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Nobody cares how I’m doing

Parrothead1
Posts: 1
Joined: Jan 2018

My wife was diagnosed almost 7 years ago with colorectal cancer. Since it has metastasized to lungs and liver and she is stage 4. Her condition hasn’t exactly been improving in recent weeks and months and my nerves are shot to say the least.

This May sound awful but I’m not sure where else to turn. For the last 7 year’s all people care about is how she is doing and for good reason. But as a caregiver I feel lost in the shuffle. Nobody ever sits me down and asks me how I’m doing. For a long time that was ok because I was dealing with things better but I’m struggling more each day. This has been going on for years. Frankly I don’t think anyone at work would even talk to me unless it was about her. I appreciate that people ask about her, I just wish someone would ask about me. I don’t feel that I should have to be the one to reach out considering all that  have going on. So I sit here and it feels like nobody cares.

Am I wrong for feeing this way? Does anybody else fee this way?

GingerMay's picture
GingerMay
Posts: 134
Joined: Sep 2016

I don't think you're alone with the way you feel. I think caregivers are overlooked, and honestly, I mostly feel invisible.  I don't want to put myself at the center of my husband's illness.  However, it would be nice if someone once in a while asked about me.  

As caregivers our lives are impacted hugely, changed forever in many cases. It is emotionally draining to watch the love of your life suffer, depressing to think of things that are lost and the plans you made that will never be reality, and draining to put on a brave face each day.  Just wanted to say you're not alone.  Bless you.  

phuckcancer
Posts: 63
Joined: Apr 2016

I can relate. At first, I didn't even think about anyone asking me and if they did - I just said I'm doing (well, I still do) but it can be hard when a spouses family (or your family ) and friends (etc) only ask about them. As caregivers we do alot and it can be overwhelming. My suggestion is join support groups for those taking care of the loved ones and hopefulyy , at least there, you will find some support ..and here of course! :) ((((hugs))))

Twinzma
Posts: 220
Joined: Jan 2018

I was the caretakeer for my father, not cancer but his caretaker just the same. My mother just couldn't do it. There were days I just wanted to run away. When the end was nearing it was so difficult I had a breakdown. I ended up seeing a counseler and started on anti-depressents and anti-anxiety meds and it made a world of difference for me. I felt that the ONLY people who was concerned about me was the hospital and doctors staff. They would come in and bring me coffee or food because they saw I was loosing weight not caring for myself. 

Within 6 months of his passing Mom started to go downhill. We sold her house and my families house and bought a larger house with guest quarters for her. Fast foward 2 years and I have her, now my hubby newly diagnoised with stage 4 colon cancer. I am also a mother of twins. The phones are silent for days on end.

What is different this time around is I know as difficult as it is felling lost, forgotten and overwhelmed, that I am doing all I can and that's what matters. I care about me. I know who my true friends are and who are just busybodies. I also learned you need to find time for you. I wake before everyone else, make a cup of coffee, sit on my porch and just breath. You have to find your time, your peace or you will breakdown too. 

You matter and what you are doing is remarkable. I don't know you, but know that I admire you and know that you are a very special person. 

jen2012
Posts: 1607
Joined: Aug 2012

Its exhausting.  My husband had colorectal cancer for 3.5 years before he passed away.   People were there for us during his illness and then for the funeral and wake...then pretty much disappeared.  I have 3 kids, the youngest is now 6 and I have just asked one male friend if he could please spend time with him.  He has no male role models and misses his daddy terribly.  I hate having to ask, but it's not for me...

So I get it.  I have mostly a new support group of friends now...others who have lost a spouse and have young children.   It's good to talk to those who understand.   So vent away here or find a group locally.  

Sorry...hang in there.

CatPerson's picture
CatPerson
Posts: 9
Joined: Feb 2018

I go to a free Aging Center workgroup/support group that the college has once a month which is led by a clinical psychologist and it has really helped. It's mostly people in their 60's taking care of their spouses or parents (and have their own health issues) but it is a great place to get resources and vent since we're in a similar boat. Being that i'm a caregiver that also needs care myself, this is the glue that helps keep me together. I don't know what I'd do without the group. I was at my wits end before I discovered it. 

I also found local long-term care services that are covered by insurance that really helps ease the burden of 24-7 caregiving a few hours a week.

Hope you can find support and respite. Best wishes.

CancerEclipse's picture
CancerEclipse
Posts: 15
Joined: Jan 2018

Thanks for your honest and heartfelt message. Sorry you feel alone. My wife and I lived oversease for many years and then came back to the USA. We quickly realized that people here don't 'seem interested' because they don't have the personal experience to relate to what we had gone through. My wife and I have also been caregivers for each other (my wife - lymphoma 2x and now breast cancer), (esophageal cancer for me), but unless someone has gone through cancer also, it's difficult for them to identify in what we go through. My wife and I belong to a good Church where we have a very supportive couples group and they have been wonderful in their interest, encouragement, and practical support. If you're not in a church (and not every church is supportive and encouraging unfortunately) you might want to consider that as an option. Wishing you the best in 2018!

Dave

LlovesD
Posts: 11
Joined: Apr 2018

Hi Parrothead,

I just got on this site a week ago. My fiance' just had a hemmoroid removed and they found cancer. I have been in a state of panic and fear for just under 7 days. You've had over 7 years.

 Keep caring for your loved one but start living your life on the side. Your loved one knows that they have your never ending support so try not to get overwhelmed and don't feel guity to hire a little bit of help. 

I love my fiance to death and actually I think he'll be OK and not have to endure a long treatment. (Fingers crossed.) However.. he would not want me to feel the way that you do.

Please take care and join a support group for caregivers!

Much love to you,

 

Lisa

MrsBerry
Posts: 102
Joined: Dec 2017

Parrot, I hope you are hanging in there! Unless someone has been through the hell of being caregiver, they have no clue how harrowing it is. If you are still checking here, I am asking now: how are you today? I am just an internet stranger, but I care about you. ((Hugs))

MrsYo
Posts: 11
Joined: Apr 2017

I imagine all caregivers for extended periods of time, feel the same sense of loneliness, isolation and invisible.  You're not alone! HOW ARE YOU DOING TODAY?!  People really care about you, but they are not really good at showing it on every level. Those of us in the midst of it all and or know someone very close and dear can truly understand the depth of pain and sorrows the caregiver experience and actually think to check in with the caregiver.  Hang in there!  When folks ask about your wife, answer them and end it with "but I'm having a heck of time too"...listen and watch their responses....they care about you too!

 

k2oly's picture
k2oly
Posts: 13
Joined: Dec 2017

Parrothead1 - yes! that sounds so familiar. i'm fortunate to have a couple people ask about me regularly. those two actually ask about me more often than they ask about my loved one with cancer. when people ask about her, i sometimes find myself saying a little about her but it's usually about the challenging relationship stuff. that is, i somehow turn it into complaining about how *i* am feeling. i don't like that at all. i don't like complaining or changing conversations from being about her to being about me. but i guess my frustrations get pent up and come out at any opportunity.

do you have any friends who you feel comfortable reaching out to? who you could say something like "i need to vent a little bit to someone who won't judge me for it. can i buy you lunch in exchange for your time listening to me vent?" of course, some people wouldn't understand and might consider you selfish for caring about yourself at a time like this. but if you don't take care of yourself, you'll be less help for you wife. you know how on airplanes they say you should put your own oxygen mask on first? if you stop breathing, you can't really help the person next to you. well, that's true now, too. in order to be helpful to your wife, you've gotta be well-rested, strong, and feeling as good (physically and mentally) as possible.

recently an oncology social worker* told me that of all she's seen through the years, if someone told her she had to either get cancer or be the caregiver for a loved one with cancer, she said that she'd rather be the one with cancer because being the caregiver is so much harder! even though my loved one is in stage 4 and has far outlived her original prognosis (and revised prognoses, too), i can see this social worker's point.

* have you looked into finding oncology social workers in your area? i found quite a few that provide their services at NO COST! this as been extremely helpful for me. even if i just make an appt to vent, i always feel better after talking with someone about my frustrations.

being a caregiver is darned hard work if you really, truly love the person. (my person is my best friend. she has no family, so i'm "it" for her. i stepped into the role happily. we've been great friends for 20 years and just before her diagnosis we bought side-by-side houses because we both like living alone yet want someone nearby as we get older. it's so nice to have someone ask if they can run to the store for you and to feel comfortable saying "yes" because you know it's convenient for them to do so.) anyway, she's my best friend. we're human so we do butt heads sometimes. but i've found that since her diagnosis last year i always put her wants and needs first. initially it wasn't a big deal. in most instances, i thought it was silly to put MY needs first since SHE is the one counting her remaining days. why not give her what she wants? my own wants/needs seemed miniscule in comparison. but after the months dragged on, it became a problem for me to continue putting her first and setting aside my own wants and needs. and the worse the cognitive issues get, the more i see that she's making more work for me. so i end up resenting the fact that she's putting money, time, and effort into doing things that i'll have to re-do later... i guess i'm saying that the longer it goes on, the harder it gets unless ya find coping mechanisms.

keep coming back to these forums as long as you need them. this is my first post, but i sometimes come on and read postings just because i feel less alone. it gives me hope that *i* will get through this.

Letmein
Posts: 1
Joined: May 2018

My husband has been dealing with Myelodysplastic Syndrome for the last 3 years.  He just had a "Stem Cell Transplant" in April 2018. We just found out it was unsuccssful and he now is dealing with an infection and back in the hospital for the 3rd re-admittance.  I am his only care-giver at this time.  I have been feeling very tired and depressed lately.  Having to drive 45 min to hospital every day is taking a toll on me.  Some days I feel angry about being the only care giver and I feel guilty becauce I know if it was me my husband would be there for me.  I just feel I could use some help with driving and don't know who to ask.  I do agree everyone does ask about the patient which I totally understand, but they do not understand how the caregiver feels.  This is my first post also.  Its good to hear I am not the only one going through this.  

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

I was the solo caregiver for my spouse. I think there was a picture of me in the dictionary by the definitions of "exhausted" and "depressed." What someone suggested to me was to make a list of specific things I needed help with, so that when someone said the proverbial, "If there's anything I/we can do, just let me know," I'd pull out the list and say, "As a matter of fact, I'd love to have someone [whatever]."

The American Cancer Society (the folks who maintain this website) have resources. Go to the top of the page and click on the "Cancer.org" link. You'll find all sorts of resources there.

Also, if your husband is in the hospital, he'll probably have a case manager (and may also have one through his health plan and/or medical group). Give them a call.

Before you started caregiving, were you or your hubby active in a church or other spiritual organization? Or maybe in a fraternal organization or a hobby or special interest group? Even if those groups don't provide the sort of help you need at the moment, their contact persons may very well know of some that do. Yeah, I know: Making phone calls -- when you're ready to fall face-first into your bowl of raisin bran first thing in the morning -- is hard work. But you'll probably be able to connect with someone who's helpful that way. 

All the best -- keep us posted.

jorola's picture
jorola
Posts: 242
Joined: Mar 2016

for this site for help at 1-800-227-2345. the lines are open 24/7.

GNT1981
Posts: 11
Joined: Jan 2019

I went through it with my sons being my wifes caregiver during her stage 4 cancer fight that only lasted 2 months. But it was 2 grueling months of almost "battlestations" type mentality. Through it all it was about her as it should be but we had hospice nurses and aides and social worker coming and they provided for me what I needed-talk and concern for ME. Yes we do need it- we require it but it is evasive. I will also say this that once my poor angel passed- the silence from her entire family has been deafening. After being the focus of "hows she doing" for so long-that is now gone and so seems unfairly their attention to me? The survivor all alone at age 64 after we had retired to live oh 20 or so years more in our beautiful retirement home. We were shocked and destroyed very quickly and in a few weeks Valentined Day our anniversary clock stops ticking for good stuck at 37 years!

You know the strange thing now is when I am asked "how ya doing"  I always take the attitude of  "please dont ask if you cant deal with my response". I try to always maintain a truthfful reply less forced  "happy face/lie". You really want to know-well here goes.

But what is happening to you and your feelings are all normal. I never had the time or personal drive to come to a place like this till it was over-its now 5 months and though I have hospice counseling. Its just still impossibly hard.

The hardest and toughest part will be your own mind. For me is it the family does not care about me anymore? Or are they afraid to talk and or have that "move on" already attitude? That will be playing on you just as it is now about feeling ignored as you go about your caregiving duties.

Just know you are not alone and you are doing the best you can and those who matter most appreciate it.

God Bless and always be as strong as you can be.. and not be afraid to not be strong at times and cry too!

Yep its all normal.

kaykow
Posts: 4
Joined: Feb 2019

My husband was diagnosed with squamous non small cell lung cancer. He has had surgery and chemo as treatment. Since his diagnosis I am overlooked. No one asked about me. No one cares that I haven't taken care of me. There is only the two of us. I work. I only get a certain amount of time off. That time off has been spent on him.  Even though his treatment has ended, there are still a lot of follow up appointments, scans, etc. I have had unrelenting stress since his diagnosis.

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