to go home except for her "unmanageable" moods/behaviors. These were sufficiently disruptive that she's been kicked out of rehab (they no longer work with her) and are NOW kicking her out of the rehab wing...

That's fine, I said; our Medicare days are up if no therapy, or so you told me, so it's operation: go home...

Lo and behold, they now come out with the news that her PEG tube placement in fact qualifies her for the whole 100 days of skilled care. Hello, they didn't know this before? They were the ones telling me she was out if there was no improvement in PT.

So now the dilemma (again); the old "heart-vs-head" problem. For the past two or three days, on TRAZADONE her behavior has been much, much better. I ask if they can't reconsider her for PT and keeping her in that section. They don't care! She's out of the rehab wing and into a long-term bed unless we leave now. (She WAS disturbing the other residents with her incessant yelling.) Let's just say the long-term section isn't quite as nice as the rehab section. But, with the trazadone, she actually seems halfway content there (except that she still wants to be able to call on me during the nights) and has even recovered her manners (saying "sorry, please, thank you" instead of barking out orders and insults). She claims she doesn't care where she is as long as we spend time with her (we do; between us, every waking hour except in the middle of the night)...

I'm halfway tempted, now that there's no urgency (just have to give them 48 hours to alert Medicare, arrange for home health supplies, and for me to line up help with an agency), to try it out for a few days and see how it goes. I would favor SAVING the other six weeks but for the fact that I'm pretty sure, with her track record, they would never admit her back under any circumstance! Part of me is thinking, if her behavior improves, so will her "record," improving her chances should she ever need to return; I'm also thinking that the less money we spend now, the more we'll have later if she DOES live to be 95. The 4x/day PEG feeding, etc., I can do, but of course it's easier to have others do it. I can be up all night with her, but easier to have others do it (she still suffers from insomnia). On the other hand, I want to spent this time with her and will feel way guilty if anything happens to her while she's there. The worst part is nighttime, when she begs me to sleep with her and not leave her (she's like a little child in that respect; kills me). Brother seems okay either way, but believes she'll get better medical oversight there. Added incentives: I tore muscles in my back trying to lift her -- the wrong way -- and could use some time to heal from that. She WILL be home when the Medicare runs out, but this was some "good news" I could have more happily lived without. Now what to do? Other than take it day-by-day...

Last edited by all4mom; 06-07-2012 at 10:49 AM.

 
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Old 06-07-2012, 11:22 AM   #2
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Re: And now, another wrinkle

Sorry that you have the dilemma again. Like I said before, going to the NH is better for you and her given that the nursing home has better staff and nurses. Since your back hurts, definitely you should use this chance to have her in the NH for 100 days. Like what your brother preferred.
The other thing is, they all say they want to be with the family at home. My FIL would say that although he thought we should move there to be with him... (He lost the concept of a real home.)
Of course we are not there with my FIL. No way. It is his home, not our home.

Don't you think Mom may get used to the NH after 100 days and then you should leave her there? Try to look into Medicaid of some private pay so she will stay there. This way you can rest better and everyone would have the quality of life.

If Mom gets sick in your home, you would call 911 to go to the hospital. This may happen a lot. Like what we did when my FIL was home - he went to the hospital almost once or twice a year.
Now after he moved to the NH, he has not stayed in the hospital at all except 2 ER visits. This helps so that he does not have to go to the hospital and stay there for a week.

Certainly if you are sure you can cope with Mom at home, it is your call. But I would suggest that you try the NH first.

Hugs,
Nina

Last edited by ninamarc; 06-07-2012 at 11:25 AM.

 
Old 06-07-2012, 11:34 AM   #3
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Re: And now, another wrinkle

She's on Medicare; not Medicaid eligible, as she has a quarter of a mil in the bank as well as a huge property on two lots (!). I'm more than happy to spend that money on her in-home care but, as you say, will it be sufficient? It IS comforting to know there are nurses, NPs, and even a doctor on call there; they bring in x-ray machines for those that need them, draw blood for lab tests, etc. without having to leave the building. She's even eating quite a bit since there's something new to sample at every meal. I can see that there are advantages to her being there but, on the other hand, I will deal with a truckload of guilt if I never bring her home again (the cost of keeping her there on private pay vs. hiring home care is about comparable). I think I'll just take it one day at a time and see how it goes in the new location; if it's awful, I may bolt and run! But if it seems okay, I may try to stick it out for the duration of her remainding Medicare days. I had already resolved to do this ONCE (till PT kicked her out), but perhaps I should again. Leaving her there for the remainder of her days on earth, though, would be hard!

Still, for the most part, she doesn't really seem to know where she is. She'll ask, isn't this home? Or, if I mention going home, she'll ask, where is home? I'm like, sheesh! Of course, she's blind, so I'm sure one place "looks" the same to her as another. I admit I do have reservations about getting her adequate medical care at home, since our intention IS to keep treating her, and having to fix meals just so she can eat a bite or two would be problematic. At present, she gets nothing out of being around other people or the music/programs they present there, but that may change if she continues to improve on Trazadone? I really would like her to leave there on a positive note and not as "a problem case," because it's very handy and convenient and, should she end up back in the hospital and needing rehab again, where could she go if THIS place (which rates only three stars) declines her along with all the five-star places that already have because of her record of disruptive behavior?

Hear the indecision in my voice? On this hand, on the other hand, but on the third hand...

Help!

Last edited by all4mom; 06-07-2012 at 12:00 PM.

 
Old 06-07-2012, 01:22 PM   #4
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Re: And now, another wrinkle

Quote:
Originally Posted by all4mom View Post
I will deal with a truckload of guilt if I never bring her home again (the cost of keeping her there on private pay vs. hiring home care is about comparable). I think I'll just take it one day at a time and see how it goes in the new location; if it's awful, I may bolt and run! But if it seems okay, I may try to stick it out for the duration of her remainding Medicare days. I had already resolved to do this ONCE (till PT kicked her out), but perhaps I should again. Leaving her there for the remainder of her days on earth, though, would be hard!

Hear the indecision in my voice? On this hand, on the other hand, but on the third hand...

Help!
I know your Mom can still talk a lot and she may talk about things that makes you feel guilty. But you are doing the best for her, why feel guilty?
Either way, you are doing the best. Hire more caregivers to sleep in overnight at home or put her in the nursing home is just a choice on how to help her.
It is a matter of caregiving. You are only one person. No way you can do 24 hours. The NH cooks for her or can puree the food and etc. If Mom is alert, she may enjoy the peers later on.
Either way, it is not about guilt. Whatever she needs is the key. If in-home care is best for her, stay home, if NH is better for her medical care, let her stay in the NH.
I know Mom's talk can make you feel guilty. My FIL has stopped talking and now only one words or two. He used to talk with lots of reasoning telling us to care for him and etc. I admit the talk would make you feel annoying and guilty.

I think Deb or anyone here who has the parent in the NH will tell you that it is not about guilt. You are doing the best to care for her, so it does not matter where. Yes you would feel better if you are there when she dies, and you may not be there in the NH when she dies... But you need to think of the why she is in the NH or at your home. Once you understand that she needs the NH if you feel so, you will be relieved that you have made the decision.

Sometimes you also have to look at her angle: Does she want to do this? Would she want this on you if she is normal and sound? What would she want you to do? Maybe she does not like any tubes... It is hard to let go, I know and my husband has this issue now. But whatever you do, it is not the guilt that you should feel. She is sick and needs help and you are doing the best to provide that.

Hugs,
Nina

 
Old 06-07-2012, 01:31 PM   #5
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Re: And now, another wrinkle

Well, as long as Medicare is paying for it, I can justify to myself her using that up -- heaven knows she's paid into it long enough and deserves that!

Beyond that, I'll really have to think about it... My reply to her about the "night guilts" is that I wouldn't be "in bed with her" even if she were at home; I'd be in my own bed and probably yelling at her to go to sleep!

It's just that this whole journey has been arduously taken with the goal being for her to come home again safe and sound ("a romantic notion," as my brother calls it) and certainly to die peacefully at home. But without hospice, there's no guarantee of that, and we definitely want to avoid the hospitals!

At any rate, according to the LATEST count, I have 53 more days to debate it.

 
Old 06-07-2012, 02:47 PM   #6
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Re: And now, another wrinkle

Try looking at it from this perspective - which is really the one you should use. You are not related to her but have legal guardianship. You are charged with doing what is BEST FOR HER. Has nothing to do with your wants, needs, cares, whatever. Only what is best solely for her. What would you do? Because, in the final analysis, it has nothing to do with you and everything to do with her...that is, money and all else being equal.

 
Old 06-07-2012, 03:37 PM   #7
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Re: And now, another wrinkle

Hugs to you, all4mom--I know it's a hard decision to make.

Since you can't really save the Medicare days--if she has another medical issue, the clock starts over again--I would suggest that you take advantage of them now, primarily to let your back heal. You'll be paying for everything soon enough.

But I also understand that the hardest issues aren't the financial ones.

Quote:
I think I'll just take it one day at a time and see how it goes in the new location; if it's awful, I may bolt and run! But if it seems okay, I may try to stick it out for the duration of her remaining Medicare days.
This sounds like a very sensible and reasonable course of action. It also sounds like your Mom is doing much better. I'm so glad the Trazodone seems to be working, and that her infections etc. have cleared up and she's regaining some strength.

As for the guilt(s): You're absolutely right; if she were at home you'd be in your own bed, not sleeping with her. Between you and your brother, you are already spending "every waking hour except in the middle of the night" with her. My God, Woman--what more can you do?!

I know it's easy for me to say you have nothing to feel guilty about, but I also know that because you love her so much, you will find a myriad of things to feel guilty about. It comes with the territory. Try to go easy on yourself.

Love, Kren

 
Old 06-07-2012, 09:16 PM   #8
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Re: And now, another wrinkle

Titchou is right... you need to step back and look at it without the emotions of what you wish and want. What is best for MOM! We all have these preconceived ideas of what we would like to have happen... and it rarely works out that way. I have had to back up myself in the last week and do the same thing.

Kren made an important point as well. Once you take Mom home there is no "saving" medicaid days. It would involve another trip through the hospital and rehab approval to get any more days. So be sure before you move her out that you have everything set up to bring her home successfully.

I am glad that the Trazadone seems to be working for her. When Mom is content everybody is more content! And don't put so much stock in the bad behavior branding. Each placement has a new assessment because things change. A patient that is disruptive at one point in their journey though a disease can be managed well at another point in their journey. Mom was kicked out of one facility and she's very content now...

As for what to do... take your time to make the best decision you can. Focus on what is best for Mom. Where will she get the best care possible. Guilt is reserved for those that intentionally do something to hurt somebody else. You have done nothing but try to find the best possible care for your Mom. There is nothing their to be guilty about. You have wishes and plans that may or may not come true. But if you do what you know is best for Mom then it is ok

Keep debating the pros and cons... write them down!! Give yourself a visual list to assess. Weigh the importance of each point and prioritize them. You might even want to not which are Mom's needs and which are your wishes. Then consider your own well being. You have already pulled a muscle! Yes, you probably can do it all but can you do it maintaining your physical and emotional health? Yes, your well being is as important as Mom's When you get it all in black and white you will see which list weighs the most....

Love, deb

 
Old 06-11-2012, 08:31 AM   #9
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Re: And now, another wrinkle

Thanks, everyone; there sure is a lot of common sense out there in message board land, and also a lot of compassion, which is greatly appreciated!

As it happened, the decision was basically made FOR me. Once they dismissed Mom from rehab, which they seemed in an awfully big hurry to do (she was disturbing and scaring the other residents in the rehab wing... Many were complaining about being unable to sleep at night for her yelling my name over and over), they insisted that she IMMEDIATELY be moved to the long-term section. Not only that, but they moved her to the *crazy people* wing of long-term care! OMG; then it was mom's turn to be scared by other residents! She's blind, remember, and all she could hear around her was moaning, screaming, crying, banging, clapping -- day and night. They even scared ME... Also, the nurses were definitely not on the same level as those in rehab, nor the aides; some of THOSE were downright scary, too! And, finally, I noticed mom's ankles swelling and her lungs sounding a little "wet"; asked the nurse, and she pooh-poohed it. When I took her home -- that move made my mind up in a big hurry -- and read the discharge summary, I could see why: although it noted that she was on cardiologist-imposed fluid restrictions of 1500-1700 ml per day, they had been giving her, then entire time she was there, a total of 2,368 through her PEG! That confirmed in my mind that, although I can't provide GREAT care at home, neither could this place. Brother is pouting and no longer visiting, but Mom is home with me and paid caregivers... I only pray I can find and retain them...

Her notes indicate that she was "combative with staff" (yes; when PT stuck those painful electrodes all over her to "stimulate her muscles," she pushed them away) and "yells out loudly"... Hello, that is how she calls for me when she needs me in the middle of the night. She is blind and has dementia and NO CLUE how to operate a call button... D'oh.

I'm scared to death about this responsibility (in fact, I called the NH the first morning and begged them to take her back, LOL; actually, you have 30 days to use the remaining portion of your MEDICARE days; they refused to take her, and this is just a three-star nursing home), and it'll probably ruin my back for life (bye-bye former hobbies of dancing, biking, kayaking, and hiking), but here we are: "Home again, home again, jiggity-jig!"

Last edited by all4mom; 06-11-2012 at 08:37 AM.

 
Old 06-11-2012, 11:41 AM   #10
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Re: And now, another wrinkle

Your Mom is home with you now? Sorry she could not stay in the NH.
Sure hope things will work out...
Today I got hold of the article about The Long Good Bye in Time Magazine.
The author has an important point there: all his parents' doctors were honest and gentle about the facts of their conditions: about whether it is neccessary to prolong and etc. Certainly it is more about physical health perspective. e.g., his Dad had 2 broken ribs already so DNR (no CPR) so as not to break more ribs... They told him it is better off for Mom to be off the feeding tube so she died an hour later after he fed her some ice cream (they first agreed to remove her tube at an earlier time.)

The other important factor was he put in the feeding tube for his Mom because he wanted to be at her side and his brother was far away and could not participate with such decision yet so they had the tube to hold it there.

I think these 2 factors are really important and realistic. I don't really care for how much money is saved or not saved about this, but I like the honesty in his article.

Anyway, It is still a personal decision about the tubes and end of life care... It is really up to the family.
I sure hope you can still maintain some quality of life for Mom when she is under your home care.

Take care,
Nina

Last edited by ninamarc; 06-11-2012 at 11:49 AM.

 
Old 06-11-2012, 11:50 AM   #11
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Re: And now, another wrinkle

"...his Dad had 2 broken ribs already so DNR (no CPR) so as not to break more ribs..." Um, if the choice is between more broken ribs or DYING (no CPR), it seems broken ribs would be the lesser of the two evils! But that's just me... Already Mom is so much calmer and more coherent; she could simply never adjust to all the noise and chaos, not to mention rough treatment, in the rehab, and neither of us wished to stay in The Snake Pit!

As for the PEG tube, patients CAN eat with it; in fact, they can take their entire nutrition by mouth and just keep the tube flushed with water. At HOME, Mom is able to just wear shifts or bathrobes and there's no more hurting it with a waistband or jerking of clothing.

She is home, as I speak, with a very good caregiver. I'm at work for the first FULL day in months. Life is, um, okay! The tube is working well (I haven't killed her yet with it) and, THANK HEAVENS, has "prolonged" her life long enough for her to again be happy at home.

Last edited by all4mom; 06-11-2012 at 11:51 AM.

 
Old 06-11-2012, 03:47 PM   #12
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Re: And now, another wrinkle

The author's Dad had dementia as well and he was gone without any feeding tube but had stopped eating too (after he knew that the wife was gone.)

My FIL's doctor told my husband that CPR on the Alzheimer's patient is painful and my FIL would not understand. So he has DNR order from my husband. It is very painful to have CPR on your chest. Since the author's Dad fell and broke 2 ribs, CPR would only add more pain to his suffering and would break all his ribs!
This is the pain issue.

I am glad your Mom likes home better. Hope the caregiver is really helpful!

Do you mean the crazy ward for dementia people? Some patients do act funny at times.

Hugs,
Nina

 
Old 06-11-2012, 06:41 PM   #13
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Re: And now, another wrinkle

All, you knew when it was time Yes it is scary to bring someone so dependent home that will be totally dependent on you but that is what you want and therefore what you will do. Have faith in yourself because we will rise to the expectations we have. Every move has an adjustment period for both your loved one and yourself!! Hang in there

As for the lifting, hopefully you know or can learn the proper techniques for moving Mom around. I strongly recommend a visiting PT to teach you if you don't already know. Mom lost her ability to walk (and even stand for the most part) about 10 days ago. I have gotten her up, put her to bed, moved her from one place to another, toileted her... for the last 10 days and all without major back issues. I moved her 11 times today and I am still standing. It is all in the way you do it.

In a way I am glad your Mom is finally home and I hope you both find a new normal that is good for you both

Love, deb

 
Old 06-12-2012, 10:58 AM   #14
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Re: And now, another wrinkle

i am so glad that you were able to enact your plan to bring your Mom home and that things are going well!

I hope that things continue on a calm, even keel for both you and Mom. You can both certainly use the change of pace!

Good luck and I hope things stay nice and calm for her.. and for you!

Quote:
Originally Posted by all4mom View Post
"...his Dad had 2 broken ribs already so DNR (no CPR) so as not to break more ribs..." Um, if the choice is between more broken ribs or DYING (no CPR), it seems broken ribs would be the lesser of the two evils! But that's just me... Already Mom is so much calmer and more coherent; she could simply never adjust to all the noise and chaos, not to mention rough treatment, in the rehab, and neither of us wished to stay in The Snake Pit!

As for the PEG tube, patients CAN eat with it; in fact, they can take their entire nutrition by mouth and just keep the tube flushed with water. At HOME, Mom is able to just wear shifts or bathrobes and there's no more hurting it with a waistband or jerking of clothing.

She is home, as I speak, with a very good caregiver. I'm at work for the first FULL day in months. Life is, um, okay! The tube is working well (I haven't killed her yet with it) and, THANK HEAVENS, has "prolonged" her life long enough for her to again be happy at home.

 
Old 06-13-2012, 09:43 AM   #15
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Re: And now, another wrinkle

I'll add an update in a new thread; this one's getting a bit lengthy! For that, I thank you.

 
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