Dont know how much more i can take

8longyrs

Hello everyone.

I guess i will start my saying i am 46 and i am a caregiver to my husband 48 we've been married for 24 years with 2 children and the last 8 have been hell. I work full time, i take care of the husband and the kids and everything in the house like cleaning, cooking, yard work, pay the bills, when i say i do eveything i mean everything down to cleaning the gutters. And yes in the beginning i had help but after so many years you learn who you can count on and who you cant. and there arent many left to count on anymore, I dont know if anyone else on here has lost friends but we have, i really dont know why but i guess some people just cant handle someone being sick. Over the last 8 year everything has changed i dont know how to make it stop. What i mean by things have changed is my feeling towards my husband, from a 2 income family making 6 figures to a 1 income making less then 1/2 of what we used to make with the same bills. I am lonely, depressed, stressed like you would not believe, confused, frustrated, annoyed, hurt, mad, sad, and scared of what the further holds. For the last 8 years i did a good job of holding my family and myself together but recently it feels like it is getting harder and harder each day.

This is what has been going on with my husband, he was told he had oral cancer of the  tongue and neck in 10/05. I wont get into a long drawn out story but in the last 8 years he has had chemo, radiation, was in icu for a month with a  blood infection from his port, pneumonia many times, kidney failure for 6 months, developed chronic pancreatitis, avascular necrosis, 20 total surgeries including 2 hip and 2 shoulder replacements, feeding tubes which he is on right now, he has dysphagia he cant eat food. He just got out the hospital again after a month stay. His pancreastis is causing major problems to where they put stents in his pancreatic and bile ducts but that is a whole new problem they came out after 2 weeks they caused an infection. i cant even count the number of times he has been in the er and or admitted to the hospital in the last 8 years it to the point that all the nurses and doctors know us my first name and we know them by first names, its actually pretty sad when you think about it the hospital is like our second home.

I dont know how much longer i can be the strong one or how much more i can take everyday brings a new problem with my husband and i am getting to the point i dont want to deal with it anymore, i just want it to go away and turn back the clock to 8 years ago, but i know thats not gonna happen. We have not been a husband and a wife in probably 5 years we have not shared a bed in as long he sleeps in a hospital bed in the living room. He is more of a patient to me then a husband. I know i took vows when i married him and i want to stick to those vows but like i said i dont know how much more i can take or how much longer i can last. I hope i dont sound like a horrible person but this is how i am starting to feel and am scared.

I feel like i am the only one who feels this why and i feel horrible about it.

Noellesmom

not the only one

8longyrs, I can assure you that you are not the only one who feels this way.  Eight years, seven years, heck, ONE year as a caregiver can be draining on anyone.

What I am hearing is that you are TIRED, girl!  How in the world could you NOT be?  You aren't Superwoman, for goodness sakes!

You work full time, have 2 children and a husband - just THAT is exhausting!

I know you are going to think I'm crazy but I am wondering what, if anything, you are doing for yourself in all of this.  Do you see a therapist or counselor or minister or do you have a best friend who will just let you dump everything to her over a cup of coffee once a week or so?  If not, you really need someone to talk to - someone you can count on.

You need to come here and vent - we all do that from time to time.

Get a journal and for just fifteen minutes a day write and let it all out.

Take a walk around the block - the house won't burn down while you do that.  It's free and it is stress relief.  If you aren't already doing that, you won't believe what a difference it can make to walk.

If you want to talk to me via email I'm glad to respond.  I usually check here once a day.

Let us hear more from you.  Sending bunches of hugs your way.

8longyrs

Noellesmom said:

not the only one

8longyrs, I can assure you that you are not the only one who feels this way.  Eight years, seven years, heck, ONE year as a caregiver can be draining on anyone.

What I am hearing is that you are TIRED, girl!  How in the world could you NOT be?  You aren't Superwoman, for goodness sakes!

You work full time, have 2 children and a husband - just THAT is exhausting!

I know you are going to think I'm crazy but I am wondering what, if anything, you are doing for yourself in all of this.  Do you see a therapist or counselor or minister or do you have a best friend who will just let you dump everything to her over a cup of coffee once a week or so?  If not, you really need someone to talk to - someone you can count on.

You need to come here and vent - we all do that from time to time.

Get a journal and for just fifteen minutes a day write and let it all out.

Take a walk around the block - the house won't burn down while you do that.  It's free and it is stress relief.  If you aren't already doing that, you won't believe what a difference it can make to walk.

If you want to talk to me via email I'm glad to respond.  I usually check here once a day.

Let us hear more from you.  Sending bunches of hugs your way.

cant take it

Thank you Noellesmom for responding. I am more then tried I am mental and phyiscially EXHAUSTED. To answer your question to what do i do for myself i just started walking again i love to walk but it is hard to find the time when the hubby is in the hospital. He's been home for 10 days and i did get out and walk twice. I usually end up sitting at the river and crying. and i do read a lot thats about it. Do i talk to anyone no not really i do have a best friend but she is also a caregiver for her mom so yes we talk, but i hate to dump on her about the more personal stuff so i dont talk about that to her. This actually the first time i even considered putting my feeling into words to someone else i usually just keep them bottled up and have my crying moments when i am alone. And as i am sitting here typing this he is in the middle of a pancreatic attack and in about an hour i will be in the ER and he will be mostly likely admitted for God knows how long this time.

The sad thing is i am mad at him because he is having another attack and i know he cant help it and i know i will never say anything to him about having one i will just go along with the routine and deal with it like i always do. I am also sitting here typing this crying. I dont want to do this anymore i really dont and i dont know what to about how i am feeling. I dont feel like sitting in the er for God knows how long.

sorry about the complaining. but i have to go am off to the ER

 

 

Noellesmom

8longyrs said:

cant take it

Thank you Noellesmom for responding. I am more then tried I am mental and phyiscially EXHAUSTED. To answer your question to what do i do for myself i just started walking again i love to walk but it is hard to find the time when the hubby is in the hospital. He's been home for 10 days and i did get out and walk twice. I usually end up sitting at the river and crying. and i do read a lot thats about it. Do i talk to anyone no not really i do have a best friend but she is also a caregiver for her mom so yes we talk, but i hate to dump on her about the more personal stuff so i dont talk about that to her. This actually the first time i even considered putting my feeling into words to someone else i usually just keep them bottled up and have my crying moments when i am alone. And as i am sitting here typing this he is in the middle of a pancreatic attack and in about an hour i will be in the ER and he will be mostly likely admitted for God knows how long this time.

The sad thing is i am mad at him because he is having another attack and i know he cant help it and i know i will never say anything to him about having one i will just go along with the routine and deal with it like i always do. I am also sitting here typing this crying. I dont want to do this anymore i really dont and i dont know what to about how i am feeling. I dont feel like sitting in the er for God knows how long.

sorry about the complaining. but i have to go am off to the ER

 

 

believe it or not

Your anger is a healthy sign and that it is directed to your husband is not unusual.

I do hear what you are saying and have been a primary caregiver myself for many years to different family members, including my husband.

You have to find someone to talk to and if right now this is the only place you have, that's fine.  You just have to talk.

Again, we can email from this site if you would like.

Hugs.

Christine135

It's Ok To Be Angry

Everything you knew is gone. What was normal is now abnormal and the life you once had is forever. I was 47 when my husband of 10 years was diagnosed with Stage IV esophageal cancer in April 2012. The day we were told was the day before his 47th birthday. On April 24, the day before our wedding anniversary he was in surgery for having a power port and G-tube put in..power port for the chemo and G-tube so he could eat and stay alive. On August 21st, he was in surgery again to have his entire esophagus removed and his stomach stretched to make the new one. He came homw September 7th.

We ordered a sleep number bed because he will never be able to lie flat so he has a single bed that he can adjust. I put next to his bed my bed, a full size regaular bed so we can at least sleep in the same room together. For months prior to surgery he slept on the couch because he was hooked up to his IV pole and needed to have his head elevated. After surgery he got the new bed but we still slept in seperate rooms because our two dogs sleep with us and we could nor tun the chance of one of them steppting on his chest which had a large incision in it. It was not until 4 months ago we are able to sleep in the same room because now the dogs are aware of my husband's incision.

Every feeling you feel is normal as I have felt them too. There are days where I am ok and there are days when i just want to run away and as fast as I can but I soon bring myself back to reality that running does not take away the situation. Being the primary caregiver is beyond hard..words can't describe it but if I run away then I leave my children behind to deal with things and I can't do that..so I press on. I don't know how but I do. 

My husband and I have not been intimate in over a year because he can't. He is still weak and thin and may never ever regain enough of himself to withstand being intimate and I am ok with that. It took a lot of soul searching to decide what I would or would not do and I chose to stay. I decided I would rather be with my husabnd, in what ever condition he is in than not have him and you need to decide that for yourself. Only you can do that and if you chose not to stay, then you need to find your inner peace with that. If you decide to stay with him then you have to find your inner peace as well. 

It is not easy by any means..sometimes it is harder on us then on the patient for they soon learn how to cope with their illness..caregivers may never be able to learn.

Don't be too hard on yourself..we all have been in your shoes and you are NOT alone!!

Christine 

Elehcim

I am So Glad I found this post

Hello,

My husband was diagnosed with GBM almost 1 month ago.  I do not know how you have endured 8 years.  You are such a very special person to give the care and provide for your family like you have.  I have only been at this for 1 month and I have a very negative attitude.  My husband says let go and let God.  Yes I know that God is in control, but i am dealing with grief already.  He was told again yesterday that he may have 6 months.  His cancer is very close to his brain stem and the doctors are waiting for the swelling to go down before radiation/chemo.  He is on dex and he says that I am satan.  I guess we all grieve the life in which we did live, the friends we did have.  I am going through the phase right now of the silence.  Only a few people call and many said they would like to help, but where are they.  It is very lonely, it is very hard not to be depressed especially when you are not taking time for yourself.  How do we do this without feeling guilty?  I have 3 small children that absolutely do not understand, they just hear my husband yell at me and yell at them.  My heart is broken.  When I said good bye to my husband before his crainiotomy I said good bye to the man I married.  His personality has changed so much, I can never do anything right.  I try to listen to christian radio and read emotionally supportive books, but I always walk away dissappointed that I don't feel any better.  It is hard to laugh and very easy to cry.  I am writing about the special moments that my husband and I have, it may be just a hand hold or a special hug.  I have a message saved on my phone from about 6 weeks ago and I play it every day, I think that hearing that soothing calm voice I once had brings me joy.  I cry, boy do I cry.  I ask God why, why this, why him.  I know that I am just rambling, but it does help.  Your story has brought encouragement to me.  I will pray that someone comes into your life that can help you in your day. 

Peace_Hope_Love

I have found the mind is where my battlefield is, not the chores

Hi ... my first post.

 

So, as a caregiver, I have found when I get most irritated or sad or disgruntled, it is due to the conflict within me.  The chores are there and I am the one responsible now for tending to them.  However, I can procrastinate or be super anal about them.  The mental aspects of care giving, the unknowing, the confusion, the anxiety, ect ... I find the truth about me and my struggles there.   Inside my mind it starts and I allow it to reach my heart.  Then "it" hits the fan over a hangnail or a late bill or the weather ... whatever.  I have learned to try to slow down, settle my mind & body and see what's up with me.  I cannot do a single thing about cancer.  It is what it is and it's killing the love of my life right before my very eyes.  Me, that I can control. I can try to stop those thoughts I have (we all share), I can try to arrest them ... then they cannot destroy who I am, who I can be.  I am many things to many people, i chose not to let cancer kill me too, not today.  Today I will text with my 18 year old son, I will call my dad and help him set up his new TV, I will do some laundry, I will hope for a cure, I will face the reality of today.  I chose to remember yesterday, not dwell on it.  I chose to plan for tomorrow, not get lost in it.  I have learned to be right here in the moment.  I will do what I can today, I will love whom I love, I will cry if I feel like it, I will holler if necessary, I will laugh at something funny, I will live.  I hate cancer, I love my man~the two are separate in my eyes & mind~

Noellesmom

Peace_Hope_Love said:

I have found the mind is where my battlefield is, not the chores

Hi ... my first post.

 

So, as a caregiver, I have found when I get most irritated or sad or disgruntled, it is due to the conflict within me.  The chores are there and I am the one responsible now for tending to them.  However, I can procrastinate or be super anal about them.  The mental aspects of care giving, the unknowing, the confusion, the anxiety, ect ... I find the truth about me and my struggles there.   Inside my mind it starts and I allow it to reach my heart.  Then "it" hits the fan over a hangnail or a late bill or the weather ... whatever.  I have learned to try to slow down, settle my mind & body and see what's up with me.  I cannot do a single thing about cancer.  It is what it is and it's killing the love of my life right before my very eyes.  Me, that I can control. I can try to stop those thoughts I have (we all share), I can try to arrest them ... then they cannot destroy who I am, who I can be.  I am many things to many people, i chose not to let cancer kill me too, not today.  Today I will text with my 18 year old son, I will call my dad and help him set up his new TV, I will do some laundry, I will hope for a cure, I will face the reality of today.  I chose to remember yesterday, not dwell on it.  I chose to plan for tomorrow, not get lost in it.  I have learned to be right here in the moment.  I will do what I can today, I will love whom I love, I will cry if I feel like it, I will holler if necessary, I will laugh at something funny, I will live.  I hate cancer, I love my man~the two are separate in my eyes & mind~

Exactly!

Good for you, PHL!

qcsuzie

Feel your pain

Do not feel bad.  I am in a similar but not as dire situation.  My husband has been 30 months sincve his stage 4 diagnosis and the last two have been horrendous.  I too work full time at what I may say is a very stressful job.  It is a sad state of affairs, when you go to work sick, because it is the only place you can get some relieve.  

 

I tried a support group twice and it is just not for me.  I used to sew, but everytime I go upstairs to sew now, he gets jealous and is constantly calling me. I have taken to going to the gym at 5:00 AM for some me only time.  I know I got angry when his nurse told him not to feel bad ablut the stress he puts the rest of the family under, that he is the one fighting for his life. I must say that may have been comfroting for him, but when he told me that I was exceedingly angry at the nurse.

I wish there were more support services easily found especially for us that have to work in order to afford the insurance that     our spouse need.  

Not that I am much help to you right now, other than an understanding ear.   

 

Viking51

qcsuzie said:

Feel your pain

Do not feel bad.  I am in a similar but not as dire situation.  My husband has been 30 months sincve his stage 4 diagnosis and the last two have been horrendous.  I too work full time at what I may say is a very stressful job.  It is a sad state of affairs, when you go to work sick, because it is the only place you can get some relieve.  

 

I tried a support group twice and it is just not for me.  I used to sew, but everytime I go upstairs to sew now, he gets jealous and is constantly calling me. I have taken to going to the gym at 5:00 AM for some me only time.  I know I got angry when his nurse told him not to feel bad ablut the stress he puts the rest of the family under, that he is the one fighting for his life. I must say that may have been comfroting for him, but when he told me that I was exceedingly angry at the nurse.

I wish there were more support services easily found especially for us that have to work in order to afford the insurance that     our spouse need.  

Not that I am much help to you right now, other than an understanding ear.   

 

I feel you

Sorry you are going through that. It's a natural emotion to go through anger and don't let anyone tell you different. Some people deal with it in different ways. For my dad it was turning to the bottle and expressing his anger in my moms denial of her cancer, my brother took an assignment in Africa for eight months, my sister ran too. I have been through so much so im stronger and me and my mom had a very deep connection so I stayed and knew in my heart that things were serious. I love my mother so much and I felt so guilty for getting mad at her in the end when she couldn't tie her shoes or walk up the stairs. It was the absolutely hardest time in my life. But I have learned to let that guilt go because my anger, sadness, denial, frustrations were based on my deep love for her and going through that horrific time. Don't ever beat yourself up. Not many people are even close to as strong as you are. It's soooo hard

Diane m

Viking51 said:

I feel you

Sorry you are going through that. It's a natural emotion to go through anger and don't let anyone tell you different. Some people deal with it in different ways. For my dad it was turning to the bottle and expressing his anger in my moms denial of her cancer, my brother took an assignment in Africa for eight months, my sister ran too. I have been through so much so im stronger and me and my mom had a very deep connection so I stayed and knew in my heart that things were serious. I love my mother so much and I felt so guilty for getting mad at her in the end when she couldn't tie her shoes or walk up the stairs. It was the absolutely hardest time in my life. But I have learned to let that guilt go because my anger, sadness, denial, frustrations were based on my deep love for her and going through that horrific time. Don't ever beat yourself up. Not many people are even close to as strong as you are. It's soooo hard

I know how you feel.we have

I know how you feel.we have been married 26 yrs.i  also have no friends or family,somehow thedisappeared. So I take care of my husband on his bad days,along with raising my grand boys and keeping house.The only time I have for myself is when everyone is in bed,then I can get in the tub and ,et all the rewards and frustration out.My grand boys try to help,they are10 and11 but I want them to be kids not caregivers.So I know how it is I really have no intimacy either as they have removed his testicles and cannot perform but I'm so tired at the end of the day I don't care anymore.As long as I still have my husband thata all that matters.I don't want to think about not having him around sick or not.That is what I cannot deal with

confused902

I know the feeling

I read your post and I felt like you were writing about me. OMG we are going through the same thing. I wish I could give you the magic answer but I don't know what to do either.

If you ever want to talk let me know.

 

Lisa

Tweety1480

It's a lonely journey

My husband has had cancer for over a year now.  We have been through it.  There were times I didn't think I would make it.  I got so tired physically, mentally, emotionally.  I couldn't tell others how bad it was with me.  I could and would always tell them about him when they asked.  I always put on that face that people want to see, that mask of strongness and "i'm fine".   People get tired of asking, or showing any concern, of coming around.  I have had resentment and lots of it for others who could have made a difference for me, just by being here.  I began to resent the  happiness of others.  To see or hear someone tell me how wonderful life was made me angry.  But I tried to keep all that to myself.  I too went off to cry and pray many many times.  His family calls, but there's no relief for me.  I haven't left him since he became ill.  I wonder at times, is it me or is it them that has a problem.  Should I expect any one of them to give me a break?  They go on with their lives and life is normal for them but our lives have changed forever and keeps getting worse.  We have thousands of dollars in medical bills that we can't pay.  I worry about him I worry about the bills, I do everything that has to be done.  I spent days on the phone with the debtors making arrangements to pay on the bills and money is already stretched so don't know how we will meet the arrangements to try to pay the medical bills, and it's not ending soon as he requires more and more care.  It's lonely, it's a lonely journey, no one should have to go alone. 

grandmafay

Tweety1480 said:

It's a lonely journey

My husband has had cancer for over a year now.  We have been through it.  There were times I didn't think I would make it.  I got so tired physically, mentally, emotionally.  I couldn't tell others how bad it was with me.  I could and would always tell them about him when they asked.  I always put on that face that people want to see, that mask of strongness and "i'm fine".   People get tired of asking, or showing any concern, of coming around.  I have had resentment and lots of it for others who could have made a difference for me, just by being here.  I began to resent the  happiness of others.  To see or hear someone tell me how wonderful life was made me angry.  But I tried to keep all that to myself.  I too went off to cry and pray many many times.  His family calls, but there's no relief for me.  I haven't left him since he became ill.  I wonder at times, is it me or is it them that has a problem.  Should I expect any one of them to give me a break?  They go on with their lives and life is normal for them but our lives have changed forever and keeps getting worse.  We have thousands of dollars in medical bills that we can't pay.  I worry about him I worry about the bills, I do everything that has to be done.  I spent days on the phone with the debtors making arrangements to pay on the bills and money is already stretched so don't know how we will meet the arrangements to try to pay the medical bills, and it's not ending soon as he requires more and more care.  It's lonely, it's a lonely journey, no one should have to go alone. 

Hard

Being a caregiver was one of the hardest jobs I ever had. My husband fought his cancer for 6 years before his death So I have some understanding of what you are going through. It wears you out both physically and mentally. I found that people did want to help, but they didn't know how. Have you tried asking people to came visit to give you a break? Then you might be able to take a walk or meet friends for coffee. You do need to take care of you. Since I am not in your shoes, though, I can't tell you how to do that. Know that many here have been in similar positions. You are not alone. Take care. Fay 

cmsoxi

Your Not The Only One

Hi

My story is similar, but my husband started out with other medical issues and ended up with Lung Cancer.  I am feeling the same way as you are and I also feel guilty about feeling this way.  My husband and I have been together 29 years this year, we have two daughters 20 and 26.  We have actually been married only 3 years and he became sick 2 weeks after. He never recovered and now has small cell Lung Cancer.  I also work full time and also do all the work at home.  His personality has changed due to all the medication he has been on and still on, and not for the better.  We cannot have a normal conversation anymore without arguing.  I feel th only way not to argue is to just not talk to him.  I more than anyone know how much he has gone thru and the tragic part is he was actaully on the recovery road from all his previous medical issues, and making plans to return to work when he was diagnosed with the cancer.  Even his doctors were speachless.  I am more than happy to take care of him and do what ever he needs but he seems to reject my help and shuts me out.  When I try to talk to him about it, the says I'm being selfish one and it's all about me!  I feel I am suppose to be able to handle this all myself and not complain, but I spens so much time angry and frustrated and tired of the never ending work!  I cry alot and have to force myself to stop or I am afraid I never will!  I feel very alone as anyone I try to discuss it with immediatley says i have to be strong and understanding!  I am tired of being strong,  I was strong thru my dads stroke and death, I was the strong one thru my mothers cancer and death, I was strong thru my own breast cancer and treatment.  I am tired of being strong!