A Conversation with a Caregiver, Presented by AARP

5/17/2021

A Little Light in Heavy

[It started slowly as we caught up to where we had left off the last time we talked.]

[Just] Mike: The last time we talked, we were talking about the fact that guys, in general, don’t like to ask for help; they basically don’t reach out, even when they need help. One of your statements was that it is a strength to admit that you need help; it doesn’t show that you’re weak, because no one can do everything on their own.

[Dr.] Mike: Asking for help goes against men’s programming. If you’re taught to never ask for help, like most guys are, to just always pretend that you know what you’re doing, and then if you say, ‘hey I need some help,’ that actually requires more strength, because you’re going against things that you were taught.

[Just] Mike: What would you suggest to guys who are sitting on the couch, doing everything for their wife, as they are taking care of dealing with cancer; guys who won’t ask for help. How do they break that cycle that they’ve been taught?

[Dr.] Mike: It would really depend on the guy and the unique situation; they are not the one with the cancer but then again, they are very stressed by the whole situation of caring for their loved one with cancer.

[Unbeknownst to Dr. G, I had arranged to have a friend from college join us. After he joined the meeting, he stayed quiet, just listening for a while. His name is Paul Soucheray, or Souche. I’d met him 35 years earlier, while in college at St. John’s University. The three of us had travelled abroad together while in school, studying in the south of France in the Fall of ‘86 when we were juniors. We’d lived at an international college in Cannes, France, 200 feet from the Mediterranean Sea. After college, I kept in touch with Souche, though we were never as close as we were during that semester in the fall of ‘86, while in the south of France. So, when I heard through Facebook 9 years or so ago that Souche’s wife, Jenni, who I had known from my college days, had breast cancer, sure, I felt bad. Yea, I felt bad. Of course, I felt bad. But did I reach out to them and offer real support? Hell no, I didn’t reach out to them. I figured they’d get through it. I watched on Facebook and it seemed to me that it was bad, but they were making it through it; so I didn’t reach out, and I didn’t offer any real support. Then, 3 years ago, when Tracy was diagnosed with cancer, Paul and Jenni did reach out to me. They did offer support right away. In fact, I came home one time from a hospital stay at United and found gifts on my steps with a note inside expressing that support that I hadn’t offered to them. And, over the years, it was a constant text message that I’d get from Souche. It was something I looked forward to (a lot of times exactly when I really needed it!) just asking how I was doing; how is Tracy? He understood, I could tell, and he stayed on me. He got it! Thanks, Souche! I never said it, but thanks, Paul, for that constant support!]

[Dr.] Mike: You have to recognize the situation you’re in, even though you’re not the one who is sick, your situation is still worthy of support. You have to be open to accepting support.

[Just] Mike: If you don’t do it – if you don’t ask for and accept support - you’re not going to succeed; your family is going to suffer and so are you.

[Dr.] Mike: Right. The first step is that you need to be propped up. Kind of, ‘let the village help you!’

[Dr.] Mike still hadn’t realized that Souche had joined the meeting. In the background, I had texted Souche to just pipe up with something appropriately derogatory to Bump’s latest points.]

Souche: That’s a bunch of crap and you know it!

[Dr.] Mike: Yea, right!

[Dr.] Mike: I could tell something was up. How you doing, Souche?

[Just] Mike: Yea, right you did. Why can't you just admit that I got you? I had talked to Souche over the years, and he told me about his situation with Jenni and her breast cancer, so I secretly invited him to join us to discuss his caregiving! Souche, what would happen if someone in your office grew a beard like that?

Souche: I don’t know. We’d probably take them behind the building and beat the crap out of them, right?

[Just] Mike: Souche, could you share how your caregiving situation was with Jenni.

Souche: I can laugh about it now. 9 years ago this month, Jenni was diagnosed with Stage 3 breast cancer. If anybody could be the poster boy of how NOT to be a caregiver, it’s me - this guy. It’s taken me 9 years to get my act together, so to speak, in many different ways. It was 9 years ago this month and like I said, nothing prepares you for it. I didn’t handle the whole caregiving situation well at all, frankly.

Souche: I was listening to you guys speak a little before I got on and Mike was talking about how, as a caregiver, you have to be vulnerable, and you have to change your dynamic; you have to change the way you’re programmed. If anyone is programmed in the 1950s world, it’s me. So, when cancer hit Jenni, I didn’t want anything to change. I still wanted it to be about me. I still wanted to be the dad. I still wanted to be the breadwinner. I still wanted to be the husband, and I just didn’t know the first thing about handling what we were going through. Like I said, it has literally taken me 9 years to recover and deal with it. I’ve been in therapy for a long ling time to learn how to become more vulnerable and how to become nurturing. I’m a long way from both, but I’m infinitely better than I was.

[Just] Mike: I should talk to you, Souche. My transition is a work in progress.

Souche: The biggest thing I heard when Jenni got sick (I think it was from a therapist) was, ‘you have to sit in the puddle with her.’ I’m like, ‘what?’ All this was still so new. I said, ‘what do you mean - sit in the puddle?’ He explained it to me: ‘you know when you’re a kid and you got shorts on and they’re dry and you sit in the puddle and it just feels so horribly uncomfortable; that’s where you have to go. And you have to sit down in the puddle with Jenni because Jenni is sitting in the puddle.’ I did it 1 day. I sat in the puddle with her for one day. It was on one July day, 9 years ago. It was a gorgeous day and everybody was at the lake and they were out in the boat. All the kids were out there and she was up in the house watching TV in the dark, in the cold air conditioning, and I came up to the house and I sat with her. To this day, she talks about it. And I did it 1 time. That’s how difficult it is to change how one thinks about these kinds of things. Like Mike says: it’s programming.

[Just] Mike: Was Jenni independent when she being treated? How was she being treated for her cancer?

Souche: They threw the book at her. She had aggressive chemotherapy. She had aggressive radiation, and she had multiple surgeries. She had a double mastectomy and then she had reconstruction surgery, which is a complete gong show. She worked through it all. Jenni is tough. She worked and made dinners. The funny thing is, Mike, you know, people come out of the woodwork with food, from the sublime to the ridiculous. We had a neighbor come over and I swear she cleaned out her whole freezer. It was just a frozen bag of something and I’m like, ‘No!’ But, the support was so needed! She stayed strong through the whole thing. Probably stronger than me.

[Just] Mike: Were you able to continue your full workload of working and social activities and taking care of the kids?

Souche: Yea, I worked full time. The kids were teenagers, so the household remained moving along. I wouldn’t say moving forward, because I sucked at caregiving. I didn’t have any resources to help me, and I didn’t really ask, either.

[Just] Mike: I don’t know if you were isolated or lonely when all the emphasis was put on Jenni and everyone comes in and only wants to see how the person with cancer is. Was it exhausting, lonely for you?

Souche: It wasn’t anything physically exhausting. The hardest part was not the isolation but was how to talk to people about what you’re going through. How about this, Mike, you can probably relate to this. I say to someone: Oh my wife has Stage 3 breast cancer. They respond: ‘oh, my sister has the exact same thing.’ It turns out they had a lumpectomy, no radiation, no chemo, no surgery. It’s like, people mean well, but it’s like, don’t tell me that your uncle has thyroid cancer … it’s not analogous.

Souche: It was the most difficult thing was not being able to relate to anybody, and there certainly wasn’t anything like Jack’s, like what you’re doing. That would have been really cool, and I think that’s what I sought with therapy - to try to find somebody who I could talk to and tell them what I was going through. You want to talk to anybody about your situation, because not many people I know were going through it.

Souche: [Dr.] Mike, what do you see in your patient population. My biggest thing would be in finding you. Finding a good therapist, in my opinion, is really difficult. Finding a good male therapist is impossible . How do you market yourself? Is your practice full?

[Dr.] Mike: There is something to being a male therapist and knowing other therapists and they think I’m a decent enough therapist. I get referrals that way, just asking around, or their wife or girlfriend goes to a therapist and they’re wanting to see one too, so they ask their therapist. A lot of times, because it’s men, a lot of them find me online, because they don’t want to ask anyone. They don’t want anyone to know that they are seeing a therapist. They look online, but they don’t want to ask anyone.

Souche: Is it a common theme that you see from guys who come in and say my wife has cancer and I’m not handling it well. What do you advise them?

[Dr.] Mike: It’s not that common in my practice. I think when I see people, it’s sometimes after the fact, after there is recovery; they’ve gone through it and they’re having a hard time putting things back together. In the midst of it, they don’t always reach out. Which speaks a lot to you guys doing that, reaching out and realizing that this is something I need to handle differently. A lot of guys don’t do that when they’re in the middle of it.

Souche: That’s really interesting because I didn’t really delve into my flaws as a human being until after it was all done. And then you’re trying to put the pieces of your life back together, your family back together, and you’re like, why is this not functioning well. You’re finally forced to look inward and 'fix' yourself.

[Just] Mike: Are you a different person? Did you come out of this differently then you went into it?

Souche: Way different. Yea, I’m actually a sweet charming guy now.

[Dr.] Mike: And modest, too.

Souche: I’m way different. My kids describe me as dad 2.0.

[Just] Mike: Really?

Souche: 1.0 was all testosterone; screw cancer, not a big deal. Let’s move on. I didn’t accept it, basically. So, yea, it’s taken a lot of therapy work and a lot of introspection for me.

Souche: I’m way more patient, and I’m a couple notches more nurturing, which is well from where I was. It’s a long way from where I was before cancer. I think you can go the same way, remain the way you were, and it doesn’t end well, or you have to change,

[Dr. Mike]: I imagine: what throws you into the crisis of needing the change is really the utter helplessness of everything. This is something you don’t have a lot of influence over - the cancer. You have to go through watching someone you love go through the treatment and you just have to be a bystander and you just have to watch them struggle to get through it, hopefully they get through it. And that’s hard to even acknowledge it when you’re in the middle of it, because you want to just say, ‘it’s going to be fine. It’s going to be OK.’ But you don’t even know if it really will be. I imagine that’s what stirs it up, but I don’t know if that’s accurate or not. You guys can speak to that.

[Just] Mike: There is nothing you can do except do what the doctors tell you. You have to just try to keep going as normal as possible.

Souche: My overwhelming sentiment now is that I would love to do it over again. I would sit in that puddle. Now I get it. It took me literally 9 years to get it and I think I could be a resource for somebody in this situation that you have, Mike.

[Just] Mike: That is true. You would be a great resource for caregivers who are going through it. Jack’s actually has this thing called 'Jack to Jack,' which is a way for caregivers to be that resource for other caregivers. When I was in the middle of the worst of Tracy’s situation, I got a lot of help from Kyle at Jack’s, who talked me through some very tough times when Tracy was at her worst.

Souche: You can tell people who have been through it; people who have been through something similar. It doesn’t have to be cancer - trauma or tragedy of some sort - people that get it. You can just tell.

[Just] Mike: I’ve heard some of this compared to PTSD. I know that with our level of trauma early on I really needed someone to talk to, and like you, I didn’t really know anyone who had gone through anything similar to what I was going through. I should have reached out earlier and just talked to someone; gotten some advice from people who had been through what I was going through. I can think of things now that I would have done differently. When Tracy had her stem cell transplant in Rochester for 6 weeks, I went down with her the entire time. Our kids were up here and family members came and stayed with them. They suffered because the two of us were gone the whole time.

Souche: But what would you have done?

[Just] Mike: I would have switched off with other people, other family members, so I could come home for a while and be with the kids, so we weren’t gone as much. My sister, or Tracy’s mom, or my sister-in-law, could have come down for a week or so and stayed with Tracy at the Transplant house. It was foolish on my part to try to push through and be her full-time caregiver in Rochester and being away from the kids for 6 weeks. It was foolish to try to work while I was doing that.

[There are moments when you’re brought back - way back! - to a time when things were so much simpler - before the 'trappings' of life weighed you down (but, in a good way, right?): when the biggest concern was where you would go Friday night after classes; when going to dinner meant hopping around tables in the refectory at St. John’s; when the closest bar was just a 3-mile hitch away (and you didn't mind hitching home). When life was light, and I was so anxious to get away from it. I was ready to get a life more complicated. Those moments happen seldom now, but we all need them once in a while.]

Or something like that.

Dr. Michael G. Gottfried, Ph.D.

Dr. Michael G. Gottfried, Ph.D. I am a licensed psychologist in private practice in St. Louis, MO. Choosing a therapist can seem like a difficult task. I believe that therapy works best when you feel you and your therapist are a good enough fit to get the help you are looking for. With that in mind, this website is designed to give you information about me and my practice to help you determine that fit. You can, of course, call me at any point to have a phone discussion to see if we would work well together (See Contact Page).

If you've landed here because you are struggling with managing your mood or your stress, if your relationships are not functioning as you'd like, or if you'd like help to figure out how to handle something difficult, therapy may be of some help. To get more information about the services I offer or what kinds of issues I tend to see in my practice, click here.

I enjoy working with adults, adolescents and couples on a wide range of issues. My work with clients centers on improving their view of themselves and improving their relationships with others in order to resolve issues of depression, anxiety, stress, and low self-esteem. Particular areas of specialization include working with men, couples and young adults. For more on my background, please click here.I am a licensed psychologist in private practice in St. Louis, MO. Choosing a therapist can seem like a difficult task. I believe that therapy works best when you feel you and your therapist are a good enough fit to get the help you are looking for. With that in mind, this website is designed to give you information about me and my practice to help you determine that fit. You can, of course, call me at any point to have a phone discussion to see if we would work well together (See Contact Page).

Next: What else would we change about our caregiving?... Getting over it....the guilt, I mean, of maybe not doing everything you think you could have or you should have. Or at least talking about it... Or maybe just chatting and never getting around to any of those topics.

This Conversation with a Caregiver was brought to you by:

Visit AARP.org/caregiving for family caregiver information and resources.

Most people think of family caregivers as women taking care of their aging parents or children. What many don’t know is that 16 million family caregivers in this country are men. AARP is on a mission to break the stereotypes and ensure that all family caregivers, including men, get meaningful support. Men, often due to societal perceptions, avoid talking about their caregiving situation and don’t feel comfortable talking about the emotional and economic challenges of caregiving. However, caregiving is tougher than tough and seeking help is not a sign of weakness but a sign of strength.

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