Hi all was enjoying Cinco De Mayo with my cousin and a friend and hubby was the driver and of course he was sweet as pie...The minute we got home he started in on me which isn't new. On the outside he's Mr. Wonderful but aside from the public he's verbally nasty to me and not supportive. I'm on Medicare with his private insurance as backup and we know how expensive this disease can be so leaving isn't an option. I'm bawling my eyes out as I type. As most of us know and have been there done that I'm facing a chest to pelvis CT Scan and a BMB within a week and treatment soon. I just don't know how much longer I can go on like this. Sorry to put all of what I'm going through on here but I don't have any support system...my grown up kids live 1200 miles north of here...
How do I manage without spousal support? - CLL Support
How do I manage without spousal support?
I'm so sorry to hear you are treated this way, that it is your husband only makes it so much worse. I have no answers for you except no one should ever live in any type of abusive home. I would rather be homeless I think. I tried that for the first 17 years of my life, then again for 2 years with my test wife. After that I made only 4 simple rules for my home...no one ever hollers at anyone, no one ever hits anyone, no one ever says things they don't mean when they are angry, and no one ever lies to someone in my house. Everything else...negotiable. 25 years later it has worked pretty well for my real wife and I.
Scott USA/MAine
Who sometimes has to go outside to holler at the trees
Thanks Scott. I agree with those rules. Where in Maine are you? My ex is from Maine...been there many times...beautiful, peaceful and serene...could use that right about now...
Sort of in the lower middle, Turner. It is definitely all the things you said...but it is also damn cold and miserable for 7 months of the year :))) Worth it? Hard to say...I am here though.
Scott
So happy it was 75 today...finally spring is here...in another week the trees will be all green and pretty again...not just what Renee and I call "sticks"
Such a terrible situation to be in. My heart goes out to you. You know we are all your virtual support system. Not the same as having an in-home support system, which you deserve and need. But we are always here, 24/7.
kim
Thanks so much Kim
I don't care how far away your kids are.....they need to know that their mom needs them. My humble opinion is to reach out to them for support and love. You have been there for them. They need to be there for you---phone calls, Face time, text messages, something....I don't know why your husband would do this, but you need to get the love and encouragement from others. Also, reach out to friends, church family, work , etc....and US.....WE ARE THERE FOR YOU!
Thanks so much kathymac52. I don't know what I would do without all of you on here
I'd like to echo what KathyMac has suggested to you, and I just wanted to also say that I am so sorry you have to endure this kind of treatment. Especially now when you truly need and deserve support, understanding, and care from those you have been the closest to emotionally. Sadly this is something I have heard about from others all too often and have some experience with myself - a spouse who can be one way in public and in front of others, yet at times can also choose to act like a completely different person once they are alone with their wife or husband. They can say and do things that others who know them might have a difficult time even imagining.
We are all here for you and are glad you reached out to the support system that you always have with us, and as has been suggested, perhaps also try to reach out to others and hopefully get some of what you rightfully should have but are not getting at home.
Debbie
Thanks Debbie. I think I need to grow a thick skin, walk away, not take the bait when he says mean things
This is what I try to do. My husband isn’t deliberately unkind, just thoughtless.
Has your OH always been like this, or is it only since your diagnosis? If this is new, he may be totally unable to handle it. Not an excuse, but maybe a reason.
If this is a long term situation then you are an angel for putting up with him, and have done so well to have coped so far.
Just unload here when things get too much - we all understand and feel for you. Virtual hugs and lots of comfort on its way. Give yourself a little treat, just for you.
With lovex
LadyDi,
I am not sure that is the right solution. I would suggest he stop saying mean things to you. You should not have to change and become tougher so you can be abused.
Scott
My father used to tell me sometimes you have to turn and walk away with your dignity. No one can take away your dignity. Sometimes, no reaction is the best reaction of all. When he angers you, lower your voice and speak slowly. Refuse to buy into his pettiness. You have insurance, so find a good therapist. You need to call your adult children and let them know how important it is to have them involved in your life and how much you love them. Always know we will be here for you. You deserve nothing but the best. Please keep us updated on how you’re doing. Kindness always. Sally
Thanks Sally...it's like living with Dr Jekyl and Mr Hyde
I believe in some states your husband would have to continue paying for your insurance. Check with an attorney.
I was married for 23 years to a man that could be your husband. Everyone loved him. I was actually relieved once I got my divorce. (I found he was having an affair) Freedom! I’m not one to grin and bear it. He was the father of our 4 kids and that’s why it lasted as long as it did.
Life is too short to be disrespected. Have you thought about how this effects your health? Find a good therapist. It made all the difference in the world. Life is too beautiful not to be able to enjoy it. Yoga helps me relax and clears my head. I will hold you in my prayers. Kindness always. Sally
Sometimes verbal abuse is worse than physical abuse.......it leaves no bruises, only scars on the heart.
You're so right. And I love the way you put it,scars on the heart.........and they don't heal.
We are here for you. Very sad to hear this.
Therapist idea is great... suggestion....If he starts being disrespectful, simply and calmly say you won't accept his behavior and will not accept being spoken to that way and go into another room.
Maybe you could ask someone else to go to Moffitt with you? Someone who will be more supportive. I agree with above comments to call your children and tell them what is going on. Maybe you can share your situation with your local cousin and friends. 💜
I know you are feeling like you have no option to change your life, but if you were my friend or sister or mother, I would suggest you at least confer with an excellent divorce attorney to find out what your rights are in the state you live in. And also seek an very good therapist for yourself to get the emotional support you need.
At least then you will know your options, and if you decide to stay with your verbally and emotionally abusively bullying husband, it will be an informed decision, and you will have a therapeutic relationship to guide you in how to deal with your situation.
If this was a second cancer you were dealing with, would you let it grow and fester in your body until it kills your spirit? Only you can answer this question for yourself.
Sandy Beaches
I know how is and how much it hurts!My husband is with me,but he does not want to the details of my illness.My daughter lives far aways and she stopped telling me.She does not want how I am She does not like being ill.Every day I think of her.I remember we were close...My son came and I try not to burden him with my self.
I try to organize my life with my husband.
Do it yourself,please!We are friends.!
This community helps me to learn,I feel emotional support and I am grateful.
Greeting !
Olga
Olga, always know we are here for you. 24-7. We care about how you are doing. Sally
So sorry you have this to cope with on top of your illness. Some excellent suggestions from members. If advice from a divorce lawyer is not an option at the moment, I suggest you read your husband’s medical insurance policy, or phone them confidentially. You may find that, were you to decide to separate from him (not divorce), the insurance would still pay out for you. I think that is usually the case, but you need to check. That would at least give you peace of mind in that respect.
Is couples counselling something he’d go for? Getting to the bottom of why he behaves like this may help?
To help your stress, could you go for counselling yourself or do yoga? My hospital recommends Practising yoga during and after treatment
We’re all here for you. Xx
Sorry to read what you are going through. I hope you find a decent way through all of this.
Just felt moved to give an answer. This is abuse of the highest order and if possible you need to to get this out of your life Di.
I remember that you are divorced and he has remarried, with a very jealous
2nd wife. Could you not manage without him in your life, apart from his help to get to your appointments, or could you really not manage without him totally!!
I feel you are a strong lady and it's suprisingly what we can do when we set our minds to it.!!!
I also remember that you have good friends which is good.
Stay strong, and good luck with scan and bmb.
Sue
I would stay on his insurance as long as we don't get divorced but I couldn't afford my house without his income
Sorry if I got this wrong.
During treatment, I spoke with a counsellor. She told me that it's not uncommon for people to get bullied when they are undergoing treatment. It's vile that this happens, but it does. That's what bullies do though isn't it, kick people when they're down. You are very vulnerable right now but you are not alone. You've got all of us too now. I agree with the advice to speak to someone. I'm in the UK so I can't help with helplines but it's worth trying them. It takes lots of little steps to make a big change. Speaking to someone sounds like a very good first step to me. Nic x
Thank you so much BellaBee....don't know what I'd do with all the wonderful people on here
His misery is not worth it. Kick him to the curb.
I wish I could but I couldn't survive financially
You are not surviving emotional and spiritually now. Consider you might well be able to survive without his income and do so much better yourself. I have a policy of not giving personal relationship advice, but you should think about this some. No one thrives in the type of relationship you are in.
Scott
Is there a support group close by or a good friend? If you can’t leave, I would just try to be gone when he is home, minimizing the emotional abuse. I feel for you!
I stay in my room alot and don't talk to him for days. This morning he was up before me and made me oatmeal but I didn't eat it...made my own breakfast. Funny thing is, he doesn't think anything is wrong with him that I'm the crazy one
I cannot imagine how difficult that is for you and I wish I had an answer for you. But know that I am single, never married, no kids and "between girlfriends" - but was tired of living alone and organized a group house with 2 friends my age (60), both divorced. It works out very well for all of us. They were the ones who encouraged me to see a doctor when I wasn't feeling well, were with me through my diagnosis, and are my support system as I start treatment. Outside of them I've told very few people about my CLL other than family and a couple old friends, one of which it turns out also has a lymphoma and is flying cross country to be with me as I start treatment. So there are alternatives to spouses. Reach out to your children, a few special friends, others with CLL through online forums like this, and if you end up alone look for a group living situation.
I cannot imagine what you are going through! I have a very supportive husband. My kids are supportive, but have their own life so I try not to burden them too much emotionally.
To echo what someone has already asked, was he like this before your diagnosis? If so, then he probably will never change. If it has been just since your diagnosis, then counseling might help. Even my very supportive husband has times when he lashes out, usually when I am ill and he feels out of control because he can’t do anything to make me better. I also agree that I would check out the insurance policy and an attorney. There is nothing wrong with making sure all your little ducklings are, as we like to say, “in a row”.
Prayers coming your way!
BeckyL USA
He must have a very low opinion of himself to behave like that.
I feel very sad reading your comments. Life with CLL is so difficult and this is when we really need each other. We have been married for almost 36 years and much of that time I felt very distant and unsupported by my husband. (This was in life in general). We went through a marriage course that was amazing called Love & Respect in which we learned the different needs we have as men and women and how to support each other and celebrate those differences. Through learning this and putting God first in our marriage, our relationship became supportive and giving instead of distant and hostile. A few years later my husband was diagnosed with CLL and we were so much better equipped to work as a team to get through this. I would really recommend getting your hands on the book Love & Respect by Emerson Eggerichs or watching his DVDs (he is a pastor and marriage counsellor but also as funny as a standup comedian so it is very entertaining!) Even if your husband would not be willing to watch and read this, if you are anything like me, you would find it really helpful. In the meantime, I will pray for both of you for grace and courage through this very difficult time.
Lots of husbands get bad rap but my wife is no better. Thinks CLL is like a cold and I shouldnt think about it! Cares about the smallest issue of her friends. Your husband may have self esteem issues. Putting you down to make himself feel better and more powerful...weird but not unusual. Use this forum for support. I have a CT and 3rd BMB coming up too. I decided to just treat them like a dental cleaning. Im tired of worry...maybe Im in a good place. Best wishes
Before I begin, I must apologize to any of the women who might be offended by my "man comment" but from LadyDi profile picture, like my wife, she seems sort of a hottie....and really any man would be foolish to treat LadyDi poorly for any reason. I mean common my wife is so way too good for me....so I try to be sooooooo nice to her so she never figures that out. Isn't that what guys are suppose to do? I lost my guy manual when I was little so had to make it up as I went a long I guess.
Scott
Thanks Scottxxoo....I really needed to hear that because sometimes bullying involves putting the victim down while making the bully feel like the winner
Hi I am a male, married, and have lots of medical issues. I seem to have missed your response to 2 others. Was your husband always abusive, or did this start after you became ill? I know that I react really badly whenever my wife gets the least bit sick (with anything from a cough to headaches, to sprained ankle). I don't abuse her, but I'm not very pleasant or lovable either. It's like I just can't deal with yet another thing, and the thought of possibly losing her makes me nuts. I recognize my failing, but that doesn't make me behave any better. It's a gut reaction. I'm not taking his side, because he is wrong! And you should not have to deal with it. We resolve it by leaving each other alone for as long as it takes while we cool off. We have taken advantage of some counseling. Counseling for you two might help, or a temporary separation. All of us are here for you. We are "the friends you have never met".
Sorry you are going through this. Left a spouse after 12 years of abuse. I am single and not living with anyone and I’m fine, though I have good insurance and a network of friends. Has he always been like this or did it get worse when CLL came along? I ask because my best friend treated me poorly during treatment and It didn’t register until later. Turns out he was pulling back because he was afraid to lose me. Totally unfair to me and things are more or less back on track. Just adding this in case it might help.
Give a big thank you to yourself for reaching out for support. That is a big first step toward healing.
To all the good questions from others, I would ask if your children are male or female, and whether you think they will take in your comments with sympathy. Do they have strong allegiances toward either of you? Do you think they will truly "hear" you? Either way, they should know your situation, hopefully from the perspective of how you are feeling and are affected, and not putting down their father. This can be tricky, particularly if they have a good relationship with him.
Is it possible that your husband is a narcissist? To help support a friend, I recently read Karyl McBride's "Will I Ever Be Free of You? : How to Navigate a High-Confllict Divorce from a Narcissist and Heal Your Family." Actually, I downloaded an audio version of the book from my local library, my standard way of reading books. If you can do the same, and have a private place to listen through earphones, you don't have to have the book lying around for your husband to find.
Apparently, the manipulative nature of a narcissist makes it very difficult to win, whether the situation is large or small. The book provides helpful examples of narcissistic behaviors (including making themselves look good in public, while putting down partners and children behind closed doors); how they influence others; how to speak and react in ways that help set boundaries to protect oneself; and reasonable expectations. For my friend, the book provided ideas for different ways to communicate with her partner, or even walking away and saying she is feeling overwhelmed and needs to be alone rather than sitting and taking abuse.
McBride also has a web site, willieverbegoodenough.com/, with resources for helping your situation, a newsletter to which you can subscribe, and a blog where you can share stories and comments with others.
I pray that you will find a way to protect and take care of yourself from being hurt by someone with whom you hope to have a loving relationship. With CLL, you already have enough on your plate, and deserve the love and support of caring family and friends.
I understand that it can feel scary to be on your own. Having stayed in an unsatisfactory (not abusive) marriage for the sake of the children, it was unsettling to finally take the step to separate. I had the benefit of having worked, so I receive Social Security and continue to work part time now in my late 70s. If you are reliant on your husband's SS, and don't have your own resources, you do have a lot to consider. It would be sad, indeed, to stay in an abusive relationship just for monetary support. Life is too short. I hope you can find an attorney who can help you accomplish what you hope for. If your husband is a narcissist, then do follow McBride's advice of finding an attorney with a history of knowing how to deal with them. Not all attorneys understand the manipulative threats and shenanigans of a narcissist, who can be charming when desiring to impress, and they are blind-sided.
May you draw strength from supportive friends and family, and remember that you are one of God's creatures who is deserving of love and care.
I am so sorry you are going through all this. This atmosphere affects your health, too. I lived with such a person for 40 years. Finally he left me for a woman half my age. I was scared speechless but a good divorce attorney will help you and is what you need. Shop around and interview a few before you settle on one. Since you are I'll and dependent upon his incomand sovial security you could very well expect to get the house with him making the payments plus an income from him plus his SS. Judges don't like people that treat people like you're being treated....just be sure you find the right attorney. There is a huge difference in attorneys. Then breathe a sigh of relief...life will be so much better!!!!
Prayers for you!
He doesn't take this disease seriously and doesn't think it could be the thing that takes me out of this world. He's in denial which is stage 2 of the 5 stages of death and dying as outlined in a book by Kubler - Ross which I had to read in nursing school. I have been stuck in the "Mad As Hell" stage since being diagnosed in Sept of '07 but my first hematologist thought I had it for 1-2 years prior. On the flip side, I have always been there for him....His non insulin dependent diabetes, his quadruple heart by-pass surgery, numerous ER trips for Kidney stones and the list goes on but now I need support but it's like talking to a mule and we end up arguing and I end up crying and withdrawing to my room.
I read and saved a wonderful piece of prose as so much resonated with myself at that time .
I think it’s time to take these wise words out and share them with you LadyDi - We all deserve happiness, we all deserve a life worth living xxx
“No one wants to give up on someone they love...
..such as a relative, friend or lover. But, sometimes we are forced to make hard decisions by extraordinary suffering. It’s easy to judge, or say, “never give up,” until you have been there. Eventually, you begin to realise that life is too short and your powers to teach, influence or heal are limited.
You finally accept that their emptiness, pain and dysfunction requires more then you have to give. You can’t hand your whole life and soul to someone who doesn’t even care about their own. Letting go is an excruciating heartbreak; mourning the death of what once was.
If you did let someone go, and you still have guilt, it’s time to forgive yourself and begin to heal.
If it is time to let someone go, for their sake, or for yours, then this may be your confirmation”
Hi Ladydi49
I’m so sorry to hear what you’re putting up with. Just remember regarding our health we can’t afford to have stress in our lives. You’ll have to think of yourself first from now on. You’ve got so much on your plate. Unfortunately I cannot offer you any other advice as this is in your hands.
Regards and best wishes and good health to you sweet lady. josephinef 😊
Leukaemia Care have just started up a buddy scheme
The fact it is UK may not be an issue with WhatsApp & Skype etc the internet allows us to roam without borders - I speak to Jon once a month about concerns that I have which are not appropriate to talk with family. I do not have the same awful situation going on ( but we all have our own shit) - my wife nursed both her parents for 5 years to their death 7 weeks apart, back to back with my 4month near death experience in ICU. I feel she has had enough disease, death & hospitals to last a lifetime - so I try to unburden here or with Jon. I don’t really want to burden friends either, they went through enough. One person stands out from the last two years, I thought he was an answer to my prayers. He helped us financially at a time when we thought we might lose our house - it was a one off ‘loan’ of a miserably small amount in the scheme of things. Once I started to mend and get back to normal - this man bullied me with this debt. Bear in mind He approached me in the first place, not the other way around. What I am trying to illustrate is that some people behave in a way that you never expect ( I would have considered him a really close friend -NOT NOW) - there are so many complex personality types - narcissists - which I believe he is - emotionally cold and often bullies. I guess you know where you are with your husband so expectation is low - you can rally against the facts in life and all it does is breed resentment. My wife is beautiful and caring but does not understand this cancer thing, she dismisses it to sweep its inconvenience under the carpet. She wants to be able to travel on a whim, see our children, granddaughter whether they are ill or not etc etc etc I ponder about this CLL and think there is no real difference between myself and others except I know for sure what will probably see me off - they don’t.
You have to do what you have to do to take care of yourself. I'm so sorry it comes with such an emotional cost!
Virginia
For everyone in a difficult relationship I highly recommend Through My Eyes by Shari Howerton. It is about her long term abusive relationship - not a negative trashing of her ex, but some very interesting insights about how people get trapped into those relationships and stay. She is now happily married to a CLL patient. I met her through a group like this one. The book is available on line.
I have a similar Dr Jekyll and Mr Hyde in my marriage. Keep yourself as calm as possible, stress is detrimental to our condition, I firmly believe. Hopefully, your financial situation and housing is not in jeopardy. It's very difficult when you are the only witness to the abusive behavior. I've been known to stay away (my room, a friends, my family visit, etc.). We are here for you. Feel free to reach out to me via pm.
After your post caught me attention, reading your whole feed has prompted me to open up. I too have dealt with an overly abusive narcissist for years. A splinter in his finger would require more attention that I would ever hope to receive. Same Jekyll and Hyde behavior that many in this feed have described in their personal nightmare. At first I thought divorce and selling my house was the only option as an empty-nester with too much land and house to pay and care for. A lawyer confirmed that a legal separation could force spousal support and insurance coverage without going through the divorce process or of course a full divorce to find my zen, sanity and life extension. Then I read, googled, studied, started yoga and went to counseling about it only to find out that even though I'm a strong, independent woman I must set my boundaries so I started setting them in a calm voice, not engaging in any form of banter, keeping my sentences simple. When he would still explode over nothing to do with me, I informed him that we are splitting up. I'm on his insurance so that was a scary conclusion to arrive at but when it came down to action he came to me and asked for couples counseling. We attended for 8 months and the counselor was slightly mortified that I had cancer and was dealing with his attitude toward me, hubby's opinion was that I was the crazy one. The counselor met with me alone and told me that he needed severe therapy for narcissism and severe communication issues, released me to a once per month visit for emotional support for my condition and promptly referred him to a psychologist. That plan of action shocked him, first into denial and anger but they left him with a challenge: call and make your own appointment and that took months. After a few sessions he asked me to come with him for one session at the therapist's request, I went in and she asked me to say everything about him that makes me unhappy or that I think shouldn't be happening. He was immediately angry at me but she shut him down hard. After months of her giving him tools to change, he went on a diet, quit smoking pot, started helping around the house more and is finally starting to show some compassion and assistance. The massive denial was impeding his ability to care for me and it's not perfect now, he admits he's a work in progress and seems to be slowly improving.
There are still hiccups and days where I know I picked the wrong person originally but I think it's going to be pretty good now and have actually experienced happiness with him lately. One day after an infusion and low hemoglobin results yesterday, my doctor asked me to get more rest which was relayed and he still asked if I wanted to go skiing tomorrow, just doesn't understand. I rarely disclose my situation but I wanted to give you some hope if splitting up isn't an option, I know many men won't go to counseling but perhaps a meeting with a lawyer explaining to him he will be paying for your care in your condition might convince him to go all in. If not, you can hold all of the cards and kick him out, get roommates who might be willing to help you in your times of need, give care for a small rent discount. As you know, there are plenty of nursing students out there! As a fellow empath and giver, I just wanted to reach out to you and let you know that you are not alone especially on this site and can always PM me and I'll respond. Hugs to you, I hope you can heal your heart and that your second round of treatment doesn't keep you from having the life you deserve.
Wow, what a journey and thank you for being willing to share it. I really hope things continue to improve for you.
with very best wishes
Jackie
Confused
Anyone know if CLL 10 trial (FCR v Ibrutinib+R) is open for recruitment anywhere in UK?
Helpless 
How do I deal with a chest cold??
Hoping to turn a corner on this long road...sorry in advance for a long intro...it's been a long road
