Chief Oncologist to My Dad Re: Pain: Learn to Live with It.

[Mike03]

I had the wind knocked out of me today when my dad told me that although he had worked up the courage to confront his doctors directly on the matter of his uncontrolled pain, he had been told, essentially, there there is no further recourse for him.

I'm experiencing so many emotions today that it's hard to write a succinct, sensible post.

For one thing, my father is almost 70 years old and he never complains about anything. It used to be hard to even get him to take an aspirin for a headache. So I know that when he tells me that he is in pain, there's no question in my mind that he hurts. He is not type to seek drugs or abuse them.

Secondly, he loves to do things, and the pain is now becoming an obstacle for him. We are in the process of shutting down a business, which is very sad for everyone. He loves his work, and I love helping him do it.

Thirdly, when he began treatment, the doctors told him that their number one goal was to get his pain, on a scale of one to ten (ten being worst) to a zero. He told me that it oscillates between a three and a five, and that the pain never leaves entirely.

Fourthly, the doctors have prescribed him a good regimen of pain medicine, but it is clear that it is not sufficient. And I know that there are alternatives and more that the doctors can do to help him.

The saddest thing to him, and my entire family, is that the doctors tell him he is in near complete remission (and we are happy about this), but he doesn't feel good. He and my mom keep asking, "Is this as good as it will get?"

My mom said the saddest thing to me the other day. My parents had been planning a trip that they usually make every year, and they love going to this place, and she said that she felt they would never go there again. The other sad thing is that my father said he was worried he was being a "wuss" about the pain. This killed me. He has been so tough. This is a man who never complains. He never missed a day of work. To see him starting to get down on himself and his own body when he is fighting this terrible thing and having his doctors leaving him hanging out to dry on the pain issue makes me so sad and makes me feel so helpless. I don't think I can stand seeing him in this situation much longer before I have to do or say something, even though he may not want me to.

The sense of loss is immense. But my priority now is to help my father get better pain management. I asked him if I could write to his doctors directly, but he said he had it under control. I told him I would never do it without his permission, but the moment that I could intercede, he should please permit me to do so.

And, ironically, I know my dad is one of the lucky ones, because the doctors have prescribed him strong medicines for pain. But I know there are other things they can try. There is such a stigma about prescribing pain medications, but people with serious pain need to get the help they need. Living in a state of chronic pain can make you crazy. Just having a headache for two weeks has made me nuts; I can't imagine the chronic pain of a cancer sufferer. I just can't imagine it, or how much courage it takes to keep going onward.

Sorry for the rant. Thanks for listening. I'm just at wit's end. I would do anything in my power to help him or fix him.

[GCP]

1. Is there a pain clinic at your hospital

There are pain specialists who can look into different pain control regimes and modalities at most teaching hospitals. Look into it.
He doesn't have to be miserable like this.

[Mike03]

13. Thanks, you are right

They just very recently assigned him a pain manager. I'm trying to get this person's name and email.

I just want to make sure that my dad is telling this person the truth about the depth of his pain.

[Fredda Weinberg]

2. My mother got a recommendation to a palliative care specialist

Where she got proper treatment, eventually an epidural helped.

Her oncologists never cared for her comfort.

[Mike03]

15. My heart goes out to you and your mother

This is something that worries me. If a person "fails" (a word I HATE) a clinical trial, I've heard that sometimes the doctors distance themselves from the patients and just leave them twisting in the wind.

Over my dead body will that happen to my father.

[Fredda Weinberg]

16. My mother passed away comfortably, at home. You are your

parents' best advocate. The oncologist sent me a lovely card after, but she was just a patient.

Best wishes ... your father is fortunate to have you.

[KatyaR]

43. Many oncologists don't care about controlling pain--that takes too much time and effort.

They want to cut or burn out the cancer and that's it. Most of the ones I've know have been compassionate to a certain point, but they get to a point where they can't handle the patients who "whine" because they're in pain. Of course, many times those patients are terminal, which means the oncologists have failed.

I'm not sure which is worse--having cancer or being in constant pain with no relief.

[Fredda Weinberg]

53. She had many specialists .. a podiatrist did her nails. I wasn't

medically qualified. Her eyes were vulnerable after so many years of chemo and she had a hemotologist just to keep the rest of her in balance.

Only toward the end did she allow me to make some of her decisions and was duly grateful after the epidural. During those final weeks, morphine was the difference between comfortable days and the lesions we knew were dissolving her spine.

Having cancer doesn't have to painful ... even in the end. The hard part was the relationship transition, the loss of shame that signifies intimacy. Carrying her to the toilet, supporting her in the shower ... you maintain your dignity with a sense of humor.

I had a great relationship w/her oncologists. I translated their brochures and finally, da Momma got to make her own decision. Pissed my oldest brother, an MD himself, off so badly he complained to family services that hospice had used undue influence ... me. But he acted before she lost consciousness and got an earful after.

So there's nothing to fear from cancer itself. It's how we respond, usually quite badly, that makes us miserable. After seeing my mother care for her parents, we were prepared and it was as pleasant as the rest of the best of our life together.

[RockStarPrincess]

3. sympathy

im sorry they are huting

[Mike03]

18. Thank you. NT

[PA Democrat]

4. Has he seen a doctor who specializes in pain management?

My mom had a good outcome with a pain management specialist. Also, would he consider trying acupuncture?

I hope he finds something that helps. Pain can really destroy quality of life.

[Robbien]

8. That is what I would recommend, acupuncture

It can be of tremendous assistance in treating pain which isn't responding to meds.

[Fridays Child]

5. Has he asked for a referral to a pain management specialist?

Is he properly describing his pain levels? Why don't you go to the doctor with him? Sometimes, it's difficult for older people to advocate for themselves, and your father seems like a person who might tend to downplay his suffering, in the presence of the doctor.

[orleans]

58. that's a great idea. mike should go with his dad. n/t

[still_one]

6. I am so sorry what you are going through /nt

[Mike03]

21. Your kindness is much appreciated. Thanks. The people here

are so kind.

[hisownpetard]

7. Mike - Has the doctor discussed the possibility of a morphine pump (inserted into the patient

in a doctor's office visit and controlled by the patient, for pain management)?

[Mike03]

10. I told him about this today. The pump sounds like it could help him.

I'm printing out a whole bunch of research on this topic as well as some other options and I'm going to give them to him tomorrow.

He's the type of person who is ashamed of taking opiates to begin with; he had a negative reaction to hearing that word, morphine. But I think I can get him to reconsider his opinion, since the pump sounds very effective and many reputable people have spoken highly of it.

Thanks for mentioning this.

[hisownpetard]

29. After managing a doctor's office for 21 years, I've seen many people helped

immeasurably by this. I'm sorry your father is so resistant to the idea, but maybe
he can be reasoned with. Every one deals with this kind of thing in their own way, though...

You sound like a wonderful son.

[shraby]

14. I would encourage him to investigate the

morphine pump. My son had an aneurysm burst when he was 29 years old and it left him with what is called thalamic pain. He said its like he has no skin on the left side of his body. He was given a morphine pump and the pain is still there but is tolerable. He is now 45 years old. Taking pain meds by mouth isn't as effective as the pump so he needs much less of it since having the pump.

[Mountainman]

9. I'm not trying to make you feel worse but does it have anything to do with who pays?

I was a controller of a medical clinic until last Oct. Our pain management Dr would not see people with Medicare or MediCal because he said all they wanted was their prescriptions refilled. What ever the hell that means. He took only patients with regular health insurance.

[Mike03]

17. This is helpful. I don't know the answer to your question

As far as I know, my parents are on Medicare. My dad is enrolled in a clinical trial, and supposedly the insurance is paying for everything. But I am ignorant about the system and what might be going on behind the scenes.

My parents are very lucky in that if they had to pay cash for something like pain management, they could most likely afford it. So I wonder if it would be of any benefit to tell the hospital/doctors that they can afford more pain management? Would that be wise?

[Mountainman]

33. You could ask if it make a difference.

[Irishonly]

11. Pain Management Clinic/Doctor

Is there any reason your dad hasn't been referred for pain management? It just doesn't seem right. I have to wear a duragesic patch 24/7. It's stronger than morphine and it allows me to function. I couldn't take morphine or methadone but can wear the patch. I am so sorry to hear about your dad's pain. There is no reason he should have to suffer like he is.

[backscatter712]

12. Blame the Bushie FDA and DEA.

Leave the doctors to do their jobs, and they'll rightly give him huge amounts of opiate painkillers.

For a normal, healthy person, those kinds of dosages are the sign of addiction, and might even kill. For a person in chronic pain, those dosages are exactly what's needed.

But Bush's DEA don't care about that. They just care about putting notches on their guns to show how rough and tough they are with them eeeeeeeeeeeevil druggies.

So they lean on the doctors, they lean on the pain clinics. And the pain clinics have a choice: Do their jobs in accordance with science and good medicine, get prosecuted and spend years in prison; or leave their patients in excruciating pain.

Fuck Bush and his nazi crony scum!

[DesertRat]

19. I'm sorry, Mike

I don't have anything to offer as advice, but I'll give this a K&R to help others to see it.
Take care.

[JohnnyLib2]

20. My thought is to very aggressively go to other sources until help is found.

Sad to say, having to search is a common story. (I'm in a related profession). Your dad could get a different reaction and treatment plan from the next provider he sees. Every best wish to you both.

[otohara]

22. Complete Relief

Hard to achieve. Finding a med or combination of meds to manage pain, is about all you can ask for. If the med/meds he is taking now aren't working, ask for something different.

P.S. Pumps or patch for a 70 year old man, too risky!

[TexasBushwhacker]

23. F**k the oncologist, go to a pain management specialist

Seriously! I have no doubt that my mother's life was extended by the chemo and radiation that she received for her breast cancer. HOWEVER, her oncologist could be amazingly myopic when it came to pain management and side effects from chemo.

As my mother's breast cancer metastasized to her bones, bone marrow and finally her brain, she went through several different pain management routines. Morphine worked for a while, then methadone worked better. A Fentanyl patch worked for a while, then an IV pump worked better. She actually got the best pain management once they transferred her to hospice care and we had nurse visits 2 or 3 times a week. But whether your father is terminal or not, his pain should be managed, and there are doctors that do that exclusively.

I can go into more details if you like, but to make a long story short, if I hadn't intervened on my mother's behalf, without her permission, she would have died 2 years earlier than she did. It may piss your dad off initially, but I wouldn't hesitate to rattle some cages if you have to. Feel free to PM me about this if you want.

Take care!

On edit: BTW, I will say that the most important thing with pain management with cancer is to stay ahead of the pain. It's not like a headache where you wait until it happens and then take something. The pain is there and it must be kept in check. He will ultimately need less medication if he stays on top of it. Morphine pumps work very well, because he will know that he has control, and he can click it and give himself a bolus whenever he needs it. If he's not on the pump, then he should have breakthrough medication when his pain is worse than normal. If he's having to take the breakthrough meds often, then his regular pain medication dosage should go up, or they should use something different.

[Mike03]

24. I'm so grateful for the posts and ideas.

Thank you so much. I will keep reading any ideas that anyone can post, and print this thread out this weekend.

One question I have--which does not deserve a new thread--is has anyone ever had to take over advocacy for a loved one who is suffering from some disease?

Bless my father, he wants to do everything, but he's shy about some of the central, basic issues he is struggling with, such as the pain, but also depression, fatigue. He's embarrassed to say these things, and I want so badly to intervene, but I promised him I would not do that without his permission.

[nadinbrzezinski]

35. When my dad broke his hip

we split duties

My brother (he is an MD) got into the face of the hospital that was not doing its job

I got into the face of the EMS system...

And my sis (RD) dealt with the dietetics aspect

Did it fully work?

Nope...

But at least they got somewhat of a discount.

The problem with advocacy is that it is a fine line between advocacy and what is perceived as a "difficult" family

We worked in some aspects of the system, so it helped... we knew what to expect to a point

And yes, one has to become an advocate and get down and dirty at times. Parents feel that when we do this, they are no longer able to take care of themselves. So again it is a very fine line

[riderinthestorm]

36. I am my husband's "advocate" in that I go to the doctors' visits with him

and even right into the exam room to ask the questions and help HIM get all the information/medical care he needs.

If your dad will let you go into the examining room with him, I've been informed that by law the doctor MUST allow you to stay. This means you can have a dialogue with both the doctor and your dad. Sometimes bringing issues up like pain management or depression as a discussion rather than as a big-deal issue can defuse some of the anxiety and embarassment.

Definitely get help from a pain management specialist. And the depression and fatique really need to be addressed....

You are a wonderful son and clearly, will be/are a terrific advocate. :hug:

[Hannah Bell]

38. I did.

It's very hard.

If you have a good enough relationship to talk through things calmly & come to a common agreement about a plan of action, that's the ideal.

[GardeningGal]

46. I was the advocate for both my parents.

I was also their medical power of attorney and I went to most of their appointments with them and went into the exam room with them. I asked the questions they couldn't/wouldn't and I took notes so I could share the information with my siblings so the doctors didn't get multiple concerned phone calls from each of us. The one time one sibling tried to go around the arrangement, I called and read them the riot act and my other siblings backed me up. They also learned to send me questions they wanted answered.

Our parents generation don't want to upset the apple cart so to speak so I think it's important that you get as involved as possible. And talk to them about their wishes so you know before it somethin happens and it becomes a crisis. That is not pretty and you don't want to go there.

If I can answer anything else, PM me.

Good luck, and enjoy them while you have them with you.

[housewolf]

25. I'm so sorry...

I can read in your words how sad you are for him, and I am sad for him and for you too.

I know this is a long shot... but by any chance is he in a state where medical marijuana is legal? It has helped many cancer patients with their pain.

:hug:

[DFW]

26. Been there with my own father--you have my sympathies

My dad fought a losing battle with pancreatic cancer, and lasted
a long 12 months before it got him. He never wanted to complain,
either. The worst part for us is not being able to make things better.
We feel like bashing our heads through walls and tearing out our hair,
and about the only thing that keeps us from doing it is knowing that
making ourselves hurt won't take some of his pain away.

[applegrove]

27. Sending good vibes to your dad.

[earth mom]

28. Find your dad a new doctor who will help him.

My dad died of lung cancer and in the beginning we went through a few months of the same type of b.s. with the pain meds. We switched doctors and they gave him the strong stuff.

My dad was a man who rarely took an aspirin and was always as strong and healthy as a horse. So if he said he needed stronger meds, he needed them.

It was hell seeing him become so frail and helpless. :cry:

Good luck to your dad!

[Warpy]

30. As for a referral to a pain specialist

If that oncologist won't give you one, fire his ass and get another oncologist.

Serious pain isn't something you tell people to get used to. Untreated pain leads to social isolation, depression and suicide. It is a fatal condition.

That oncologist needs to be out of practice.

[dysfunctional press]

31. his oncologist should be able to prescribe mscontin...

mscontin- morphine sulfate continuous dosage- it's the next step beyond the oxycontin that rush uses.

[nadinbrzezinski]

32. Mike been told up thread but you need a team of pain management specialists

and not all oncologists are pain managers

[goclark]

34. My thoughts are with you as you go this struggle with your dad

He is blessed to have you for support.

[Stinky The Clown]

37. Mike, your dad's too young to be told this ......

.... I see others have suggested you get him to a pain clinic. I agree.

I have an aunt approaching 95 who has chronic, debilitating arthritis. She is in constant pain (somewhere in the 5 to 7 range) such that she has not slept in a bed for years, only able to sleep upright. But that pain is managed. Without management, she would actually be worse.

There are times when the right answer, sorry to say, is "you'll have to learn to deal with it." My aunt's only alternative right now would be to stay so drugged she would be dysfunctional. For her, even at her age, having her mind sharp is important to her.

The pain clinic she goes to regulates that and has found a balance between 'tolerable pain' and lucidity. Since all they do is pain management, they're excellent and ...... managing pain.

[undeterred]

39. As you've already been told

don't let one doctor's limitations be the end of the road. When a doctor says that he can do no more for you, believe him, but take it as a message that you need to go somewhere else. There are many ways of managing pain.

I've lived with migraines for 25 years which isn't medically serious, but it is severe pain. I use tradidional western methods and a neurologist. However, I have also used Eastern medicine (acupuncture) and it works. It takes longer and when I am in pain I am in a hurry. My neurologist used to be skeptical, but after so many years- he is no longer. He does not send patients to acupuncture- but if they cannot tolerate the meds he puts them on- sometimes they don't come back, and it turns out they have made peace with the migraines through Eastern medicine.

I hope your dad finds the way to make peace with his cancer pain.

[AikidoSoul]

40. Pain Management specialists are

often in conflict with pressures to keep patients from becoming "addicted".
Here in Florida there is always a battle between pain management specialists
and the medical regulatory boards.

I can imagine the frustration you are feeling in this circumstance, and my
heart goes out to you and your dad.

Addiction is an absurd notion for a patient with extreme pain, and is beyond
absurd for terminal cancer patients. They should worry less about addiction
and more about quality-of-life.

I sent a private message to Dr. Donna who is a pain management specialist who occasionally
posts here on DU. I called her too but she's not at home yet.

She'll probably tell you the same thing that some DUers have suggested.

MORPHINE

Many folks vary widely in their sensitivity to morphine, so regulating a pump
using small doses at first should be carefully considered.

I just had to take morphine by mouth because I broke a rib from coughing with
this flu / pneumonia thing that's going around. The broken rib and resulting
muscle spasms made coughing excruciatingly painful. It even was painful to breathe.

That started last Saturday and because I'm extremely sensitive to it I only took 1/3 of the
prescribed dose and spread it over 14 hours instead of taking it every 6 hours.

Even with the reduction in dosage, the the edge of the pain was taken away. But it also
caused other problems. I was told by the doc to use a hot water bottle to ease the muscle
spasms but because I wasn't feeling pain I burned the hell out of the skin on the front
and back side of my ribs. Now its a mess of hanging, bloody, watery blisters and is
very painful. If I had been able to feel more pain that probably wouldn't have happened.

Remember, your dad can't drink alcohol when on morphine (and probably most other pain killers).

Morphine depresses breathing significantly and needs to be watched to insure persons in fragile
health don't succumb to respiratory arrest.

I had to wear a cinch type thing to hold my ribs together tightly but the morphine suppressed
my breating so much that I had to remove it. With the blisters, it's a good decision.

I only took the morphine for four days and it was enough to get me through this bad time.


I offer you good wishes and prayers for you and your dad.

Let's work together to better regulate carcinogens in our environment, like the 80,000 plus
synthetic chemicals that are not tested properly prior to marketing.

[emilyg]

41. I was in same boat

with my Dad. Made Dad sign a medical power of attorney. From then on all drugs or lack of them were discussed with me. I became obnoxious in providing the best for Dad.

[soleft]

42. I'm sorry I don't have anything to add to the informative posts here

But I will keep you and your father in my thoughts and wish you the best.

[Wiley50]

44. Mike, I'm a Pain Management Patient. I've got some Ideas

The pain management specialist ideas I see above is the way to go

But, in the meantime, Contact the American Pain Foundation.

It's a clearinghouse and advocacy org for people with chronic pain.

Their website is www.painfoundation.org

They have a forum, like DU, sign up and get online.

There are tons of forums on different issues, you'll figure it out.

Also, send an email to the contact link on the homepage. They'll contact you.

They can help you locate their local contact person in your area who can clue you in on the best
local resources to find the help your dad needs.

This is how I hooked up with them and they helped me a bunch.

I'm now a member and help out with online advocacy work.

Good Luck!
and if I can be any more help...........

[OhioChick]

45. There are many very good Pain Management

Clinics in the US. You might (as well as your Mother) sit down and have a talk with your Father about getting a 2nd opinion from one. Maybe they can look over what your Father is currently taking and change/adjust some meds so that he can live as close to a pain-free life as possible.

Hang in there, Mike. :hug:

[horseshoecrab]

47. I agree with the recs for a pain management program/clinic

A good pain management program might really help your dad and is definitely worth checking out! You might find one at the same hospital where the onco practices. They might teach him something so that the next person doesn't have to sit and wonder if they're asking too much by wanting less pain.

You're a good son Mike03

:hug:

horseshoecrab

[eilen]

48. Here is my personal experience with my father

Hi, my Dad was in acute pain for the last few months of his life. He had Stage 4 lung cancer that was unresponsive to Taxol/Carbo and he had only one dose of Alimta which only made him more ill. They had him taking fentanyl patches, but they didn't work very well. Some people don't absorb the patches well, I think some research has been done in regard to it being a genetic thing--that is what my dad's hospice doc told me. He was also prescribed oxycontin and oxycodone. That was marginally helpful as sometimes he wold throw up his pain meds. Then there was the oral morphine (roxanal). That was pretty effective and combining it with an occasional dose of ativan helped with his anxiety (which was frequently spiking d/t his alcohol history-- and he wasn't drinking while taking these).

At a certain point the oral morphine was not effective because he started experiencing an organic dementia. His mouth was often open and not able to absorb it. We went back to the oxycontin, this time administering it per rectum by his doctor's recommendation. At this point we had eliminated all but about 100 mcg of the fentanyl patches which kept coming off anyway. This seemed to be the silver bullet for his pain. As an oncology nurse, I had never in practice administered it this way. The doctor I was working with told me that many hospice programs used this in Europe because the duragesic patches are very very expensive so they use this first and the oxycontin absorbs better in the rectum than by mouth. She actually had a couple of private practice patients taking it that way that were having a similar problem with the pain management. She did not alter their dosage, just the route. It is important to note that people with a history of alcoholism have a higher tolerance to pain medicine in general. It is a catch 22 in that they are often labeled as drug seekers even when their history of being alcoholics is known.

The struggle to get my father pain free was finally won in the last 3 weeks of his life. Unfortunately, he also had reached a point where he no longer recognized us. Please understand that it was not the medication that caused this. We had eliminated drugs like Haldol and Ativan for a period and the Dr. determined it was organic. There is a history of dementia in my father's family and he also had a long history of alcoholism from the time he was a teenager and a head injury about 25 years ago. The hospice doctor was on the phone with me almost every day.

He did not get adequate attention and coverage for his pain until he went on hospice. Prior to hospice the cost of his medication exceeded his medication plan and was costing about $900 a month (particularly with the fentanyl patches).

If you are your father's proxy, I would bring this up with him again. I would explain that most people with acute pain need to have a "back up" someone to take notes, remember the questions to ask, esp. as pain and pain meds, as well as cancer treatment can cause people to forget stuff and dealing with the medical system is very overwhelming. All the waiting, blood taking, interview questions then finally the doctor comes and he goes within 5 minutes. Oncology doctors are amazingly overbooked. I have worked in a clinic where my docs are seeing up to 20 or more patients a day sometimes. Sometimes they are just follow ups after chemo or prior to chemo. Often they fall behind. I would talk your dad into scheduling a family meeting with your oncology team. He may need to get a referral for the pain clinic. Best of luck and I will pray for him. Also it is important to know what kind of pain he is having, some neurological pain is not helped by morphine and some patients have found success in treating it with neurontin or elavil.

[Divernan]

49. You HAVE to much more directly involve yourself w/ your father's medical care at once!

Look, I (daughter) just finished approximately 20 years of being responsible for my mother's medical care, and it's a damn good thing I did because one of her two other children pre-deceased her and the other son couldn't face the reality of her aging, monitor her to make sure she had regular exams, or even show up at the hospital when she had cancer surgery, or fell and broke her hip, let alone deal with her ongoing medical conditions. She died last summer at the age of 94.

You need to take some deep breaths, step back and look at the larger picture than just the pain management. You've gotten a lot of suggestions up thread, but there are some basic, critical psychological and legal issues to be addressed for both your parents.

As our parents age, there comes a time when the roles reverse, and the child becomes the parent. That time has come for you, and it is not something you place the burden on your father of making him ask you to do this.
In your father's case, there is first of all the factor of his age, and secondly the factor of his near constant pain. As you yourself noted, even two weeks of a headache made you nuts. In other words, your father is not in the physical or mental condition to be able to stand up for himself and demand the care that he needs. Your father sounds like a wonderful man who feels it is his personal failure if he can't handle his pain or handle all his medical issues. But I think he will be terribly relieved if you can say, "Dad, you need all your energy to maintain your heath; let me handle the insurance and the doctors."

I'll tell you something else, you need to be with your father when the doctors are telling your Dad anything. You will have much more presence of mind to ask the right questions. Have you any idea of how little time doctors actually give to any patient nowadays. Plus doctors use technical terms which laypeople - especially elderly people in pain - don't begin to understand. Then you're relying on your father to tell you second hand what he remembers. That plain does not work as effective communication.

You say you're not even sure whether your parents are on Medicare, and that supposedly his insurance company is paying for him being in a clinical trial. Pardon me for screaming at you, but ALL PEOPLE OVER 65 ARE ON MEDICARE UNLESS THEY ARE INCREDIBLY WEALTHY AND CHOOSE TO OPT OUT !!! ALL INSURANCE COMPANIES INSIST THAT INSUREDS OVER 65 USE MEDICARE AS THEIR PRIMARY INSURANCE, AND THE PRIVATE INSURANCE POLICY BECOMES THE SECONDARY INSURANCE!!! You have a steep learning curve ahead of you to effectively protect your father and get him the best medical care which his insurance SHOULD provide, but typically (as per Michael Moore's film, "Sicko") tries to deny, delay and stall.

Here is what you must do to protect and care for your elderly parents (because your mom could develop serious health problems in the near future as well).

1. Educate yourself about Medicare, and the limits of coverage it provides. That means plowing through booklets explaining it, and asking questions of Medicare officials until you understand it.
Ditto for Medicaid.

2. Get full medical power of attorneys for each of your parents so that you can represent them with all of their medical care providers and their insurers. Do you know that under the recent HIPA legislation, the doctors/hospitals/labs/nurses/therapists etc. are not allowed to give you ONE SINGLE PIECE OF INFORMATION about your parents' health care, condition, bills, treatments, etc., to anyone, unless each parent has signed a release as to their respective care/records, naming the person with whom information may be shared, or who may act on their behalf. You should not put the burden on your mother to deal with all the medical questions/issues. As distraught as you are at your father's health problems, she has got to be much more emotional, plus she is older and likely more easily intimidated by medical authorities.

3. Once you have a medical power of attorney, (and include in it the clause that a photocopy is as good as an original), send in copies to Medicare, the private health insurance company, and each hospital/nursing home/ doctor's office which is involved in treating your father. Then start every conversation you have with any of them with the statement. "I am calling for my father, John Smith. I am Robert Smith and you have in your files my full medical power of attorney on behalf of my father."

4. Using the Health Care POA, get complete copies of the private health insurance policy. Have the bills for premiums and all other paperwork for both the private insurer and Medicare sent to you. This is to make sure the insurance doesn't lapse because of non-payment/an overlooked premium. At this stage in life, your parents perhaps also need help just in balancing their checkbook, paying bills on time, etc., as well. Keep track of medical expenses for their tax returns. Handle filing their tax returns for them.

5. You need a complete list of all of each parent's health care providers - internists/family doctors, every specialist (eyes/hearing/ob-gyn/proctologist/all specialists/dentists). Then talk to someone at each office and find out how long it's been since parents were seen, and make appointments as necessary. My Mom went for years, starting in her 50's without going in for regular cancer screening- her regular doctor insisted she get a pelvic exam when she came in with the flu and he found out she hadn't had a pap smear in about 20 years. So what's going on with your Mother? Have she and the rest of the family been so focused on your dad's serious health problems that she has neglected her own care? She should have annual exams and lab work from an internist; an annual pap smear/gyn. exam/mammogram; and regular dental care and cleaning.

It's a hell of a burden for you - but that's what we- the generation in the middle- have to do. I gave up job promotions, relationships, vacations, hobbies - a lot, to take care of my Mom. But she was a great Mom and she took great care of all of us kids (she was widowed), and so I was glad, if exhausted at times to take care of her.

I'm a retired lawyer, and I have to say wading through Medicare, Medicaid, private health insurance policies, claims forms, etc., was no picnic for me. I don't see how anyone elderly, untrained in reading insurance contracts AND in pain can be expected to cope with all of this. A younger family memeber has GOT to step up to the plate and assume responsibility. If you say your father refuses, try to get your mother to help you convince him. Tell him it is important to you that he let you do this for him.
You can find Medical Powers of Attorney on the web. Google for your state, and "Medical Power of Attorney". By the way, these POAs are NOT the same as living wills, and your parents should each have one of those also. Again those are available on the web.
Good luck and PM me if you have further questions.

[annabanana]

50. There's a great deal of valuable info in this post.

I have saved it, I hope others do too.

[DesertRat]

51. What a wonderfully informative post

I'm printing it out for my own reference. Thank you.

[rosesaylavee]

52. Have you or your parents

considered medical hypnosis? I haven't read thru the responses so maybe this has already been addressed. Not sure what state you live in but if you pm me, I will give you the name of licensed hypno therapist I know who regularly treats chronic cancer patients... almost exclusively and pain management is one of his main focuses. He may be able to put you in contact with someone in your area or state who does the same thing.

Peace my friend.

[ensho]

54. a joint would help him get through the day too - is there a pot clinic

near you?

[IdClaire]

55. one thing I've learned about health care

You have to be your own best advocate or have someone be an advocate on your behalf. I've got a friend with stage 4 breast cancer and she is in her 30's. She found out the hard way she had to be her own best advocate. One of her Dr's dismissed a lump in her breast when it was probably stage 1 and is now in a battle for her life. She insists on seeing her file, questions the doctors and if she has a dr who can't handle being questioned (many are like this) she changes. If you are not happy with the care your dad is getting and you feel his pain is being ignored look for another doctor. You should encourage him to speak out as well as you. Let us know how he does.

[VotesForWomen]

56. i am there right now (herniated disk) and i want to slap the shit out of doctors like that. try ano

another doctor. when i first had my herniated disk 10m years ago the doctor said he wouldn't give me anything for the pain; said it was surgery or nothing. so i toughed it out for 8-9 months of constant, serious pain (i saw how people could commit suicide due to health problems); then it finally got better, to where the pain was tolerable at least. i just reinjured the disk a couple months ago and i am in constant' life-altering pain at the moment. i have had to resort to alcohol (never used to drink before) and pain meds obtained wherever i can. i am probably going to go to a doctor soon, but i am going to shop around and make sure that before i ever even go in the door, they assure me that they will treat my pain. keep trying, no one should have to live in pain.

[shadowknows69]

57. I'm 39 and have crippiling back pain

and have been told about the same. I'm about to get booted from my pain meds because my doctor is worried about me getting addicted to them. I said fine, let's switch to something else occasionally to break that cycle. Nope. Next step is to refer me to a pain center which I don't have the insurance to go to. I guess I start drinking again.