So here's my background for those who dont know me from the BMT forum: I am 24, my husband is 25. He was dx with pre b ALL 12/22/10 when I was 12 weeks pregnant. He had an allo SCT 3/2/11. Our daughter Kaya was born 7/8/11. Nate has struggled with depression for many years and this experience has compounded things, even more so when his dad died in September. Nate is also still disabled about out of work.
It's been kind of a roller coaster ride with him. He went back to work in September as the maintenance tech he was before getting sick. Then his dad died a week later. Nate immediately started hating his job and was obsessed with getting back into woodworking (his dad was a woodworker, and Nate was for several years before getting laid off in Jan. 2010). So He had a mental breakdown of sorts in December and had to stop working again because of that and some cGVHD issues, and subsequently lost his job. He has been out of work since.
He is extremely depressed. He is on antidepressants and sometimes he's okay and sometimes he isnt. He has lot interest in most things in his life that he used to enjoy. He said he feels numb and doesnt know sometimes if he loves me or our daughter any more. He said he just wants to leave us and be alone. He also said that if he found a woodworking job far away, he would leave me and the baby to do that. But he also just said he wants to be alone and he doesnt know why. He told me tonight that he is depressed because he doesnt know who he is anymore and he is having a hard time rediscovering himself, and that if he just moved away, far away, and was alone he could find himself again. Of course, this is just him today; yesterday he was feeling okay and was having fun playing with the baby and spending some family time. It still hurts to hear it. After I stood by him, took care of him through his darkest days, took the weight of the world on my shoulders to be there for him while I was pregnant and then while I was a new mom. It hurts to hear him say "I dont know" when I ask him if he loves me. It hurts to hear him say "I just want to be alone" and things like he would move away if he found a woodworking job, even if we couldnt sell the house and I wouldnt go with him. He said he would rather have that job in woodworking than have a family right now.
I am trying to be understanding. If we didnt have our little girl it would be a totally different story. I'd say go; if you dont know if you love me after all we;ve been through and after I have stoof by you, then you dont deserve me. But we have this incredible daughter who deserves to have her father. And I deserve to have my husband there to be a parent and be a part of this family. I told him i get that he is depressed and that he is having some kind of midlife crisis because of the cancer and then because of losing his dad, but that he cant just abandon his family. It's just wrong. Ultimately he is going to do what he is going to do, but it just seems so wrong. That he values some woodworking job more than his family. He doesnt know who he is, he says. Well, I can tell him who he is. He is a husband and a father. His job is a part of him but it doesnt define him. And truth be told he isnt physically able to go back to work yet anyways, let alone a physical job like that. Maybe that's why he's so all over the place, i dont know. It's just hard.
Have any other caregivers gone through something like this? Or any patients been in Nate's place and gotten through it? How did you handle it? Did you just give up and go your separate ways or did you stick it out and fight for your family? I just need help right now. It hurts so, so much to hear him say those things and I dont know if he means it or not. All I know is that our little girl, our 8 month old daughter, loves him to death and needs him in her life. And she deserves him.
I have been following your journey and I find you quite a remarkable young woman and Nate would be crazy to leave you and your beautiful daughter. I think the poor guy has had 2 horrible events knock him for a loop, the cancer and loosing his dad. I know that when my dad passed away I was in SO MUCH pain and I almost left Kathy. I was so mad at her for not making me feel better... it took my friends telling me to not make any major decisions for a year and a real good therapist for me to see it was my pain and no one not even my long term partner could take the pain away. It was not her job...I am a pretty controlled person, so the pain from the grief of loosing my best friend and supporter ie dad was physical and deeply emotional on a level I would never have anticipated....I also know from watching Kathy recover from a SCT that she struggles with who she is now....Her life was interrupted and some of her plans changed and her new energy levels do not match what she could do before dx of AML. Has Nate talked with his therapist about his dad's death? Kathy used to tell me I was a rubber band that had been stretched with my dad's death... she hung in there even though I was a beast.... 10 years later I was able to make it up to her by caring for her through her illness...maybe some couples counseling??? you have tons of support on this board
It's weird though, about his dad, because he wasnt close with him at all. He always said he was a terrible father. Nate would talk about how his dad would belittle him and call him stupid and would never come to parent teacher conferences or to his baseball games. He just wadnt close with him. I guess maybe he feels guilty about that now that he's gone and he's trying to compensate, i dont know.
He does she a therapist now, every 3 weeks. He has not brought up the issues with his dad or any feeling he has about the cancer and how it has affected him. She invited me to one session and we talked about making a relationship fair, about what we both wanted from it, etc. and it went well. That was about 6 weeks ago. His depression just comes and goes it seems. Or, it's worse on some days than others. And he doesnt talk about it with his psychiatrist at Mass General (the one who does his meds) because for whatever reason he is always having a "good" day when he goes.
I dont know. I had him sleep on the couch last night. this morning he just wants to sleep and sleep and avoid everything. I told him that if he feels like he doesnt love me or that he wants to just leave and abandon his family, then I need him to leave now. Pakck a bag and go stay with his mom for at least a couple days so he can figure out what is going on and so I can get a break and not blow up at him. He refused to go. So i dont really know where we are now.
I'm hoping as time goes on it will get better. I know it's all related to his severe depression. What isnt helping his depression is that he has extremely low Vit. D and pretty low testosterone. Those are things we're working on. It pretty much just sucks.
No he isnt on steroids; they tried them in like August and he got "roid rage" and they stopped them and just put him on another immunosuppressnt, cellcept.
It's just tough; he is so completely crippled by his depression and is so miserable and refuses to do ANYTHING that anyone suggests (therapist, shrink, me) to help him feel better. He just wants to sleep and not leave the house and mope around and that's it. It's hard.
Hi, I am new to this board (waiting for a diagnosis) but I have been through a similar experince with my husband though it wasn't a LSS cancer. He was diagnoised with testicular cancer when he was 29. He went through a horrible bout of depression after - admits to it now -but at the time no. That was 14 years ago. He shut out all his friends. Refused to leave the house - except for work, thank goodness. I got pregnant shortly after his surgery and did most things myself for the baby as he had not much interest in anything. I talked to my family dr and had him talk to him - and it helped. He eventually snapped out of it - but it was a good 3-4 years. Its hard dealing with cancer at a young age - its hard as a couple too. My family was wondering if he was still alive as he wouldn't go to any functions - I always showed up alone. i just let him be alone and went on with my things - tried to be with him when he let me. Not saying that will help you - but it worked for us.
Wish you all the best!
Thanks for your response. Nate does see a specialized oncology psychiatrist at Mass General, where he gets his medications, and he has a therapist (a clinical social worker) that he sees locally weekly.
I hope it does not take 3-4 years. The past 6 months have felt like an eternity. I have so much respect for you, to stick it out for so long when it was so hard.
Sadly, Nate is not back to work yet and is not able to return yet physically. I am also out of work, as Nate is incapable of watching our 8 month old and we cannot afford to send her to daycare on the money i'd make from working; i'd be working just to send her to daycare. I take our daughter out and we do things every day, and I play with her, feed her, read to her, sing to her, etc. and consider that my job right now.
I am hoping and praying that once he gets motivation to get active, that he will start to get stronger and he will be able to return to work. Either that or he will be stable enough to watch Kaya while I go to work.
I dont know; it's been a long road. It's hard. I struggle every day to try to help him and it is exhausting.
Well it looks like Nate is going to be getting ECT (electroconvulsive therapy). His doctor just started him on abilify and wants him to give it about a month-month and a half, but said that because Nate is in "such good health" (funny to hearafter having cancer lol) and because his depression is medication resistant, he is a perfect candidate. He wants to try the abilify, though, as a last effort to see if it will help, and also to make a case to the insurance company (as they sometimes only cover it as a final resort).
We leave for Jamaica in a little over 3 weeks and I am nervous about his mental state. 3-4 days out of each week he is crippled with depression; today he couldnt even get out of bed. I am hoping that he will at least be able to enjoy his vacation. He has assured me that there is no way he will be miserable in paradise, but I am worried.
Anyways, after we get back, if the abilify doesnt work (and I think we are all assuming it wont) he will go in for probably 2 weeks in the psych ward where he will get 3x weekly shock therapy. They are saying nowadays it is actually safer than a lot of meds and more effective. I am of course nervous but he said he cant live like this any more and to be honest neither can I. I think we are both at the ends of our ropes and hoping this is the answer.
Has anyone else undergone something like this? I googled (bad, i know) and found a lot of bad experiences and only a couple good ones...)
One of my oldest friendships is with a shrink that I met when I was in grad school and he was in med school. From conversations with him, I know that ECT has come a long way in the 20 years he has been practicing. The procedure has been refined and in many cases it has remarkable success. I hope you and Nate have a great vacation and they can find away to get his depression under control.
We have also heard positive things about ECT from Nate's psychiatrist and his therapist. While it has risks as far as memory loss and such, they say it has saved lives. When Nate was in the psych ward at Mass General last December, he met 6 people who were in getting ECT treatment, and they had nothing but good things to say. It makes me nervous because of all the negativity attached to it, but I think we are both hopeful that it will help him find himself again; he's been buried under grief and depression for a very long time.
We are really looking forward to our vacation. It's only 19 days away! But, who's counting?
I have not gone through ECT, but I do suffer from depression/anxiety combo that took a while to be treated effectively. My experience for about a year was very similar to what you're describing with your husband, because I was on ineffective medications. My third antidepressant I tried, Effexor, finally worked, at 225 mg. I don't know what medication he's on but wonder if he's tried effexor...my psychiatrist says he puts people on it after 1 or 2 failed other ADs. It works on the three mood chemicals at the higher doses. I think I remember abilify was one to be added with an AD to boost it? I am a member of a great forum geared for mood disorders~depressionforums.org. I would suggest asking your question there.
Also, cancer, a father dying, a new child, and loss of a job within a little while...honestly I'd be a basket case too. I'm currently trying to deal with my dad dying of leukemia, and it's all I can do to keep it together.
my husband has been ill for the past 5 1/2 years...i can understand some of what you are going through and i'm going to be blunt, it sounds like Nate is being selfish (yes, people with cancer can be selfish too). it sounds like the depression has got quite a hold on him and he doesn't even see that he is being selfish. as hard as it is (i get it..you are sacrificing for him, taking care of him and he says 'i don't know') but this is marriage...for better or for worse, right? try to hold on and love him through it. don't give up on him or your family. you can come out of it. in time he'll see but right now, he's blinded by his anger, depression, and circumstance. try to focus on caring for your family and cry the pain away. you have the right to feel what you feel; don't feel guilty about it. just know that it really isn't you...he is angry that his life has been stolen by cancer and you are the closest target that he can express that to. be thankful that he trusts you enough to be honest about it. in time, he'll see what you and your daughter really mean to him.
I think sometimes that he is being selfish, and I've told him. I've told him that his needs cant always come before my own, though mostly they do. Today for example is my birthday; we got back from a vacation to Jamaica last night and instead of letting me relax for even a second, he was "too tired" to help with the baby or give her a bath or anything.
For the most part though, for the last 2 weeks or so, he's been better. definately has good days and bad days, but it's been worse. He sees an ECT specialist Monday for a consult so we'll see how that goes.
For now, I just have my war face one ready to trudge it out. I'm hoping I have the patience.
As a lymphoma patient who has had treatment (much milder than SCT thus far), all I can say is that a cancer diagnosis- at any age- is like receiving no other news in your life. Someone who has not been there can not possibly imagine.
Whether the treatment cures or successfully "treats," it is a threat to both your life and ability to live the way someone would want to live. As a guy, I can say that the effects on career, relationships with family/friends, etc. are also very real-- and common necessary medications (e.g. steroids) can make it worse.
There is a difference between selfishness and "self-survival."
The staff at Mass General is very capable in this area, and 14 months since treatment is short time.
I think it's harder as a caregiver when you try to do things to help, don't know what to do, and become frustrated. Just "being there" and understanding the good days vs. bad days are to be expected for awhile (not permanently) is probably the best way to help.
Patients say all sorts of things when they are struggling physically or emotionally-- please don't take it at face value.
While I agree that the diagnosis is something I will never truely understand unless I myself get cancer, I don't think it should be the go-to excuse for all of his behavior. A lot of it has to do with that, but I also think a lot of it does have to do with him being a bit selfish. His complete refusal to feed our daughter baby food just because it isn't easy has nothing to do with the cancer, but is just him not wanting to do it. So everyone going on it really a combination of everything. He was fairly unstable even before the diagnosis but had everything under control. He actually had everything under control through treatment and everything, right up until his dad died last September. His therapist actually thinks his anger and depression stems mostly from that rather than the cancer. But, I think it was just the thing that pushed him over the edge; he does have a lot of anger about his diagnosis.
I do think that it's both selfishness at times and self survival at other times. The selfish part is frustrating. As are his mood swings, but those are all part of the bipolar disorder...
please believe me when i say that i don't pretend to know what it is to get such a diagnosis for myself...it's something that i can only try to understand and i'm sure my trying doesn't come close to the reality. however, having been right there with my husband, i have a ring side seat to the madness that cancer can cause both physically and emotionally. i agree with Lottie...while as tragic and devastating that cancer is, it cannot be an excuse to emotionally destroy those around, unintentionally or otherwise, especially to an around the clock caregiver who is right there, taking it with him. there are things that those of us without cancer cannot possibly understand, and by the same token, there are things that care givers go through that patients can't understand. it can be a lonely road sometimes.
i agree, there is a difference between self survival and selfishness...i get selfish at times too but i cannot treat people however i feel that day and think that's ok because my husband is sick, and while that does happen, i have to understand that it takes a toll on others and i have to be more considerate of them.
sometimes we care givers need to know we're not crazy...people can look at you funny for being upset with your husband who has cancer and we should just take it and we do, but it gets hard on us too. cancer is no picnic for anyone...we all have to keep hanging in there and continue to hope for the best..
I literally JUST responded to your post in the ALL forum. So check out there for a lot of info
How do I cope? It has been hard. Especially with Nate's depression. Nate started electroconvulsive therapy 2 weeks ago and he is a new man.
I did it all, while pregnant and a new mom, because I had to. I was 8 months pregnant, working 40 hours a week, and cleaning my house top to bottom every day, bringing nate to and from appointments, and caring for his every need. I just went into auto-drive.
I also stopped working after Kaya was born. Our mortgage has something called a moratorium where they suspend our payments until he is better, and where he has disability insurance on the car and credit card, our monthly bills are diminished. This has allowed me to focus solely on caring for Kaya and Nate. We dont have to pay for daycare, and I dont have to worry about having to miss work to take Nate to his appointments.
Sometimes I dont even know how I did it. I think back to being pregnant through all his treatment. I remember just being overwhelmed with determination. Walking the halls of the oncology unit and going to the clinic for his outpatient visits, and getting sad eyes from people once I started to show. And then when she was born, bringing her to clinic and up to his inpatient floor and letting all the doctors and nurses who meant so much to us meet her. The doctors and nurses have become family and friends. That makes the doctors visits much more enjoyable.
But, I really dont know how I got through it, especially once Kaya was born. It was hard. But what choice did I have? And now, 17 months after his diagnosis and 15 months (tomorrow) after his transplant, we're doing good. His blood counts have normalized. The constant fear is getting much duller. The stress has turned into more of a routine. It's become my new reality.
One thing I learned was that I had to mourn the loss of the life I though I would have. All my hopes and plans and dreams went out the window. Allow yourself to be sad and anrgy and all that. Mourn it. And then refocus. You can make new hopes and plans and dreams.