November is National Family Caregivers Month

MGMidget1976
MGMidget1976 Member Posts: 2 Member
edited November 23 in Caregivers #1

Caregiver… NOT Guilty!

We the jury in the case of you giving the ultimate act of selflessness - being a caregiver… find you NOT GUILTY on all accounts!

Being a caregiver is hard! There are days you are completely at your wits end, there are days you are physically, mentally, and emotionally exhausted. There are days you have no answers and nowhere to turn. There are days you find yourself wishing it would all just end. 

You have become an instant expert in understanding medical jargon, maneuvering through insurance forms, medication distribution, treatments, side effects, general palliative care, doctors’ appointments, visiting nurses, in-home care, assisted living arrangements, the anxiety of waiting for test results, and making life changing decisions for another individual. You are a spiritual guide, a cheerleader, you answer the ultimate question of ‘why me’, you provide comfort, a shoulder to cry on, and you have the strength of ten men.

There is no guidebook, no course you can take, no college degree that will educate you or prepare you for the fact that another individual, whether it is a parent, child, spouse, loved one, or friend has just put their life in your hands. There is someone in your life that is now suddenly solely dependent on you to guide them through the fear, pain, and anxiety of illness but most of all to guide them through to their final destination.

You’re living in a perpetual masquerade. You put up a strong front on a daily basis, telling one big gigantic lie over and over again “everything will be alright”.  When the fact of the matter is you are torn up inside, you want to swear, yell, scream, whine, cry, ****, run a way, and hide from the world. When you signed up for this, you had absolutely no idea what an insurmountable mission this would be.  All of the people that said they were going to help, have suddenly forgotten to show up and you are faced with this monumental responsibility alone and you say to yourself “I can’t do this anymore!”

Yet, another day goes by and you manage to persevere. You fight through the pain, the anxiety, the tears, the exhaustion; you fight for one more day, you fight for yourself and you fight for someone who cannot fight for themselves.

There is no super hero cape, no cool costume that you get to wear, no party in your honor, no celebrations of your accomplishments, no badge of courage, or medal that you will receive. Yes, caregiver this is your life.

I’ve lived it firsthand. It sucks! I have spent the better part of fifteen years being a perpetual caregiver. First it was my ailing father, then shortly after my sister, and finally the only man I ever loved.  

I’m here to tell you… you are awesome! We are out here, those who have lived it and those who are in the thick of it right now. You are part of an elite group of warriors with battle scars and all. You will get through this but you have to give yourself a break.

Stop worrying if you have done all the right things – because you have. 

Stop feeling that you are failing miserably – because you are not. 

Stop judging yourself and your abilities – because you are doing just fine.

Stop saying I ‘coulda, ‘woulda, ‘shoulda – because you did.

Stop feeling like you are a horrible person wishing it would all be over for both of you – because we have all been there and said that.

Stop letting the world play armchair quarterback on your decisions – because until they have lived it, they have no right to weigh in.

Stop letting people tell you how to feel - because we’d all like to see them walk a mile in your high heels – knowing they couldn’t possibly.

Stop feeling ashamed because you’re letting it get to you – because it can and will affect you in ways you may not even realize yet.

Stop feeling guilty for your own emotions, your own tears, and your own pain - because you are selfless, you are in fact human, and you are giving the ultimate sacrifice.

Stop Caregiver and give yourself a break – because you are generous, you are awesome, and you are remarkable in your own right.

We the jury in the case of you giving the ultimate act of selflessness - being a caregiver… find you NOT GUILTY on all accounts!

Comments

  • Mickey11
    Mickey11 Member Posts: 4 Member

    Hello.

    I'm new to cancer. But, not new to recovery from disease. I suspect that a newcomers view may be very helpful. Since, I'll soon be a non- newcomer forever, I think I better express a couple insights.

    1.) We (ACCS) should have about 7 places, in the U.S., where we (everyone) can get "screened for cancer". As an outsider, I hear, constantly, public service announcements emplOring me to "get screened". Now that I suspect I may have cancer, I am TRYing to find out WHERE to "get screened". It's impossible. It's impossible because there are at least 50 kinds OF cancer. ANd, the screening for most of them is done by different facilities in different PLAces. If the only way for someone to know where to "get screened" is for that someone to be able to tell the ACS what kind of cancer they think they HAve, then, the patient, in essence, has to be able to diagnose themSELf? ? ? BEFORE they even "get screened"?? That is developmentally delayyed. Annd, for The ACS to be telling us to "get screened" when theyy know, DAMN WELL, that we have no iDEa where TO "get screened" is borderline criminal.

    2.) At the 7 central screening facilities, there needs to be as few as possible initial screening procedures for preliminary indicators. TAKE ONE TUBE OF BLOOD and run 5 or 10 tests on it to check for all indicators of all types of CANcer. (I cannot beLIEve I am having to tell you this.) If all 10 tests come back negatuve, hip- hip- hooray! You're "screened" and we're happy to tell ya YOU DON'T HAVE CANcer. If one or more of the test results is positive for a preliminary indicator, then, we test further for that specific type of cancer. We nail this shif down, while it's still in it's womb. Instead of 4 stages, there could be 28 stages. And, we can start finding cancer while it's in stage -12. But, that ain't gonna happen if were waitin' for cancer to tell us what kind it is by what body part the truck driver thinks may have thuh cancer. WE HAVE TO NAiL it. We can't wait for it to come after us! One really bad scenario is that a person gets screened for 3, 4, 5 types if cancer only to find out they had some other type that, oopsy daisy, they DIDn't "get screened" for. What a bummer for the patient. That should NEver happen. And would never happen if we develop the above described screening facilities.

    3.) The only people who can welcome a new message board contributor to the boards (in the welcome section) are ACS board ops? Why? We should all be here to help each other and, if nothing else, say hello and welcome aboard.

    Thanks for reading this. I hope I do not have cancer. But, I kind of think I do have some symptoms. DOn't tell me to "get screened" unless you have an exact address. Thanks.

  • EpilepsyFighter
    EpilepsyFighter Member Posts: 2 Member

    This is nice that there is a Caregiver month, however does anyone feel like the focus is almost entirely on the person who is sick? My wife was diagnosed with stage 4 breast cancer about a month ago. Most everyone asks how she is doing, yet not as many ask how the caregiver is doing. It comes up once in awhile, but not nearly as much. In some ways, isn't the caregiver having a harder time as they get to live on Earth longer while their loved one gets to go to Heaven?

  • Mickey11
    Mickey11 Member Posts: 4 Member

    Sadly, I am my own caregiver. Happy to announce, I am told I do not have cancer (based on a C.T. scan of pain area.). "It's an upper respiratory infection. Take amoxycillin.". Now, I can go HELP those who do have it. Outta my way!

  • AmyCDeY
    AmyCDeY Member Posts: 2 *

    Hello there. New here. I'm headed to Colorado next week and will stay with my 77 year old mom who is embarking in her first chemo. She had double mast for triple + breast CA. Any advice on what to say or do or NOT do when she gets very angry about how she looks and when she starts losing hair? so far she feels like the surgeon did a "hack job" when she got ALL of the tumor out. Her fear and anxiety is coming out as anger right now.

    Thanks!

    Amy

  • AmyCDeY
    AmyCDeY Member Posts: 2 *

    Hi. I think it's natural for people to ask abut the cancer patient first unless you have people in your life who know that caregivers also need support. Fortunately you found this site...which is why I am here as well. As caregivers, we will support each other.