I love my wife with all my heart, and we have grown closer through our journey through this disease. It has been difficult at times however because my Wife's reaction to anything that threatens her "safety" (I'm struggling to describe this issue).
Let me digress to explain, Whenever I try to speak about the possibility of having to go on disability at some point, she gets very angry. This precludes any logical discussion or analysis of the options. If I'm depressed because, well this damn disease is a pretty good reason to be depressed sometimes, again I am met with extreme anger. I'm accused of putting a foot in the grave etc..
So how do I get past this with her? How do I get her to understand these issues, at this time, are eventualities we need to address? How do I get her to understand that yes, I'm depressed right now, and I will pull out of it? I won't stay there the rest of my days. Frankly it's not possible with my personality, and secondly I am conscious of the decision to entertain the feelings. They are feelings after all, and will come and go as they please. Sometimes you have to take them in, thank them for coming and only then can you let them go. Denying they exist just, for me at least, leads to a blow out when the emotions pile up enough energy to break through your facade.
Anyway I'm sure there are a few of us in this club no one wants to join who have, or are facing these types of support issues. Maybe we can help each other through?
Peace, and love be our best journey ,
Bees
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zenbee13
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Can you take some steps towards disability now? Maybe she’ll be relieved to have it all taken care of without having to deal with it herself. Esp if you don’t enjoy your job. The depression is debilitating for sure. Hang in there.
Personally with adt and castration I’m unable to deal properly with difficult people ie fighting for sales and commissions takes a lot of ass kissing and bending over for others. I can no longer kill myself in persuit of the o mighty buck.. I’d rather live the simple life instead of keep killing myself for money.. I’ve done that my entire adult life. We live on the edge with APC... hope that you can find balance with someone that you obviously love so much.. she needs a bit more compassion towards what you are facing together. United we stand, divided we fall . Not the time for division of ranks. I ll bet that many already unhealthy marriages dissolve instantly upon a bad APC diagnosis. Its no easy thing to inherit or to deal with. My wife accepted my proposal after we cried for two weeks and they told us I had under 3yrs to live if I even survived initial treatments , gave me 50/50 chance. We can’t hide our heads in the sand with APC . Gently help her to see that things have changed , we must change and adapt with our newly found needs. Love her with all of your heart and she will come back around.. I’ve found out the ugly truth of who’s who in my life now I have APC and no money.. It is only my wife here for me.. I than’ god for her .. I am still the luckiest guy in the world that she loves me rich or poor sickness or health.. big words with big meanings.. you will find solutions..I believe we all go thru many of the same thought processes and hurtles . Keep truckin, you are not alone...
I understand. The worst days for me are those days like today where my bone pain is severe, and she makes sure I am "up to speed" on my meds. That question just aggravates me, like I am too stupid to know if I am hurting that I need my meds..the other issue I have is her constantly saying out loud that things are not as bad as I make them out to be, that I am not as sick as I say I am, that my pain and depression are unreasonable for my diesease. I have already applied for disability, and even had SS on the phone discussing how to get surviyior benefits, etc for when the time comes. I also called the insurance company and had the rep go through with my wife what she will need to do to get paid for my life insurance policy - which she swears will be out of business before she can get the money...I would welcome any thoughts on any of this, but Zenbee I know exactly where you are coming from...every day.
With me, it is sometimes me that tells me that I am not that sick. Because I am often too tired to do something, or I have done something to brighten my day, which brings about a small change is my feelings of worthlessness. But I also realize the fears that my wife has about her future, sometime without me. All kinds of defenses come out when people are fearful or threatened by some people, some are not good at acceptance when threatened this way. My wife is one of those people. Sometimes if we as humans do not acknowledge something, it doesn’t exist. Oh man have we led ourselves astray.
Of course this type of thing always comes up when the stress is the highest. Communication becomes weaker under this much stress, which creates more stress, which does its damage to our immune system, and of course it brings on depression and anxiety. I hit my out of pocket maximum this year, which had never happened before, mostly due to co-insurance, which seemed to have gotten worse. Financial stress always throws fire on our flames.
Many things to consider, we are men and we gain identity through our work, when that is threatened all kinds crap hits the fan. Psychotherapy usually works, I can say this with a high level of certainty because I work in the psychology field. Good luck! Communication makes things better!
Don't know about the size or complexity of your estate or financial lives, but I can share that during the first year of my "incurable" Stage IV diagnosis, one of the things my wife and I did was to consult with a mediator/estate planner to go over some of the practical legal "basics" that would come to the fore as my disease progressed, my abilities eventually declined, and as my wife will likely have to transition to a life without me after I die. It was a worthwhile exercise. In the end, we had an Estate Plan containing a Revocable Trust, Durable Powers of Attorney for Health Care Decisions, General Durable Powers of Attorney, and updated "Pour over" Wills, etc., with lots of provisions for Survivors, the disposition of assets both inside and outside of the Trust, etc.
After it was done, it gave us some better peace of mind about such things, sooner rather later, when muddling through such things would be so much more difficult if coming in with no preparation at all. We found that just going through the "process" of gathering our information, and discussing the pros and cons of various items/possibilities with facilitating help, was beneficial in itself for helping us get our heads around who we were, what we wanted for ourselves and our survivors, and for driving out some more subtle, underlying emotional and perceived "fairness" issues that would come to the front when being faced with putting balanced decisions in black and white down onto various legal documents, beneficiary forms, etc. The process also facilitated our getting a realistic look at where our financial incomes/expenses, insurance needs, retirement accounts, etc. were likely to be trending over the next 2, 5, 10, 15+ years, regardless of the exact length of my future survival with advanced metastatic prostate cancer.
I also put together a Planner type of book showing all the various accounts and bills and other stuff that will one day need to transition from me to her, and have incrementally started shifting some of the month-to-month stuff out of my direct control and into hers, so that it all will not just dump on her at the time of my death. I've also done similar things with the amounts and timings of retirement accounts drawdowns.
(If I were younger normal Social Security Old Age Pension retirement age, I would also be looking into SSDI options, and various health Insurance options for coverages before Medicare Age, etc.)
Another thing we have done together is to attend a well-facilitated Cancer Support Group, which meets fairly frequently. It has worked much like a couples counseling group, but its attendees also happen to have some typically significant Cancer diagnoses, and it also addresses the medical/patient/caregiver sides of things.
And I have individually taken myself outside of myself and into some local area Prostate Cancer Support Groups, where sometimes nothing beats some face-to-face interactions with other men who "get it", and where some personal/local support can happen.
Finally, without the hindrance of being so "testosterone poisoned" so to speak (Ha. Ha.) while on long term Lupron, I've also found it very much helpful to allow myself the courage to be very much more vulnerable, and to share my feelings and emotions with my spouse, and to be more casually affectionate and compassionate and helpful around the house with her in our daily life. I think it helps both of us .... on days when we are feeling better, and on days when one or the other or both of us may be feeling fearful, sad, or just plain crappy due to circumstances or the effects of the disease or treatments. If in doubt, ask for or give a hug. They have some medicinal properties, I hear.
Having an incurable Stage IV diagnosis has been tragic and sad, but it has also been an eye-opening and valuable opportunity.
Just some thoughts, reflecting back, from our experience only, ...
Charles, your advice is great and it's what my partner (with PCa) and I did. When you used the word Planner, did you have a specific book in mind? I was thinking that it would make the process easier if this had been set out already in a well thought out plan. Best to you. I am very glad that you shared you experience. Roger
No specific book/product in mind. Here's just one among many that one could find at the usual on-line sources. (not an endorsement, just listed because it shows some representative structured topics/pages that such a thing might helpfully contain) Many of them also have downloadable files where one can "fill-in-the-blanks" and update periodically, as needed, after the initial customized printing at home.
Charles, what you did is almost exactly what I've done - everything possible laid out so Susan has minimal post-demise decisions. We've even visited the place my ashes will be scattered and I have a "Susan Book" (which, I presume is like your Planner) with suggestions about how to dispose of some of my effects which she might otherwise have difficulty in getting rid of and other helpful things she's requested such as my margarita recipe. It is a good thing to do.
Nalakrats, I agree my wife has always been in denial and we rarely discuss the cancer. The only discussion is when I go for a psa test she will ask about the results. This is partly my fault as I have made light of the disease mainly to protect her.
I suppose your wife gets very defensive whenever the possibility of your disease getting worse is discussed. That is understandable from her point of view as, ultimately, what she may be feeling is that she may lose you at some poing. But it is neither good nor helpful to react the way she does because she doesn't support you with this behavior and you actually don't get to discuss the things you need to discuss with regard to a possible worsening of the disease.
I think you could try to talk to her about it, in a situation when there the defensiveness hasn't occured for a while, to see if she is more open to talking then. Maybe you could discuss your pain and fear.
Good luck, it is a difficult journey for both of you to be on, I wish you strength!
Lots of good advice above. Have found individual counseling provides a good sounding board in addition to support groups. There may be some books as well, so any suggestions?
I, as the spouse to a loving 61 year old spouse with this disease really appreciate your question. In our journey together I struggle with many emotions. Anger is certainly one them. Anger at the disease. Anger at my scary future. Anger with God and on and on. My husband, who I love deeply is sick with a disease that he will most likely die from. I am traumatized. Deeply traumatized. We seek therapy. It helps me to share my feelings with him present. It helps dissipate the intensity of them. I am also highly sensitive to the emotions my husband is experiencing. We cannot handle this alone (for us, personally speaking). It changed how we look at life, our future and how we deal with daily situations. He is in more acceptance than I. He lives in the day. On most days I try to take his lead. Some are more difficult than others. We try to stay in ‘balance’ It’s ok to be angry. There is a lot to be angry about. However, when it is not serving the situation, it isn’t. I suggest therapy. I think everyone would benefit from therapy! Lol.
Blessings and prayers to all. I read here everyday as I seek to get what I need for the day from all of your beautiful and sometimes painful posts
you mention spouses...but I find this is true for ALL of my friends as well. They want to NOT hear anything except..."tests came out good". My partner will stand and appear to listen when I talk about pain, fatigue, fear....and NOTE...I say "appear". I think his brain glosses over when I am talking about things like
1. down scaling to one car...
2. applying for a handicapped permit...etc. But at least he doesn't go NO NO NO...and say "everything is going to be just fine" as my friends have mostly done...OR they have just disappeared. I
hear from what was supposed to be my BEST friend (we really were from around 1997-2010. Thing is he got a new BF and one that I and a bunch of our friends did NOT like...so now ...I get a phone call ...usually at least once every 7 to 10 days. My partner and I actually moved from Miami to a house about 1.2 miles from where he was living (before moving off with the BF...and only about 7 miles away). Before I moved up we saw each other 3 or 4 times a week and talked on the phone 8 or 9 times a day. Now, remember, it's down to a phone call...if I can catch when he CALLS ME...because if I call...I ALWAYS get his voice mail. Having moved 25 miles away from our home base...to Ft. Lauderdale....try making new friends when you are busying going to Radiation, chemo....HIFU...blood work...Doctors...Oncologists....and you've been castrated. I find people are not "keen" on getting to know someone for a "short" term....LOL.
Death and dying...like "income" are things we are taught to keep "quiet about". I guess there was no answer here....other than. G0OD LUCK with your treatments and I wish you the best as I do to everyone in this group.
I am a wife of a cRRPC patient. We have been married for 30 years, he is 18yrs older and a retired Police Detective.... basically he's not a big talker about his feelings. I have always been the one to research everything, get all the insurance, find all the drug assistance and PUSH him to get family trust set up. This is the 2nd time he has fought this battle, I do my best to make sure that he has to want or worry for nothing... it IS a daunting job but it is MY way of dealing with this disease. I refuse to think of life without him until I HAVE to. I thank GOD every day that he blessed me w/a strong fighter and that he gives me the strength to put him first. Sadly not all of us wives are the same and my heart goes out to those men that are in the fight of their lives. All I can say is hang in there, I have no doubt your wife is scared to death right now and hopefully she has someone to talk to. If she dosen't I would be happy to be that person. If you think that would help let me know and I can provide you my email and/or my phone number. STAY STRONG ♡♡♡
I truly think it’s fear that she has. Fear for loosing you and fear for the future. Any change in the normal routine and in how you normally are as a person can be very scary to her and maybe that comes out as anger from her.
Hey zenbee13, no matter what plans we had before APC , after dx everything changes. We are dealing with the devil and we are all living on borrowed time once we start treatment. The torment begins. You re not alone in this.. anger on either side of the pattership can derail what should be for you and I a zen like state of peace and healing.. in my house , I , not my wife held the anger. For the first yrs up until just a few months ago. I was mad , I didn’t want to give up my male ego , my life of being the strong leader and provider diminished to a struggle to survive another day .. battleing depression , weakness , hopelessness. My wife never faltered. I’ve been on the poverty line officially since dec. I’ve been on disability for a couple years. Now my dr is jumping up an$ down saying that I’m cured. Wonder if I can hang on to my disability.. ?.. without that , we are screwed big time.. no way I could work and handle the stress of being a salesman and working for commission. I spent big bucks on alternative treatments at my wife insistent behest.. ,so,far it has seemed to work .. disability is not a foot in the grave... don’t talk about dieing to her, my wife hates wheni do that.. nobody is getting out of this alive. I hope that you’ll find peace without any more anger.. we can be angry with medical mistakes with financial woes but we can’t be mad at our partners. No body wins with anger. In martial arts we were taught that the one that loses his temper loses the fight. We have plenty of things to be angry with. She obviously has fear ..and denial is a factor. APC is not an immediate death warrant for most of us.. I pray you two will see eye to,eye and pass up anger and fear.. only then do we begin to live our new ly altered life t9 the fullest . You have love, the Symantec’s can be worked out with acceptance.. Good luck and god bless you both..
Hey Bees , you got it right. Love is all that matters in life.. She will come around.. it’s not easy ,but we all need to adjust to a new life and appreciate something everyday even in the face of death.. if we could we’d jump ship , but that s not an option. We are strapped in . So row , row , row, and enjoy the view before we all go over the falls. Peace brother.. If it hadn’t been for disability I would have been hooking down on the corner just to keep the lights on. Get what is owed you. You payed into this your entire life. No,shame in that. don’t listen to that foot in the grave stuff . I was written off 3yrs ago by everyone except my wife. Her love pulled me thru. We all have one foot in the grave but a few lucky suckers might just beat the odds and live for awhile with some degree of happiness. Can’t take to heart ant negative thinking from others, especially from our partners. ENJOY YOUR DAYS..
It’s nice to finally hijack my husbands account as I avidly read all posts and learn so much. Thank you for sharing so much of yourselves on this site. I read the account above and feel for both yourself and wife. My husbands diagnosis brought a sense of fear to my life I had never experienced before, anger that all we had worked for together would only be experienced by me, how would I cope. I feel as if every feeling he has is echoed by me, I get acute anxiety if we even have a call from the hospital. We have four children 16-5 and I also have to ensure their lives are as unaffected as possible. Her reactions may stem from fear and loss of control, I’m sure her reaction is a misguided attempt to keep you upbeat and focused on a normal life. I immersed myself in research on prostate cancer and now have a treatment diary we keep but it definately became my only focus for months. I have been married since we were 18 and we are now late forties so at times I feel cheated. I respect my husband and if it’s possible I love him more now, he’s my brave soldier and we battle together. Your wife loves you and I’m sure she will get her head around this. There have been times that I have reminded my husband that it’s not always all about him and that the children and me need his support like we did before. I’m his rock and he’s mine that’s it in a nutshell. I don’t physically battle cancer but I battle it mentally everyday. My husband needs positivity from me everyday and that’s what I give, perhaps you could introduce this site to your wife. The posts I read are inspirational and my husband will often walk into a room to read me a post. I thought I would share my female response with you. I hope your wife is able to work through her emotions and begins understanding your journey but it sounds like she’s scared. I had better give the phone back to my husband as I’ve enjoyed my hijack too much. Good luck to all you amazing fighters. 😍 Faith (wife of Anthony)
At some point I will get her on here. I think that will help. I agree that the posts here are magnificent! These people give great insight, and have experienced so much. I am humbled.
Right now, her major focus is on July 21'st and our Oldest Son's marriage that day. So with that I am keeping a low profile on the C. I want that day to be all about the wedding and family joy.
I believe that our wife suffer more than we do.. Thank you for being there for us.. without My wife by my side I would not want to be here. Love is all.. Take care , peace in your heart.. you are great!
There are a few things going on with her. She is scared and in denial. She is trying her best to keep everything the same as it has been so she doesn't have to face that everything has changed. While your actions are perfectly understandable, it probably feels like you are challenging/fighting everything she is doing.
She is trying to keep you positive and when you say things that come off as negative, it sounds like you are giving up which then sounds like you don't care what she does.
Most likely you are the one she leans on during hard times. Yes, it is your body, but you are her world. This isn't just happening to you. It is happening to her, also. Like you, her marriage/relationship/life/future has changed and it is every bit as scary for her, too. You have a big support system i.e medical team, family, friends and her. While the friends and family are around for her, they really aren't her support system. When most of them see her, they usually go straight to asking how YOU are doing and don't even ask her about her anymore. They also are really careful what they say to you, but not to her. With her, they will brush it off and say stupid things like: "prostate cancer is perfectly treatable", "you have to be strong for him" (no shit!), "I hate that he's having such a hard time" (again, no sh**), "wow, this must be terrible for him", etc. My point is that she really doesn't have a support system and is so busy worrying about you that she doesn't realize that she desparately needs one. She is going through this alone. Even if it were reversed - she was chronically ill/you were the role of care taker - people would be more compassionate toward you. Women are expected to step into this role and just handle it because we are raised to take care
You have the choice to unconsciously push her away with your words or you can acknowledge how devastating this is to her also and let her in and treat her as the partner that she is.
There is a prostate cancer caregivers support page on facebook - the people are kind, informed and it has helped me a lot. I wish you both the best. This disease sucks so bad.
Oh my goodness! I think you hit the nail on the head! It brought me to tears.
A couple of weeks ago I was golfing with my son and he reflected much the same thoughts to me. He is the youngest and the most like me. He told me that both my wife and my oldest son look to me to be their emotional rock, and that attempting to speak my fears to them does as you say, it shakes their world and appears to them that I have given up, as I have always been the "positive" rock for them to cling to in times of trouble.
He is actually more wise than his Pop, and knows how to work with all of us. He let me know that he will be there for me when I have to go through the negative emotions. He understands that you can't deny the emotions, and must go through them to release them.
Blessings to you! I will point my wife to the caregiver's page on FB.
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