Intractable pain, hospitalized sister in agony now three days. What should I be advocating, and how?
My 60-year-old sister with severe rheumatoid arthritis and congenital scoliosis, adult-onset asthma, IBS, etc. was admitted to a Cleveland Clinic hospital three days ago with severe pain. She is in soul-obliterating agony. As of last night, she had gone through a CT (cannot tolerate an MRI), and a pain management consult. She is due to see a neurosurgeon today. While in this wait mode, the nurses confirm she has been prescribed Flexeril (no effect), and Toradol (no effect). I have asked why she could not get temp opiod. Last May, she had a Morphine drip but my notes say she was "Morphine intolerant." Is there any relief? What should I be advocating and how? Also, when admitted this time, she asked me to contact her county's women's crisis line because her adult sons are emotionally abuse to her and mooch off of her. I will have no idea whether they take her case or not (privacy), because I doubt she can respond to their phone call to her. One son caused a warrant for her arrest because he failed to change her old car title to his name and incurred multiple moving violations. She was forced to pay his fines (over $1000) and her credit rating plummeted. That is a lesser concern right now, but the crisis line made clear to me that I cannot be a go-between. I am also unable to be a guardian for her.
I am proud to say I got over my “Blood on my hands” knee jerk, nauseated reaction to calling APS. Years ago I had “interfered” with calling for help for my brother, and he violently committed suicide. Brother and I had separately moved over a thousand miles from Mom. I helped brother’s widow clean up the mess while Mom (by phone) insisted he was kidnapped by the “Chinese Mafia” (my brother sponsored a saint of an Taiwanese woman and married her) -- and threatened to disown me if I didn’t side with her. Her venom remains in my soul. Mom refused my father’s pleadings to travel to collect my brother’s ashes (which they never did, I handled it all). There’s something about PTSD /Stockholm that makes people (me) not react to things rationally. I guess at least I know I’m challenged.
I’m proud to report that yes, I DID report Sis’s ongoing post-hospital issues to APS and it gives me peace. Sis thanks me, but I don’t think she has a clue the cataclysmic changes she will be dealing with. Sis yesterday updated me that APS has interviewed her, again, in Sis’s home and they are attempting to contact sons via phone. Sons of course do not answer. Sis says APS assured her they have their ways to find them. Meanwhile, youngest son has moved out and appears to see the heartbreaking abuse of the older son, which is quite a breakthrough.
I may have posted to the wrong forum for this. I usually lurk on Dysfunctional Families. But the medical aspect is so prominent. Any advice as to where I should post would be appreciated. Should I split this off into two separate queries (emotional vs. medical concerns) on two separate forums? I have a very hard time keeping up. I have begun therapy again (Sis’s vulnerabilities were just too much to handle with everything else). Medically, her neurosurgeon is recommending stenosis surgery (she’s 60). I’ve been reading heavily about this, and am afraid for her. She’s so sweet and hopeful now, I can’t share with her the “success rates” I see. I know I eventually will, but am hoping the surgeon is forthright (Feb. 22 appointment). She has lost 20 pounds since she left the hospital, shooting for 50 before surgery. For the first time in her life, she’s seizing control of her weight and I am so proud of her. Her hope is a treasure for me. But I’ve been through my husband’s spine surgery, which failed, and I feel the nail-on the-chalkboard dread. Can’t help it. Sis has sought out her old therapist, but I’m not sure she can hang in with her many issues, long commutes, and a Cleveland winter.
I’ve gotta stop, too long a post. Just thank you. All of your wisdoms are gratefully “intook” and appreciated. I may not respond quickly, but I am so very grateful.
i was going to write a lot of what Sue wrote so i will not repeat, but everyone has the right to proper pain relief.
Sis needs to learn about tough love. But she is so conditioned now to being afraid of the sons she just picks up the pieces. She has to get out or be removed from that situation. leave the house, let medicare take it or have it foreclosed or sold for back taxes whatever it takes.. The boys will be evicted but it will be someone elses problem.
Can you get her a life line button. Even if it is only for a few months. When the boys threaten her she can press that and have help arrive fast. Don't let the boys know she has it or they will take it away and destroy it.
CM so you got your fingers burnt but you did the right thing by not sweeping something you perceived as wrong get swept under the carpet. be proud of yourself for standing up.
You have to report facts. Stick to facts. Your sister's property has been sabotaged. Her home has been made difficult for her to live in safely. She has reported a near-fall. Log all of these things, and pass them on. It's all grist to APS's mill, it's confidential information, and if they don't feel certain things are important they won't worry about them and there's still no harm done. You can't go wrong.
I think you need to call APS and the Hospital SW and let them know what she came home to. It is elder abuse pure and simple and yes, she is caught in the cycle of abuse.
The fact that it is not safe for her to get to the bathroom in her home indicates it is time for a move.
I do not understand how you can equate calling APS to having blood on your hands? Isn't it the opposite, if you do not call and something bad happens you will feel responsible as you knew there was a problem.
How is getting help and safety creating more chaos? It will create change, and yes, her sons will not be happy and likely will act out, but she will be physically and emotionally safe.
In the UK, there have been a lot of nurse run pain studies. One woman spent ages on the classification types and areas of pain as well as the causes, and various types of relief. Naturally, I can't remember exactly details, so I am making this up, but she found (say) that radiating pain from the shoulder down the arm, could be helped by rubbing a certain formulation of some medicine in a cream around the C-4 vertebrate over an area the size of the patients palm every four hours. She was by no means against the use of morphia when helpful, but found there were so many other, very specific ways of managing pain, especially chronic pain. Unfortunately, this meant a very long and careful interview by a trained nurse, with lots of follow up and fine tuning. Ultimately, in whatever country it was used, it would have saved money and relieved suffering (oh dear, I seem to have picked up the wrong priorities), but the feeling seems to be in a lot of places that the cost in training and nurses time would be too much to spend.
50sChild. Sorry to have highjacked your post. I wish you and your sister the very best.
Sis released from hospital Jan. 21, with usual discharge chaos. She did get morphine and after three attempts, her MRI which neurosurgeon said absolutely requires big spine surgery or she'll keep degenerating. She has severe scoliosis among other issues. She left hospital with so many pain meds that include Percocet and all others mentioned above and others I haven't had time to enter into my phone. APS visited her in hospital, she doesn't remember much except social worker (SW) stated that her story match what I told them. SW apparently nexts tries to interview boymen offspring. Since discharge, she can't sleep and doesn't want to reach out (we were raised to be stoic and not involve "outsiders.") She told me her sons had moved a couch so she had to squeeze around it to get to kitchen. They destroyed her refrig so she had to through all food out yesterday. They destroyed her washing machine so she has a service call pending (they were angry she couldn't keep up with laundry). They shame her for being "addicted to pills." Her first home health care visit is today, finally. Knowing her she won't tell them her pain meds end Friday and her doctor appointment isn't til Jan. 29 (over a week later). She waffles between knowing she has to divorce her sons (I didn't prompt that just hear it as she's on the phone rambling with me), and that she relies upon them to get groceries (she's using curbside pickup one mile from her home and she's aware of front door delivery). She also doesn't want to lose son's lawncare, which she pays them for. A little irrational, but isn't that the abuse cycle? Anyway, hover sis in me wants to report these appliance/dependency issues to her crisis line. But my own sanity says back off as she has moments of rationality and does she really need more chaos than what's happened. Yesterday she said her knee completely buckled on the stairway (which she has to use to get to her bathroom). She seems aware that could be dangerous. But she seems to not know that bucking up isn't necessarily her lot in life. Fingers crossed APS is moving on something. I soooo want to report the refrig and washer and near-stairway fall. But I don't want blood on my hands when she seems rational (how can I even say that, both she and I have learned to smile through a lot of emotional abuse from Mom). Thank you.
In the 39 years I've been a nurse, I've seen great medical advances. We can look into the body with many different machines, cure diseases that were once fatal, treat diseases to keep them under control for a better quality of life and have seen vast strides in prevention of diseases.
The one area that is lacking is pain control. We really haven't made good progress since the introduction of opiates many, many years ago.
Case in point; My mother showed dementia symptoms about 6 years ago. Also, around that time, she started having headaches. (mother was a bit of a hypochondriac throughout her life.) No medications helped relieve her pain. She had many tests but nothing showed up. She was sent to a "pain clinic" and they gave her Morphine 7.5 mg. to take twice a day. That should have relieved ANY pain but it did not help. Now, wouldn't you ask yourself, if Morphine doesn't work, then maybe it's not a "pain" as we know it? I suggested she quit taking it.
A couple years later with the dementia progressing, she saw a new doc who ordered a battery of tests. Nothing was identified as a cause of her pain. In doing some research on Alzheimer's, I found it can cause sounds and muffled voices in the head. I have to conclude that mother's "headache" is brain noise. Unfortunately, there is no help for her.
I don't think that doctors have enough time in a 15 min. visit to really assess pain. I know there are a lot of scammers-I've had them come in as patients- but the majority of patients truly have pain. I don't think doctors are skilled in "assessing" pain, like taking everything into consideration such as depression, apprehension/anxiety, family dynamics, etc. They don't have the time in this era of "cattle herding".
We need to take the "whole" patient into account when assessing their condition. We need to explore other means of relieving chronic pain. We need to develop new, non- addicting medications that can relieve us of our suffering.
I have arthritis in my neck and back problems. I take Motrin 600 or 800 mg.. If that doesn't kick it, I go to Tramadol. Usually that will do it. On the rare occasion it doesn't, I will resort to a narcotic pain pill. Usually, by then, my neck is locked in place, my back is spasming and I'll take anything. I get shots every few months and my pain doc does this procedure called "needling". I'm guessing, by the way it feels, he puts the needle in and twists it around. Hurts like hell but it took the pain away for a few months.
We need to enter the 21st century for effective pain medication. We are at a disadvantage with big pharma. Hopefully there will be a breakthrough soon.
Sorry, kinda' got carried away. I just don't know WHERE these dumb studies come from. I think it's to brainwash us to change our behavior (taking narcotics). Wouldn't be the first time a government did that to its people.
I TOTALLY agree with your take on pain relievers!!!!! I can't take Ibuprofen anymore, Tylenol alone is a joke. Can't take Tramadol and so I am left with a stingy scrip for Tylenol #3 that barely cuts through my chronic back pain/arthritis.
Having said how hard it is for me to get my dr to let me have some Tylenol #3's---my "neighborhood dug dealer" is doing GREAT business. He seems to have no problem getting the "good stuff". I'd NEVER EVER go to him for pain pills---but I know people who do. B/C their own docs won't treat chronic pain.
If I can get on top of the pain on bad days and stay on top, I take less. I think that's the norm. It gets out of hand and I'm useless. And I know I am not alone.
OMG, I beg to differ with your study! Maybe mild, infrequent pain can be handled with the drugs you mentioned but when you've got out of control, intractable, 10 out of 10 pain, you can't kick it without narcotics (actually you are interrupting the nerve pathways that send pain messages to the brain). No amount of Motrin, Tylenol or Tramadol (I take all 3) is going to do squat for severe pain.
I have been a nurse for 39 years. Synthetic opioids (Demerol, Dilaudid, Vicodin, Percocet, etc.) have been used for decades to relieve severe pain.
I'm also a part time hospice nurse. Morphine is standard issue for people dying in pain. I'm afraid I be laughed out of the house if I tried to give my dying patient a Tylenol.
I'm also a fan of holistic medicine. It's great to use natural products to aid in our health. Often times physical therapy can relieve some pain, as can music therapy, talk therapy, massage, heat-cold, plant poltices, etc..
The problem with NOT getting the pain managed is that it spirals out of control. Then, it's very difficult to get it back under control again. I actually experienced this after my surgery. My doctor wanted me to have a BM on post-op day #1. (Unthinkable and not a realistic expectation!) So, I thought that since narcotics (that I was prescribed) can constipate you, I would only take the Motrin until I "went". Thirty-six hours later I called the office crying in pain. I couldn't "go" and I was in excruciating pain. The nurse told me to forget about "going" and take some pain medicine. Within 3 hours of taking the medicine, my pain was under control, I could relax and I "went". (Sorry if TMI.) I'm trying to make a point.
My son is a heroin addict, so I'm unfortunately familiar with over prescribed narcotics. Yes, the pendulum has swung the other way. Now, you're LUCKY to get a narcotic prescribed post surgery, car accident or other huge life event that causes great pain. Doctors are scared and don't prescribe, but to our detriment. WE suffer because they have been too liberal passing them out like candy THEN realizing we have an opiod epidemic on our hands.
Flexeril is a muscle relaxant. It is indirectly used for pain IF it's muscle related. Toradol is a non-steroidal anti inflammatory (so is Motrin). This is not going to be adequate for severe pain.
I hate to mention I have not heard great things about Cleveland Clinic. Maybe the neurologist will prescribe something that will work!
I personally feel that the pendulum over opioid abuse has swung waaaay too far to the left---you can't get what you need to control your pain, your QOL just goes down the tubes. WITH a correct pain reliever, you are able to get up, move around and HEAL. W/O, hubby wouldn't even get out of bed.
Everyone is different. Everyone experiences pain differently. Unfortunately, drs ARE terrified to prescribe ANYTHING. I hope this soon changes back to them being caring of the PATIENT not terrified they're going to lose their licenses!!
But when someone is in pain it’s just inhuman not to treat it - in my opinion. You just may have to become a pain-in-the-butt, demanding, squeaky wheel to get it for your sister.
If she can’t take morphine there are many alternatives - although most still fall in the same opioid family as morphine.
Fentanyl, Vicodin and Percocet all come to mind. Vicodin and Percocet both having acetaminophen which are helpful beyond the Oxycodone in the treatment of arthritis.
I don't think right now is the time to call the crisis line if she can't talk to them.