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Mom went into the hospital last night for unbearable pain. Her pain doctor was sure she had another fracture, but so far they haven't found one. They did a procedure today to clear out some of the scar tissue in her spine, and tonight she said to me, "I don't want to live like this. This isn't how I wanted to go out". How do you respond to that? I've often wondered why she would want to live with the awful pain she had, but she still seemed to get some pleasure in life. Now, I think, she has reached the point that she doesn't. What now? When your bones are literally disintegrating inside you, no amount of pain medication can keep you comfortable. Any suggestions or words of wisdom?

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Ferris1 - I will definitely suggest that.
pstegman - Chemo? Mom doesn't have cancer. Right now, in the hospital, she is getting dilaudid every 3 hours. I think she is blocked too. She's only passed a small amount of stool.
Mom has an excellent pain management doctor. He is the one that insisted she be admitted to the hospital to get her pain level under control when things went south for her this past week. He understands Mom's reluctance to overuse narcotic medications, and knows that when she says she's hurting, she is hurting, not drug seeking. She's a tough lady, and doesn't complain or whine. If you hear a grunt or a whimper from her, it's something that would get a scream out of someone else. When Mom fell and broke her hip, the paramedics that came out told me they didn't think it was broken because "if it was broken she would be screaming". I told them they didn't know my Mom. I was right. I knew that it was broken because she wasn't getting up. This past week my Mom cried in pain, whether she knew I was there or not. She's never done that before. I'm very grateful that we have a pain management doctor that knows my Mom well enough to know that when she does that, she needs to go in the hospital. Period. End of discussion.
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This might be a really dumb question, or one asked by someone else (and you've answered), but have they checked her for bladder issues or urinary tract problems? My grandmother was in and out of hospital emergency rooms four times over the past year and finally now, we know what it was- she has a bit of a prolapsed bladder, so sometimes she doesn't void correctly, yielding bladder stones and UTIs. We're going through that now again. They're the devil.
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My gut feeling is she is blocked, it would explain the pain , the vomiting and the seizure activity. My prayers are with you, it's a roller coaster ride ahead. Ask for Hospice, that way she gets the best pain killers. And if she doesn't want chemo, support her decision.
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Oh, I forgot to add, my spine doctors at Desert Institute for Spine Care (DISC) are the consulting doctors for the AZ Diamondbacks, Dodgers, Reds, the Rattlers, Phoenix Suns, and me! I was an athlete in my younger days...
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Since I have degenerating discs and bones in my lower back, my spine surgeon invented a minimally invasive procedure that eliminates all pain to the back by cutting the dorsal ramus nerve that innervates pain signals up the spine. First one has some numbing injections (6 to numb) (6 to inject the numbing solution) using the x-ray of the back while inserting said needles while you are lying on your stomach. After the procedure which takes a little over 20 mins., I was able to drink some liquid, stand and drove myself home. No pain. Two of these series are required by the FDA and if they work, then the real surgery can be performed which will be permanent. So check with the spine doctor about Dr. Anthony Yeung's procedure, it is FDA approved and minimally invasive. There is hope for your mother and many others!
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My heart goes out to you, it's hard to hear a loved one feel and speak defeated. Since we want nothing more than for them to be happy. Pallitive care is an option rather than Hospice, it may enable her to have home health and physical therapy since it would prevent her from digressing and provide pain management care.
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I would just like to reinforce the advice to consult with hospice. Having hospice is never giving up. It is giving the patient the best quality of life available. You do not sign your life away if you get better you do not have to continue to be their patient. if you mother is not a surgical candidate with hospice you can shoose and i stress choose to take her home. Hospice can be much more liberal with pain medication than is usual in the hospital setting and they will be available to support you 24/7
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Is mom throwing up? If she is, that isn't depression and I don't understand what it has to do with her back. That sounds like a stomach or bowel issue...
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I meant to say that, even if she starts to feel better, that she still might NOT be able to concentrate on the Nook, even though that isn't what I typed.

My point was that books might be something she could still enjoy, might help distract her a little. It's something to try.
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If her pain lessens enough to concentrate a little, maybe books-on-CD would be an option. If she starts feeling better, she still might be able to concentrate on reading the Nook, but something in a type of book she likes might be nice to listen to. My suggestion would be to pick something that doesn't require lots of concentration or can be listened-to in short increments, maybe a few pages or a chapter at a time.
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So sorry for you! my mum has dementia,high BP,High cholesterol,diabetes shes only 76yrs but im am glad that so far no pains or falls seeing your parent in pain and be able to do nothing is very hard. Hugs to you sounds like shes had a terrible time it dosnt seem fair, if only our parents could all just die peacefully in thier sleep at a good old age lifes cruel sometimes.
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She may not be diagnosed but I would still ask for a hospice review for comfort care. Can't hurt to have an evaluation and you never know. I'm sorry this is so hard. Hugs
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She went in for a consult for surgery after her last GI bleed, and they told her she was not a good candidate for surgery, so unless it's an emergency, I doubt they will do surgery on her. They flat out told her they didn't know if she would survive it - she went to 2 different surgeons and couldn't find one to operate on her - that was in October. Not like she was in a rush. We appreciated the honesty. Now it looks like there might not be a choice if they can't get her unblocked.
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Mom has been on Cymbalta for some time, not as an anti-depressant, but to help with pain relief. Her diagnosis is not complete - they would like to give her an MRI, but can't, due to the implanted stimulator in her spine. She has had a 4 level fusion and has one of the worst cases of osteoporosis and arthritis and "failed" back surgeries that the neurosurgeons have seen. Believe me, Captain, Mom is normally a very optomistic, cheerful woman who deals well with the pain she has on a day by day basis. This is WAY out of the ordinary for her. This is a new pain, not her ordinary pain. It's in a different place, it was sudden in onset (her doctor was sure she had a compression fracture - my father broke his back just sitting on the side of the bed), but it hasn't shown yet. It may still be a stress fracture, which may need contrast dye to show up with a CT scan, or, as the doctors believe, it may be that she is impacted and that is causing her pain and now, vomiting. I don't think depression would cause vomiting. Whatever it is, something is going on.
I'm not ready to call in hospice until we get a diagnosis. I don't want Mom to get the idea that we're giving up on her. I'm not ready to give up on her.
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It sounds like a colon issue with the throwing up, etc., and not primarily a back problem. My sister-in-law has had repeated surgeries to remove parts of her colon and at the present is back in screaming pain that pain meds cannot touch. They are deciding whether or not they can even do another surgery or that she would survive. My mom is 91 and has dementia from normal pressure hydrocephalus. She recently had a bleeding ulcer so they had to take her off the arthritis meds and aspirin. Now she has had a stroke and is in a nursing home. She literally wants to die but there is nothing wrong with her so that's not going to happen. I hear the same thing - all her friends are dead, no one calls, and she hurts everywhere (can only give her so much pain med or she will fall) so she doesn't want to do anything or go anywhere. She says you would put your dog to sleep if they no longer had any quality of life, so why can't people make that choice? I agree. Her vision is too bad to read anymore, she can't work a tablet or remote or phone - so she is basically stuck. She is not being kept alive but just continues to live. It's not good for her or me.
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Dear Equillot,

I too wonder if there is not some kind of blockage. Your mom seems to have many of the signs that we saw in my dad. He was admitted to hospital with vomiting and pain. He was very confused at the time, so it was hard to get accurate answers from him.

The bottom line is that it took almost a week for them to decide that they needed to do exploratory surgery. It turned out that his intestines were twisted (I had never heard of such a thing), which had pushed his stomach up into his chest. Because it took so long, he was very malnourished and had to be on a feeding tube for almost 2 months to let everything heal.

Had they acted quickly, I don't know if it would have changed the problem with the intestines, but it would have helped with the need for a feeding tube.

I have had to really step in to be an advocate for both my parents. Mom is gone now, but her healthcare was a nightmare. Don't be afraid to disagree with the doctors or to insist for a different doctor if you are not getting answers.

I do feel for you with the other problems your mom is having. My mom had 2 back surgeries that caused scar tissue to wrap around her sciatic nerve, causing 24/7 pain. She was much younger than your mom, but lived with it for years.

It is so difficult to watch our parents suffer. I will pray that good decisions are made for your mom and that there are answers soon.
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Dear Equillot,
My major concern is the possible bowel obstruction. Have they told you if they can hear bowel sounds? What is the vomit like? Is it brown and foul smelling like feces.
I do strongly advise you to call in Hospice, they will be the ones who decide if she is appropriate for their care.
If she does have a bowel obstructions you and she have some difficult decisions to make. Hospice will tell you truthfully exactly what your options are and the likely outcomes. Please be honest with Mom and support her decisions. It will be hard for you but she is still of sound mind and must decide what is best for her not for her loving family.
Remember that most Drs see loosing a patient as a failure often personal and are not necessarily truthful about the prognosis hoping to spare the patient and family.
I agree with the Capt that with depression the body can't deal effectively with pain and that pain in itself eventually causes depression. When his mother died Hospice provided pain and anxiety relief for her. Unfortunately the side effects of this treatment do mean that the patient is no longer aware but the end is peaceful and pain free. Please contact hospice today, even if they can not immediately admit her they will be able to discuss her options with you in far more detail than I have. This is what they do,they have seen it many times.
Blessing and hugs. Life is never fair and rarely easy.
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eguillot, I really empathize with you (and her...) - this just sucks, doesn't it? I totally understand what your mom is saying and my heart goes out to her. And for you...? Well while mom has it worse with physical pain and inevitable aging, you deserve empathy as well because you just have to feel so helpless hearing her say those words to you and knowing how she feels... She is lucid, sharp, doesn't have dementia, and is living in pain. And Back pain is no picnic. I'm glad to hear she is feeling a little better. Hopefully removing the scar tissue took the edge off for her, for awhile. My mom who is 91 with dementia calls these years the Rusty Years instead of the Golden Years... She said everyone she loves has died, nobody calls her, her back hurts, her bones hurt, and it goes on and on... I can't imagine what my body would feel like at 91...(she will be 91 in March) - And I don't know why God planned it this way... we should all just be able to go to sleep when we are 'done' and finished, on our own terms. But in the meantime, life, such as it is, DOES go on until our time comes, and we have to make the best of it. She might take solace in knowing that the majority of us have this journey to make at one point or another. Comfort and laughter are the two things you can concentrate on for her at this time, as pain and depression get amplified when together. The shows are a great idea... movie time with the subject being movies she can identify with from her era... talks, hugs. Smiles and love. It's all any of us can do.
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my thoughts remain unchanged. a clinically depressed brain cannot adequately dispense the bodys own natural pain meds. the pain isnt going to subside until the depression eases up. since depression works in cycles often just time itself will bring relief as the brain shifts gears. i maintain this thought because the docs arent finding enough physical damage to explain the extreme pain. mother not wanting to live this way is the hallmark of the despair and resignation of depression.
i donno. maybe my advice IS bunk, after all my patient died. thats hard on ones credibilty i s'pose.
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jeannegibbs - she hasn't been diagnosed with anything terminal at this point. She's had some GI bleeds due to divirticulitis,, and had 17" of colon removed in the past. She's had multiple back surgeries, broke her hip, has a spinal cord stimulator and goes to a pain clinic for chronic pain. She has sleep apnea, she's had a quadruple bypass years ago, which her natural vessels have now compensated for, so she's now doing fine in the heart dept, but EEG's show a new tendency towards seizures, so she's now on anti-seizure medication.

Long list, but at 83, she looks good and is actually pretty healthy. She just hurts like h*ll. Oh, and she also gets those occassional GI bleeds. They actually think some of her pain might be an obstruction, and that's why she's vomiting now. I'm not sure how long they'll wait to find out before they do anything about this. They've been giving her stuff to make her go, and nothing so far.

I really think if we're going to make people's hearts and lungs last longer, we ought to be able to find a way to make their bones and the rest of their bodies last comfortably longer as well. Otherwise, what is the point?
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Is this an appropriate time to be considering hospice care?
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Thanks to all of you. Mom does not have dementia, thank goodness, although since she's been in the hospital and they started giving her dilaudid for the pain, she's been more than a little confused.

Her morning respite from the pain is over - it has returned full force. The doctors are now thinking that this might be a return of her colon problem, and that the pain is being referred to her back/hip area. She can no longer keep food down. At this point, we're not really sure what the problem is or when she'll come home.

When Mom is home, she spends a lot of time watching tv or reading her Nook, although when she is in as much pain as she been in lately, she can't concentrate on either. The best thing that can happen for her now is to be able to go to sleep.
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depression greatly amplifies all body pain. am i a doctor? no. im not a veterinarian either but i know a horses ass when i smell one.
does that make any sense? no. weve already covered that tonight. its the internet, i dont haveta make any sense.
depression does greatly amplify body pain tho. 4 years ago my mother had a bad manic crash and until her brain chemistry rebalanced itself ( typically takes 4 months ) she would genuinely inquire of me " what is the cause of all this pain ? ". manic depression is a monster of its own too. add terminal dementia to that mix and youve really got a cocktail of crazy.
i could write a book on this crap but itd be such a crappy book that "i" wouldnt even buy a copy.
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equillot, sometimes all we can do is listen and know what they are meaning. I don't think any of us want to experience the type of pain your mother is having. My heart goes out to you and her. My hope is that she has more pain-free time that you can enjoy with her. Watching movies and reading sound like such good ideas. Big hugs and good thoughts coming your way.
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That must be so hard for both of you equillot. I think I would feel the same way your mom does. Is she up to watching movies? Lately I have been noticing books and stories about elders. For example The Best Exotic Marigold Hotel is funny. The movie Philomena is supposed to be very good. I recently started reading to my mother each night before bed and she likes it so much. The book is about someone who grew up where she did around the same time. The books sparks her memories and provides some of her most lucid moments of the day. Good luck and warm wishes to you both.
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Thank you so much. She is feeling a little better today. I'm hopeful clearing out the scar tissue has helped, at least for a little while. In the long term, it does nothing, but it does get rid of the immediate issue. Thank you again.
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Maybe say " I know it is very hard but you will get through this and I will be here for you when you wake up, and when we get out of here we will have your favorite dinner" something reassuring that like. Try to get her imagining herself doing something pleasant afterwards, even if just for a second it may help to breifly take her mind off the pain she's experiencing. Better to do that than fixate on the pain. Best to you and yours I'm sorry you are going through a hard time
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