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I agree. My poor mil had two amputations since January (bed sores and ms related) and had gone through lots of confusion and just gets weaker and weaker. It's paiful to watch. She's on hospice care and is on large amounts of morphine. I feel for her. I wish there was a way to put her out of her misery. My FIL refuses to let her go and is obsessed with finding the next thing that will save her life. It's a horrible thing, getting older.
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With regard to hospice, my brother is of the opinion that when mom is bed bound and can no longer express her wants and needs, that's when we do hospice.
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Hospice was recommended at my last care conference for mom, so I approved and the facility staff had the doctor put the order in. It was taken care of before our 30 minute meeting was over.

The decision was made based on the fact that mom has lost a ton of weight in a short period of time, has almost zero appetite, her pressure sores are not healing, and her cognitive ability is declining.

I have found the hospice team to be amazing. Their goal is to prevent hospitalization and to make every day a good day (as possible) until the end.

They are able to provide better/stronger pain management a whole lot faster than regular facility staff. They give her an extra bath and wash her hair each week. Music therapy comes, pastoral care comes. They can have volunteers come to sit & visit with mom. There's a social worker for me to talk to.

Don't wait too long to call in hospice because they are a great anxiety reducer for the whole family, not just the patient.
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Sandwich, thanks for posting this. Mom is still recuperating from the pneumonia, but still has quite an appetite. She has not gone into the "steep decline " phase that was predicted a year ago by her pulmonologist. I'm hoping that when the decline you describe in your mother occurs in mine, my brother will be in agreement with me. My good thoughts go with you and your mom on this journey.
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So, they did the followup Xray yesterday to check on the pneumonia; both the pneumonia and the pleural effusion are worse, according to the report. The NH is going to try another round of two oral antibiotics. If these don't work, my brother wants her transported to the hospital for further treatment.
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Babalou, thanks for the update. Do you think she should be in the hospital now? She could get x-rays daily and perhaps more treatment, such as respiratory treatment to clear her airways, if that's not being given now.

Has any of the fluid from the effusion been drained off?

Sounds like this is a difficult waiting time for your family; I'm hoping it gets better though, for everyone involved.
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She's completely asymptomatic. So we're trying in house antibiotics first.
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I'm sorry for your suffering.
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Hope the antibiotics work!
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These bodies are not meant t o last forever. Mom wants to live, from the sounds of it.Falling is no good, not matter how soft it is. Blood tests were done, how about urine test? Presumably no UTI there.Get her whatever she want to eat.. a little canot hurt.
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GA, mom has had several throcenteses, last one was last summer. They did it in the er, her lung, which had been compressed by the fluid reinflated, which allowed a small pocket of bacteria in the lung to bloom. This sent her into septic shick. She was in the hospital for about 10 days.

she had a followup xray which was sent to the treating pulmonologist. He called me and said "I don't think we should put any more holes in your mom. There will probably be one more hospitalization and then a sharp decline". (This is someone who's dad died of chf, just like mom has). So I'm not eager to do another tap unless she gets uncomfortable. Right now, she's not short of breath or feeling pressure and she's not coughing. So right now, we're leaving well enough alone and hoping the antibiotics will get to the infection.
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Babalou, thanks for that information. I understand the situation better now. Seems like what could have been part of a cure was actually worse than the situation itself last summer.
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GA, the interesting thing about last summer, they took her to the ER because she fell at the NH, trying to get out of the bathroom without assistance. The effusion had been an ongoing thing that had been pretty stable. But when they looked at in in the ER, they thought it looked worse, so they set up a tap. And then, well, you know the rest. We really do seem to have gotten to the point where we can't fix one thing without breaking something else.

But mom seems chipper and comfortable. But according to my sil, who saw her tonight, uncharacteristically confused about who a card was from. So we'll see how this plays out.
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Babalou, I haven't seen any updates on this thread for a few days and was wondering how your mother is.
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Just got back from the long trek. She's doing okay. They won know if the antibiotics have actually done anything till they do another xray, after the meds are done. She's totally asymptotic, which is nice. She noticed a new mole on the side of her nose that I saw a couple of weeks ago, but given what was going on, we didn't do anything. We'll have the visiting dermatologist take a look at it, as I wasn't successful saying that the doctor was "keeping an eye on it". The fact that she's still noticing this stuff is overall a good sign I think.

My brother and I are both leaving for vacation at the end of next week. That should be interesting (he's going to Spain;I'll be in Massachusetts). We always try to coordinate, it doesn't always work!
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Babablou, it took a lot of courage to say how you felt. I too believe there is a hugh difference between living and existing. I pray your mom does not have to bare to much more. You are a wonderful person for seeing her through all of this.
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A new wrinkle. Mom's second bout of pneumonia has left her rather weak, but she noticed a new mark on her face the other day. I had noticed it back in the Spring, but didn't really think too much about it and then mom got very sick and we were talking about Hospice. Well, mom noticed it and wanted something done. The dermatologist who comes to the facility looked at it last night and wants to biopsy it. In his office. So we're scheduled for ambulette and aide for August 31st. One step at a time.
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There seem to be a variety of twists and turns along this not very smooth road you've had to travel. I hope this latest twist leads back to a smoother path. I'm also hoping the biopsy is negative, and will be thinking about you and your mother until we get another update.

Best wishes.
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I'm not one for ignoring things you wouldn't ignore in a younger person, but… is this a sinister looking new mark, do you think? [nasty suspicious mind wondering if it's more like a contribution to the Dermatologists' Benevolent Society pension fund..?]

Still, if it puts her mind at rest and she wants it attended to that'll be worth the trip on its own. Hope it goes smoothly and turns out unproblematic.
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CM, i first noticed this mark in May and i was determined to ignore it. In July we were talking about Hospice, if you recall. My sil was all for doing something at the time ( her mom died of melanoma) but my brother and i decided to wait and see. We agreed if mom noticed aNd wanted something done, we'd reconsider. Well, mom noticed AND it appears to have changed a bit so it qualifies according to the abcde system (evolving) as something needs tending
And mom's had melanoma once on the past, as did one of her brothers. From what uve read, melanomas increase with age, in part because they arise as the immune system slows down. My mom was a medical secretary to a group of cancer surgeons at Memorial Hospital in the 1930-40s and so knows enough to be really worried about stuff like this. Unfortunately, her knowlege is based on sccience that is 75 years old and is being filtered through a very damaged brain. So we'll get the biopsy and go from there. Thanks for listening.

To confess, I AM in favor of ignoring things that we're not going to treat (no none marrow buopsy 3 years ago. They found a couple of atypical cells in mom's pleural effusion). But this is something that may be easily cured by removal, and to ignore it is to worry mom.
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Oh, this is too cute. Just visited mom who managed to stammer", i think I'm handling this very well."
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Babalou....."out of the mouths of babes ....and elders". Sometimes their innocent remarks are so precious.

My mother used to comment when we were preparing strawberries for eating that some of them liked to sit down instead of standing up. It was so spontaneous, and so sweet.
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So, the biopsy was yesterday. Dermatologist did a punch and took out the whole asymmetrical, evolving thing. (Asymmetrical and Evolving are part of the ABC DE classification of skin growths, both should make you suspicious). Two stitches, lots of blood. Doc told us that he'd have the results on Friday at best, next week more likely. So, with mom sitting with aide in the waiting room after, I called my brother on my cell phone and went outside the office to get better reception. My sil called me just now to say that mom "knows" we know and are keeping the results from her.

Let me rant for a sec. My mother is, and always has been, the worst awful in er on the planet. She worries to death any minor symptom before, during and after diagnosis. It makes insane. What's sadder still is that, while the doc was cutting, I stood behind her and held her. And I thought, my mother never did this foe me. I don't recall any medical or other procedure during my childhood where she reached out and touched. I was told to "offer it up".

And some lady on this forum wants to know why my mom, with dementia yet, doesn't live with me (well, not really, it's more complex than that)? Because there was no milk of human kindness in my childhood directed at me. Not feeling very good about my mean- spiritedness at all, but it is what it is.
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Awfulizer. A person who makes things awful when they are not, yet.
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Babalou, just to take your mind off it you've reminded me of getting a biopsy done on my then five year old daughter - both her father and I attended to give encouragement. All was well, ish, until the actual cutting and cautery at which point she said "what's that terrible smell?" I think I did blurt out "er, it's your head burning" - I'm sure her therapist would be able to quote the exact phrase.

I know what you mean, though, about the bitterness you can't help feeling, and you really can't help it. I remember my mother very firmly putting me off her knee (I think she was reading, so fair enough) but I don't remember ever trying to climb up again. Hugs R Not Them.

Still, you do provide comfort because it's the right thing to do, no? What else can you do?
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Thanks for all the encouragement. I resisted doing the mad drive up there today. To quote my brother "hey, she's worrier". I wish that my world view was more like his
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Glad the biopsy is done and hopefully the results will be available Friday. It's awful and very unsettling to wait for pathology results - all the wondering and worrying.

I hope you and your family are able to have some peaceful days as you await the results.
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You know, it's funny. When my second child was a baby, she was tested gor cystic fibrosis. I was hystericsl. I called my mother in law (because i couldn't call MY mother, she'd go off the deep end). My mil said to me "Barbara, there's no sense worrying begore you find outvyhst she's actually got this. How you will react snd vo p e once you know gor sure is very different ftom whst you think when it's an "if this is". She was do right. To this dsy, i sm able (okay, with a lot of therapy ) to put off the eorry of my own biopsies, mris and cardisc test sr
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So, called the dermatologist office today at noon or so. They said biopsy results are in and that doc will call me later. I'm assuming he leaves these calls for late in the day ( I know I do). So still hanging on. Not telling siblings or mom that results are in but not known. Trying to manage information . Listening to an amazing book on CD about the Plantagenats . you all need to hear this book.
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Fingers crossed that the biopsy results are good.

I remember watching a PBS drama on the Plantagenets years and years ago. It was historical as well as social, addressing the draconian practices preventing women from equal status to manage their own finances. While fascinating, it's also hard to repress anger at the way women were treated by society during these early centuries.
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