Heavy topic: Caretaking aspects and serious illness

[RedVelvetHeart]

I wasn't sure whether or not to put this in general discussion or off topic. I have started and stopped writing this post several times over the last few months. It's so heavy and I'm not sure what I want from people except understanding from folks who may know what this is like.

My sneeze fetish is mostly focused on colds, and caretaking features prominently in my romantic fantasies and stories. So caretaking or being taken care of in real life sort of has an extra emotional charge, even if it's not sexual. 

This winter, my husband was diagnosed with metastatic prostate cancer. It's inoperable and probably incurable, but it can probably be managed and kept at bay for years. Not sure how many. Right now he is going through chemo. He is doing really well with it although he does have side effects and they get worse every time he gets a treatment. 

So the thing that I want to say here, that some of you guys might understand...is that my husband doesn't want me to take care of him, and that makes me feel a little broken and desolate sometimes. Like there's this part of me that is so ready to BE this caretaking person for the man I love, but it isn't wanted or welcome. I don't want him to be sick, but by God if he is sick, I want to do everything I can for him INCLUDING fight him on his own tendency to deny, minimize, skip doctors appointments, and tell me his bandage doesn't need to be changed when it DOES. And he doesn't like it!  He fundamentally doesn't want to be sick - he wants to be the strong man always. He wants to dote on and take care of ME. And here I am reminding him he is sick by saying  you need to go to this appointment and take these meds and actually tell your doctor about this new symptom. In a fantasy story this kind of tension is sexy, like a guy who won't go to bed when he has a cold and a heroine who makes him. With real life and cancer, it sucks. Especially since in the story they always wind up closer, and in real life I am sometimes afraid it might drive him away. 

I guess I wanted to know if anyone else has similar experiences, or any comment on how the fantasy of caretaking relates or doesn't relate to the reality of serious illness.

[Anyone]

First of all, I'm so incredibly sorry about your husband. I know what it's like to watch a loved one battle cancer and it was maybe the hardest thing I've ever had to do. In terms of how serious illness in real life relates to the fetish, or at least a thing for caretaking, I think there are a few things to potentially consider. Even if the illness or situation you fantasise about isn't serious at all, in order for you to be the caretaker someone else has to be in pain. That doesn't mean liking caretaking is sadistic, though, and wanting to help someone when they are hurting is generally a good thing. However, making someone else's pain about you is not usually a good thing. The more serious an illness becomes the more you have to reconcile your enjoyment of the caretaking aspect with the horrible reality of what they are going through. It is also really hard to know what to do when you want to take care of someone and help them, but know that there is nothing you can really do. Wanting to help your husband in any way you can is completely natural, but I also understand why he might not be receptive to it. He probably would prefer if everything was normal and doesn't want to be reminded of how it's not by having his illness brought up or by being treated differently because of it. He may also be feeling some guilt about you having to watch him suffer. He might not want you to be concerned about him because he doesn't want you to be worried or upset. I'm definitely not in any position to be giving advice, but I would recommend not mentioning his illness too often or fussing over him, but if he's withholding information from doctors or missing appointments you should probably intervene. I know in fiction stressful times often strengthen relationships, but in real life it often doesn't work that way and it's really shitty. Maybe try looking for ways to communicate with him and take care of him that show you care and are there for him without being over the top and bothering him. You could also try treat him the way you did before his diagnosis as much as possible and attempt to bring back the dynamic you used to have. I know all that stuff is easier said than done, and you obviously know infinitely more about your relationship than I do so I apologise if my advise was way off base.  Once again, I'm so sorry for what you two are going through and I wish you the best. 

[Zwee]

I am so sorry to hear about your husband. That is an incredibly difficult thing to deal with, and I hope you know you have a community of support here.

I don't know if my response offers exactly what you're looking for, but I do understand to some extent the weird, complex, confusing feelings that you bring up.

My mom was diagnosed with metastatic melanoma a few years ago, and it took her a long time to even tell me her diagnosis, let alone allow me to participate in the details, the surgery/doc appointment planning, etc. Obviously this is really different from your situation because there's no sexy aspect to the caretaking whatsoever, but it is still so alienating to be removed from a vital aspect in the life of a person so intimately close to you.

In my situation, it was the dynamic of a mother of three who has always had to be steadfast and strong in the face of an alcoholic partner, myriad financial difficulties, alienation from her family, etc. which brings up issues of pride, and never wanting to appear weak, never needing to be taken care of. I recognize this aspect a lot in what you and your husband are going through--it took my mom a long time to even go to the dermatologist because it is so difficult to admit weakness for someone who sees themself as the singular caretaker and anchor of a family or relationship. People in this situation balk at being reminded they are sick, are constantly minimizing their symptoms, and do NOT want to be taken care of, and that makes thing really difficult and painful for people like us who have a legitimate need to be part of the progress/solution. I completely understand the feeling of being driven away by your efforts to be a part of this incredibly painful situation.

I don't know how helpful this is, as all I can offer is solidarity that this is extremely difficult situation to have to navigate, understanding that only you can truly know what you are going through, and support that I am here for you during this hardship.

Communication is key. My mom and I are quite close, and after I opened up to her about how alienated and helpless I felt, she made a concerted effort to stop minimizing and ignoring symptoms out of fear (because most of the time that is the root of the issue). Not only that, but it helped me see her perspective and why it was so difficult for her to allow me to take care of her.

Lots and lots and lots of love to you and your family. I hope you know you are not alone in this, and I am sending positive thoughts for your husband's health.

[beijoseternura]

Hello superimmunegirl,
I feel so sorry to read about your husband.
Be sure you have people around here who understand you and sympathize with you.

The advice I could give you:
Some people start to close their own feelings in such situations.  It's a kind of self-protection. In their eyes a protection for the relatives.
My mother had serious mental health problems. She was mentally devastated. My brother and I had always tried everything to help her, but she had never accepted our help. It infuriated her, she began to become aggressive, to defend herself.

One day she told us that our help would remind her how helpless she was in the end.

We have tried to make her life as 'normal' as possible. Doing everyday things with her that did not always remind her of her illness.

Also, I have often pictured in my mind how nice it would be if she would be helped. But it turned out to be a fallacy of your own heart.

I do not want to write something wrong, I just try to help you. You should not feel devalued by your partner.
I'm sure he knows how much you care for him, how devoted your behavior is and inwardly he appreciates it very much.

 

Would it be a facility to write a letter to your partner? Sometimes it seems easier when we let our hearts speak by writing down our thoughts and feelings. I wrote letters to my mother, too she was not with us at the time, and we overcame some difficulties, though we have never spoken of them literally. I wish you all the best and lots of love. I pray for you.

[SleepingPhlox]

First off I am so sorry for you husband and situation you are in.

I've never had a serious illness like that but I've watched two people in my life go through huge life changing illnesses.  The biggest thing they both had in common was that they wanted so much to be the person they were before the illness hit.  Independent.  Self sufficient.  And I understand that because I know if something happened to me I would have a hard time coming to terms with needing to rely on other people.

Sometimes the best thing to do is to pull back and say "You got this, and I respect that".  And it's not like heartlesslessly going "hard luck mate, you're on your own".  But just, for example "I trust you to take this medication every day because this is your health, but if you need a lift to your appointment just let me know!"  Just so he can see you still see him as independent and the same person he's always been ( I'm not saying you don't but he might be in that headspace right now).

And tell him that you are having a hard time and it makes you feel like you're dealing with it better when you help him.  So he knows where you're coming from and maybe you two can settle on a middle ground. 

[Reader]

4 hours ago, superimmunegirl said:

fight him on his own tendency to deny, minimize, skip doctors appointments, and tell me his bandage doesn't need to be changed when it DOES.

Since the caretaking is emotional for you, it makes total sense that you would feel helpless and desolate. You want to do something. You want him to feel better and you want to do whatever you can to make that happen. Being denied that with a person you love would make you hurt and feel broken. That’s perfectly normal and I understand. 

He’s fighting an incurable battle which means he will always be fighting. That’s very draining and hard on him so his actions are understandable too. Plus he doesn’t want this situation to affect his or your life and he doesn’t want to essentially exchange roles with you.

     But from experience from the viewpoint of a patient at one point, you should continue to keep him on track as you have been doing even if he doesn’t like it. Its one of those things a person doesn’t understand until they go off track and complications arise. It’s better to be preventative about it instead of pointing it out afterwards. So if he forgets to change a bandage and it causes an infection....at that point, it won’t be taken well if you mention that he should always change it daily. So it’s the lesser of two annoyances/evil basically for your husband if you are asking him ahead of time. Also because there’s so much involved in just the bandage routine with making sure you’re following the correct hygiene steps in changing it, it can become tedious and easy to not do it, especially if you miss a day and there’s no change health wise. He might not “get it” until an actual infection happens so you’ll need to be the bad guy to make sure that doesn’t happen. Medicinewise, that’s a hard one because side effects can be terrible on a daily basis. I would suggest trying to find ways to combat the side effects or see if there is an alternative medicine. Full disclosure, sometimes nothing works. 

But if he asks you to step back, there’s not much you can do besides tell him how you feel and follow his wishes. 

The caretaking in fantasty and caretaking in real life is different because the person has complete control over the fantasy. I hope he opens up more to you about this. I think he sees how hard this is for you and he is trying to spare you any hurt without realizing that it’s harder on you when he tries to go through it alone. It’s  like he thinks if he makes sure nothing changes in ya’ll’s live and creates this false sense of everything being normal, then you won’t think anything is amiss or that anything life-changing has happened and you won’t worry about him. Also, he just wants everything to be normal and wants to reduce this huge thing to something that’s easily maintained and forgotten.  I think you should write a letter, as beijoseternura suggests, because then everything you would want to say could be said without him cutting you off to assure you everything is ok.  

I’m so sorry you both are going through this and I hope his health continues to improve 

[RedVelvetHeart]

Thank you all so much for listening and for the sympathy! It helps to hear of others’ experiences, especially from people who understand that there is a special kind of sadness about it because of the connection of caretaking and romance. I can’t really express that sadness to anyone else. I do the balancing act every day of when to step in and when to step back. I think I am doing ok with it. I appreciate your comments!