Suspect Wife is Seriously Depressed - 1270841

Pat,

I think the worst part of this whole thing as a spouse, loved one, caregiver is to put yourself into the shoes of the one with this horrible disease so you know how to help with what I've come to believe is the deepest of depression. I've felt like my husband and I were miles apart in our coping, he learning how to live with dying and me learning to live with living with losing my best friend, it's so oxymoronic (if that's a word).

I've read post after post from those who live with the knowledge that they will dye soon and all have a sometimes hidden fear, using words like horrified and terrified from some of what I would call the most courageous of them all.

Who wouldn't need help in that situation. For myself I started taking antidepressants a couple of years ago and it changed my life...I don't cry everyday and I like it. It might be something that can help your wife. She's in real pain and real danger.

I'm more than elated that my husband is in the 99th percentile by living with a stage IV nsclc diagnosis. But as humans we evolved (or were created) to die when we got to the point our spouses are at. I'm not sure humans have innate wisdom of how to live years with this kind of diagnosis.

There aren't good answers to your question here and I'm very sorry. Perhaps a script for antidepressants or anti-anxiety or both is something that can help. The one time since I've been on Grace that a thread on the subject of coping took hold is pasted below it may help you understand better and your wife may appreciate some of what's said in it. Unfortunately most of our friends in the thread are no longer with us, so it goes.
http://cancergrace.org/topic/holding-your-nerve

I don't think there's good enough answers for our loves but here is a link to blog posts on coping with cancer, http://cancergrace.org/coping-with-cancer/

All the best,
Janine

Pat,

I don't know how much I have to add to what Janine has already said, but please don't feel as though your topic is unwelcome or inappropriate. Throughout the almost three and a half years my wife battled lung cancer, I received a great deal of emotional support here in addition to expert medical information.

Everyone who has been a cancer patient or caregiver has heard the kind of comments you describe, and it is not at all unusual to be upset by them. I agree that people mean well, but they don't know what to say or do to help. They either want to reassure you that you or your loved one will be fine or that they have you in their prayers (which, although I appreciated it, always made me sad to think that my wife needed their prayers).

I think it's perfectly appropriate to discuss your wife's depression with her oncologist; they deal with these types of issues on a regular basis. In addition to possibly prescribing medications, he or she may be able to suggest resources, either those within your cancer center or other organizations, which may be able to provide some assistance. If your wife is the kind of person who might benefit from a support group, there may be one in your area.

Everyone deals with a cancer diagnosis in their own way, and often spouses differ in their approaches. For example, my wife tried as best she could to push thoughts of her cancer to the side except at appointment time, while I immersed myself in my research in an effort to become familiar with every available option.

In that regard, you may benefit from a caregiver support group, because it is very important that you take care of yourself so that you can provide good support for your wife. Caregiving is a difficult and tiring endeavor, and I can assure you that some of what causes your wife such difficulty is her concern for you.

Again, do not hesitate to discuss any further concerns here. You and your wife will be in our thoughts.

JimC
Forum moderator

Pat

Please don't think this is the wrong forum to discuss depression as it relates to cancer. Most of us who are survivors, victims or caregivers suffer the debilitating effects of depression at some point during the battle. I personally think it would be abnormal to not deal with depression after learning the mortality rates of stage 4 lung cancer. We are talking about end of life issues that in most cases come about totally unexpected. Antidepressants can certainly help but are not a panacea. In my wife's case talking with clergy seemed to be the most uplifting. I even had issues leaving things in God's hands when he/she had already botched things so badly. What it comes down to is that lung cancer sucks and there is no way getting around it. People do say all the wrong stuff at all the wrong times but they are to be forgiven because there is nothing short of experience to prepare them for this - and there is rarely a second act.

I got a lot of benefit ads a caregiver by joining a caregivers group at our local Cancer Support Center. My wife was to sick and frankly didn't want to anything to do with the victim sessions.

I really hope your wife comes to terms with her depression and sadness. Hopefully your oncologist has some meaningful input. There are many people out here who know how both of you feel and are here to support you both. Good luck. Bob4Beth

Pat,

It's hard to figure out how to give emotional support to a loved one who is dying. I am struggling with that now and worry as much about how to help my younger sister emotionally as I worry about how to help her manage her pain, etc. All this while we our so, so sad ourselves. We've been encouraging my sister to keep fighting, but I did get an email from a long time friend and doctor from Canada who has seen many patients die of cancer. He told me that the saddest thing he sees is patients who die fighting too long so that they are denied the chance to say goodbye to loved ones and to find peace with their own death. We had a neighbor who never said goodbye to his kids before he died of cancer. So consider getting your wife help, but also keep in thought the possibility that she might know when it is time for her to give up. Then, that acceptance might also give her time to say goodbye and go through the final emotional processes that can be healthy. My father died a couple years ago from Lou Gehrig's disease. It was horrible. However, I was proud of us for following his lead. He fought as long as he could. But he also wrote goodbye letters to his grandkids, kids and wife. Then, a week before he died, he dictated a memorial letter for me to read at his funeral. He couldn't use his hands so I took a dictation. He told me that he knew he didn't have much time and that it was time to quit fighting because he wasn't enjoying life anymore and he was suffering too much. I read it back to him to make sure I had it right. We both cried. I did read it at his memorial. My dad gave us specific instructions about where he wanted his ashes, etc. All of this was so sad, but also powerful and I was so proud of him for being so honest and brave even when he was also scared and sad. Maybe tell your wife you are in the fight with her as long as she chooses and let her know you still have hope, but you are also there to support her when she says "enough."

Pat

This is a good place to vent. I believe I did so myself at times. I wish I could offer more assistance and as hammer said I hope she ultimately finds some peace. It's really tough. Bob

Hi Pat,

It is so hard. It''s good you reach out so that you can get some support. Maybe someone will have an idea that helps. Everyone is so different that this might not work, but two strategies we have been using to help my sister emotionally are first, to "police" in a way so that she doesn't have to have lots of phone calls or visitors who are well-meaning but exhausting and say all the wrong things. She doesn't seem to want to waste any of her valuable time in that way which has been sometimes hard for well-meaning family and neighbors to understand. I have had to gently tell so many people that they can't see her. I don't really see it as her withdrawing, but more as a way for her to spend the time doing things she truly enjoys with only the people that she finds comforting--basically just me, her husband and her nephews. We encourage people to send cards or emails instead.

Then a second strategy that seems to be working is for us to plan fun things for the weeks in between chemo where she is feeling better. Her intense pain and nausea cycle so that she has about 1 good week every cycle. We took a cruise, rented a beach condo 2 hrs away and do things like that. She seems to find nature calming and enjoyable even if she can only manage a small walk on the beach or stroll in the woods. We have learned the hard way to make sure we book things that are easy to cancel and we use Southwest airlines which has reasonable rates and can be cancelled easily with no fee. The sadness in all of us never goes away, but we get some temporary moments of beauty and joy.

Take care,

Hammer

I'm so glad we're having this conversation. It's the toughest and I know one of the most important. I hope it continues to evolve.

Hugs to all,
Janine

Hi Pat,

I'm glad that you had that conversation with J. and that you feel that the way you interact with her is evolving. Many cancer patients state that all they need is someone to be there and listen, not necessarily to suggest what they should do. Although I think it is great that you have worked hard to become well-informed about her cancer, as you have realized there is a limit to what some patients want to hear. Sometimes it's really necessary to keep a lid on what you know (or suspect), and if you can find away to provide the information to her doctor without upsetting her, that may help.

Perhaps this bit of personal experience can provide an example. At one point in her cancer battle, I suspected that my wife's brain mets, asymptomatic to that point, were causing her some balance issues, and that perhaps she might need a prescription for Decadron, the steroid she had previously taken to reduce the swelling from those mets.She didn't feel that it was happening, but as we were leaving on vacation I felt more comfortable having the steroids with us, so I contacted her oncologist directly and explained the situation. He called in a prescription, which I filled and kept in my bag during our trip, and we didn't use them until it was clear that they were necessary.

Keeping you in our thoughts,

JimC
Forum moderator

This is a wonderful thread, and I'm so glad it's here. Pat, Hammer, you are obviously very thoughtful and caring people as, of course, are the moderators and other responders.
Things that have felt good to me (6-1/2 years post LC diagnosis): My husband is willing to go to all oncologist meetings, ask questions, etc., when I get focused on one thing and don't pay attention to some of the other points, he is my memory. Another helpful thing, two friends who brought dinner over once a week for the two months I needed it. Their good food and cheerful conversation were a breath of fresh air. An old friend who says "let's have lunch" or "do you want to go to a movie?" My medical center which has an email system where I can ask my drs a question and they actually respond (or their NPs do, which is fine).
What doesn't help: an overconcerned friend who calls daily with "How do you feel today?" (I'm going to get a "same as yesterday" recording.) People who treat me as if I'm dying in the next week, when it is likely to be years off.
Friends say it helps if I have something specific to ask them to do: "Next time you're at Trader Joe's, could you bring me ..." "Would you ask my husband out to lunch (without me)." Because after all, we still have to take care of each other; it can't be all him taking care of me.
Which brings up a point: you caregivers might ask your loved on to do something for you, even just, "would you listen while I complain about the waitress at lunch today?" "Could you suggest what I can tell x about y?"
"How can I help you and what do you want me to stop doing?"
Don't forget that you can sound and be depressed, too, it's not always us. We don't want to die, but we need to get used to the idea. And for heaven's sake, be sure you--and they--have all the legal documents in place, durable powers of attorney, advanced directives, etc. (You're not immune to a car wreck, remember.)
I love what you've written, and have learned so much from each of you.

Thank you so much everyone for this thoughtful discussion. I was also that caregiver/bf/worrier, the one memory that comes to mind from that time during this discussion is one night when just the two of us went out to a winebar/dinner, and she looked at me and just said - "these are the times I love. When everything just feels so normal".

My goal was always to just help her feel normal. I would come home and cry, I felt like my world was collapsing, and I was razor focused on her, but that comment taught me a lot. There is no manual. It sucks. But there is no wrong path - try to communicate when and how you can. And sometimes just hold her hand.

And posting here - know you are very far from alone. That is a lot of what this forum is all about - and all of these issues are a part of having the disease - it is not all clinical.

D

When you're traveling apart, you might want to look into Skyping each other. I've done that with success (if scheduled ahead of time--time zones can wreak havoc). The ruggedness of your travel of course depends on both of you, but you can travel together, and arrange for the rugged activities for the one who can do them, and share stories at the end of the day or weekend or whatever. When I became crutch-bound (not due to CA) my husband and I discovered interesting cruises, where I could enjoy on-board activities such as lectures and learning Spanish and meeting people and he could spend time exploring interesting cities. The sharing at the end of the day was gratifying, and the travel sort of "normalized" life--was something to do besides dr appointments and talking about my health. We both enjoyed it tremendously.

Hi Pat,

I'm sorry you're both going through this, and that the way each of you deals with it is so different. Many people deal with their cancer diagnosis much as your wife does, not wanting to talk about it or share their feelings with anyone, even those with whom they are closest. And like many caregivers, you have a need to express your feelings.

I don't think there's an easy solution to the problem. For her, all you can do is be available so that when she is in the mood to talk she knows that you will listen. And she may not want to hear how you are feeling as one of the greatest concerns for cancer patients is the well-being of their loved ones, especially spouses and partners.

I hope that you can find someone with whom to share your feelings, whether it is a close friend, clergy or counselor. And as we've said before, please never hesitate to post your feelings and concerns here. There is a great deal of accumulated experience dealing with cancer present on these forums, as many of us have faced many of the same issues you and your wife face.

JimC
Forum moderator

Hi Pat,

I hope the thoracentesis goes better this time than in the past. Keep hopes up for that and let us know how it goes today. My sister had one bad one with a doctor who didn't routinely perform them. She has had very good luck with a pulmonologist who does them a lot. So this is just to give you some hope for today that it can go better than it has in the past.

You need to vent which is important, and it's not surprising that friends don't really understand. People who aren't dealing with the same tough situation have difficulty truly comprehending what you are going through every day.

You probably won't be able to block your emotions because this situation is just too difficult. It would be more weird not to feel overwhelmed. Cancer is overwhelming. I know you want to be strong for your wife, but it's okay to fully feel your grief and frustration sometimes just to be able to get up again the next day feeling better and able to deal with the next challenge. Crying helps most, but I know that's not always possible.

It's kind of like being in a nightmare and not being able to wake-up. At least that's how I feel sometimes.

One day at a time helps. You and your wife have different strategies of dealing with this situation as you are seeing in terms of needing to talk. But even though she may not need you to talk with her about her emotions,etc., you are clearly giving her support in many other ways like going to the doctor appts, researching and everything else that she can't do by herself. She knows you love her.

Patrick, there is a support site for LC patients, caregivers, family, etc. It's called Inspire. You can sign up under LC Survivor and meet many who are in your situation and patients that are going through it. It's very supportive and informative and you can always vent too!
Take care, Judy

Hi Pat,

I'm sorry that the referral from your doctor did not work out. Although I considered it during my wife's illness, I never did see a therapist so I don't have personal experience to share. I did have a conversation with the head of counseling at the University at which I worked, and though I did not use the names of therapists he provided, I did heed his advice that I talk to someone I trusted rather than hold it all in. A close friend and my sister were very helpful, even though they didn't necessarily do anything. But they listened, and that's what I needed. Perhaps someone you know can fill that role for you.

As this page from the American Psychological Association points out, it is essential that you have good rapport with your therapist. Perhaps your doctor can make another recommendation, or even your wife's oncologist or cancer center can do so. Or you might be able to get a name from family or friends.

The cited page also has a locator to help find a therapist.

I hope you can find someone to share your thoughts.

JimC
Forum moderator

Hi Pat,

That's too bad that the procedure was very painful again yesterday.

You asked about how to find a good therapist. One idea I had would be to call a Hospice social worker from your town for suggestions. She might have some names for you. If you could find someone who has experience counseling other cancer caregivers, they might understand your situation better. Even though my sister isn't on Hospice yet, I called them once to ask a question and they were helpful. The family outreach person or family resource center person at your local hospital might also have names.

I definitely agree with Jim that you should have good rapport with any therapist. No need to go to someone if you don't feel as comfortable with them! If you have been to Vietnam, etc. you have a lot of life experience already and may need someone a little older with a lot of life experience themselves so that you feel understood.

Do you live near a hospital? Our hospital offers support groups for caregivers where the patients don't attend. Caregivers can vent and compare ideas without worrying that they will upset their loved one. You have to take care of yourself to be able to take care of your wife. When my grandma had cancer my grandpa went to a caregiver support group and it was so helpful to him. Those people stayed close friends even after she died and the group transitioned to doing dinners and trips together. My mom went to one for ALS caregivers and still attends now to help others because of her experience even though my dad died.

Take care

Hi Patrick

You are doing all the right things. I had similar feelings when my wife got too sick to share the same bed with me and responded negatively to my touch because it was so uncomfortable. Do what you can for her to make her as comfortable as possible. She is very aware of all you are doing for her but she is very compromised right now and nowhere close to her old self, both physically and emotionally. It's tough on everyone and there is not much more I can say about it other than to make sure you get some relief, a day or 2 a week, if you are her primary care giver. Both of you might also find it helpful to request a visit from your clergy. They are normally very happy to visit and are very experienced in dealing with these delicate matters. I personally attended a caregivers group and that was very helpful for me.

I too had hoped for that closeness to the very end but came to realize that the worst was also part of the deal. The good news is that what you are doing will make you better, not worse and that's the tragic irony.

May the New Year be as good as possible for your family.

Bob

Hi Pat,

Yes, the distancing is very normal from what I have read about the last stages. It's nothing personal toward you, but a normal part of the dying process. Online, look up stages of dying and you will find discussion of withdrawal from loved ones as one frequent aspect of this.

She will still get comfort just knowing you are there even if she doesn't talk and communicate much. You have taken good care of her, and she knows you love her. Just keep her comfortable now the best you can. Hopefully, you have Hospice for support.

You and your wife will be in my thoughts.

--Hammer

Pat,

I would second what Hammer has said, that this is entirely normal and is due to physical factors and not any indication of an attitude toward you. As Hammer said, you have done all that you can do to help her but cancer often progresses beyond what physicians and caregivers can do, other than provide as much comfort as possible.

Dr. West has written an FAQ on the cancer patient's dying process here.

Having been through this process myself, I understand how heartbreaking this time can be, and my thoughts are with you for strength and peace.

JimC
Forum moderator