Caregivers of Advanced Prostate Cancer Men
Prostate Cancer Caregivers are wives, husbands, sons, daughters and friends. Partners and spouses; lovers and mistresses.
Metastatic prostate cancer and castrate resistant (mCPCA) bring caregivers closer to death. Caregivers tell us they want is truth from the experiences of actual caregivers.
Below are quotes from interviews and Malecare prostate cancer support group attendees.
Please email info@malecare.org with quotes of your own…we’ll add them.
Voices of Spouses and Partners as Prostate Cancer Caregivers
(scroll down for voices of sons and daughters.)
Nobody believes he’s sick so we even stopped telling people.
His job is live his life, my job is to do research – he’s on a need to know basis about his prostate cancer.
Let’s just take this more slowly and figure out exactly what’s going on before you get rushed into surgery by the urologist.
I go to every doctor’s appointment because I take notes. I advise that for wives or caregivers. Go with him.
I think it would be very hard for people who don’t have 100% honesty in their relationship to manage this disease.
The doctor talks and we hear two different things. He’s too freaked to hear the truth. I am the truth-teller of what the doctor says.
Maybe there are spouses who would want to protect their husbands from stuff but we’re just not like that. That’s why 100% honestly is kind of critical.
I’m always listening for the intimacy side effects of treatments. Those affect both of us.
I have a healthy skepticism about the medical community and I think you just think have to be your own advocate.
You are two people; a team is better than a single person when you have to advocate through a hospital system that can be very bureaucratic and difficult to understand.
The one thing that a stage four lets you know is that he’s going to die.
Every treatment should be looked at through a quality of life filter.
He may think I just want him to be alive. What I really want is for him to be happy. Life isn’t worth suffering.
Doctor’s will never tell you the side effects. They just won’t. They don’t. They haven’t had the disease. Even if they know them, I think they’re disinclined to share that because they’re all about extending your life.
You’re going to be a caregiver, you need to know all about the side effects. Women will tell you about the dizziness, the diarrhea, the tiredness and the anger.
Women being honest with women in a safe place where they feel that they can talk to each other, is critical to let you know you can do this. If I can do this, you can do this.
One of the decisions we’ve made was you can’t take it with you so we travel whenever he feels well enough to go. I tell him all the time, he’d better die or we’re going to go broke because we’re spending about 40,000 dollars on travel.
Being a partner in all things is a healthy experience for you.
Knowledge is power. Knowledge helps to manage things. Knowledge reduces anxiety.
We’ve cried about this once and the only time he cried was his concern for me. He was like, “I don’t want you to be alone, I don’t want to leave you.” I was crying too, “You’re right. I’ll be a mess.” That was that. We just live everyday.
Nothing changes your life more than the words stage four prostate cancer.
I have no sympathy for the hot flashes, having experienced them myself. He and I both struggle with our weight and we do our weekly weigh in’s and he’s done pretty well. He’s only gained about 15 pounds. We joke about his breasts and we joke about that he now wants to start going shoe shopping with me. Every symptom we just joke about.
If he’s not worrying then I’m not worrying.
There’s so little that we can control. We’re both well aware of what’s controllable and what isn’t. That helps.
I don’t want to live in this disease. One of the women who’s husband died, thought about being involved in prostate cancer advocacy and she said her husband told her, I had this disease, you shouldn’t have it for the rest of your life as well.
I don’t like to remember things by how they end.
Your sex life is not over.
I think enjoying sex has to do with the nature of couple’s relationships around intimacy and sex and what constitutes sex. I think that is one of the saddest things I see is that distance even gets larger when people think that they can no longer be sexually intimate.
Sexual self-gratification for wives is a good thing to do.
We have appointment sex and we have a bunch of sex toys for when it doesn’t work before because every once in awhile it doesn’t work.
You must open up a large conversation about what constitutes intimacy in your relationship. If you don’t, you’re going to drift further apart and feel more isolated and depressed.
I object when my partner thanks me for being there for him and all of this notion that it’s really more difficult for the caregiver. I don’t buy it at all. I think the person with cancer has got a much tougher burden to carry.
I sometimes apologize and I really don’t anymore for saying that “we have prostate cancer” because my partner and I are so tied at the hip. He doesn’t mind that I feel that way and really wants me to be a part of the whole process. When he goes to the doctor, when he has a procedure, when he does anything, I feel as though it’s my place to be there.
My life is his life and his life is my life. I know it sounds so ridiculously codependent but I really don’t give a shit. That’s the way it is for me. My partner has been the best thing that every happened to me and my intention is to have him live a long time.
I didn’t really want to get a prostate cancer test. Peeing was a little slow for me and my partner noticed it and so he said, “I think you ought to be tested.” I said, “I don’t want to be tested.” I can’t imagine a worst nightmare than having to go through two people with prostate cancer at the same time. I was tested and mine was totally normal.
The worst part of my experience as a caregiver is just watching my partner suffer with hot flashes.
I don’t know what going to happen tomorrow and I don’t know what’s going to happen with the treatments that he’s going to have to get involved with.
We had been together close to 30 years when he got prostate cancer. We’re men of a certain age and we’ve been together forever and we finish each other’s sentences. Everyone says, “Oh that’s nice. That’s cute. I said, “We got to get married.” I don’t want to walk into a hospital and find out that I don’t have access to either you or the medical information. Literally we turned around on a dime, we went to the Justice office and got married.
He’s constantly asking me whether I’m okay. He says, you have the burden of someone who has to worry about what’s happening, keep track of how we’re doing, be concerned about how’s he’s feeling, concerned about his exhaustion or hot flashes or just not feeling right and he sees that as a very painful experience for me, but it’s my life. I don’t want another life.
I can’t share my pain. My partner has prostate cancer. I’m not going to bother him with my anguish.
When things don’t seem to be going well, I would never try to expand on the notion that the fact that it’s not working or whatever we’re doing is not working. It’s always my view that we need to look ahead and see what the possibilities are but I understand what the guy is saying. That’s exactly where I am.
Staying in good physical condition is very important, it’s tremendously helpful for us to work out and go to the gym together. I think that takes my mind off of the physicality of whatever we’re going through.
Voices of Sons and Daughters of Prostate Cancer Caregivers
My dad really needs a full-time caregiver. It’s pretty much a full-time job. I mean, he’s fairly independent, but he likes having me here. I take him to the doctor, and he’s being treated at a cancer center. When he has appointments, it’s a full day.
My dad is the dearest person. It’s wonderfully rewarding. I never had any kids, so this is a chance for me to pour out all my nurturing instincts on my dad, and even probably more than he wants me to. I’ve been very active in researching cancer treatments.
I find tremendous satisfaction in keeping, trying to keep up with the research and working with my dad’s doctors to figure out the best way to keep him healthy. It’s become a career in a sense.
The only downside I guess is some lack of autonomy. My whole life revolves around my dad, keeping him happy, making him meals, taking care of him. Even when I want to do small things, like go out to the movies with my friends, or go to the theater, my dad feels abandoned a little bit. Sometimes I feel so guilty when I have to be away. But that’s really the only negative. It’s been a blessing to have each other.
The older I get, the less I worry about it, and the more focused I am on keeping him healthy and enjoying the quality of life we have together.
There weren’t decisions to be made, really, because we followed the advice of good doctors and and we’ve been pretty much agreed on the course of treatment, and it’s worked well so far.
Sometimes my dad gets frustrated about going to the doctor all the time, and he hates the testing and all the CTs and the bone scans that it requires, but he realizes that this is what’s keeping him healthy. We’ve been lucky to have good doctors who’ve given us advice that we recognize the wisdom of, so there haven’t been any disputes over the course of treatment.
I’m always in the doctors office. The doctor talks to us together, so I don’t think there’s anything I don’t know – I’m sure there isn’t – about his treatment, and he’s pretty vocal about his wishes, so I don’t think there’s anything that I don’t know.
I’m about as close to my dad as the average person, but it really wasn’t until he got sick that I was able to find the power and the nurturing within myself to be able to tune in to his feelings.
If you can see caregiving for the blessing that it is, it helps relieve the anxiety and makes you realize really this is a wonderful opportunity to be selfless and to relish that.
I’ve got a friend who’s always bugging me about, a couple friends, one I talked to today about, when do you want to go back to work? As if care-giving is not a full-time job. It really is, and I wish people would understand that and how much energy it takes, and not think that you can just kind of do this part-time.
It takes a long time to get over other people’s expectations and it sounds like a cliché to say that caregiving’s not valued, but I think that’s really true. This is such an important role for me, and I wish people would just accept that this is valuable, and a valid choice for a professional woman to give up her career.
I read about these brilliant superwomen who are holding down full-time jobs and being full-time caregivers, and well, you can’t do everything. I’ve heard so many of my colleagues where I was working, who were working in the Northeast, and had a mother in a nursing home in Florida who would say … I’m my mother’s caregiver. Well, no you’re not.
A real caregiver is someone who is there all the time, taking care of the person’s needs and feeding them and listening to their worries, but as a society, it’s like child-care. We shove that off to somebody else, because we’re doing something more important. I think caregiving is really important too.
