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My Mom has Parkinson's Diseases and just had her 4th surgery in one year due spinal cord issues and her falling all the time. When a CT and MRI was perform after 2 major falls, one hitting her head and losing feeling in her arms and the second fall on her tailbone and loss of bladder control and intermediate loss of leg usage they found her neck was in inches away from b n paralyzed, from neck down. If she fell and hit her head and neck again she would b paralyzed. And if she fell on her tail bone again she would b paralyzed from waste down. 1. Cervical fusion 4-6. Successful but lost a lot of short term memory. Feb2016. 2. June 2016 Lumbar fusion 3-6,( fell 7 days later at rehab, rehab failed to hear us of her huge fail risk and didn't have alarm on the bed at night and Mom forgets to ask for help. The rehab never took an X-ray or CT!!! So months later after mom continued to have severe low back pain and bladder lost. A Ct and MRI was done showing hardware screws came loose at lumbar 5 causing 2 vertebrae fractures, also blood supple cut off blood to head of femur in hip (AVN), she could no longer walk and became completely no bladder control). 3. Oct 2016 Hip replacement had to b done prior to fixing the lumber fusion failure because she needed to be able to walk so fusion would have a chance of healing. 4. Feb. 3 2017 Lumbar 5 fusion repair went great. However, fluid pocket was found while surgeon was in. He took a sample, it was staph. Mom has big time anesthesia problems and is combative upon waking. She rips out IV ever time she wakes up, etc. She went to a different rehab and nursing facility and for reasons unknown she became violently ill, throwing up with in 30 mins of gets here pain med and dinner. The vomiting hurt so much, Mom thought she was having a heart attack. So they gave her nitroglycerin and rush her to hospital. Now she is back to pulling out her IV's and is very disorientated, especially at night, sundown we think. Now they want to put a PICC line in at the elbow area. My question is, won't she still want to rip this out too? Is this a wise choice to have done to my Mom. Appreciate any input, as they want to put in PICC line in first thing tomorrow morning Saturday February 11th. I'm very tired and extremely worried, along with being a single Mom. So sorry if my writing is not the best.

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Hi Irenecare49,
I saw your post, but with no update. 3 months ago, sounds like you were all having alot of hard decisions to make. I do know with the Parkinson disease alone, things are hard enough. (my sweet Dad was hit with this terrible disease). Let alone your Mom had so many other things going on. Please let me know how she is and you and your family are holding up.
I just lost my precious Mom just 23 days ago. She had so many things going on. And she fought a good fight. But I guess heaven needed another angel.
Take care
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You said that "in moments of clarity" she says she wants to keep fighting - obviously clarity is not her strong point right now. If she said to you in the past repeatedly that she "would take care of it in her own way" if she got to the point where she had to be taken care of by others, could it be that you kids letting nature take its course with her (with pain management, of course) is letting her handle it in her own way, as she said?

Those spots and lesions are signs of cancer. This would instantly make her eligible for hospice if she chooses only pain relief and comfort care (palliative) not to fight it. She's been through so much. Her last months could be peaceful and gentle, instead of filled with beeps and drips from the hospital, in and out, nausea, so much. Hospice has social workers and grief counselors to help you ALL not just the patient.

It is so hard, but we all go at some point. Faith is a huge help here.
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Above you say that your mom in her living will did not want all of this treatment. So why is her HCPOA going against what she said when she was of clear mind and put her wishes in writing? Is she making these decisions on her own now?

Is she strong enough to undergo surgery and chemo for lung cancer? On top of bone infection? Why are they testing for things like that, if she's not strong enough to undergo the treatment? I guess, I'm confused. Do any of her doctors regularly work with people who have her conditions?  Are they providing her adequate pain relief?  I'd be curious as to what they are trying to accomplish.
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Thank you all for replying and I appreciate your straight forward honest replies. Along with your heartwarming support. I will write back with the outcome, as Both my older brother and I came down with the flu. My little Brother is her executive POA. My Mom wanted to give it one last try. She is a stubborn women, in moments of clarity, said she wanted to try one more time. The back surgery was successful. She off pain killers. Which she has been on for a year. I have talk to my brother about her living will, does Mom really want all this??she and you can say ,no. My Moms quality of life might get better. That's what I guess my brother and Mom decided. We put treating the Parkinson aside due this medical spine issue. With hope of treating the Parkinson's better after the spine surgeries. She does take senimet 4 times a day with no window. She has DOA. PICC line was place successfully. My sister in law, who is not sick went and saw her with a few Grandchildren. She is complaining of the picc line. But just a few minutes ago her hemoglobin went from 7.1, to a 7, to a 6.8. They are giving a blood transfusion. My sad wish/prayer is that she let go. It's so hard on my 2 brothers and 1 each of us with jobs and 8 children between the ages of 5 and 14. We are older parents. We are 48,49,& 51. I think she is afraid to dieing. Because she said many times to me if it ever gets to the point I can't take care of myself. I will take care of it my own way. If you get what I mean. She is in full time in assistive living, unless she is not in skill rehab for these surgeries. I feel has though I have lost my best friend. I live the closest to Mom, so I am the main caretaker, until I burnt out and my little brother took a five day leave of absence last week. For this 4 th surgery I just want her to have peace. We each try to take a night to stay with Mom, so they won't give her haldol. They did that 2 times, in pass post surgeries after I informed them it's against medical advice to give any anti psychotics. However choking a nurse with a stethoscope is a just a tad dangerous. Just trying to put a little laughter in here. My Mom has always been a kind loving person and would never intentionally hurt someone. What is palliative care? They did a CT & MRI and found a dark spot on her lung, they want to do a lung biopsy and many lesions on her spleen( are lesions just from aging)? I know you all are not doctors. I think her body is saying she had enough! We also found out that Mom has a deep bone infection and they are treating with a different antibiotic, from the MRI. How does an MRI show infection? Thanks for you time. Going to rest again, so I can get better to take my daughter to school.
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This sounds really hard. You are describing advanced Parkinson's with dementia and maybe even delirium, plus now at least an incomplete spinal cord injury with probably very low bone density such that hardware is not staying in place. The treatable parts of this puzzle are few - antibiotics for infections, maybe cathing for the bladder, maybe medication to try to rebuild bone density but that takes a while. If you opt to try aggressive treatment to regain health and function for her - which, sadly and honestly, may or may not be possible - a PICC is harder to pull out than an IV and is more out of the way than a regular IV, so she might not mess with it, but it can be done; a port might be a better idea. If you have to use restraints to keep things in, given the setting of advanced dementia, it is usually better not to. I know there might be some hope that with the infection under control she would be better mentally so I do not want to discourage you totally from giving it a try. And I know it is really hard to be realistic when it is your own mom, let alone to get the docs to be realistic and have those hard conversations with you.

Be aware too, that if they try antipsychotics to calm her, it can make the Parkinson's worse and affect her swallowing and nutrition. There are additional meds to counteract that, but at some point there can be nothing but rocks and hard places.

Whatever happens, get the best information you can and know that if your heart is in the right place, your decisions will be the best you can make... and that Mom is blessed to have someone caring at her side through all of this, however it all turns out.
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What decision was made? I am thinking of you and your suffering mother, hoping for the best outcome for her under the circumstances.
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It seems to me that your mom is miserable. Why are they taking such hard measures to keep her going?
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Irene, what you're going through! I'm so sorry.

I think you can only be guided by your mother's medical team. Ask them what happens if she attempts to remove this new line; ask them how they would restrain her if she does; ask them what, realistically, they are hoping to achieve and what you should prepare yourself for.

And you have a right to expect patient, comprehensible explanations. Don't apologise for asking, and don't let them walk away until you're satisfied that they've told you everything that can be known at this stage. You do have to bear in mind that a) sometimes there aren't any good options and b) sometimes it's impossible to predict how things will go.

I hope they succeed in making your mother more comfortable. Take care of yourself, too.
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Goodness, she has been through a lot! Parkinson's Disease being progressive coupled with all these recent adverse effects, what quality of life does she have?
Yes she can pull the PICC line out too. It may be less conspicuous for her to see but if she is so restless and disoriented, she can manage to pull it. They insert the line bedside but will probably need restraining as the patient must be still. 
How much more can she tolerate?
Palliative care is an option the family should discuss. I don't know details but does she want to continue treatment? Does the family want to continue as well? With staph she is going to need IV access and soon.
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Have they mentioned Hospice? The PICC line is a last ditch effort and yes she can rip at that too. If she does, maybe it is time to simply make her comfortable with roxanol or Haldol and say some prayers.
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