Feel Helpless As Things Spiral Downward...

My Mom was diagnosed with pancreatic cancer in May. She is on Gemzar...do they figure in her weight and age when they decide how much to give her?  I am afraid as she loses weight she will not tolerated the high doses. She is due to start her second round of chemo, but is not doing well. She takes a small amount of morphine for pain, Ativan and Reglan for nausea, but she takes a quarter of the dose prescribed. She has never been a big pill person.  I am concerned because she has fallen in the house several times (she and my Dad live in a small home). He will drive her to shopping centers, supermarkets...I wish she wouldn't go...she almost fell at one place. Her whole physical and mental being is so weak and she is confused sometimes. When we go to the doctors they don't talk about much. How do you know when to call hospice?  Do you call them months before you need them, or only when the patient is bedridden?  What are the most common sites for pancreatic metastisis? Most cancers have a favorite site to migrate to; what is the one for pancreatic cancer?  I do not live with my parents, but part of me wants to take my Mom with me, so I can keep an eye on her...but it will be a 24-7 job, and she is not one to just sit and not be active. Any help would be appreciated. She is very independent and pretty much does what she wants. Doesn't always tell me when she is planning to go shopping, etc.  My father cannot say no to her. He can't help her though because of his physical condition (walker, etc.) She is also losing things now...and continues to do things "the hard way"...does things and goes to pharmacies that are inconvenient instead of those closer to home. I am really feeling frustrated. I feel helpless and I am afraid she will fall and break a hip or worse...what is the right thing to do????Thank you.

Dearest BJ:

 Hugs, BREATHE, and hang in there!

First off, I would (if you don't already have one) get some form of Medical Consent/Authorization from your mother, so that You, directly, can speak with her physicans & staff about her conditions & care and they will discuss things with you.  THEN, I would meet in person (with letter in hand for her medical file) .. ALL of the things which you wish to discuss .. how bad she has become, your fathers health, and the request for hospice, help at their home, or whatever the case may be.  Just be certain to Document and have it in her file. 

Secondly, MEDICATIONS:  YES, the dosages which are prescribed for patients are based upon their weight .. and, I'm sure, other factors involved.  That said, Be Certain that the docs know that she is only take 1/4 of what is prescribed!  THAT is of MAJOR IMPORTANCE!

I would Definitely RESEARCH SUPPLEMENTS and various protocols.  I have found LEF.org to be THE BEST.  They have studies from all over the world. (you don't have to buy there, as they are very expensive .. but the Knowlege you're able to gain is Priceless!) Your mother's immune system DEFINITELY needs ENHANCED and Strengthened! 

Also, from my studies, I've found high dosages of Turmeric(Curcum) to be Very Good at fighting cancers without the damage of cells (possibly dna also?).  Melatonin is another great one.  Remember, these are VERY High Dosages.  Discuss with her and then, if she's amicable, her doctor.

I know this is all very frustrating for you and you only want The Best for Mom.  That said, unless and until she is found "incompetent" .. SHE will Always have the Final Say!  That, my dear, is something which you have to come to grips with.  You do not want to cause strife between the two of you, especially with how ill she is.

Just love on her the best that you can.  Research and learn ... then make suggestions to her, your father .. and, if willing, her doctor.  Even if she does not give the doc permission to speak with you .. THAT does NOT Prevent YOU from Loading Him and His office with INFORMATION .. Data about Reality for her and your father.  Be short, consise, and to the point!

Doctors only know what information they're given.  If mom and dad do not speak much while in his office, there's not much he can do or suggest.  Suggest is Key Word.  She's a grown woman.  She's still able to make her own decisions at this point in time.

I hope my posting helped get you thinking of various routes you can.

Best of Luck, peace, healing, and love your way,

~ M.

 

 

On 7/6/2008 Best Isnt Easy wrote:

Dearest BJ:

 Hugs, BREATHE, and hang in there!

First off, I would (if you don't already have one) get some form of Medical Consent/Authorization from your mother, so that You, directly, can speak with her physicans & staff about her conditions & care and they will discuss things with you.  THEN, I would meet in person (with letter in hand for her medical file) .. ALL of the things which you wish to discuss .. how bad she has become, your fathers health, and the request for hospice, help at their home, or whatever the case may be.  Just be certain to Document and have it in her file. 

Secondly, MEDICATIONS:  YES, the dosages which are prescribed for patients are based upon their weight .. and, I'm sure, other factors involved.  That said, Be Certain that the docs know that she is only take 1/4 of what is prescribed!  THAT is of MAJOR IMPORTANCE!

I would Definitely RESEARCH SUPPLEMENTS and various protocols.  I have found LEF.org to be THE BEST.  They have studies from all over the world. (you don't have to buy there, as they are very expensive .. but the Knowlege you're able to gain is Priceless!) Your mother's immune system DEFINITELY needs ENHANCED and Strengthened! 

Also, from my studies, I've found high dosages of Turmeric(Curcum) to be Very Good at fighting cancers without the damage of cells (possibly dna also?).  Melatonin is another great one.  Remember, these are VERY High Dosages.  Discuss with her and then, if she's amicable, her doctor.

I know this is all very frustrating for you and you only want The Best for Mom.  That said, unless and until she is found "incompetent" .. SHE will Always have the Final Say!  That, my dear, is something which you have to come to grips with.  You do not want to cause strife between the two of you, especially with how ill she is.

Just love on her the best that you can.  Research and learn ... then make suggestions to her, your father .. and, if willing, her doctor.  Even if she does not give the doc permission to speak with you .. THAT does NOT Prevent YOU from Loading Him and His office with INFORMATION .. Data about Reality for her and your father.  Be short, consise, and to the point!

Doctors only know what information they're given.  If mom and dad do not speak much while in his office, there's not much he can do or suggest.  Suggest is Key Word.  She's a grown woman.  She's still able to make her own decisions at this point in time.

I hope my posting helped get you thinking of various routes you can.

Best of Luck, peace, healing, and love your way,

~ M.

 

Dear M:  Thank you for your reply. I do appreciate the valuable information...basically, I guess I have to deal with my mother's choices right now. The doctors do have her permission to talk with me, and I with them. It's just the choices she is making when she is becoming so fragile and feeble...she may not feel or see this, but I do. I think my father is in denial. He thinks she will get better. I believe in the power of positive thinking, supplements, etc., but she is so turned off by taking things orally, that I can't even get things like Ensure in her. Swallowing supplements, right now, is not an option. I wish I could get her to take even her vitamins. She has always been very health/nutrition conscious, and tries her hardest to eat, but the amount she can take in is so small. Thank you again...I don't mean to ramble on, but it so hard to see her suffer like this and go downhill so fast. Blessings to you, and thank you again. BJ

Hi BJ, i'm sorry for the difficult position your family is in. I know that each time a patient gets chemo, all their vital signs, including weight, are checked so the right dosage can be given. Don't be surprised if your Mom has to skip a treatment at some time because her blood numbers are out of the acceptable range. This is very common; in fact, it happened to every one I know who ever took chemo. As to where PC spreads when it spreads. The most common site is the liver but it can go anywhere. If it spreads to the liver, the patient may be jaundiced; that's a tell-tale sign. As for hospice, as long as your Mom is in treatment, most hospice programs do not come into play. HOWEVER, if your dad needs help in caring for your mom with things like a commode, a hospital bed, a walker etc., it may be hospice that supplies those items even if treatment is ongoing. You should talk to the hospital's social worker to learn what kind of help and support is available to your parents and to you. Do this right away; they can make your lives so much easier. Try all you can to keep your mom's weight up. Prosure, Ensure, milkshakes, water ice- anything to get calories into her. Omega3 supplements (found in pill form or in Prosure) may help slow the weight loss associated with PC. I know that all of your concerns and your dad's concerns are focussed on your mother's needs but it is very important that you take care of yourselves as well. Again, ask the social workers what supports are available to you. I was greatly helped by a caregiver's support group where I could vent and rage without feeling guilty or selfish. Please know that man people are thinking of you and praying for our family in this difficult time.

Dearest BJ,

You're most welcome .. and do NOT feel bad about "rambling on".  You and your family are in a major crisis right now.  And Yes, I'm sure your father is in denial.  That's very, very common.

Look into your mother's insurance and also discuss with her doctor, social workers, etc .. about HOME HEALTH CARE.

Personally, since she's deteriorating as she is and it's difficult to eat or drink, I would inquire about a nutritional drip or somehow getting the necessary nutrients directly into her stomach/blood.

My heart cries out to you and your family.  Please, sweetheart, do take care of YOURSELF!  If you are not good, you can't be of real benefit to those which you love the most.

Always,

Michelle 

Thank you for responding...good suggestions. She will not drink Ensure...liquids are especially difficult for her. I am trying to take care of myself...not well, so far, but I'll keep trying...

 

On 7/6/2008 BJ1111 wrote:

My Mom was diagnosed with pancreatic cancer in May. She is on Gemzar...do they figure in her weight and age when they decide how much to give her?  I am afraid as she loses weight she will not tolerated the high doses. She is due to start her second round of chemo, but is not doing well. She takes a small amount of morphine for pain, Ativan and Reglan for nausea, but she takes a quarter of the dose prescribed. She has never been a big pill person.  I am concerned because she has fallen in the house several times (she and my Dad live in a small home). He will drive her to shopping centers, supermarkets...I wish she wouldn't go...she almost fell at one place. Her whole physical and mental being is so weak and she is confused sometimes. When we go to the doctors they don't talk about much. How do you know when to call hospice?  Do you call them months before you need them, or only when the patient is bedridden?  What are the most common sites for pancreatic metastisis? Most cancers have a favorite site to migrate to; what is the one for pancreatic cancer?  I do not live with my parents, but part of me wants to take my Mom with me, so I can keep an eye on her...but it will be a 24-7 job, and she is not one to just sit and not be active. Any help would be appreciated. She is very independent and pretty much does what she wants. Doesn't always tell me when she is planning to go shopping, etc.  My father cannot say no to her. He can't help her though because of his physical condition (walker, etc.) She is also losing things now...and continues to do things "the hard way"...does things and goes to pharmacies that are inconvenient instead of those closer to home. I am really feeling frustrated. I feel helpless and I am afraid she will fall and break a hip or worse...what is the right thing to do????Thank you.

I want to say i know what you are going through.  It was 5 mos since mydad passed.  I would cosult hospice now.  I consulted them right after my dad was diagnosed with stage 4.  He did 2 rounds of gemzar and unfortunately the ca19-9 kept rising.  Hospice was great with emotional support for us as well as my dad.  they were amazing.  It is a hard road but, if there one important sugggestion i can make its to love her and make the VERY most of every moment.  Everyone else will be there when she is not.  I spent every moment with my dad and i have NO regrets.darlee