From my "handle" you can guess I'm a caregiver. And gosh I'm struggling -- and my husband is not that incapacitated at this point. Still working a bit. Other than the mCRPC, he's overall healthy.
He has a dire prognosis (dx at Stage IV with distant bone mets 4 years ago, run through almost all of the treatment options, and his clinical signs are worsening). So he's mentally dealing with a lot. I get it. But he shuts me out -- like I'm invisible or just don't matter at all, or if he does notice me, I'm in the way and annoying and an obstacle and pretty much apparently to blame for everything that is wrong in his world. Sometimes when he gets really tired, he's nice to me for a few minutes before he falls asleep.
I do take care of myself with massage, walks, walking away as needed, doing my work, and seeing a therapist.
What I'm looking for here is just that -- "you are not alone" reassurance. I know this but I guess I'm hoping maybe to start a thread where other caregivers can go when they are having moments like this.
When I came home from work and the bare minimum communication and big wall continued today, I sat on the floor of the bathroom and cried and stared into space for a while. That helped somewhat . . . Maybe another massage this weekend!
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Caring7
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Hi Caring 7. Thanks for being a caregiver. I'm 59 w stage IV. Just discovered 1st sign of Mets this week, and now thinking about what to do next. Likely Lupron and Zytiga, however, lots of hesitation on entering the Lupron world given lifestyle changes, etc. On the other hand, I see other warriors here who encourage "get the bastard early and fight it hard"...My darling wife of 36 years and I are doing the best we can with all of this. It's a daily challenge to adopt the optimistic, enjoy life mindset, however, I do find a great deal of hope and caring here, in this unique community. Hope you find some comfort here, and here's to better days, massages, and whatever else brings joy ahead. Have a great day, best to you and your husband, and thanks again for being a caregiver.
You are - truly - not alone. Just as the airline preperation for takeoff video's show, you have to put your oxygen mask on first, before you can help others.
I cannot not imagine what you are going through as my husband and I have just started down this road (Stage IV Pca). I think the self-care is surely a critical component. I hope you will continue to take care of yourself. I know there are discussion boards for caregivers and I can see how it would be therapeutic for you to start one. DO IT ! And I will gladly reassure you that you are NOT alone.
I'm here to tell you that YOU are a WONDERFUL AND MAGICAL EXISTENCE....but I'm sure you feel so very tired, depleted, unwanted and so many other feelings. You are not alone.
BigMs wife here. You arent alone. I find my husband gets angry about little things. I am affected. BUT i try to think of him as someone to protect and it reminds me that he may feel alone too.
I'm a patient, not a caregiver, but I know from my father's final illness (not PCa) that this happens. Be assured it is the illness doing this to him (and you). He still loves you. He still needs you. And there's bound to be some level of frustration at what's happening to his body. None of that excuses brute behavior, but maybe it helps explain it. I also think it's OK to say, "hey, you're not being fair; we're in this together."
Yost - you are such a godsend on this site. I see your posts often. Thank you for always being positive.
Caring 7 ,to speak the unspoken. I’m guilty as he at times off putting up that wall of self loathing and darkness shown to my wife. Not cool. Terribly destructive to all ,let’s face it .it’s the spouse that might be the only one that sees all of the bad s**t ,and takes the brunt of it. Alone?? , I think not., this is common. Hearing you opens my eyes to my own bad behavior. I’m doing pretty well with my sweetheart although I ve always been a dominant fellow in the past and still have tendiciescto dominate my passive partner. But today we are good! Hope things improve for you.. it’s a crazy path we are on.
Caring7 has identified a need - for our caregivers to have a forum of their own. Personally I value their participation in our dialogue a lot. But I also know that PCa is very hard on them. My amazing wife of 31 years says it in her own way to me.
If our caregiver members wanted it, could they get their own ‘group’, something like ‘Advanced Prostate Caregiver Support’? Is that something you could formally set up?
If you, and our caregivers, like this idea, perhaps we could do a poll to gauge the level of interest. And if they want it, perhaps you could set it up for them?
Just a thought. We all clearly benefit from the support we get from each other here. And our dear caregivers deserve that opportunity, too.
Caring7 - thanks for what you do. I know it’s not easy. But as someone earlier said, it’s the cancer and the treatment. We all love our spouses and partners - it’s hard to describe how our treatments make us feel. But we are all doing our best. Sometimes, though, it helps to remind us that we (the PCa patient and our partners) are in this together.
I would like it if my wife had some other ladies to talk to about this as time goes on with Cancer. There is a definite need. In the old days there was a ladies only forum.
There is an absolutely wonderful group of ladies only... ladiesprostateforum.com
Caring7 and other ladies. They are awesome. I've just so many other things to keep up with that I've lost touch a while. You wouldn't go wrong signing up with them too. Big hugs all.
Thanks everyone. Appreciate the variety of positive thoughts and encouragement. He's changing treatment -- maybe he will feel better in general. But 10mg of prednisone a day -- not sure if that will help with anger . . . I tried talking today but it's still all my fault. Back to that one day at a time thing and deep breaths.
Holey Molely! I had the same thought about if offered if prednisone presses rage . Dad did it. Mom said he got uppity . Otherwise a calm man . Hope you find shelter in the storm. I surly don’t want to cripple my wife emotionally due to my anger inside. Today and recently going well. If a man was not happy before APC i don’t see a seemless tradition into happinesss once depleted of his driving factor”T”...My prob is my past patterns of dealing out of anger. Anger of what I’ve lost . Now I’m beginning to see that behavior as a literal dead end for me and my wife.. we are tied at the hip. I hurt she hurts .I wake and give thanks for her and before sleep the same. Guys acting badly towards spouses ... stop it.. you are destroying yourself Everyone has a breaking point. Misery loves company ? That’s a morbid excuseto destroy another. Happiness is also contagious.. Keep a smile on your face. If it seems that he can’t see You or hear you, we Can . Guys don’t isolate the only person in the world that is truly by your side.. Get a punching bag instead. !
What I've noticed now that hubby has started the prednisone is that he gets anxious very easily. A little short-tempered too but that has been the norm for a while. The anxiety isn't too bad but he definitely gets himself in a bit of a tizzy now and again. He's dealing with a lot -- waiting to see if he is in the small group for whom Zytiga works after Xtandi . . . . contemplating 2nd chemo with Carbiplaten + Taxotere.
I already as you said get myself in a bit of a tizzy.. Hope I won’t need those steroids. You both are dealing with a full plate of treatments. My heart and prayers for him to find some relief in the storm. May God bless you both and limit the suffering . Thank you for being by his side.. that’s true love..we are all tested to our limits in the APC.. you’re not alone .. Please take care of the caretaker...
None of this makes sense and no one thought we would be in such a hellacious nightmare. I’m ok right now , thank god. You both are in my prayers as I read this late at night. I pray for love in your hearts.
I totally understand how you feel. I'm sure by now we all know that man deals with feelings and emotions in a very different way compared to us women. So I think it's a great idea to have a forum for caregivers. Most definitely you are not alone. You can contact me anytime you want. My prayers for you.
I am happy to see you are taking care or your physical, mental and emotional health. That’s of great importance for us as we care for our loved ones.
Try not to take it personal ( I know it isn’t always easy, you are human).
Your husband is going through a lot. Anger fear, anxiety can sometimes be doors that shut loved ones out.
Sometimes I realize my husband is not in the mood to speak or eat or do whatever it is I am trying to get him to do. I have gotten pushy at times, signs of my own fear and anxiety.
Gauging his mood is very essential in being effective in communication. Sometimes we can be present and communicate without speaking.
Write him notes, place a card on his pillow, reassuring him of your love, presence and commitment. Sometimes all you can do is hold him, or leave him in his mood.
After restless days and nights of lack of sleep (because of excruciating boney pain) I watched as my husband struggle to put on his pants . I said “why don’t you sit, here take my chair ,” he said I have to be tough, I am a man.” 😊
Hubby is dealing with anticipatory grief, and it is well know that shutting out loved ones as well as projecting is sometimes “healthy” ways of coping. My husband, for example, was in denial for a while and he told me “it’s how I have to deal with this so I can keep on living.”
Happy to have met you in this group!
Please know you are not alone and every one in this group has been more than supportive.
With much understanding and empathy, love from one caregiver to another... just know (1) He is going through a lot and (2) It’s not your fault.
Gosh, my husband is just at the beginning of this PCa journey and I can already tell it’s going to be a rocky ride. He’s a Gleason 10 but that’s all we know so far. Scans are next week. He’s snapped at me a few times and I’ve gently called him on it. So far, that does the trick. He doesn’t seem to want a whole lot of info yet so I’m trying to not nag.
I’ve immersed myself in the subject and it was helpful in the biopsy results appointment. Between being stunned by the news and unfamiliar with the terms, he only heard a part of what was said. He knows I’ll do what he needs to help once he’s ready. He did ask me to attend a support group with him which I did. There’s another this Saturday and I’ll go again.
You’re doing well in taking care of yourself. I just checked out that Ladies group online and registered. Maybe I’ll see you there? I hope you have close friends and family to also support you. I did read a story where the caregiver wife said people only ever asked about her husband who had cancer. If that starts to happen to me, I plan to speak up-kindly, of course.
Hello Emmett50, I believe the beginning is the hardest. . I have been getting better with time and acceptance.. I was macho.. took it hard... the bad part of our male ego must die to survive With APC. It can be a bumpy road for us men. The fact he will go to group is a positive sign. Stay in touch . There is plenty of misery To go around.Also there is plenty of compassion from all of us for your journey. Take care..
We are coming up on the 9th anniversary of The Diagnosis. We've been married 52 years. At the time of diagnosis, I thought we would never celebrate the 50th anniversary together, but we did. It is a roller coaster ride together with Cancer in the driver's seat. My husband is still the ostrich, refusing to research options and side effects. It is my job to keep track of the medical "stuff". He refused to join any support groups, on-line or in person. We cannot talk about the elephant in the room. He kept working years beyond when he should have quit. He still goes in to his office every day unless he's really sick from the chemo. I have noticed that lately he has returned to wearing the clothes he wore during his teaching days. Over time he has become more emotional, short-tempered, and really childish - no self restraint. Some of this is the result of medications, "chemo brain fog", and a lot is fear of the unknown. One thing I learned from reading the science fiction novel "1980" in my teens was that fears lose their power when they are acknowledged and faced. I forgive a lot. I stay active in church and community, work full time, burning the candle at both ends so I have zero trouble sleeping at night. I know that all this activity will end sooner or later. But while I can, I help my husband with his bucket list and savoring the time we have together. I let him choose where we eat lunch each day.
This is fairly close. I do most of the medical "stuff" -- although he's interested too (he's got a medical background). And then occasionally he gets mad that I'm keeping track of things (even though he doesn't). When he complains, I let go and let him do (or not / forget to do) it.
He is very afraid -- I think that's definitely key from your post. But he's not processing that fear and so it just becomes anger, mostly at me, and mostly, I think, because I'm not dying. I don't see him as dying (right now) either -- he works part time, rides a bike, and is generally quite healthy (PCA aside). But that's how he seems to see himself. He has very minimal coping mechanism - so its mostly anger at me (which I agree with several people here, is really anger at the disease, but he's not self-aware enough to admit that). I am trying to be satisfied with my career, but he's always nagging at my work (which I just don't get -- we have no kids, so it's what I have as my identity and its important to me). I have free time - just not at the precise moment always when he wants me to have free time. In fact, I juggle a lot (got up at 5:30a this morning) to work around his schedule. I sleep well most of the time - something to be said for exhaustion!
Right now it's just one of those periods where I'm walking around on the verge of tears most of the time, esp. when I'm on my way home or at home. He's changing meds, and I'm hoping that will make him feel better. The current med (Xtandi) has started giving him significant GI symptoms so we will try Zytiga. But that's about all he has left other than carbotaxel/carbiplaten chemo, which he is not keen on doing. So I get it why he feels so bad. One day, then another day, then another day.
Thank you for your support. It really does help to know there are others out there in similar boats.
My inner thoughts , our inner thoughts, the things we tell ourself , our self talk is forming our thoughts. If I tell myself I’m mad, I’m mad.. APC you’re goofing to die , your stripped as a man , not the strong confident dominant male ready to go out and kill the wild bore. My anger comes from frustration. Frustration can build to explotion . I’m not earning not contributing ,disability , what used to,take 1/2 hour now takes several. Why am I here if not to be the strong provider?. Feelings of worthlessness and failure. I should just check out. I ve had all of thoughts while depressed . I’m not worthy to be taking up the precious resources of this earth . They’d be better spent on the young and strong. I’m done. My life is over. He is mad at himself , and takes it out on you.I do the same when I’m angry. Nothing at all to do with anything my wife’s doing . No fairness in this and no good outcome if bad behavior continues.. you need a break. We all do.. so we deep breath , pray, hope ,wish . Only he can change his behavior. I hope for your sake and his that he will wake up ! I admire you...
That's pretty accurate I think. I just hope for some introspection on his part, but meanwhile, yes, giving myself a break and reminding myself where it really is coming from. But thank you. It helps me believe that I'm not making stuff up about what's really going on!
My wife has seen parts of your nightmare too. He has to snap out of it some how. Drugs , docs , whatever it takes. I understand. How can we change a stubborn Man. Answer , we can’t, he’s got to change himself . An outside influence would be good. This Christmas I was on my wife’s ass for something idiotic. Not caring if my step daughter was witnessing my bad action.. She stepped up and said “That’s so rude” She put me in my place.. we talked it out and I thanked her..I needed that. I’ve been more thoughtful ever since. Behind closed doors between a couple only they know the reality. A private secret hell is the worst. You share here.. we care .we all know this story is true. By sharing you are breaking the chains and helping all of us.. Thank you!
Very thoughtful of the one who suggested and you for making it possible. Thank you much.
Blessings to all. 💚🙏🏽💚
Today I am tired and I have an important Tele-Conference at 3 pm EST... my mind is in “busy mode,” Praying I will be fine, and you who are facing challenges today, will also be fine.
Keep beating the drum. That’s all we can do. Your perspective is orally clear. A sane approach to,keep,your sanity in all the PC madnesses! 50 yrs That’s remarkable.. I’m 56 . God bless you with strength!
CANCER is the culprit. Feel a pain in your big toe "then it's your Cancer". Stomach upset "then it's your Cancer". Headache "then it's your Cancer". A twitch in your neck "then it's your Cancer" and etc. So please realize that his condition effects his personality. I would bet that he was not that way before he got the big C. So give him lots of slack because most men are like little boys. You're doing a fantastic job so just grit your teeth and curse the big C.
Hi Caring7 I have recently been involved in a ladies online support group that holds group phone calls. It's in early stage but may be of interest. There were 40 some ladies the first time and now it's being divided into smaller groups with more specific needs.
My husband complains about having to go to so many doctors all the time. I keep track of everything so I should be the one complaining, not him. If we did only what he wanted to do we wouldn't leave the house and certainly wouldn't go to see any doctors ever again. He says they are just practicing on him, haha, and that nothing has worked.
Hubby is definitely a grumpy old man but at least he is old. What I am trying to say is that I know what you are going through and we all have to look for any little positives in our situation. At least you are able to sleep well at night!
Thanks. Most nights, and if not, I respond well to just over-the-counter help to sleep. Right now, this forum is really helping me not go into a downward spiral myself that it really is me. Thank you, and sure post something about the phone group. I live in Hawai`i so often timing for such things is sort of off for me.
Seriously making plans to move to Hawaii. Which one of the island do you live on? There is someone else in our group who is originally from there and visits....
This group has been my saving grace, While I love the idea of a women's group, I find the co-ed group to be very helpful. This group gives me a great perspective on what my husband may be experiencing and I find the men to be well informed, and also not judgemental.
I agree. The co-ed responses here have been really helpful all around. Sometimes it might be nice to commiserate with the partners alone (caregiver support groups that I (rarely) attend do not allow the patients to come so that it is a space to vent - so value in that too). But this thread has proven pretty interesting I think!
I live on O`ahu. Medical care here is fine. The other islands, it's going to require trips to this island for any advanced treatments.
I live Kailua. Next town over. Kaneohe is further from the beach (if that matters) and gets more rain (somewhat depending on which part of Kane`ohe, but its all closer to the mountains so gets more rain). If you want to talk more about the move - send your email or phone and I'll get in touch off this forum.
Hello, I am not sure if I have anything helpful to add......one thing I might say is that things can change over time.....you have been living with this for four years......I have no words of magic....but, over the years, different things have helped.....sometimes it is going for a second opinion and learning that you are doing the best you can.....sometimes it is going to a support group and seeing what others are dealing with and how they are doing.....sometimes it is an online forum like this......relatively early on I remember going to a meeting of some sort where a couple stood at the podium and he said he had bone metastases and they were doing fine....I was dumbfounded.....sometimes it is a magazine like CURE......once we took a "mindfulness" course together (sponsored by the hospital)......for a while my husband drank green tea in a therapeutic manner ......I guess I am rambling....but I think my point is....this could be a long haul.....and one of the best things for me to think of is that there are researchers out there right now working on it.....and they may come up with more good treatments.....on the other hand....I think some day we will come to the end of the line and we will need to learn to live with that.....there was a very brave man who used to post and I was so grateful that he described honestly what he was going through.....so, I think the fact that you are reaching out for support is good in and of itself. I wish you and your husband the best possible......
my husband was diagnosed in 2001....I find that almost hard to believe....and he has had surgery, radiation, four clinical trials (one helped) and is now on Lupron and Casodex....
I've been referred to numerous men through the years to talk to them about their diagnosis. Maybe because I have always been determined to beat it. I found that many were like your husband. Didn't want to communicate. Even one doctor who I was referred to was diagnosed with prostate cancer, crawled into his dark space and never came out. Although it's now many years old I still recommend to my friends who are either caregivers or patients to read Love Medicine and Miracles by Bernie Siegel MD. I had bought all of the books on prostate cancer but this one was the best for my emotions and my soul.
My husband does usually (has so far) come out of his dark space eventually. He's been peeking out but still really volatile and easy to set off. Me -- steady as she goes!
I give a copy to every friend facing serious illness. Are you in HI? I was married at Grand Wailea. Good luck to your husband and get that book. Even if you are steady you will enjoy it. I promise 😃
Here is the first review from Amazon of Love Medicine and Miracles which I highly recommend. It's only $2.99 on Amazon. Here is the quote:
If you have a loved one facing the devastating news of cancer or any life threatening illness, this is a fantastic tool to put in their hands or read together if it is your significant other or your child. HOPE lives in between the pages of this and the other books and materials from Dr Bernie Siegel.
My late husband and I had the blessing of attending Dr. Siegel's seminars and workshops back so many years ago and my and my hubby's outlook into his disease were forever changed. We had been handed a sentence by an oncologist that had no understanding that his job was first to heal. Dr Siegel changed that and I attribute to his teachings much of the time we had together that was far beyond the initial prognosis. My heart is grateful even after two decades since my beloved went on to meet the Lord because I recall how this loving doctor Siegel made a difference to us.
Today I find myself buying this book for one of my parents who has been diagnosed with Cancer. The journey begins anew.
Blessings upon all of you who are confronted with an illness that is threatening your life or the life of someone beloved to you. -- Please let me know if you find my review helpful. It is always nice to know writing these reviews makes a difference.
you certainly are not alone. my spouse still works full time so has no energy left at the end of the day. i have settled into a couch potato lifestyle so i can be with him but have had to learn to care for myself and do activities on my own. its been tough cause the kids have moved out and am dealing with empty nest syndrome a bit....feels so terribly lonely a lot of the time. winter has been tough especially. definitely take care of yourself and continue with massages , walks etc. i have found comfort with an online Anticipatory Grief Forum cause we certainly are grieving. stay strong and dont be afraid to not be strong too.
Feeling alone -- when the person is still there and *could* be there for you/with you is maybe one of the hardest parts. I lived in Wisconsin, and I agree, those long winter nights don't help. Hadn't heard of anticipatory grief -- but maybe will check that out. Thanks. and yes, do good stuff for you too!
You have to take care care of yourself if you want to take care of the man in your life with prostate cancer. Our new community is a place to share strategies for all aspects caring. Emotional, medical, relationship issues, fear of impending grieve, sex, love...everything that caregivers feel and think about, but may not feel comfortable discussing in a forum of men diagnosed with prostate cancer.
I'm so sorry you are struggling. I've struggled lately too...it's as though I collapsed emotionally after the fight-or-flight response to the diagnosis and early treatment. Sometimes a good cry is what we need.
I've just discovered the new page for PCa caregivers. I look forward to interacting more on that site, and bet you might also find it helpful. Please join us!
I am in my 5th yr of Stage 4 very extensive Mets and MO told me at DX I had this damn cancer 2/3 years before DX. My partner is a nurse who spends every weekday dealing with patients and comes home to me. A few years ago I read an 'open' apology by a brother who had seriously damaged his relationship with his carer...his wife. Reading that I knew I had to try harder myself and smile and be cheerful. When Shelagh asks me how I am I answer positively. A bad day is a bad day. A good day is always better than good. A hug is always better than either. Touch is so important. Like many I have lost the ability to make love but the intimacy from holding hands to curling up together becomes more important. I should add all 40+ Mets gone with chemo
Your man may be worried for you or for your relationship. We all know it is much harder to be a carer than patient. Much much harder. On this site there is an area for carers. Join in and don't be left outside. God Bless.
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