The doctors can't do anymore for mom's pain. How do I get her to accept this?

I am going through the same thing with my mother. She has scoliosis and other back problems that would require major three tier surgery. She is 72 years old and in constant pain. She is on pain management but her pain is not being managed. She just switched from a fentanyl patch to oxycontin. She is always in pain unless she is laying down. Her quality of life is zero. She can't make plans or go anywhere most of the time. It seems that every few weeks she goes through an episode where she is out of it and confused, sometimes vomiting and not being able to make it to the bathroom. I saw the post about acupuncture and am going to look into this but I also recently read that 97% of medical students do not take ONE course in geriatrics. So that means all of these doctors that my Mom sees have no real experience with an aging person. Does anyone know if seeing a geriatric doctor would be of any help?

Jeanen, that's part of why we adapted a vehicle for my mom once they told us she could not be expected to do a car transfer again. Dental care at the nursing homes is almost non-existent, though they were working on some kind of special program to get a visiting dentist...but who knows how long that would have taken. You cannot just leave someone in pain - I mean when is the last time you had a toothache - could you have waited a week? two weeks? months?? You would also have the option to find an accessible taxi service and use it for appointments though most liekly you would be making all the arrangements yourself and paying for it, but its not astronomical. I could not figure what the the 10s Unit was for a minute then I realize you meant TENS, and that sure is a good idea. I would escalate nagging to an onbudsman complaint if admin is not listening. A skilled nursing is supposed to meet the resident's care needs, anything less than an acute hospital level of care, and that includes pain management.

I don't understand what palliative care is? The NH keeps telling me they are going to get mom a 10s unit. But as ususal nothing is done unless I nag the s___ out of them. I'm sorry, but it is very frustrating having to getting them to do their job from getting the right statement every month to making sure she is getting her pills and doctor appoints when needed. The pill situation is finally o.k. ( they have to take her to doc. appts. because she needs the van for wheel chairs.) There fore they have to make the appointments when the apts times are convient for them.) They forget, or they put it off, etc. She has tooth pain so I have been naging them for at least a month. I'm there almost every day. So I know she is in pain. She is 87. I have been trying to cut back on going every day per advice from a few of you here. You have made very good points. But she calls and calls. It really kills me.
Thanks for listening.

Good to know that no one has to die if they just follow that.

You know, if you follow the health laws in the bible, ( Leviticus Ch. 11 ) you'll regain your health. You should do a total body cleanse for two weeks, then eat clean foods, as written in God's law from now on, and you'll recover. You can purchase " Total Body Cleanse " at any health food, or vitamin store.

Equillot - that is awesome! The nerve procedures are so common now that there's really not a lot of risk involved. I believe that years and years of medications are a LOT worse on the body than a simple procedure that only affects the pain-causing nerve vs. coursing through your entire body, affecting everything. Medications tend to have a snowball effect - you take one, it creates a side effect, so another must be prescribed, etc. etc. - no wonder our old folks are zombies half the time. Alternative pain methods should really be the first line instead of last in my opinion.

konacaregiver - It's nice if you've never lived with horrible pain. I have, to the point that I had a gun to my head to end it. I know how bad it can get. My mother lives with that kind of pain every day. She can't stand up for 2 minutes without it. To see her crying out because of it? Living with that kind of pain? Whatever it takes to get rid of it. She could lay in bed all the time. Or she could go for those invasive procedures. Yesterday we walked the length of our shopping mall, browsed around a couple stores, went to the food court and had lunch, then came home. We did the same thing (without the food court on Friday). My hips are killing me, but she is doing great. This is all because of the lastest (invasive) procedure that she had a couple bandaids for.

OMG! those non-drug procedures for pain management sound so invasive.

konacaregiver - there are other means to control pain. Burning nerve endings so the pain signals do not get through to the brain, implanting electronic stimulators in the spinal cord to replace the pain signal with a tingling feeling - pain management doctors have a great many tricks up their sleeves. Not all of them are drugs.

"pain management" means more drugs

three things: 1. Dementia can get in the way of controlling pain - why, because meds not being taken correctly. 2. Meds themselves after a time can be the source of the pain. 3. a pain med, beyond dependency (addiction), can become an allergen especially if overdosed. WE'VE been there on all three accounts. Mom always INSISTED she knew what meds she was taking and when to take them but her dementia road blocked her and we caught many mistakes - even putting meds in pockets "for later". Once in an Assisted Living facility rather than home alone, Mom became stable when doctor ordered med compliance deliveries and decreased/changed meds back to low amounts with consistent delivery. With Dementia, her long-term memory kicks in when we go to the Doctor - she brings up her constant pain. Yet back at the ALF with her short-term memory decline, she rarely mentions the pain with the new med structure. Now its her eyes giving trouble, yet I clean her glasses and she is fine. Be patient but do make notes on things you might want to check out with follow-up to make sure everything is being done that is respectful to her needs when possible.

I guess I didn't express my self well. Mom wants the doctors to "cure" her, so she doesn't have to take anymore pills. The doctors can't "cure" her, they want her to go to the pain management doctor. The only one she's been to she didn't like.

Thanks for all the helpful suggestions. It does sound like the pain management doctor can do a lot.

What I was told is that hospice is generally a term used for "end of life care", where death is expected to be the outcome. It includes palliative care (pain management), but does not include any life-saving measures or treatments. Palliative care is more for pain management and is not geared towards the dying...a person can receive palliative care for years if needed, but not so with hospice.

It has now been one week since my Mom's rhizotomy. Yesterday we went to the mall and walked the length of it and back, plus did some browsing in Macy's. My hips were killing me - her back was fine. Prior to this procedure, she couldn't walk out to the mailbox without severe pain. Check into it. Like I say, it won't last forever, but even if she only gets 6 months and has to have it redone, that is 6 months pain free and well worth it.

I believe palliative means that it is not medical care for a cure but to make the patient more comfortable. So, to use my Hospice nurse sister's term, hospice IS palliative but palliative is not necessarily hospice. Unfortunately, a lot of palliative care goes straight to heavy duty painkillers and those come with their own issues. Not to say they are always bad, but they can cause depression, constipation and if misused, addiction. I really do believe the mental aspect of chronic pain needs to be addressed just as much as the physical, or the patient can become lethargic, depressed, alone and just plain worse. Attitude may not be EVERYthing, but it is a lot.

It can be. If your moms not going to improve over the course of the rest of her life, if it's expected that she will con't to detererioate, if she has an illness of any kind that will con't to exacerbate...no harm in seeing if she qualifies. It's under medicare coverage, you can ask her doctor to write an order for palliative care to evaluate and treat, or you can call hospice and ask for their palliative care program and they can get a doctor's order. Again, you don't have to be dying to fall under the palliative qualification. They are strictly pain control.

You say "The Doctors" , I have been there done that. Do not take no.. Think outside the box. 2 years of migraines, I stopped going to Neurologists and started pain management! I finally received MRI's and other testing that I could never get with the Neuro Docs! I was put on different meds, meds used for nerve pain..usually used for Shingles..
Try to have the glass half full approach! I know it is hard, I lost over 2 years, gained 20 plus pounds....because all I could do was lay in bed, in a dark room, barely move for too long!!
Research and look over reviews on line. Find a couple of Dr's that look like a good match and start there. Giving up, is not an option. There is always another Dr out there that is willing to take in a new patient.

OK, what are they giving her for the osteoporosis? Fosamax and related drugs are considered the best most of the time, but there are alternatives and sometimes they reduce pain. Calcitonin spray is an option if nothing more potent is safe and it is said to do that often. I agree with nurse Ginny that people should not accept living in severe pain though. Maybe a good geriatrician would pay more attention to the pain management than your current doctor. If all else fails, another option is to manage with a supportive body jacket aka TLSO brace, though that tends to weaken muscles if they never take it off to excercise. Swimming and aquatics can be a good safer exercise option with osteoporosis also. I hope you can find some way to help rather than just tell her to get used to being in pain!

Jarymo,
I was under the impression that palliative care was/is the step right before Hospice?

You can also look into palliative care,, you don't have to be terminal to utilize this, it is strictly for pain control of a degenerative nature.

You don't say how old your mother is or what her physical capabilities are (ie, is she wheelchair bound, has she become incontinent, is she very heavy, ever had a broken hip, etc). I personally have had terrible back issues due to some congenital issues (narrow foramen in spine, which makes anything that is off - spurring, arthritis, damage, etc) that much worse. Also at age 3 I went through the windshield head first, which over the years has rendered me in a lot of pain with very bad multiple back problems. I am 57 and had to go on permanent work disability six years ago due to the degeneration and pain issues. Cannot lift over 10 pounds, sit or stand in one position for very long, stress makes it soooo much worse, no discs left between vertebrae, you name it. I was referred after my MRI on lower back first; sciatica so bad that I couldn't stand it anymore. Bad news. Was told then no more working for me, and sent to a neurosurgeon. After she took my history she ordered an MRI for the cervical/neck area and the only good news she had for me was that my lower back wasn't as bad as my cervical spine. Bad news was that my lower back was about as bad as she has seen! So! I was told the only real option for me was two spinal fusions of three vertebrae each. A nurse friend of mine refers to it as 'medical paralysis'. However, if I don't have the surgery, I am told that a bad fall or a rear end collision could paralyze me for real. The neuro was clear that I was not going to most likely have any pain relief from surgery and that it could make it way, way worse. Where do you go from there? It was a shock to me, a pretty tough cookie, to have to quit work (fortunately my husband has always made very good money so I cannot complain much when I hear what other people face in pain and in financial ruin. Believe me, I am grateful every day, so I am not complaining) and to admit to myself what I had been avoiding finding out. I knew this kind of pain, which had been getting worse and worse, had to be the result of something very bad but for years as a single parent I couldn't afford to let myself even think about my pain.
Anyway, once I got past the shock and realization of my condition, I began to really explore my options. BTW, my dad has had two back surgeries (cervical and lower fusions), two wrist surgeries, two knee replacements and a few emergency surgeries as a result of complications OF his bone surgeries! My sister, a nurse, who is really a fairly unhealthy person (smokes, overweight, drinks too much, takes a LOT of pain meds) is a huge proponent of surgery and has talked my dad into most of these. She also had a lower back fusion in her early 40's which she said she "had" to have due to the amount of pain she was in. She is now ten years down the road and her back issues are back and worse than ever. I see her take pain pills covertly (never puts her purse down or lets it out of her sight and will go outside for a smoke with it and have a rum and coke, get into her purse and out comes the brown bottle, etc). Anyway, all of that is another story. But the frustrating thing for me has been knowing what she has talked my dad in to rather than explore alternative paths. As a nurse, he thinks she knows more about medicine than I do. Actually, I do so much research on almost everything and she is a hospice nurse - knows a lot about - yes - pain meds. Do you see the connection?
My rambling story adds up to this. In the past six years since I faced my pain and back problems I have been down a long road to find alternative ways to face down getting older and living with my health problems. I also have hypothyroidism (managed now with Synthroid), recently went through some OB/GYN issues and menopause and had some minor surgery for related problems, discovered that I have Barrett's esophagus (my gastroenterologist is staying on top of that and I make sure I see him when I have any symptoms as this makes me more susceptible to esophageal cancer. When I 'hit the wall' of yes, depression a couple of years ago all of these things had collided and overwhelmed me. I hurt all the time, was overweight by about 20 pounds for the first time in my life, and all I wanted to do was sleep or cry. A year ago I ended up with a pinched nerve that required three epidural injections and left my hand (the one I write with and use, my left) unable to grasp or hold anything, do my hair, you name it.
After the three injections, which were administered to me by a pain specialist, life turned around. The doctor is called a PHSYIATRIST. This is a very unique specialty; he deals with pain in a more holistic manner than most pain doctors. I was referred to him by my neurosurgeon who is aware that I am not the best candidate for surgery and thank God, did not push me into it. My pain management is part of my daily life. I walk about 4 miles a day. You cannot believe how pain is eased with the right exercise. Even the joints in my hands (yes I also inherited overall osteoarthritis just like my Dad has) feel better when I walk. Any kind of aerobic exercise quashes inflammation, which is the devil in the pain problem. We have a pool and live in a warm climate so I get in the pool too and move. I asked my doctor if I could lift any weights and he told me 'whatever you think you can lift, lift one-fourth that much'. I have massages at a chiropractor's office one a week. Of course, no chiro will touch me otherwise! I drink plenty of water. And I do NOT take any opiates or pain meds stronger than an anti inflammatory. I have seen what those can do when they end up being abused and I want no part of that.
Let me tell you. I think I am blessed with a fairly high pain threshold. When both my pain doctor and my neurosurgeon first met with me and viewed my MRI's each of them said that it is amazing that I am walking, not rolling in a wheelchair. My pain doc went into his specialty because he said, 'my mom's MRI looked like yours. And she couldn't walk. She was in so much pain and her life was so low in quality for as young as she was'. My experience would tell you to find a physiatrist and be prepared to quit feeling sorry for yourself/oneself and be willing to do some hard work. I have a lot of empathy of people with chronic pain and am not judging. I fight my family on the 'just go get it fixed' (operate) mentality. They won't change. They have really hurt my feelings by calling my back stuff my 'fake' back problem, because I have resisted some of their choices. I can see watching them that those have not long term worked all that well. Everyone's path is different.
You cannot help your mom if she is unwilling to be open to keeping on this till she finds some relief. But there is more out there than you might think.

I'm not sure how old your mom is, but my 78 year old mom has dementia (to the point that she doesn't know who we are). She has had the compression fractures to the point of making her immobile. They put her on a strong (short term) inhaled medication for osteoporosis and continuous boniva. She was supposed to wear a back brace, but due to the dementia she couldn't remember and refused when we tried to get her to put it on. After the second bad bout with the compression fractures the orthopedic suggested a procedure to inject a rubberery type compound into the fractures to eliminate the friction and pain. She is still on the boniva, and it has been over two years since she has experienced any back pain. Find an orthopedic, that specializes in geriatric patients. This condition is debilitating, the pain is excruciating and if you research online,
can lead to early death.

My mother had the same problem. After she was given a daily pain patch she had no more pain after many, many years of pain. She was 86. She had osteoporosis, stenosis, compressed vertebraes, etc. Try a pain patch.

My husband and a friend have gone to a Dr. in St. Louis who put a shot in their lower back. Immediate relief but pain came back. My husband had a second shot about 2 weeks ago. So far minimal pain. He is a neurosurgeon but uses this method first. Waiting to hear about the friend. She goes back tomorrow. (Tuesday). Please don't give up trying. Sometimes it is a comfort knowing you are BELIEVED! Been there myself.

My client has the same problems, he's tried every kind of pain medication with little relief. Then he found a new doctor who stopped the pharmaceutical pain meds and put him on edibles, which if you don't know what this is, it's medical marijuana in the form of a edible cookie. It was nothing short of a miracle. For the first time in years he's been able to control the pain with no side effects and has gotten his life back. I know medical marijuana is very controversial but I have observed first hand that it works better than any pharmaceutical on the market. You must seek out a medical marijuana doctor in order to get a prescription. My client felt he had exhausted every traditional medical avenue and after doing much research decided to step outside the box. I would not have believed it if I had not seen it with my own eyes. My advise to anyone in pain is to throw out all your preconceived notions about medical marijuana and get the relief you need. ( Provided it's legal in your state ) Seek out professional medical marijuana dispensories that have trained advisers to help you choose the correct strength and dosage.

Get thee to a good orthopaedist. There are meds that do relieve pain. I am with Ferris on the nay nay of Percoset and Percodan. I would try medical marijuana along with known pain relievers. Marijuana alone will not completely relieve pain; it will only make her woozy. You may also try accupuncture.

my mother is 92 she also has compression fractures in lower back, and lots of arthritis to add. She takes a Vicodin every 4 hours but that was not covering all the pain. We tried Cymbalta for pain. Cymbalta is indicated for the management of chronic musculoskeletal pain due to chronic osteoarthritis pain and chronic low back pain. In addition Cymbalta is also a treatment for anxiety and depression which can be a result from chronic pain. so you get both. Talk to the doctor about this treatment along with pain meds. You have one med that works on the direct pain and one that deals with pain receptors in the brain.

My mother also suffers from chronic pain. She has had a 4 level back fusion and has very bad osteoporosis. She has had the nerve stimulator implanted in her spine which helps. She takes 4 percocet/day.

The pain management doctors have many procedures they can use to help relieve the pain. They can do steroid shots in the spine, they can do a rhizotomy, which is burning the nerves in the facet joints that send the pain signals to the brain (Mom just had that done and is pain free right now - she's hoping for 6 months of relief until the nerves grow back), or implanting a morphine pump that directs the drug into the spine.

There are many options available. Living with horrible pain doesn't have to be one of them. I've been in horrible pain, and I wouldn't want to live that way. To me, just telling someone to get used to it is not an option.

My mom has constant pain as well. she is 87, has arthritis in her neck. and every where else. She can not walk or stand. She keeps wanting test? another doc? but we have done everything. She thinks she has a brain tumor. But, we have had it checked and rechecked. Her biggest complaint is "Pain" Because she is not mobil, and has diabetis there are complications with about every medication. Also she is alergic to alot of things. I can not tell you the guilt I am carring around because I don't know what to do for her. They do give her Tramodol, and Lortab. But if they give her too much in a single dose her legs swell up and there again is alot of aditional problems. They wrap her legs every day with elastic bandages. She will not wear the compression socks. Then they rub some special stuff on her legs at night. They still swell up considerably. Last night she ask them top bring some cold
water to put her feet in. The nurse on call was very nice. I don't think all of them
would have done that for her. I wish I could make her pain go away, I just don't know what to do ?

Why don't you tell your mom to call the doctors herself? My mother is 86 and still makes her own appointments. Sounds like your mother doesn't have any medical conditions to prevent her doing it too. Maybe it will help her accept her status or do something about it for herself.