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My mother is really ill and seems to just be 'floating'.

To explain: She had some abdominal issues that got out of hand, resulting in sepsis and surgery.  In the month since surgery, she hasn't eaten.    She originally went to a rehabilitation center after surgery, but with no eating, there's no energy available to spend on rehabbing.  Her mind is pretty sharp most days while her body has withered.  She's back to the hospital now and getting IV nutrition and undergoing tests everyday...

It has me questioning - what is life?  Where's the line between life and...not life?

I visit and talk to her...and the doctors are searching for a solution.  It just feels like a cycle that we can't figure out how to break.   A bit of eaten food would maybe give her a bit of energy, which would give her some ability to rehab a little bit, even if just lifting her legs.  In turn, that might stimulate some more hunger and the cycle would improve every day.  It's like we're stuck on the shoulder of freeway, watching all the other cars wiz by when all we need is a spark to turn the engine the first time.

At what point does a person decide that they're on the exit ramp, not the shoulder?

I'm not the hard core foodie some of you are and I've never wanted a person to eat - just a bite or two - like this before.  This life in limbo, represented by the lack of eating, seems awful.  You all seem to have every food answer.   I could use one now!

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I have no answers for you.  You have my deepest sympathy.  Nothing is harder than watching a loved one go through something like this.  I hope she finds an easy path out of limbo, and soon.

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I'm going to give you practical advice instead of sympathy (although I promise you that you have all my sympathy as well).

Have you talked with your doctors about Hospice care? That would be the first phone call I make tomorrow - to Hospice. Come right out and ask them, "Do we need you, or not?" They will give you the answers you need, better than any of us can.

Do that tomorrow, and let us know what's going on. It's impossible to know from what you typed whether this is an acute situation that will improve, or a catastrophic incident that won't. You've got to get professional advice, and that (in my opinion) does *not* mean medical advice from a physician; it means advice from a Hospice nurse. That said, there is a mutual respect there, and they usually work together at first.

Hopefully, you'll hear that you're still on the shoulder; my impression is that when you're on the exit ramp, you often know.

Stephen Hawking is very much alive; advanced Alzheimer's patients, less so. Self-identity is a major criterion in my book. People survive for many months on TPN. Does your mom want to keep trying? There comes a time to let go - I learned that the hard way, by doing the wrong things. I realized later, and wish to this day that I had helped Karen along earlier than I did, instead of trying to pull her back into the "life of the living." She needed my help in her journey, and I was too selfish to see that (maybe not "selfish" so much as "ignorant") - Hospice answers ALL these questions with compassion and care; physicians' jobs are to keep people alive, usually - some wise oncologists know when to let go, as painful as that may be. Your mom sounds like she is *not* at that stage, but I really don't know.

Make the call, and write me privately if you need help. But PLEASE MAKE THE CALL AND GET HELP.

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Excellent advice and last night she was moved from the hospital to a rehab center. Her sister is a nurse, and her sister-in-law a hospice nurse; they've weighed in. We're in good hands and you were right.

I'm glad you said that TPN could go on for many months if necessary- it wasn't until I read that that I realized my fear was probably there: that she'd just fade away in 3 weeks on TPN. Either she'll eat--or they'll figure out why she can't, or neither happens - and she can survive all it. She might not...but hey, we're all going to die someday.

We're also getting second opinions on the stomach issues, though I suspect that using time (as in, let's see how this works, now let's see how this other thing works) is best in the long run. It's just so damn hard to see her there and not want to FIX IT. NOW.

Thanks Don and Mr(s) Porcupine.

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I understand.  My grandma has been suffering from dementia for the better part of a decade now; the last time she called me something verbally she called me "Smartypants."  :rolleyes:

She is so stubborn she seems to outwit the hospice care.

One of the best things my mom and I did before she really went downhill was get her a fish fry dinner, because in the St. Louis area they take those seriously during Lent.  We got the fish fry from a Schnucks grocery store nearby.  She loved it.

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Always hard, and a situation I know is in my future.  I try to give Grandma as many experiences as I can while she still can and hope that some will stick in the memory for when she can't go experience things anymore.l 

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So, about three weeks after I posted above, my mother passed away.   She went from swimming at a July 4th party with us to gone by Thanksgiving.

This isn't news to anyone: death sucks pretty much any way you slice it and I'm sure we've all experienced it.   Here, I've experienced for the first time the frustration that comes with not having answers.  I don't wish that on anyone.

Ultimately, my mother died from diverticulitis.  Internal Inflammation.  From what I can tell, that's not really supposed to happen, any more than you should die from a cut on your foot.  But it happens I guess.

My mother wasn't particularly old (just turned 70) and was active and thin.  But...she didn't eat much but meat and potatoes - no veggies, no fruits - ever.  And she wasn't one to complain much - she didn't like going to the doctor unless something was 'broken'.   The combination turned out to be deadly.  The diverticulitis (common in older folks) is thought to be caused by a lack of dietary fiber.  And she suffered for months with stomach aches, not saying anything.  By the time we began to take action - it was too late to take action.

In the last few weeks we discussed this with hospice folks while we kept up an aggressive approach - this wasn't cancer, this wasn't supposed to be terminal.  I guess if we knew 3 weeks out that there was NO chance, then hospice would have been a more dignified exit.  We kept throwing dice to the end.

I hate indecision.  I hate not knowing what's going on or what to do.  My father's cancer was much more definitive - he chose his exit and it was peaceful; we may not have liked it but we were confident in our choices.  This was not.

So I still do not have an answer to my original question, what is life?   In fact, I believe I know less about the topic today than when I originally asked.

Maybe that means I'm closer to my answer.

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I wrote Jay privately, but wanted to express a public tribute to his mom, from all of us.

Jay, I cannot tell you how sorry I am that this happened.

Remember that Hospice offers free bereavement services for surviving family members - do not hesitate to use it. When my wife passed away, it helped pull me through - the counselors are just as wonderful as the nurses.

On the optimistic chance that anyone is looking for a charity, please consider Hospice-care organizations. If you write me privately, I will give you some references where you can begin your search, as well as some practical advice based on personal experience. Few professions are more psychologically demanding than being a Hospice Nurse or Bereavement Counselor; unlike some of these people you pay $130 an hour to see, they don't charge anything, and they actually care instead of forgetting things when you walk out of their office. The only problem with Hospice is that they deal exclusively with end-of-life, and the terrible issues that surround it including the aftermath's terrible effect on survivors - they don't just "stop" the moment someone passes away; they keep working with the survivors.

I know of one other non-Hospice organization that is usually covered by health insurance - if anyone is going through an exceedingly difficult time in life, this would be the place to call - they take CareFirst, and you'd probably just need to pay a co-payment with each visit. I cannot imagine a better non-Hospice organization for those who are suffering, either because of someone else's death, or because of various other life-threatening mental issues - unless you're in dire straits, do not call this organization, as they only accept the worst-of-the-worst (but they *will* make room for you if you qualify for that sad moniker). For example, I referred a restaurateur there once who was going through the worst thing in the world, and it helped to ease his suffering - one day he sent me a text message from the office of the social worker I referred him to, and this made me indescribably happy. This is another organization that survives on scraps, and deserves to be well-funded - if you're considering a charity, what better organization is there than one that deals directly with the worst kinds of suffering imaginable? Again, just write me - it's easy enough to find my email address (go to my other website), or send me a PM here. I keep hoping that *someone*, when they pass, will leave their estate to this organization - maybe it happens from time-to-time, and that's as it should be.

I just resolved to contact the two people I know from both these organizations, and see what the best ways are for people to donate. The one-word answer, "cash," is *always* the best answer and the most-critical resource that there's always a shortage of, but there are other ways to help as well. If you were to choose only one organization to support for the rest of your lives, either one of these would be a near-perfect use of your funds. I've seen what goes on, in both places, first-hand, and without getting into any type of religion, these organizations are doing "God's work," and I say that in a strictly humanist sense; both are non-religious and most certainly non-denominational - they exist exclusively to help *anyone* in the most desperate types of need there are. When you're at the end of your rope, you'll need their help; when you're healthy and productive, they absolutely need yours.

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I have been thinking about this alot lately.  To this point I am very lucky, but I know that luck can change at any time.  About 5 months ago, my mom felt a pain in her stomach.  It was bad enough that she called to cancel dinner plans at my house.  If you know my mom, this was more than just some pain because seeing her granddaughter is one of her joys of life.  I know that Brooke makes my mom feel younger and energized.  I talked to my mom and told her she should go to the hospital.  She was hesitant and told me that she was going to the doctor on Monday (cardiologist).  My response was "it doesn't matter if you are seeing the cardiologist tomorrow if you have a heart attack today".  This was enough to convince her to go to the hospital.

After a battery of tests, they gave her a cat scan which revealed a small mass at the junction of the bile duct and pancreas.  This tiny tumor was pressing on the bile duct and causing the pain.  What is fortunate is that just 6 months prior she had a cat scan and there was no tumor.  She caught her cancer at the very early stages.  Since then, she has undergone a treatment protocol from Johns Hopkins (truly a world class organization) of chemo/radiation, culminated by a whipple procedure last week.  My mom is resting now, the doctors think she is cancer free (we are waiting on final pathology).

I wrote about this in the Attman's thread, but on Saturday on the way to the hospital, my sister and I stopped at Attman's to grab dinner.  We took it with us to the hospital.  We made it to my mom's room and she told us to sit and eat in her room.  We sat and I unwrapped the sandwich put the paper on my lap and began to eat.  We sat there with my mom smiling, her voice back, telling stories, jokes, laughing and having a generally good time.  It was the best meal I ever had.  It wasn't fancy, but at that moment, it dawned on me.  What makes a great meal is not the food, it is the company.  I would have paid any price for that meal, and the memory will be with me forever.

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On 6/20/2016 at 9:44 AM, pras said:

I have been thinking about this alot lately.  To this point I am very lucky, but I know that luck can change at any time.  About 5 months ago, my mom felt a pain in her stomach.  It was bad enough that she called to cancel dinner plans at my house.  If you know my mom, this was more than just some pain because seeing her granddaughter is one of her joys of life.  I know that Brooke makes my mom feel younger and energized.  I talked to my mom and told her she should go to the hospital.  She was hesitant and told me that she was going to the doctor on Monday (cardiologist).  My response was "it doesn't matter if you are seeing the cardiologist tomorrow if you have a heart attack today".  This was enough to convince her to go to the hospital.

After a battery of tests, they gave her a cat scan which revealed a small mass at the junction of the bile duct and pancreas.  This tiny tumor was pressing on the bile duct and causing the pain.  What is fortunate is that just 6 months prior she had a cat scan and there was no tumor.  She caught her cancer at the very early stages.  Since then, she has undergone a treatment protocol from Johns Hopkins (truly a world class organization) of chemo/radiation, culminated by a whipple procedure last week.  My mom is resting now, the doctors think she is cancer free (we are waiting on final pathology).

I wrote about this in the Attman's thread, but on Saturday on the way to the hospital, my sister and I stopped at Attman's to grab dinner.  We took it with us to the hospital.  We made it to my mom's room and she told us to sit and eat in her room.  We sat and I unwrapped the sandwich put the paper on my lap and began to eat.  We sat there with my mom smiling, her voice back, telling stories, jokes, laughing and having a generally good time.  It was the best meal I ever had.  It wasn't fancy, but at that moment, it dawned on me.  What makes a great meal is not the food, it is the company.  I would have paid any price for that meal, and the memory will be with me forever.

I was wondering if you were going to post here. It is *so nice* you got a chance to have that meal with your mom.

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Life is all about memories.  I will never forget after my Dad's funeral- my intimate part of my family (my Dad was married several times I have a lot of family) went to Uno's in Garrett County.  It was the dead of winter in 2010 when Garrett County had so much snow the deer were almost buried, the snow fell constantly the whole weekend.  You couldn't see that there was even a lake, it looked like just a huge open space of snow that people had put bridges over for no apparent reason.  We were all tired and emotionally exhausted and just wanted to eat and go home and crawl under a blanket.  Some of my extended family was having a big meal at one of their houses, and I just couldn't do it, it was just too much, especially with all my in laws and etc.  I think there were 10 or 12 of us.  The manager at that time was a friend from high school.  When he saw us enter he took us downstairs, normally they only use that space for private events or when they are really busy in the summer where it was just us and we could have some quiet family time.  At the end of the meal they very politely said we didn't owe any money and they wouldn't accept any money.  That was a really gracious act, and I never forget the grace of my friend in that act.  I am sure he has no idea how often I remember that kindness.  Life is a string of acts of kindness that stick into our minds from our parents, family, friends, teachers and strangers.  The lack thereof can have profound negative effects on us.

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What is life? My daughter graduated from college, and the following weekend, my dad celebrated his 90th birthday, surrounded by his children, grandchildren and great-grandchildren. Seeing her at the onset of adult life, and him near the end, has prompted me to reflect on the years in between.

What is life? My answer may sound trite, but it is what I believe. Life is love. The love a parent feels for a child. Romantic love. The love of a friend who would do anything for you. Passion, kindness, respect and gratitude all stem from love. For me, love is what makes life worth living.

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I wrote before about my mom's cancer treatments earlier.  She has had her surgery and finished chemo and radiation.  The news has been positive but there is always a twist.  Although the final pathology, showed that there are no cancer cells in her pancreas, stomach, or intestines, one of 14 lymph nodes showed some cancer cells.  This is mostly positive and good news, except, the reality still exists--my mom has cancer.  I don't know if this pathology is better than cancer free--part of me thinks that if 14 of 14 were free of caner, the 15th could be positive and we would never know.  Her local oncologist thinks that she should not treat any further, and should just monitor her health, with screenings every three months, but he wold defer to the doctors at Hopkins which created my mom's treatment plan.

What does all of this mean?  It is positive, but it's qualified.  Life is fragile, but it is also very resilient.  My mom has been a true fighter, and has taken on the challenge like a heavyweight champion boxer.  I hope she keeps fighting and puts this wretched disease in its place.

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On 7/15/2016 at 11:09 PM, pras said:

I wrote before about my mom's cancer treatments earlier.  She has had her surgery and finished chemo and radiation.  The news has been positive but there is always a twist.  Although the final pathology, showed that there are no cancer cells in her pancreas, stomach, or intestines, one of 14 lymph nodes showed some cancer cells.  This is mostly positive and good news, except, the reality still exists--my mom has cancer.  I don't know if this pathology is better than cancer free--part of me thinks that if 14 of 14 were free of caner, the 15th could be positive and we would never know.  Her local oncologist thinks that she should not treat any further, and should just monitor her health, with screenings every three months, but he wold defer to the doctors at Hopkins which created my mom's treatment plan.

What does all of this mean?  It is positive, but it's qualified.  Life is fragile, but it is also very resilient.  My mom has been a true fighter, and has taken on the challenge like a heavyweight champion boxer.  I hope she keeps fighting and puts this wretched disease in its place.

Get a second opinion on the biopsy. I'd love to say more, except I'm rushed right now, plus I'm no doctor.

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I wanted to bump this thread in case anyone has a loved one who is seriously ill. 

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Kat - my "heart" was to send love, not to "like" this post.

 <heart>

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On 7/6/2020 at 2:01 PM, Bart said:

Kat - my "heart" was to send love, not to "like" this post.

 <heart>

Thank you. 
My Aunt was the one who introduced me to the great DMV. She is a fighter, but her body is not. Please keep my family in your thoughts. 

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Gee, I just re-read this post (which I wrote 3 1/2 years ago), and I think it's somehow related to this thread - but I'm not quite sure how.

However, I suspect that in terms of defining "the meaning of life," it's about as close as anyone will ever get.

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On 7/5/2020 at 4:36 AM, curiouskitkatt said:

My Aunt. 

please add her in your thoughts & faith.

My Aunt suffered a heart attack tonight. Her condition is stable and she is being closely monitored in ICU, but I fear she doesn't have much left in her to fight. I wish I could tell her its okay to let go. I don’t want to suffer any more. Please pray for my family to accept whatever may happen. 

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17 hours ago, curiouskitkatt said:

Please pray for my family

I'm sorry. I hope everything goes as well as possible for all concerned.

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My aunt went on life support at 3pm today due to complications of Dialysis. She went to sleep & went home to be with my Late Grandpa & Grandma. She did not suffer. Her pain has come to am end. Thank you everyone for your thoughts & messages. 

In Asian culture we do mourn the death of family, but we also celebrate the good life they had. I will grieve the loss of the ability to visit my Auntie in the flesh, but I know in my heart she will be side by side with my grandparents & will continue to protect & guide me. 

Rest easy, 

kat

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I'm so sorry for the loss of your auntie. It sounds like she had a very gentle leave taking and I'm happy for that. My thoughts are with you.

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3 hours ago, susan said:

I'm so sorry for the loss of your auntie. It sounds like she had a very gentle leave taking and I'm happy for that. My thoughts are with you.

Thank you for your kind words.

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