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You Might Be A Caregiver If.......

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

You feel like smacking the next person who says "Boy, you really look tired".

You make life and death decisions with a snap of your fingers but you need 30 minutes to select an item from a dinner menu.

You can rattle of the generic and brand names of medications and the family they belong to quicker than the nurse.

Going to the grocery store feels like a mini-vacation.

Caregivers - tell us your version !!!!!!!!!

kmathewson
Posts: 1
Joined: Jul 2010

My husband is just starting round 2 of chemo. Everyone's comments made me laugh and get a little teary. I've got it EASY compared to some of these folks. I love, love, love the sense of humor through it all.

CarolinaAlice
Posts: 3
Joined: Jun 2010

My sweet husband Steve passed one month ago today. It has been a crying day but these postings have given me a little chuckle to end the day. Steve would have loved these, especially the poop references. Unless you have been there, you cannot understand the excitement of your loved one's good poop report. Thanks much for uplifting my spirits!

Alice G.

appleyellowgreen's picture
appleyellowgreen
Posts: 38
Joined: Sep 2009

You might be a caregiver if friends you haven't seen for awhile are shocked to see how good you look! (it takes a lot of work, but after all, I owe it to the public)

You might be a caregiver if everything on your calendar is written in pencil.

You might be a caregiver if your reading CSN discussion boards is your main source of entertainment.

This is still a great topic. It never gets old. Thanks for the comraderie and humor.

Adrienne

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Hi All, I came on here to see what it was like. I am the one with cancer and post on the head and neck. You all made me smile and some of the stuff I read I have heard my fiance say people have said to him. Coming from the other end.. I want to say THANK YOU to all of you who have chosen to stand by us and be our caregivers. You are all beautiful in my book. I personally know that I have put Joey through hell even though I never meant for any of it to happen. But when my CT came back bad the other day and I told him I was putting off the wedding again, he told me he didn't care if I had extra parts, hair or no hair, was nauseated or what, he still wanted to marry me. I really needed a pick up like that. Without him as my caregiver I would be lost. We know it isn't easy and don't always say thank you or show it but we love everything you do for it.
As for the things you all hear...he gets this a lot...I just don't see how you can handle taking care of her every day and dealing with the trache and feeding tube. His reply..I love her duhhh..would you not take care of your husband or wife if it happened to them?
As for those who always tell him it will get better...he just says how? did they come up with a cure we didn't hear about? I know not the best answer but he says sometimes people just have no idea. I am going to have him check out your boards. He needs to know he isn't alone.
Again, thank you for being there and allowing me to add my input. You are all great.

Debbie..ps..that is his picture as we are recognizing our caregivers on the head and neck site..check it out.

kayaker01
Posts: 20
Joined: Aug 2010

you're tired of people telling you it's only $..., when you try to explain you can't participate in something you normally would

you're tired of people asking "does he smoke" upon hearing he has lung cancer

you're tired of people saying "he doesn't look sick"

you stay in bed for 4 hrs after you're awake with your head under the covers desparately trying to get some more shuteye in hopes that when you wake up you will find out it has all been a nightmare

you put on 50 + lbs eating "to go" food on all the numerous trips to and from the hospital

you feel like you're living in exile because he has alienated family and friends

99% of the time all you hear coming from his mouth is barking and growling

I LOVE this post. It so helps to relieve some of the frustration.

GOD bless you all.

junklady's picture
junklady
Posts: 88
Joined: Aug 2009

You are tired of people asking how your spouse is, you just say okay and walk away. They never ask how you are.

You have to put cucumber slices on your eyes to take the swelling down from crying all night.

You've painted everything inside and out of the house , there is nothing left paint.

Your exercise equipment needs a break.

There is not a weed left in any flower bed.

You jump at every little sound you hear in the house.

You go to the Post office at 6 am. to avoid seeing people.
Thanks, just wanted to share, makes me feel a little better.

kayaker01
Posts: 20
Joined: Aug 2010

i can so relate to the "not a weed left in any flower bed."

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

You might be a caregiver if -

Visitors get a 30 minute briefing and orientation before you let them come over

You feel deja vu of your early years as a parent

Your comfort boundaries are always changing and you constantly hear the voice in your head saying "OK, I can learn to live with that"

vanessat's picture
vanessat
Posts: 9
Joined: Aug 2010

You Might Be A Caregiver If You've ever been asked by a Nurse or a Doctor "are you a nurse or in the medical field?"

You Might Be A Caregiver If You've had a friend ask, "well can't someone else help you?" (as if it's THAT easy)

You Might Be A Caregiver If the only thing you don't know how to do is perform Surgery

You Might Be A Caregiver If you've wished you had a warm blanket machine at home like the ones they have in hospitals

(for the most amazing person, My grandmother) (Oct 3, 1925 - July 31, 2010)

Ginx525's picture
Ginx525
Posts: 16
Joined: Aug 2010

...you know 50+ ways to may a Boost smoothie.

...you've used all your sick days up and you've not been sick in years (there went early retirement)

...you go to sleep at night listening to the sound of the baby monitor and your children are 25.

...and you wake up if you can't hear breathing.

...you want to pummel family members that should be around and helping that are not. Especially when they stroll in and say "you should have called"...I did call and you never answer.

...oh and my personal favorite...(may be TMI for some) when you find a moment and have some energy left for that "alone time" with the spouse, you make love with the baby monitor on listening to your Mom asleep and breathing in the other room...just in case she needs something.

...you go to sleep at night tired and know that you have done your best to make your loved one's day be the best it can be.

menang
Posts: 35
Joined: May 2011

Absolutely agree with everyone of yours...couldn't have said it better...

RAB73
Posts: 27
Joined: Oct 2011

Thanks everyone for the chuckle. I can relate to a lot of these.

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

--You have decided to start your own business to help all people with cancer and swallowing problems.

--you listen to every sound coming from the patient at all hours of the day and night putting your tv on mute.

--you are calling funeral homes for pricing (sorry this is for the pallative patients who can not be cured)

--you have a schedule of meds which may be every two hours for a 24 hour period, sleep does not seem as important as your patient being pain free.

--you cry, cry and cry some more..anytime and anywhere.

--you rush to get to the store and back...record time broken here!!!

--you are afraid to leave them in any case near the end.

--you make sure that their meds are ordered and on time...don't need any slips!

--you have taken over their responsibilities along with your own throughout the house.

--you have made arrangements, gotten all the important paperwork together.

--you sit and cry for your loved one, why did this happen to them?

--you evaulate your own life.

--you wish this was all a very bad dream!!!

--you are thankful for the next day/moment with the one you love!!!

~Kelly

PS..being a caregiver you can never ever be selfish...if you are than you shouldn't be a caregiver!!!! Hence the word "GIVE"

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

I reserve my statements as untimely.

Regards,
Michelle

rocket baby's picture
rocket baby
Posts: 22
Joined: Sep 2010

The first thing you say every day is how do you feel?

You have become accustomed to clipping toenails and giving haircuts, and thankful that there is hair to cut.

You get tired of people telling you that he looks great when you know he looks dreadful.

You've learned to smile at people who offer their advice when they have absolutely no clue what life is like in your shoes.

You get sick of hearing about people's petty problems, or people telling you how tired they are....ya right!

You have people that tell you "I don't know how you do it" but they never offer to help.....

sis46
Posts: 1
Joined: Jul 2010

Just starting this journey, but already I identified with much of what's already posted here.

Thanks for the smile and letting me know I'm normal (whatever that is)

JackieA
Posts: 150
Joined: Mar 2011

it's 80 degrees outside, but 90 in your house.

you automatically grabbed the urinal at the same time everynight.

You function on 5 hours of sleep a night.

You can't wait to get the free coffee and snacks at the dr. office.

You never get the last word! The patient is always right.

Reading a book while using the restroom is R and R for you.

No one asks how you are doing...you are really invisible.

Bobs1wife's picture
Bobs1wife
Posts: 153
Joined: Sep 2010

The "contacts" on your cell phone has more doctors numbers than friends and family.

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

..... you can't count how many doctors they have, because you don't have enough fingers.

..... People offer to bring food, because hubby's not eating. (like it's my cooking that's making him starve to death)

....... you need to correct your doctor's about meds and treatments. You have said more than once that you know more about the cancer than they do.

...... you have a hospital bed and a queen size bed jammed into your once pretty bedroom. (along side the feeding tubes, syringes, and a night table full of sippy cups, PRN medications, kleenex and a barf bucket.)

...... you can rhyme off a list of 20 medications (and the times they need to be taken), some that are utterly unpronounceable, yet you can't remember the 2 items on your grocery list.

....... wish that you could be the one taking the needles, bloodwork, iv's and chemo so that your loved one does not have to go through yet another needle jab.

...... wonder if it's appropriate to buy your 49 year old husband baby food, in hopes that he'll eat it.

....... you are ok with your loved one eating ice cream as a meal, and even cheer for him as he does it.

....... you want to punch every person that tells you how strong, wonderful and great you are.

........you think how lovely it would be to take some of his narcotics.

........you see a friend or neighbour at the store, and you rush around to the next aisle so they won't see you.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Hugs, Chantal.

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

GREAT post Chantal. VERY honest and heartfelt!

YOU keep those spirits up and don't hesitate to call me or Michelle. We are here for you. ALWAYS. 24/7. WE don't close!

Love

Eric and Michelle

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

It really sucks when a new caregiver can relate to these things.

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

. . .You are eating dinner and someone starts to cough - you all automatically reach for a bowl, cup, or other container for the person to barf in.

. . .You are eating dinner and someone starts to barf in a bowl, cup, or other container, and you continue eating, once you've made sure that it's "normal barfing" and not something new.

. . .You are eating dinner and continue when someone barfs, and some kindly soul who is staying to "help" you looks horrified, and you say, "don't worry - it's only his second time today, so he's doing quite well."

Thankfully, those are all in the past for us.

ldguerra's picture
ldguerra
Posts: 41
Joined: Jul 2011

Your a caregiver if you get up from the sofa set and walk into the kitchen and then turn around and say 'what the heck am I looking for?'
your a caregiver if you go to the grocery store and remember the paper towels, protein shakes, favorite fruit juices, baby wipes and when you return home you noticed you didn't buy your coffee.
your a caregiver if you know his clotting time and exactly how much vitamin K he uses per week and the cheapest pharmacy to get it at.
your a caregiver if you know all side effects of all meds and instead of reading the active ingredient.
your a caregiver is you can distinguish the generic brands from original brands just by the packaging
your a caregiver if you wake up and wish that it was still dark out and that the pets would keep quite just for a few more hours lol, this is my every morning wish.

emotionalpond
Posts: 22
Joined: Oct 2011

If you get what everybody here is saying..........

If you laugh and cry at the sametime when reading most of the post.

:)

Jenn

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Amen, Jenn!

Mafster
Posts: 2
Joined: Nov 2011

You've become a total pro at recognizing what are meant as helpful "snake oil" cures and can resist the urge to say "It's cancer, not a head cold, take your precious Oregano Oil and put it in your spaghetti sauce!"

You're fairly certain that Quinoa though it may (or may not) be a miracle food, isn't all that miraculous after all.

Your friends and family suddenly become super duper crazy busy.

The palliative care nurse tells you that you need to learn to ask for help. But see above.

You truly live by the words "One day at a time".

You learn that it can be the littlest, silliest things that help you make it through the day, and you learn to embrace that.

(... Oregano Oil ... ARG...)

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

Thank you AnnaLeigh. This is the best post yet! It made me laugh, because you might be a caregiver, IF, you can relate.

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

You can't remember what it was that you did in life (that had any meaningful importance) before you started your life as a caregiver

You have pillows, sheets, blankets, and linens in your house that no one else can use because they are designated "only for the loved one with cancer"

There is a bathroom in your house that is off limits to everyone but the loved one with cancer ( better known as a "chemo" bathroom )

It brings too much pain to even think about what you will do in life or what life will be like once the caregiving is over

mr steve
Posts: 286
Joined: Sep 2009

Is there life after care giving...

Or you borrow sheets from the local hospital because they fit better on the hospital you have set up in the living room...

Petesgirl
Posts: 3
Joined: Apr 2012

Anybody get nauseaous reading all of the tips for caregivers.
Take some time for yourself every day?... Like when? Maybe if there were ten more hours in a day.

Delegate. If there was anyone to delegate some resonsibility to, you wouldn't have to be trying to do everything yourself.

Exercise?..........WHEN? I get my exercise running from the kitchen to the bedroom, the bathroom, over and over and over.

Take good care of your own health. Again, when? I have used all my sick days and vacation days to take care of the cancer patient, when do I have time to see a doctor? (And I actually work in the same practice as my family doctor, and I don't have time to see him as often as I should).!

All of the caregiver tips sound wonderful, but how many people find them the least bit realistic?

lostmyheart's picture
lostmyheart
Posts: 7
Joined: Apr 2012

*the nurse asks your loved one what month and day it is, and YOU have no clue

*you have anxiety attacks at the grocery store, trying to find something that they just MIGHT try to eat

*your loved one has an open wound (where the tumor has come out), and while you are in the hospital the nurses actually bring YOU the cleaning supplies for the wound and watch as YOU clean and dress it

*you feel alone, alienated, exhausted, overwhelmed, heartbroken, scared and guilty on a daily basis.

*your tolerance for selfish people and their BS totally disappears

(RIP my love. I would do it over and over and over again for you)

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I'm from the brain cancer board and I just finished reading every one of these posts. Can so relate. I laughed and cried and felt a little less alone. Thank you.
Cindy in Salem, OR
Mom of David, 25 y/o when diagnosed with anaplastic oligodendroglioma May 15, 2009.

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