caution: complaining caregiver; proceed at your own risk.

cheatinlil

Well here goes

Amidst the posts with people grieving over their loved one, I’m making a daring move to grumble and complain.  I’m TIRED.  I’m just tired.  My husband is doing good on his new chemo pills.  He is stage 4 and has been for almost 3 years now.  He has been off work for a year and we are thinking he will not go back.  He gets Social Security Disability.  He takes 4 hours naps a day but he is up doing things for himself.  He just can’t do his labor intensive job. 

The problem is I was a single mom of 3 kids for 11 years. I got 2 of them raised and out of the house.  Met my wonderful husband, and then there were 3: me and him and my son.  11/2015 stepdaughter came to live with us.  We are in a custody battle just so we can stop paying bio mom child support.  I’m overwhelmed with the financial burden.  I can do it, I really can.  But the 3 people I live with have no concept of finances.  I’m on my own.  Thankfully I’m good at it.  But I don’t want to have to tell my husband and kids, no we can’t afford that.  It’s hard.  I don’t want to point out, that I’m the only one working, that we have medical expenses, that we are paying child support for a kid that lives with us.  We really aren’t struggling.  All our bills get paid.  I have about $8,000 in debt (credit card and student loans) and no savings.  But we really are paying all our monthly bills.  We have 4 new smart phones that I regret getting but I can’t go back I can only go forward and make better financial decision on my own.  If I complain about the finances, my husband blames himself and says he would be better off dead. I don’t want that.  I want him here.  I just want them all to be more respectful about the finances, and not ask for more new things.  I have to get stronger about saying NO. 

I want to leave my job and go somewhere else, but I can’t.  I already have a good reputation there.  I can take FLMA (unpaid time off) when I need to take care of my husband.  Plus in July I will b e carrying all 3 of them on my insurance.  I really love them all dearly and don’t want to complain.  I just want someone to take care of me.  I’m tired.  I went for an overnight girl’s night in December.  I go jogging, I go to yoga, I just started 10 minutes of meditation a day a week ago.  So I do take care of myself.

And I know it is going to get  a LOT worse.  I just wanted to vent.  I’m just tired. 

Noellesmom

I hear you

This is a hard row to hoe as we say here in the South.  

When your family wants something you think is too expensive just tell them you need to check the budget.  Let's you decide after giving careful consideration.  Maybe you just need a few minutes to come up with a less expensive alternative that works.

And your husband can stop being manipulative with his 'better off dead' comment.  

My husband is a six year survivor of throat cancer but is in very poor health. 

Please continue to take care of yourself because this could go on a very long time.  Find your rhythm.

cheatinlil

Noellesmom said:

I hear you

This is a hard row to hoe as we say here in the South.  

When your family wants something you think is too expensive just tell them you need to check the budget.  Let's you decide after giving careful consideration.  Maybe you just need a few minutes to come up with a less expensive alternative that works.

And your husband can stop being manipulative with his 'better off dead' comment.  

My husband is a six year survivor of throat cancer but is in very poor health. 

Please continue to take care of yourself because this could go on a very long time.  Find your rhythm.

Thank you Noel 
I'm also in

Thank you Noel 

I'm also in perimenapause.  I like your comment  : find your rhythm.  I wish I knew how long.  We go for mri in may and scans again in August.  I feel like I'm being taunted. He does great and I get excited. Then he gets sick and I get scared.

Noellesmom

cheatinlil said:

Thank you Noel 
I'm also in

Thank you Noel 

I'm also in perimenapause.  I like your comment  : find your rhythm.  I wish I knew how long.  We go for mri in may and scans again in August.  I feel like I'm being taunted. He does great and I get excited. Then he gets sick and I get scared.

Welcome to scanxiety

For how long...I would count on forever and if you get a reprieve, rejoice!

michelletboyer

I'm tired, too, and I

I'm tired, too, and I understand. I'm caring for my mother right now, and I'm so worried about work and finances and watching her slip away. I just moved her to live with me, and I thought we'd have a little more time to talk and reminisce, but her cancer is aggressive and I've seen a decline n the three weeks she's been here.  She sleeps pretty much all day now. I'm glad she's comfortable, though.

One thing I did after my divorce to battle my card debt was to work with a credit counseling non-profit agency. I'm midway through a four year plan to get rid of a big burden. It is scary to start, but because of it, I've been able to accrue a little savings, which helps a whole lot when I start getting anxious. It might be something to look into.

Noellesmom

michelletboyer said:

I'm tired, too, and I

I'm tired, too, and I understand. I'm caring for my mother right now, and I'm so worried about work and finances and watching her slip away. I just moved her to live with me, and I thought we'd have a little more time to talk and reminisce, but her cancer is aggressive and I've seen a decline n the three weeks she's been here.  She sleeps pretty much all day now. I'm glad she's comfortable, though.

One thing I did after my divorce to battle my card debt was to work with a credit counseling non-profit agency. I'm midway through a four year plan to get rid of a big burden. It is scary to start, but because of it, I've been able to accrue a little savings, which helps a whole lot when I start getting anxious. It might be something to look into.

Your mom

Is blessed to have you.  

Making plans to move ahead with your life is such a positive, affirming thing to do.  Good for you, Michelle.  Divorce is so difficult.

Take care of yourself.

cheatinlil

michelletboyer said:

I'm tired, too, and I

I'm tired, too, and I understand. I'm caring for my mother right now, and I'm so worried about work and finances and watching her slip away. I just moved her to live with me, and I thought we'd have a little more time to talk and reminisce, but her cancer is aggressive and I've seen a decline n the three weeks she's been here.  She sleeps pretty much all day now. I'm glad she's comfortable, though.

One thing I did after my divorce to battle my card debt was to work with a credit counseling non-profit agency. I'm midway through a four year plan to get rid of a big burden. It is scary to start, but because of it, I've been able to accrue a little savings, which helps a whole lot when I start getting anxious. It might be something to look into.

michelletboyer,
I'm sorry you

michelletboyer,

I'm sorry you are here.  Good job getting a saving plan in place.  Stay strong.  You are not alone.  HUGS!

phuckcancer

I can only imagine how

I can only imagine how exhausted you are. Emotionally and Physically. I wish I had some great advice but I know sometimes you just need to vent...and that's what we are here for

 

((((hugs))))

cheatinlil

phuckcancer said:

I can only imagine how

I can only imagine how exhausted you are. Emotionally and Physically. I wish I had some great advice but I know sometimes you just need to vent...and that's what we are here for

 

((((hugs))))

thank you phuck I love

thank you phuck I love your name.    I'm doing better.  Sunday night I woke up at 10:00 p.m. and couldn't go back to sleep until 1:00 a.m.  but last night i slept good.  A good nights rest can be good medicine. 

Tatertot121

Why am I resentful?

Hello,

I have never said this out loud to anyone. I feel If I dont speak out I will explode but saying this makes me feel like I am a horrible human being. How can you resent your husband for being terminally ill? Who does that?

My husband was diagnosed with rectal cancer in January 2015, our wedding was in February 2015. So being a newlywed was challenging enough but having a sick husband was something entirely different. I took charge, I was there every Dr appointment, every infusion, lived at the hospital for a month when his health worsened. I held a full time job, paid the bills, did the house work, took care of the pets and provided wound care when his surgery sight became infected. I was everything for a year and a half. He went into remission which lasted a whopping 4 months and this time it is terminal. So here we are going on year two and I'm back to being everything. When we got married I new this was going to be hard and there were going to be a lot of sacrifices and I have excepted that. Why am I so angry? I'm exhausted. I work 10+ hr shifts I get home I feed the pets, cook dinner and clean up the house by the time im done I have to go to bed to do it again tomorrow. I know my husband is sick, he is still fully functional, and healthy enough to go places and do things. Except for any housework. He sits in his game room and smokes pot and plays video games all day. He quit his job shortly after his second diagnoses so he has 24hrs a day to do anything and he chooses to play video games. I get no help, he is unsupportive of me and my needs, he buys whatever he wants while Im not supposed to spend the money I work for because he says we cant afford/need it. I have no outlet, no friends and I cannot go anywhere or do anything unless it revolves around him. But if I get mad or upset then im the jerk for being angry at a dying man....... Im lost and im finding myself withdrawing from him. We have a very limited  amount of time left together and this is not how I want to spend it. Is this normal or am I being petty and selfish?

GingerMay

Tatertot121 said:

Why am I resentful?

Hello,

I have never said this out loud to anyone. I feel If I dont speak out I will explode but saying this makes me feel like I am a horrible human being. How can you resent your husband for being terminally ill? Who does that?

My husband was diagnosed with rectal cancer in January 2015, our wedding was in February 2015. So being a newlywed was challenging enough but having a sick husband was something entirely different. I took charge, I was there every Dr appointment, every infusion, lived at the hospital for a month when his health worsened. I held a full time job, paid the bills, did the house work, took care of the pets and provided wound care when his surgery sight became infected. I was everything for a year and a half. He went into remission which lasted a whopping 4 months and this time it is terminal. So here we are going on year two and I'm back to being everything. When we got married I new this was going to be hard and there were going to be a lot of sacrifices and I have excepted that. Why am I so angry? I'm exhausted. I work 10+ hr shifts I get home I feed the pets, cook dinner and clean up the house by the time im done I have to go to bed to do it again tomorrow. I know my husband is sick, he is still fully functional, and healthy enough to go places and do things. Except for any housework. He sits in his game room and smokes pot and plays video games all day. He quit his job shortly after his second diagnoses so he has 24hrs a day to do anything and he chooses to play video games. I get no help, he is unsupportive of me and my needs, he buys whatever he wants while Im not supposed to spend the money I work for because he says we cant afford/need it. I have no outlet, no friends and I cannot go anywhere or do anything unless it revolves around him. But if I get mad or upset then im the jerk for being angry at a dying man....... Im lost and im finding myself withdrawing from him. We have a very limited  amount of time left together and this is not how I want to spend it. Is this normal or am I being petty and selfish?

I think it's normal

Being a caregiver is a tough road.  I think your feelings and thoughts are normal.  

I am new to this as a caregiver to my husband.  I have been resentful too.  My feelings change daily, sometimes hourly.  My husband was a strong, healthy man  and had the healthiest lifestyle of anybody I know.  Then out of nowhere cancer struck.  His doctors mentioned it might be heredity.  His parents both died of various cancers so perhaps there is a genetic predisposition.  We don't know.  However, I have blamed his parents for passing on their disgusting genes to their son.  I can't even tolerate anyone he is related to right now.   

I have done all the things you say you are doing for your husband.  I did it because I wanted to, and it is just who I am.  However, I feel like he shows little appreciation.  I have started to withdraw emotionally and have stopped doing some of the smaller things.  I don't think he even notices.  That brings on more resentment.  I don't tell any of this to anyone - how can I?   

I wish I had some magic words for you.  I can only say that you are not alone.    

       

  

 

Noellesmom

I hear you

Both of you have many comrades who simply don't speak up. Welcome to the ranks of those who do.

Exhaustion is a nice word for mostly emotionally done but loyal to a fault.

Maybe one day we can meet on a beach somewhere and breathe.

Hugs to both of you. Many hugs.

GingerMay

Sounds nice

Meet on a beach somewhere and breathe...    

*Noellesmom - you are a blessing.       

 

   

Noellesmom

As are you

I'm thinking Orange Beach, Alabama on a fall day...

EZLiving66

I feel for you all.  In our

I feel for you all.  In our case, I, the wife, have the cancer and my husband took on the roll of caregiver when I was really sick.  I no longer work full time and although we had planned to retire this year, he is continuining to work for pay off my medical bills.  I always felt guilty when he took on the household chores I had always done.  We've been married for 45 years and while we both worked full time, we shared those chores.  Now, he was doing both his AND mine.  As soon as I started feeling better, I have tried to take some of those back, so everything didn't fall on him.  We have our two college graduate kids back with us and he has talked to them about carrying their part of the load too.  But....I know I'll never be able to go back to work fulltime - sometimes even three afternoons a week feels like too much.

I HOPE he doesn't feel this way about me.  I think we're ok, but I read this and I feel so guilty. 

Love,

Eldri

Noellesmom

Don't feel guilty, Eldri

Caregivers are usually that by nature. Nothing you can do to stop that or take it away.

Sometimes we let off steam here, Eldri. Some of us caregiver for people who don't show credible gratitude and we wonder if we are making a difference at all.

I'm betting your husband has done for you exactly what you would have done for him.

EZLiving66

Noellesmom said:

Don't feel guilty, Eldri

Caregivers are usually that by nature. Nothing you can do to stop that or take it away.

Sometimes we let off steam here, Eldri. Some of us caregiver for people who don't show credible gratitude and we wonder if we are making a difference at all.

I'm betting your husband has done for you exactly what you would have done for him.

I would!  A millions times

I would!  A millions times over, I would take care of him.  Thank you, Noelle!!

Love, 

Eldri

cheatinlil

EZ,

EZ,

Please hear the love in my original post sprinkled in with all the anger.  I'm in a much better place today.  As Noel said...I found my rhythm.  What a blessing it is for me to reread my post.  I'm only $6000 in debt now.  No student loans.  I have about $3,000 in savings.  We are no longer paying child support.  The Mom is supposed to be paying us.  She is not but that is ok, hopefully it will come one day.  I"m grateful to see how far we have come in just 6 short months.  My post was because I had to let the lid off before I blew.  Once I got it out, I picked myself up and carried on.  I love my husband and kids dearly.  I would rather take vacation and spend days at MD Anderson with my husband than go on a cruise and him not be around.  I often pray for God NOT to take him.  We are given the gift of time to enjoy ourselves longer.  The curse of it is that we have more to say things we may regret.  Please focus on getting well and enjoy the time with your family.  Please don't feel guilty.  Your smile is infectious in your pic.  I"m sending you a cyber hug ((()))

 

 

 

GingerMay

The serenity prayer

I'm thinking of the serenity prayer... Lord grant met the wisdom to know the difference (... what I can control vs. what I cannot.)  

I'm glad the original poster "cheatinlil" is in a good place now.  I also agree that "EZliving66" has an infectious smile.  I keep looking at her pretty picture.  

As a caregiver, I'm trying not to vent my frustration at my husband.  My ongoing struggle is frustration that his family LACKS EVERYTHING, and he seems blind to their shortcomings.  They make one phone call (to him, never to me) and act like they've done so much.  Meanwhile, I shlep around picking up all the pieces of our life and feel invisible.  He recently asked me why I was frustrated when he is the victim.  I just took a deep breath.     

It's hard for me to feel like I'm in front of any of this, when I am not recognized as having a pivotal role in his cancer journey.  I know... it's not about me.  

I believe things will get better after treatment is over and he has few "normal" check ups.  Until then, I pray I don't damage our relationship and am looking to develop a perspective that will sustain me and will remain a constant when everyone around me is pushing every hot button I have.             

   

Ladylacy

Caregiving

Yes caregiving is hard and we, caregivers, get mentally and physically exhausted.  I learned during my husband's five year struggle with cancer just how hard it is, but I would give anything to have him back.  I learned to take it one day at a time.  We were lucky, if you want to say lucky, because we both were retired when he was diagnosed.  We were still able to do a few things afterwards but we never traveled far from home.  When he was on hospice, they said they could arrange for hospice any where we wanted to go, but I was always afraid, even to go see our children who lived 4 hours away, so we never went.  We have a son who got married but weren't able to travel the 5 hours for that and then a grandson who got married and weren't able to travel the 4 hours for that actually my husband was too weak and I was afraid it would hurry his death.  Yes I would get mad at my husband.  But I can say that up until the last two months he was able to do for himself and still loved to get out in the yard and cut the grass and do other yard work.  Then he became too weak and it really bothered him when I went out to cut the grass.

He never complained about anything and he hated when I had to take over his tube feedings, make sure he got his medication and even clean him up.  I can honestly say that at times I got mad at screamed at him, something I regret to this day.  But frustration takes over and afterwards I would always tell him I loved him and I wasn't mad at him but at the situation.  And he understood.  Guess after reading what others are going thru, I was lucky because he always tried to help himself, never got mad or depressed about.  As far as blaming anyone for his cancer in his family, I couldn't because he was the first to have it.  His parents died from old age and his siblings that have passed, passed from different things like strokes and heart attacks. 

Just remember as caregivers we do get frustrated and mentally and physically tired and we must take care of ourselves because no one else will do it.  But also remember we don't need to do it all and to ask our spouses if they are able to help and if they won't, then let the housekeeping and wash, etc. go.  Take time for yourself, spend money and time on yourself too and don't feel guilty, as long as they are able to do for themselves, let them, don't let them use you because of their cancer.

Remember no one knows what the next minute will bring so enjoy each minute and don't be afraid to express your feelings to your spouse -- you are just as important as they are in this fight.

Wishing you peace and comfort

lisado976

GingerMay said:

I think it's normal

Being a caregiver is a tough road.  I think your feelings and thoughts are normal.  

I am new to this as a caregiver to my husband.  I have been resentful too.  My feelings change daily, sometimes hourly.  My husband was a strong, healthy man  and had the healthiest lifestyle of anybody I know.  Then out of nowhere cancer struck.  His doctors mentioned it might be heredity.  His parents both died of various cancers so perhaps there is a genetic predisposition.  We don't know.  However, I have blamed his parents for passing on their disgusting genes to their son.  I can't even tolerate anyone he is related to right now.   

I have done all the things you say you are doing for your husband.  I did it because I wanted to, and it is just who I am.  However, I feel like he shows little appreciation.  I have started to withdraw emotionally and have stopped doing some of the smaller things.  I don't think he even notices.  That brings on more resentment.  I don't tell any of this to anyone - how can I?   

I wish I had some magic words for you.  I can only say that you are not alone.    

       

  

 

I am glad I am not alone

I Went through the same emotion. My husdband diags. with Cancer in May. Our life has turned upside down since. He just finished his radiation and chemo. I was there for every doctor appointments and treatments. I understand he has been through a lot, but all I want is just a little appreciation. He sometimes gets so moody that I am not sure what will make him snap again. I have done everything I can to be supportive, but it is getting so difficult. I also started to withdraw emotionally. This evening we had a big fight and divorce came across my mind for a split second, then I felt so guilty about it. Bottom line, as a caregiver and a wife, I do desert to be happy and enjoy the small things in life. Cancer should not consume every minute of our lives. By the way, in order for him to get the Proton Radiation treatments, we are temporarily living away from home. This makes it more difficult as neither of us has the support system here in a new city. He refuses to join the support group in the local area.