FOR ALL THE CAREGIVERS FEELING BLUE, STRESSED, OR MISUNDERSTOOD

Your post is spot on! Me, I swear if one more family member or friend makes the comment you got this you are strong I'm going to  snap.

I 100% relate to this post!! I just joined today, because I had to finally reach out to someone who could understand. It is so overwhelming to go through all of this....alone, with no other family help. Family is "there", but not really. They just don't understand the pressures of dealing with being up at all hours of the night and the mood swings, and still having to go to work. I am thankful to have finally found this site and reached out. Much love to all of you!!

GingerMay said:

Agree, can add

Original post says we can add our own, so:  people who tell me I will be OK (I'm the only one who gets to say that), people telling me my husband will be OK (do they have knowledge of the future nobody else has?), people who tell me stories of unrelated illnesses, and going through it all heartbroken and missing the relationship I once had.  

That's the hard part for me; missing our relationship.   My husband will be OK, I know that.  He is in the middle of his 5th week of treatments and we only have 2 weeks left but even thought the treatments end doesn't mean that this cancer journey is over.  It will be part of our lives, in a sense, forever.  That's what I loathe the most.  We will NEVER go back to the way it was.  It's daunting to think about and I try to not get caught up in it.  But it's there.  We have only been married for two year and I felt like our lives together were just starting.  But, what can I do?  If I wallow in the sadness and the uncertainty it will surely affect our marriage.  So when I get that way I have to remind myself that one of the lessons that I believe this cancer is teaching us is to live for everyday.  Enjoy the simple things everyday.  It's sounds simple and trite but that's how I am gettting through the 7 weeks. That and a lot of prayer.   We have been told that he has a very good chance of beating this cancer and this intense treatment will do the trick. So I pray for that outcome and that cancer never touches our lives again.  Who knows what will happen?  But, I get where you are coming from.  I am the only one that knows I will be OK.  No one can really predict that my husband will be OK, but I hope to God he will.  I am looking forward to another 20-30 years with this man.  

Many of us can identify.

What is your mom's prognosis? Would her doctor consider hospice?  Or is she still taking treatment to cure?

To MMDowns....my husband is recovering from surgery for head and neck cancer.  He did the chemo/radiation treatments in Oct/Nov 2016 and they didn't quite get all of the cancer in the anterior tongue.  He had surgery on Jan 24th and is recovering quite well physically but has a lot of fatigue.  I can so relate to your concerns about your relationship with your husband.  Cancer does change everything in a way.  Through this process I've been seeing a therapist in order to deal with my own fears and emotions.  One thing she said was to maintain some intimacy, no matter what.  I'm finding that intimacy whenever we do a feeding (he has a PEG tube) or a trach cleaning or the lymphedema exercises and massage or any other care where we sit face to face, knee to knee or can touch in some way.  You are right....enjoy the simple things of daily living.  Thanks for your post....I most definitely relate.

My husband has stage 4 colorectol that went to lung.  Since March there has been blood transfusions colorectol surgery , pneumonia .  we started chemo then he got a cold and it was halted due to white count. This Saturday morning he had projectile diaherra that was like tar. It was everywhere carpets.,floor had to call ambulance and spent 2 notes in hospital with me sleeping on recliner chair.

 I am exhausted and depressed.  I have no family as they all live across the water in England.  Hubby can not understand why I'm worried and stressed. I can't leave house for long or he's on phone even when I'm shopping. Even when I have to come home from hospital to feed our pets its 30mins each way. There is always a where are you.

I don't eat properly or any kind of a meal..just not hungery or to much effort. I've lost my concentration to even read ..

Sorry guys just woke up to a bad day it will pass.  Feel guilty feeling sorry for myself he's fighting cancer how can I be so selfish.

Thank you to everyone who posts that  reassures me I'm not alone.

I am new to this...tried finding a support group close to home, but none available that were nearby, or at the times when I wasn't with my husband (fighting bile duct cancer) getting chemo or doctor's appointments.  But every post I read I can relate to....My husband doesn't really talk about his feelings.  He doesn't even read up on his cancer, do any research, etc.  When we go to the doctor, he just complains about everything.  He is being treated at one of the best cancer treatment centers (Mayo), yet he complains about everything.  I am his sole caretaker and everything falls on me.  Luckily, I no longer work, quit last year because of a chronic pain condition....had one year to myself.  The he got diagnosed on Christmas Eve 2016.  Happy Holidays...geez I'm venting too much...Anyhow, glad to have found this forum.  I wish there were more current postings, unless I'm doing this wrong, don't see too many.  But glad to have found somewhere to commiserate...

MMDowns said:

That's the hard part for me;

That's the hard part for me; missing our relationship.   My husband will be OK, I know that.  He is in the middle of his 5th week of treatments and we only have 2 weeks left but even thought the treatments end doesn't mean that this cancer journey is over.  It will be part of our lives, in a sense, forever.  That's what I loathe the most.  We will NEVER go back to the way it was.  It's daunting to think about and I try to not get caught up in it.  But it's there.  We have only been married for two year and I felt like our lives together were just starting.  But, what can I do?  If I wallow in the sadness and the uncertainty it will surely affect our marriage.  So when I get that way I have to remind myself that one of the lessons that I believe this cancer is teaching us is to live for everyday.  Enjoy the simple things everyday.  It's sounds simple and trite but that's how I am gettting through the 7 weeks. That and a lot of prayer.   We have been told that he has a very good chance of beating this cancer and this intense treatment will do the trick. So I pray for that outcome and that cancer never touches our lives again.  Who knows what will happen?  But, I get where you are coming from.  I am the only one that knows I will be OK.  No one can really predict that my husband will be OK, but I hope to God he will.  I am looking forward to another 20-30 years with this man.  

I am a teacher too.  Last year I felt so torn about the needs at home and what my students and their families deserved from me in the classroom.  At some point I had to accept that I could only do what I could do.  I did my best and had to accept it wasn't my best.  I have to keep working.  There is no choice.  I am dreading thinking about another year starting soon when I will feel that grief about not being able to be the teacher I want to be.  I also am grieving that we will never have back what we had before this disease invaded our lives.  I think back to the minute my husband told me the diagnosis and feel like we should have had a burial for our former life together but we don't have the time or energy.  Then I stop and just accept that the only choice we have is to make the best of our new abnormal.  I try to only focus on what I can control which is how I respond to every day.  Some days I lose my focus and struggle to get it back.  You can't be mad at the person with cancer.  You can't really have a need honestly.  I hurt myself and couldn't function for a few hours.  I realized just how precarious our home life is.  I simply cannot be down physically or emotionally.  That kind of took my breath away but I just moved on because there is no other choice.  I am struggling not to think every pain, every cough, every sore throat is a recurrence because I can't impact it either way and that worry distracts me from enjoying today.  We have a follow up visit coming up.  I can't even think about it.  I can't live in dread every moment of every day so I choose not to think about it.  I cry and I am sad but I keep it to myself.  I miss being able to share that with my spouse.  I miss a lot but then I have to put on my big girl pants and enjoy what we can still share.  On my worst day, I have not lost or endured a fraction of what my husband has faced.  So, I choose.  Honestly, that part of life has not changed.  We have always chosen how to repsond to every day of our life.  It is just a far harder choice for me.  I'm struggling and really have no choice but to "make the mess the message".  I miss our relationship too.  I am glad you know he will be okay.  

GingerMay said:

Not talking about feelings

My husband doesn't talk about his feelings either.  He doesn't read up on his cancer, doesn't do any research, doesn't take notes during doctor visits.  I do ALL of that.  He recently told me about a treatment one of his doctors discussed and was surprised that I knew of it.  I think perhaps it is too overwhelming for him and his way of getting through it is to shut down to some degree.  I am my husband's sole caretaker.  I am alone in this.  My parents are elderly and declining mentally and are unable to be of any support to me.  Yesterday, father's day, was horrible.  Friends mostly shrug and never mention it.  I have been browsing these boards almost daily for a year and find support here because so many of these posts describe my experiences.  I too wish there were more current postings or more activity because most days it is all I have.     

I can't express the number of times that my very, very intelligent husband has been shocked by things that I recorded during medical visits of which he was totally unaware until we discussed it later.  When I think of all the energy he is expending to eat and and go to work and do any other daily tasks it is not surprising that he has no mental space left to process the overload of complex information presented to us at almost every visit.  Plus there were the weeks of extreme fatigue and chemo brain and medication side effects during treatment.  Right now we are focusing on buidling up his strength again.  He has no stamina yet.  We have great friends and family.  They have done their best to be supportive but I find only other caregivers really get it.  I have to filter what I say with everyone else.  On this forum I think it helps if you start a new thread when you want to vent or need support.  I got a private message of support and they gave me that hint because they only saw my post when it notified them of a response.  

soonermom said:

Missing Pieces

I can't express the number of times that my very, very intelligent husband has been shocked by things that I recorded during medical visits of which he was totally unaware until we discussed it later.  When I think of all the energy he is expending to eat and and go to work and do any other daily tasks it is not surprising that he has no mental space left to process the overload of complex information presented to us at almost every visit.  Plus there were the weeks of extreme fatigue and chemo brain and medication side effects during treatment.  Right now we are focusing on buidling up his strength again.  He has no stamina yet.  We have great friends and family.  They have done their best to be supportive but I find only other caregivers really get it.  I have to filter what I say with everyone else.  On this forum I think it helps if you start a new thread when you want to vent or need support.  I got a private message of support and they gave me that hint because they only saw my post when it notified them of a response.  

 

Very good point about expending all the energy to deal with daily life and treatments. There is no mental space for anything else.  I feel selfish and ashamed of my own ignorance sometimes.  Getting my heart broken every day as I watch my husband is torture, but I'm just a by-stander picking up the pieces for him the best I can but mostly feeling useless.