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My mom is 91. She has CHF. In 2013, stroke with sequelae of vascular dementia, some aphasia. Broken hip in Aug 2013, walks with a walker. In nh since sept 2013. Fell in June; while in hospital, heart rate could not be maintained, so we asked her if she'd agree to a pacemaker and she said yes. Since then, she's had an almost constant pneumonia/pleural effusion. Several rounds of antibiotics did not clear the pneumonia. She fell on thursday at the nh; in the er, her o2 sat dropped and they wanted to intubate. She has a dnr and dni.She was put on a bi-pap. They tapped her chest and got a litre and a half of fluid which came back okay from culture, still waiting path report. Had sepsis with a white count of 19000. Better ttodat 13,500. She has a compression fracture of her spine (one doc says old, one doc says new). In addition to her bp and heart meds she's on antidepressants and anti anxiety meds. And now morphine qid for pain plus lidocaine pain. Her legs are contracted because she hasn't been walking much at nh due to shortness of breath (due to pleural effusion). When do you say enough and stop transporting to hospital? Sorry if I'm rambling, I haven't had a lot of sleep! A couple of weeks ago my brother and I asked th he hospice question of the nh folks at our care meeting...they seemed shocked.

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Oh babalou, the NH is just keeping her alive so they don't have report a death after a fall. Call Hospice yourself, because they won't. It IS time. It is the hardest decision you make. Damn them and damn their pacemaker! Set her free from all the pain they inflict!!
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ba8alou, I think you are right. It is time to call in hospice. I waited too long with my father. The people at the hospital had me running around like a crazy person looking for accommodations for my father. I knew it was crazy, because he was dying. Finally I said that I wanted to call in hospice and everything changed like I'd thrown a switch. The bad thing is that my father died that day, so hospice arrived just minutes after he died. He had much pain that they could have helped him with. Hospitals are reluctant to aggressively treat pain due to drug-use guidelines. If I had it to do over, I would have called in hospice 2 months before I did. Some of us wait to late and it can cause extra suffering.
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Dear guys, I love you all so much! I was against the pacemaker, but because we were politely disagreeing, we decided to ask Mom, who wanted it. ( HEY, she made my brother, the softie, her poa for a reason! She raised me to be coldly clinical). Thank you for the suggestion to call Hospice myself...at some point, between the sleep deprivation and trying to get the pharmacy at the hospital to agree to taking the package of specially compounded pediatric dosage of klonopin that you've sent your brother 2 hours each way to pick up...and trying to decipher what she means when she's yelling that someone said "indefinite invitation" to her and it means that some we don't know wants to take her somewhere...Well, you get the idea. I think I'm going to sleep now.
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I started to tell you the long story of mom, but I deleted it. Suffice to say, you have done more for your mom than I will probably do for mine. I am an only. I love my mom to bits and pieces.

I formally put her on palliative care a month ago. (Really, she's been on that for quite some time since I've turned down many procedures and tests for her over the last two years.)

In my opinion, from what you've said here, it's time to ask her doctor if he thinks it's appropriate and go with his recommendation. I think we both have a good idea what he'll say...

I'm sorry, Ba8alou.
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I asked for the Palliative Care team to evaluate mom, which they will do tomorrow. She's still in hospital, now on regular oxygen, still very weak. And because timing is everything, my poor brother and his family are scheduled to leave on a very rare vacation on Thursday. Whatever we decide, I'm not going to do anything to ruin that. Now if only our youngest brother would call us back.....thanks again to you all.

And Bob, yes, maybe NH is jail. But if my mom were in my 900 sq ft apt in Brooklyn with hubby and me, she wouldn't be able to leave THAT either. As I've posted elsewhere, my grandma lived with us for many years after a broken hip and eventually died of gangrene, after pneumonia, being bedridden, poor circulation, etc. We made a very conscious choice to have mom cared for by professionals and it's been what it's been...better than everyone resenting grandma. Better that mom has autonomy to make choices about meals, when and how she gets bathed, activities when she wants to go. And when yesterday she thought her toe was gangrenous, I pulled in a wound care specialist to say it wasn't. That was a good feeling.
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((((((ba8alou))))) I agree with the others. There comes a time... I hope her doc is supportive. She does not have much quality of life. Take care of you.
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a nearly comatose old lady in ednas NH today would let out a loud howl every now and then . the nurses chatter indicated that family had ordered treatment for recurring infections halted and infection was spreading thru her body . this is a rehab AND hospice facility so im sure the gal is being kept as comfortable as possible . the only thing that troubled me is they still drag people in this condition to the lunchroom in wheelchairs every meal time . its for the benefit of the NH . meal times are the big events of the day that require everything the staff can muster . they dont have the manpower to babysit individuals in different locations so they drag them to the cafeteria .
NH is jail . it might be the only care available for most people and the best care available but its still jail if you cant leave ..
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Captain you are right it is jail and that makes me sad. That is why I struggle so to make the "jail" better. She never expected to be there and has told me many times she worked too hard to be placed there. I hate it, but it got to the point that it had to be done. It eased the load for me some, but the quilt is overwhelming sometimes. What keeps it at bay is knowing she is getting the medical care I couldn't provide any longer. Getting old is not for the weak.
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hope i didnt come off as condemning . i see a lot of people at NH that are clearly candidates for round the clock professional care . the staff are swamped . imagine 8 adults caring for 80 infants . i think we can definately make NH better with our outside support . staff does not have time to take elders outside or listen to their intimate concerns .
i try to be an asset to NH staff when im there . they are in charge , i just want to contribute in small ways .
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I just wanted to say you are not alone. My father is going through something very similar. I will post it separately so as not to take attention off of you. believe in yourself. You are not alone.
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