Spousal support during dialysis

[Imaanforever]

Hi all,

Hope you’re having a nice day.

What I want to talk about may concern people on dialysis who are married or live with a significant other.

I have been married for 18 years and I got diagnosed for kidney failure in 2020 and started dialysis in 2022.

When told I would have to go on dialysis and to ask my family member to come to get tested for a possible match, my husband was present when the consultant told us together. He initially did not make an effort to go for testing, he did not even talk about it with me, he did nothing and just kept on like nothing happened.

Then my sisters and friends came forward to get tested and I don’t know if he felt awkward that my friends did not waste time to get tested, he called the number. It’s been over a year now but up till now, I have no idea if he actually got tested or not. When I asked him about it, he said the nurse told him he’s overweight. My sister was told she was overweight which I told him, but my sister pressured them to still test her just in case she looses weight.

when going through my record, I see names of people who came forward to get tested and I don’t see his name. One of my sister even formed a group to get me a donor which I later put a stop to. Bless her, she was so desperate to get me a donor 😭

I asked my husband why he is not showing any concern or enthusiasm towards my condition? He made several excuses: one was that he was afraid of surgery, second was that if we both have surgery who was going to take care of the kids, and 3rd was I can’t pressure him to give me a kidney.

All excuses threw me off and broke my heart into a million pieces. My kids are not babies and our last born is 11years, I have a sister who will willingly take care of my kids if we both go for surgery.

I will never pressure anyone to give me an organ knowing how invasive and risky it is.

If he had had a conversation with me to say he is scared of surgery, I will understand and even if he is a match, I will never make him feel bad for not donating. I will accept my fate and wait till God provides a solution. All I needed was his support and love.

Going through kidney failure and dialysis is a lot. However when there are other underlining issues that make your journey so hard to bare, it’s difficult to go on.

I have been made to feel like a burden, feel unloved, unimportant, worthless. I am not perfect but I have gone through a lot for my husband and been there for him as a wife should all throughout our marriage. This issue in my life has just made me realise that the relationship is one sided. I have realised that I am the only one who genuinely loves, cares and respect him. I am The only one who has been working on this marriage without realising it.

He makes my dialysis journey so hard. He would only help me bring out the heavy dialysis fluid bags when he is happy and we have not argued, he would only help me with my EPO injections then (knowing I have a phobia for needles). No matter how tired and in pain I am, I will drag out the heavy fluids and sometimes call my kids to help. I don’t have anyone to cry to when it all gets overwhelming. He blames our marital issues on my physical and mental health and gaslights me at every chance he gets. Also during an argument, he brings up my health issue to spite me. For example When talking about something important that he’s saying it doing to hurt me, he could just suddenly say “you better focus on your health” Just to remind me I’m not whole. And the saddest thing about it, he sees nothing wrong in what he’s doing. He believes and tries to make me believe that I’m the problem.

move asked him, begged and cried to let’s see a couples therapist to help us with navigating issue in our marriage, he bluntly refused and doesn’t want to hear it.

This got me reflecting back, I have never experienced him fighting for our marriage or trying to make things work, it has always been me. So any little pressure would break such union. For better for worse is just an illusion. I have to give him advance notice and keep reminding him to follow me for my appointments for emotional support as I often break down in tears at the appointments. Even so, he would not really want to be there so I stopped asking him and I go for my appointments alone. I’m all alone in this. I feel so lonely

I went through therapy and talked about all these but I’m still in this marriage and every day is a different torture emotionally. I have no one to talk to, no shoulder to cry on, no one to listen to me. I cry mysel to sleep every night ans wake up with dried up tears. I try to forget about him and everything he puts me through and try to focus on my health but it’s so hard. I feel like now that I’m going through a major health issue is when he chose to abandon me. He would easily walk away from this marriage and he’s only staying for the kids. I’m nothing to him anymore.

I just want to be happy irrespective of what I’m going through and have someone to care about me and share life with.

I just want to know if anyone on dialysis is going through similar and how did you manage or cope? Please help with advice.

[jodaer]

I've not had to go through what you are going through. I'm sorry this is happening to you. Can you not call on your sisters, family and friends to help you through this. Unfortunately, I don't think you are alone in how your husband is treating you. Some men just can't be caregivers and they walk away more often than a woman would. Please, guys and women whose Hubbys aren't like this, don't hate on me. If you were my sister or friend, I would tell you to kick him out. You don't deserve to be treated this way. You are worthy and beautiful and none of this is your fault.

[Imaanforever in reply to jodaer]

Thanks for your response and kind words.

I have asked him to leave as his behaviour is affecting my mental health but he said he’s also entitled to the house and he wants to be with the kids so he’s not going anywhere.

[Porter20 in reply to Imaanforever]

You are in my prayers.🙏🏻

God makes a way to drive through this…

[Imaanforever in reply to Porter20]

Amen. Thank you.

[Bassetmommer]

Dear Imaanforever.

Boy did this bring back memories. My first husband was a total A$$hole. So much like what you are experiencing except he was fooling around on top of it. I won't go into details, but it was hell. We were very young when we got married and about five years in, I knew I made a huge mistake. As time progressed, he not only was emotionally abusive, but he also got physically abusive. Nothing says loving like a bruises. He lived to make me miserable. He was a very sick man, (mentally) and I loved him. I thought I could change him, AND I stayed because I was terrified to be on my own. We did not have children because day three of our marriage, he walked out on me saying he never wanted kids. It was news to me. I should have let him go. I stayed for 27 years. Talk about tenacious.

Our marriage was a joke, and I should have bailed years before. Then HE decided he wanted a divorce. Once I realized that was it, I served him with papers, at his job, in front of all his buddies. Boy did that feel good. I was working and would be fine. He messed with me right up to the very end. Then, on the day I got approved for my new home that was just mine..... I got let go from my job. Talk about scared. I had no home, as we had sold OUR home. And now no income.

Here is the good part. I went on numb control. In other words, I just let things happen. I still got my house. I had money in my savings account which I sent to my brother before I served the jerk. NO trace. I would be fine for quite some time. And I was. I ended up getting another job after I spent the summer with one of my friends working on our houses. She too was let go from the same place and divorced. WE had a ball.

Eventually, 10 months later, I met my current husband. He is a winner. WE have been together for 20 years and married for 17. He supports me completely. He keeps saying he would give me a kidney but since he has CKD... nope.

You are in a tough spot. I get it. The main thing I want you to grasp is: YOU ARE STRONGER THAN YOU THINK. For whatever reason, he is what he is..... it is not you. YOU deserve so much better, and I know you know that. Now is the time to plan out your exit. Take your time but know this does not have to be what it is. Figure out how you can live on your own, with whatever children you have to support. If it's about money, find a good lawyer and talk to them about support needs. Do you have your own health insurance? Most plans cover renal costs to some extent. Figure out what you can afford for housing. Maybe find someone like a relative who you can share living arrangements for now. Just working on a solution will make you feel like you have some control over your life. Is there a good counselor to help you mentally prepare for your future? I had a great one I saw through my divorce. Do not tell you husband what you are doing.

I re-read your post several times. You started out that he would not volunteer for testing. I think you know that is just one issue of many. WE think we are to blame when people do not and cannot live up to OUR expectations. There is no fault here. Just two different people who do things differently. You can realize this man is not ever going to change and live with it. OR, get out and find a new life where you feel good about you.. YOU! I know it is scary. But what do you have to lose by trying to find a better life?

[Imaanforever in reply to Bassetmommer]

Thank you for your response Bassetmommer and thanks for sharing your experience. You went through a lot but I’m happy your story changed for the better. I love hearing happy endings as I always feel there’s no end in sight with what I’m going through.

I have completely lost myself in this marriage with him. Often times I don’t recognise who I am anymore. I have tears welled up my throat 90% of the time and I have completely neglected myself.

Thank you for your advice. I am trying to pick the pieces of my heart and myself together and be okay for my children. I can see he will never change cos that it who he is. I saw some red flags a few years into our relationship but because I loved him, I didn’t notice how bad it was until we had all our kids.

I have decided in my heart that I can’t do this anymore. I will take my time and make a plan for the next stage of my life without him. I know it will be hard as we have been codependent for 18 years. But I’ll be fine God willing.

[Melirm]

Hey there,

This is something very similar to what i went through. When i was first diagnosed, my (now ex-husband) used it as an excuse for sympathy from his family and friends. He would say oh my poor wife, I’m so worried, and everyone would think he was wonderful. However, at home he never spoke to me about it. When i was talked to about finding a donor, then similar thing, he said who would drive me for appointments? Who would look after the house? He just didnt want to. Then my when i told my brother be immediately said take my kidney, with no hesitation whatsoever and rang the nurse, was tested, told he was overweight, but approved. Whilst this was going on my husband kept saying no point me being tested, your brother is going to be a better match and explained all this to other people, who sympathetically nodded and thougbt he was wonderful. My brother was then told he wasn't a march for me and rang me in tears to tell me. When i told my husband, he turned round to me and said. Well that’s it then. My life is over. I was shocked, his life was over? I said but there are other options for me to try and he said, but what this is going to be for another 10-20 years before you die and what am i to do? Cant go on holiday cant go away for a few days, no drinking or night's out. , That was the moment he broke me.

He then proceeded to go the doctor and got signed off work with stress, whilst i continued to work full time, and spent a week in Spain, started going out and about with i dont know who. He acted out for about a year and a half and i had to learn tbat i was string enough, no matter how physically tired i was, to do this by myself. Whilst trying to hide it from the outside world.

He did start to get tested when people started to ask once my brother didnt match, but i stopped it. I rang the nurse's and said I didnt want this and they ended the testing. Like one of the other posts I went numb and just did.

I dont know your exact situation and i dont want to say my was is the only way. But it did put some perspective on my life. I we t to counselling, which helped a little. But i realised i didnt want this anymore. Maybe speaking to a doctor/gp/nurse may help? They can refer you for councelling and there maybe some other support for you. But you do have to look after you.

He may well be a scared little boy inside, worried about you a d what the future brings, just too scared to actually vocalise it. Bit you can only suggest ideas and if he’s not willing then dont push it. Just think about you and what is best for you.

I wish you all the best, I eeally do. Sorry this is probably not helpful, but know its not unusual and renal teams will be able to understand and help.

For some brighter news, i was told i would probably never get a donor, and i expected to be on dialysis for the rest if my life. I had a antibody count of between 95-99%, literally my body would just ravage anything!! But i did get the call in January this year! I am now 7 months post transplant and its amazing! There is hope!

Be strong. You can do this. Good luck. xoxo

[Imaanforever in reply to Melirm]

Hi Melirm,

Thank you for sharing your story.

Reading this, I felt you were talking about my husband. I also had to tell him at a point not to bother because he went on and on about how he is stressed and under so much pressure. When I tell people what I am going through he always tries to direct the conversation towards himself and how he is not getting any support to take care of me, how he is stressed and usually there’s nothing I can say because he’s very vocal with a loud voice and I’m opposite. So people would look at him with admiration that he’s really doing a good job and the attention goes off what I am going through.

Even when I told him not to bother, he got angry and didn’t talk to me for months. He gets angry whenever I get angry about something he does to hurt me.

At this point I don’t care if he is a little scared boy inside, I need to focus on myself plan my exit from the marriage and heal from the trauma he put me through.

The end of your story made me burst into happy tears when I read you got a kidney even after being told you would never. It gives me hope in God that I will get one too.

Enjoy your life 😘

[Melirm in reply to Imaanforever]

I hope you find a way theough this difficult time. Just believe in yourself and try to remember, you deserve better.

You are important and you matter.

You always have a place to be heard here. Stay strong my friend Good luck and big hugs. x

[drmind]

Stay strong. Do what you have to do for yourself and your children. You are stronger than you think. Maybe stop expecting him to be someone he can never be and start adjusting to your kidney problem. People live for years on dialysis as those on this forum will tell you. It's a medical problem that has good treatment options. In the meantime, you can only be hurt by his emotional abuse if you let it hurt you. He's letting you down big time. You can't change him, but you can change yourself. Accept the fact that he's never going to be a caregiver and/or the person who you'd like him to be. Then, concentrate on getting a better life for yourself and the kids. Get help from your family, teach your kids how-to do things for you, see a lawyer, and hopefully see if your care team can refer you to a counselor. You got this. I see see a lot of strength in your post. BTW you're not alone. There's a community here that offers support and understanding. We want to hear from you as you start drying those tears and getting on with your life.

.

[Imaanforever in reply to drmind]

Thank you so much @drmind.

It was hard at first to not expect anything from him as he is my husband and you’re meant to expect a lot from eachother as a couple. But I have been adjusting to the fact that I don’t have support in him. I have to start pretending that he is just a housemate and nothing more. I’m a very emotional person and I often need a shoulder to cry on and someone to assure me all will be well. I’ve had to grow strength to stand on my own. If I need to cry, I cry in my room for as long as I want then snap out of it and move on.

I’m keeping busy, making plans and focusing more on my self and my kids.

Thank you for your kind words.

[drmind in reply to Imaanforever]

I think crying can be a good thing. For me, it always washes away the hurt or the sadness of an event. And when you snap out of it,you feels better. So glad you're making plans. You have a life ahead of you. Keep in touch. And use this group as a shoulder to cry on. I truly believe venting is so important to get it out.

[ashok5085]

Atleast your sister and friends are supporting you. In my case all relatives and friends turned away. I am fighting a lone battle since 5 yrs. I hope One day I will get a deceased donor. May God bless us all!

[Imaanforever in reply to ashok5085]

Hi ashok5085

I’m so sorry you are going through this alone. I pray you find the strength to manage and hope you get a donor soon.

Hugs 🤗

[Porter20]

🙏🏻

[Darlenia]

Your situation breaks my heart. Please know you're not alone, you have this community supporting you as others have also noted. I'm a caregiver to my hubby and I've always tried my best to be a model support to him. So I know that you're indeed missing a big source of help - emotional and physical. Many caregivers simply can't or won't perform that role - complaining, venting, breaking down, and occasionally leaving. They give all sorts of reasons for that - it's rarely just one thing. But it's sobering and it's not uncommon. I completely agree with your plan to quietly take charge of your life - eventually removing him from your mental and personal space if needed. Your love for yourself is enough to make it happen. You are worthy! If possible, also work towards getting that deceased donor kidney which will free you to maneuver easier and so on. I didn't qualify to be my hubby's donor because of my age and our adult children weren't very suitable healthwise (and also not very eager). We're grateful that we didn't push them into testing which, looking back, could have soured family dynamics. My hubby, while disappointed, accepted the situation. So then we moved forward quickly in seeking a deceased donor kidney - researching the centers with the best outcomes, notifying the transplant teams that he would accept a less-than-perfect kidney, getting information to them expeditiously, etc. Surprisingly, my hubby received a deceased donor kidney (with a few issues that were remedied through meds) only a year after going on dialysis. Our life is good! You, too, are very deserving of a quality life. I feel certain that you will find peace and happiness...you're a smart lady and you're also a warrior!

[Imaanforever in reply to Darlenia]

Hi Darlenia

Thank you for your response and kind words. Your husband is beyond blessed to have you in his life and I’m happy he eventually got a kidney.

I’m so happy I found this community, it’s a blessing to share experience here.

[RhenDutchess123]

I would do all I could to find a Donor...work at getting my health back and leave him...find someone who is worthy of you...He is toxic and may be a large contributor of why you got sick to begin with

[Imaanforever in reply to RhenDutchess123]

hi RhenDutchess123

I won’t put the reason for my illness past him. As I have been really really stressed and humiliated in this marriage before I got CKD. I have so much PTSD that my heart beats fast when I have to discuss anything with him. Yes, he is toxic but thinks he’s an angel. Those are the worse type of toxic people.

Thanks you for your advice.

[RhenDutchess123 in reply to Imaanforever]

Take care Friend

[Beachgirl32]

I’m sorry for all you are going through. I am blessed to have a wonderful husband and I know he would give me a kidney if he could he is overweight and has asthma and copd do he can’t and he has other problems so I am his caregiver while I am on dialysis and wait for a transplant . My husband health has hit him where he doesn’t care to go out he rather stay in the house but I need to go out. It took me awhile to say I’m going to do what I want to do if I want to go off with friends I do it now I make sure he has everything he needs before I go. My husband never has a pro with me going he always say enjoy yourself . But it took me awhile to realize I have to take care of myself first and I think that makes a better relationship . I know my brother girlfriend left him when he went on dialysis she didn’t want to bother with it. He has a wonderful girlfriend now he did get a transplant but I know this girl will be there if he has health problems . I know it hard but take care of yourself if he doesn’t want to be a true partner then focus on you and your children. Ask your family or friends to go with you to your appointments.

[Imaanforever in reply to Beachgirl32]

thanks for your response Beachgirl32 you and your husband and blessed to have eachother. All the best with your Selfcare.

[checkman]

Why would stop your sister from forming a group to help you get a kidney?? I'm sorry that makes no sense to me. But, to each his own. I'm not sure how much research you have done about kidney donation but it is neither invasive nor risky for the donor. It is a super easy procedure for the donor.

[Hotcoffee]

Dear Imannforever,

Your letter broke my heart. First, let me assure you that you are not alone, God is with you and He has moved me to reply to your heartbreaking letter. He wants you to know that He, God loves you and that He is with you during this health trial that you are now facing. Unfortunately, there are others, also who have insensitive spouses such as your husband. My brother is on dialysis and his wife has never been tested to see if she is a match. She never comforts him emotionally or physically; nevertheless, he pushes on with my help and the help of God. How can human beings be so cruel and mean? The Bible says, "Be not deceived God is not mocked, whatsoever a man soweth, THAT shall he also reap." One day your husband will live to regret how he is treating you when he reaps the same thing himself. I pray that God will send you caring, friends, family members, doctors, and nurses to let you know you are not alone in this journey, others care about you, such as myself. You are a valued woman to many people. Look for little acts of kindness shown to you by others because it will be God, letting you know how much He loves you. Sometimes, we can get so caught up in looking at the bad behavior of one person, that we fail to see the many acts of love and kindness by others. Give your sister permission, to establish that list of possible volunteer kidney donors. Hopefully, you can get a transplant one day or even be divinely healed. Don't waste your energy, grieving the outrageous, insensitive, and poor behavior displayed by your stupid and crazy husband. It's not worth it!! Focus on yourself and your health. Enjoy your life with those who value and appreciate you like your sister. God will take care of your husband. I pray that he changes before it is too late for him. Be encouraged my sister, God loves you very much, and He alone is enough!!!