Topic: The Caregivers Bill of Right

Every so often I like to repost this important piece of advise: 
I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.

I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.

I have the right to maintain parts of my own life that do not include the person I care for, just as I would if he were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself.

I have the right to get angry, be depressed, and express difficult feelings once in a while.

I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn't matter if she knows that she is doing it or not.)

I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.

I have the right to take pride in what I'm doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.

I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: The Caregivers Bill of Right

Marion,

This couldn't have come to me at a better time. A certain someone is being very difficult this evening. She had chemo yesterday and is still on her 5-FU pump until tomorrow evening. She was in such good spirits through chemo, last night, today, and then BAM, the evil chemo monster hit. This has happened the last few times. She gets so irritable and nobody can say or do the right thing. So we try and leave her alone. Then she gets mad and does things herself and slams things around. It is like something has taken over my sweet daughter. I bite my tongue, but then usually end up yelling back because my feelings get hurt. Then I go cry because I try to do everything to make her happy.  I feel guilty for getting mad. Then I go give her a big hug and tell her I love her. I know it is the chemo making her act this way and she always apologizes after it is over, but it hurts so much when she acts like she hates me. I feel better now. Thanks for listening.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: The Caregivers Bill of Right

Dear Pam, please don't apologzie for letting it go, sometimes it is just needed! Perhaps the bottom line is not that you know who, is in a funky mood but that you cry because you can't take away all the bad stuff. My daughter is 49 but I cannot even begin to imagine what it is like for you as a mother. If she has a hang nail so to speak I call to see how it is. I just can't fathom how you do it. Today will be a better day!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: The Caregivers Bill of Right

Uh oh... I hope the chemo monster doesn't come to visit me. My wife may give me a piece of her mind, or hand, or foot, or broomstick handle...  lol

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: The Caregivers Bill of Right

If the people you care for receive any form of steroids while doing chemo, that will do it.   It's awful, and it's awful coming down off them because it's like you have no control over your emotions.  Sometimes it hits, sometimes it doesn't.  I personally cry a lot at just the drop of a hat, and I am not a crier.  People react differently to them.  Sometimes I'm under the kitchen sink cleaning it out at 3 am in the morning because I can't sleep and just have to do something.  You just never know.

It's the chemo monster for us, too. 

The steroids do help us. though, in a lot of other ways.

Kathy

Re: The Caregivers Bill of Right

Pam....My daughter has colitis and is on a constant dose of steroids and as you have mentioned, it can make for a difficult person.  And, we mothers take it on.  Although we understand that we can't "fix" their conditions we try to "fix" everything else in their lives.  My background in psychology goes right out the window - too close - too emotional. 
Kathy, thanks for sharing the patient's side of the effects of the steroids.  I am wondering whether we should establish a few, specific threads in regards to side effects described from the patient's perspective?
Derin...in order to avoid the broomstick you may want to explain beforehand the possibility of mood swings and other unfamiliar personality changes.  It is being said that cancer affects all not only the patient, but also the loved ones.
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: The Caregivers Bill of Right

As some of you know, I have been on steroids since Nov 5th and about to start weaning off next week. Here is what I have experienced: Anger, crying, gained 25 LBS, legs, ankles and feet look like tree stumps. I feel like when I start going off water is going to seep out all my pores!  I get up at all hours of the night and find things to do until I get tired again. I am wired and sometimes talk a mile a minute.
I have to use every last ounce of energy I have to get dressed and go somewhere. But, I keep pushing as I know I have to. You know you are not feeling normal and there is nothing you can do about it. It's all very frustrating. I was telling my daughter this morning that I am getting short tempered and she said just say what you want and then apologize! I have much more sympathy now than ever before for those with Ulcerated colitis!!! It ain't fun! This is cute: I got a card to carry from my Gastro Guy that states I have U.C. and if I ask to use a bathroom please comply as it is usually an Emergency.  Say, Derin, how do you like that one??

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: The Caregivers Bill of Right

Thanks for the info everyone. I thought it was the chemo and it is actually the steroids. Never would have thought it. She gets 2 Dexamethasone pills before her chemo so that is probably what causes it. I am a highly emotional person and get angry, sad, feelings hurt, happy, etc. very quickly. I don't usually hold anything back either. You don't want to see or hear me in the car if someone cuts me off. It is the hardest thing in the world to bite my tongue. Lauren and I both have that kind of personality so you can imagine what happens from time to time between us. I do have extra patience with her now, but it has definitely been a learned response. We never stay mad and tell each other I love you many times a day. Lauren has also been gaining weight so would that be the steroids too? Please tell me the good things they do.

Lainy- you sure have had a rough time. Prayers that you will feel better soon.

Marion- sorry to hear about your daughter. You are amazing.

Derin- you better not be insinuating that your wife is a witch with the broomstick reference. You'll be sure to get a bop on the head for that one.
Just kidding.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: The Caregivers Bill of Right

Hang in there Pam.  I think you are a great Mom!

Cindy

Re: The Caregivers Bill of Right

Pam, You are the most amazing Mom. I am in awe of your love and dedication to your daughter. The two of you have such a special relationship..the ups and downs are so normal. The steroids made me mean as a bag of snakes sometimes, I did not have them this round of chemo and everyone was so much happier at our house.

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: The Caregivers Bill of Right

I get steroids with my chemo too.  Right now I am munching on chocolate!  LOL!

Cindy

Re: The Caregivers Bill of Right

Ha, ha...Cindy. Have to ask: what brand of chocolate?  I love dark chocolate made by Lindt or Ritter Sport with hazelnuts.
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER