FEELING COMPLETELY ALONE AND AT FAULT FOR EVERYTHING THE CAREGIVER!

[Traci-Renee]

HI EVERYONE,

I hope everyone is doing well, what a challenge we have all been thru.  Not only having a loved on with Cancer but then let’s throw CoVid in the mix ...ugh I think I’ve pulled out some hair during this time.  After being home with my husband during the shut down of Covid.  My husband got mad at me bc his dr’s office accidentally called my cell phone, to make his appointments.  I said oh you called my phone but he is right here.  Well he got mad and said why are they calling your phone?  I said no biggie your right here talk to them.  He got on the phone and was kinda rude to the woman on the phone , this is my wife’s phone you called the wrong number.  I can make my appointments.  I said stop being mean.  After he got off the phone I cried.  He was so mad bc they called my phone by accident.  So I told him that was ridiculous and I gave you the phone.  He then told me he is stuck in this f-ing house with me.  I have asked for an apology.  Nope.  This was April 26th,  I waited two weeks wrote him a letter saying how hurt I was and that he hasn’t said I’m sorry, or even asked me what’s wrong since I’ve barely been speaking to him.  Do you think he ever apologized?  Nope!!! Do you think he ever asked me what’s wrong?  Nope.  He said you have no problem telling me when your mad, so I figured when you want to tell me you’ll tell me.  Well it’s the 20th of May and I’m still barely speaking to him.  He hasn’t asked or cares.  I’ve taken my clothes out of our room and thru them all on the dining room table and emptied my dressers.  How can he be missing this sensitivity chip.  It’s ok to hurt me over and over again.  But happy when he’s talking to anyone else but me.  I honestly don’t know how much more I can take.  God I never saw my life like this.  I honestly pray nobody has to feel the pain I feel.  I feel like a nobody. He has killed my self esteem, I don’t feel loved, I feel so alone.  💔

[Anonymous]

Living grief @Traci-Renee 

The emotions of loneliness and resentment you are feeling are so very common amongst caregivers. 

Have you any emotional or practical support as you care for your man? 

Sending gentle thoughts your way.

https://www.caregiver.org/emotional-side-caregiving

[Carrithom]

Hi Tracy-Renee

My husband has recently been diagnosed with lymphoma and is undergoing treatment and I too am finding it really difficult to cope with the personal treatment.  He is in his late 70's and I'm in my early 60's so he also has poor hearing and a defensive attitude that causes conflict between us.  I understand how deep and hopeless your feelings are.  My experience is that I feel terribly undervalued and accused of things my husband thinks I says even if we are commenting about a news report.  I find it hard to share space with him and so have put in things that keep me occupied during COVID restrictions so that I don't leave.

I have a difficult but small jigsaw that I do, I have crocheting that I have started (its been 20 + years since I last crocheted, I am typing letters to myself (which I find very therapeutic) and I read.  I try not to comment on too many things as he truly believes that I'm the problem.  I'm not saying he is the problem either but certainly what's happening to us is.  I find my husband moves between little boy who is needy and autocratic disciplinary father who 'needs to control' everything including me.  I understand why he is doing it as he is feeling controlled by his experience.  He cannot tell it what to do or order it to do something else as he was able to do in his business life.  He cannot blame the cancer as it will not listen and he cannot sack it.  So he is quite powerless to change anything at this time or to feel empowered over decisions or activities in his life.

I am not one to condone disrespectful behaviour nor do I think I should be a sacrificial lamb but I cannot change where I am at this time.  I am on the journey with my husband.  So I am trying to make the best of it by being busy with calm and peaceful activities.  I don't watch tv or Netflix unless it is uplifting or comedy; I walk as much as I can around my community; I make myself good food and coffees and proceed the eating and drinking with - you deserve this delicious food and coffee;  or you are coping because of who you are; you don't deserve what was said but you can control what you do with it (let it go).

I let my friends and family tell me I'm doing well.  I pick flowers from my garden - just for me.  I try and make my life as peaceful and beautiful as I can.

In my letter writing I tell my computer what happened, how bad it was and how undeserving it was.  I can swear or cry or be angry.  Then if helpful I write a letter of apology from the cancer back to me giving the cancer an opportunity to express to me, how much I'm appreciated, or loved, or admired.

I understand that all of this seems fanciful but I promise you I have been where you are and it was horrid, heartbreaking, confusing, hopeless.  

one of my friends sent this to me today and it helped me this morning...

Poem from Elizabeth Gilbert

The woman whom I love

and admire for their strength and grace, did not get that way because shit worked out

They got that way,

because shit went wrong, and they handled it.

they handled it in a thousand different ways,

on a thousand different days,

but they handled it

those women are my superheroes

   ………………………………………………….                  

Can I suggest that you see yourself as this woman.  You can be your best cheer squad and truth teller.

Separate the cancer, the treatment, the suffering from your husband and look for whatever is hidden under all the 'shit' if I may say that.

I'm not advocating being a doormat, but be skilful in how you live your life.  If anything you try works and makes things better for you, tell me.  I might try it too.

Carrithom

[Traci-Renee]

Hi Carrithom, 

Thanks for your letter.  I’m sorry to hear about your husbands recent diagnosis.  I’m also sorry that you have to do so much to make yourself feel better.  My husband was diagnosed almost a year ago.  June 18th will be a year.  Please know when I say do things for yourself to feel better, I mean that I’m a positive note.  You found something that works.  I have been there for everything fought with the hospital that he wasn’t leaving until a cat scan or ultrasound or both were done.  That you don’t have that many symptoms and nothing be wrong.  At that time they thought it was a blockage in his intestines.  Twice in the hospital for a week.  Slept there every night until they said I couldn’t.   Then he had surgery June 18th and found out he had appendix cancer loaded.  I didn’t leave his side.  Me and the kids would switch off, so I could run home do some cleaning, make food for kids and then cut lawn if needed at both properties and go take care of my mom.  Then back to hospital by him.  Of course I got the worst shift with him, bc by the time I would get back to hospital was 9-10 pm.  Kids would say bye and nurse would come in with his meds.  And he would pass out.  Yes really got to enjoy time with him.  Gave all the good time individually for daughter but she would selfishly stay when her brothers would get there and not give them their private time with him.  Which made me mad, bc I was being so unselfish.  He is so nice to everyone but me.  He calls people behind my back.  This doesn’t feel like a marriage any more.  The kids yell at me, if I yell at him.  I’m walking on eggshells.  We can’t even talk if we start getting upset with one another the kids jump in.  He will scream I have Cancer.  I was yelled at for telling some people about his Cancer.  I just found out he told the neighbors who we actually don’t care for the wife.  He told them and they slipped and told me.  We don’t even really say anything to them but hi, but he chose to tell them.  I feel like he is 15 years old and everything is a secret.  Not a grown ass man who loves his wife...yes wife!!!! I deserve so much more than I get.  I make homemade We call Cancer Soup!  I have been there !!! Cried uncontrollably when I found out about his Cancer...yet his mom who was living dirt cheap at our other house until I recently told her she had to go, that we needed more money.  And his sister they both came to visit him 4 times in 21 days.  He calls them all the time.  Everyone is wonderfully and I am just shit...he is being made to go back to work on the 27th or has to come up with 2900$ or lose his benefits and insurance.  The saddest part of this I know he will be happier to be with them then me...and it’s killing me!!! Thank you so much for taking the time to try to make me feel better.  But I swear he doesn’t care if I feel better.  All he cares about is the kids and his friends...it’s like I’m dead or he has no sensitivity chip when it comes to me...💔 I am so broken I can’t even find all the pieces...

[Carrithom]

Hi again. It sounds like you are having and have had an extremely difficult time in many areas of your life. I'm new to the whole cancer treatment/partner carer situation and expect we all have to find our way through it. And I expect I will do well at some things and not others. I have found the cancer council sight helpful particularly when I read about cancer patient experiences and how alone people feel even when surrounded by loved ones, friends, family and medical teams. This is something I personally will take on board. I think for me the fine balance of supporting but not controlling while retaining a feeling of value and me-ness in the whole experience that isn't pleasant or kind or conducive to my husband feeling supported or even hopeful. He has lost his hair which I think is minor but to him it's extremely important that he looks good. He knows he looks unwell and now also thin and bald. It may seem a little thing but to him it's important so I tell him he is still handsome and attractive.  He doesn't enjoy my cooking anymore. Me - I was heartbroken as it is one of my love-languages but I had to get over it and not fuss about it. I am not in the same position as you as I said I'm at the beginning of this journey. I hope I survive emotionally. I hope my husband survives and survives emotionally. I hope we survive as a couple and can rebuild our lives after treatment finishes. I hope there is a finish to treatment so my husband can rebuild himself and be who he wants. And I hope he wants me. But there are three entities in this relationship and I see that it is me and my husband against cancer. We are so lucky to be supported by family and medics and friends. I hope you find a way to get support and understanding of the desperate situation you are in. Cancer can win in many ways I expect, yet I hope I have the courage and increasing knowledge and ongoing support that we need in this fight.  Reading cancer patients stories have increased my empathy toward my husband and so I'm going to work on less about me and more about 'us' though I have no idea what that will look like.  My husband and I are separate people and we have greatly differing needs in this journey but we have to work against the cancer as a team as well as individually. I hope we make it. 

My heart goes out to you and I hope something changes for you soon. I hope someone comes into your life that can help you deal with all that you are coping with.  Carol 

[Traci-Renee]

Hi Carol,
Again Thank you for your response.  I also left out my husband has stage 4 appendix cancer.  He doesn’t know and doesn’t want to know.  He thinks he is gonna beat this.  The dr’s have told us he will not.  They will treat until they can’t.  I have been on here for awhile, and many of those I have spoke to, also have a partner that is mean.  Mine included.  They say they are mean to the ones they know love them and won’t leave.  My husbands sister pasted away 9 days before she turned 56.  My husband is now 56.  My sister in-law was very mean to my mother in-law.  So I know first hand this happens.  I pray for you and your husband that it doesn’t and he appreciates everything you do for him.  That you are a loving wife and angel.  I was doing and am doing everything I possibly can And have done.  If I said something  he would argue with me, I don’t know if he’s mad bc it isn’t me with the cancer.  But I sure in hell didn’t give it to him nor would I.  I love him, but if I’m making him miserable than maybe I just need to leave for sometime.  My heart breaks.  I’m very protective of him, bc I know everything and he chose not to know anything...imagine he’s on the phone telling everyone how hopefully he’ll be cancer free and i have to get up and cry knowing he has 6 months to two years.  Hopefully longer and three kids.  It’s the hardest thing in my life, I’ve ever had to deal with.  I don’t think it’s fair that I know everything, or that his words are mean and leaving me think he doesn’t love me.  Wow what a great feeling that would be huh!!! Like I said I’m just 💔

[TonySkala]

Your husband is upset and taking it out on you because he knows you are his pillar that he can count on you. He is embarrassed because he is not able to do the things he used to do and thinks you look at him differently because he cant. Bury those feelings you have. You will resent him later if he beats it and you will wish you had done more if he doesn't. You need to keep it together because if you dont .... and trust me this is true.... the whole family will fall apart if you dont hold the family together. you are most likely the caring and nurturing person in your house doing more of what is required and not acknowledged for your work. Because it is expected of you, because you can do it, and you do it with out even knowing you are doing it. 

You can handle this. My advice, treat him like he doesn't have the cancer and ask him to do things he used to do around the house. 

Remember no one will acknowledge your hard work and selflessness. But you and I know whois keeping the house afloat. You are way stronger than you think. 

[Traci-Renee]

Hi TonySkala, 

Thank you for your kind post.  I do ask him to do things, sometimes he pushes and hurts after.  It’s just so much.  Unfortunately I already know he isn’t going to beat this.  He has stage 4 appendix Cancer, that has metastasized.  I have calmed down and started walking since May 8th, just to clear my head.  I don’t leave the house, I walk on my treadmill.  He has actually, been nice since I removed all my things from our bedroom, and told him I was moving to our other house.  He has finally calmed down himself.  He is still my husband no matter what he is going thru and he knows, shit they all know they need me!  I know they are mad and angry and upset and that’s ok, I don’t want them holding it in, that wouldn’t be good for them at all.  So they take it out on the strongest person who they know has their backs no matter what they throw at me.  I was going thru a bad time when I made my post.  Why bc being a caregiver of everyone, but yourself is tiring.  Nobody ever says how are you doing?   All everybody says is, I don’t know how you do it!  You take care of hubby, 3 kids, the animals and my elderly mom every day.  How do you do it?  Well I do it bc it has to be done.  Believe me I want to bury myself in a closet and scream and cry and ask God why!!! But honestly if I didn’t have so much to do, I would probably have a nervous breakdown.  He knows I love him, no matter what.  For the good and the bad!!! So I’m not going anywhere, I will not give in.  I believe it’s easier to walk away!!! But I’m a Fighter and will continue to do what a wife, mother and daughter are suppose to do.  Thank you so much, for reaching out.  Are you or have you been going thru a similar situation?  Hope to hear back from you.   Traci-Rene’e

[Traci-Renee]

TonySkala,   

also my husband doesn’t know it’s terminal.  He doesn’t want to know.  He believes he will beat this...