Hello Everyone,
Charlotte here. Would any of you be willing to take a stab at one or more of the questions below? These are the questions submitted by Forum members so far for Chapter 8 (for caregivers) in the Getting Through It book that OCF is publishing. I'm a co-editor and caregiver to my husband.

Questions
1.How do I deal with the guilt that it isn

I am willing to take a shot at some of these since I have been a caregiver to a very sick spouse for 15 months :
Quest. #2. Being able to work during treatment will depend a great deal on what the treatment is [and what kind of work one does] If it is radiation or a combo of radiation and chemo, some patients can continue working at a reduced pace, while others will not be able to work during and prehaps for months after treatment. Cancer treatment is very tiring and the body needs alot of rest to get through it.
Quest. #3 This is different for each patient
Quest #4. Hopefully you, as a caregiver, will have at least one of the following resourses abailable to you. A: Supportive family members who can help lessen your load. B: A best friend to whom you can vent or with whom you can cry.
C: A family Doc. who knows you well and will help you when you are stressed. D: I has been my personal experience that I didn't need attention-I just need SLEEP!
Quest #5. When you start to resent being the caregiver, it is time to remove yourself from the situation for awhile. If you have the resourses mentioned above, you should be getting some breaks.
Quest #6. If you love the person you are caring for, you will likely not only feel depressed, but also mad, frustrated and helpless that you can't fix this problem. If those feeling get overwhelming, you must find someone to talk to and you should seek help from a professional.
Quest #7. At the beginning of this overwhelming battle [that's what it is], you need to start gathering from the best sources available, OCF being one, all the knowledge you can so you can understand what is being said and ask intelligent questions. You need to listen very carefully to the Doctors, you need to take good notes, you need to get very organized about your life in general to free up time to deal with this. When treatment starts, you need to keep an accurate journal of everything that is going on [refer to section______]Depending on how many Docs are involved, you need to be able to call the appropriate one when you need him. Don't take "no" for an answer if you know your spouse needs something. And the most difficult of all [for me at least] is not letting your "patient" talk you out of doing what is in his\her best interest.
Quest #8. A. Make a list of your spouse's responsibilities. B. Circle each one that has to be done. C. Mark through the ones that can slide for a while. D. Review the circled ones to see if that responsibility can be assumed by someone other than you [yard work, vehicle maintainance, carpool, shopping, etc.] Whatever is left on your list that can't be delegated will be yours to deal with one way or another. Get or hire help when you can.
Quest #9. In my opinion, the "balance" in our relationship of 18 years went out the window the day my spouse was diagnosed with SCC. The first and foremost concern for me has been to do everything within my power to help get him through this. I do not expect him to do anything but apply all of his energy toward getting well. Perhaps because he had such a tough time with radiation and then a second surgery and now chemo, I am viewing this differently than other spouses would.
Quest #10. Whether or not you are in charge of everything depends on how sick your spouse is and what his\her capabilities and energy level are. In our case, I find several times during the day to talk to my spouse [when he is awake and not in pain] about the general happenings in our life. I keep him up to date on things I know he cares about and I am careful not to bring stressful subjects up.
Quest #12. This is not a good question- too vague-
Quest #13. Dealing with the fear of recurrence is difficult and different for everyone.
To me it is more deciding to ask yourself this question each day - "Is my cup 1\2 empty or is my cup 1\2 full today?"
Quest #14. The first thing you need to do is be on a 1st name basis with your pharmacist! [no kidding] You will likely have many different meds for many different things. Get a notebook and start entering from the 1st med- what it is and what it is for, how long it was taken and if it worked. Keep that notebook up to date and make notes as to any side effects while taking it-[stomach upset, diarrhea, # of times refilled, didn't work, etc. I have had to clear 2 shelves in John's bathroom for meds. Also, if you have different Docs prescribing meds-be sure each knows what the other is doing.

Wow these are intense questions. There are no real answers but only experiences. So here is my stab...

1. One moment at a time. The guilt creeps in usually not an all at one time rush so you deal with it moment by moment. I always tried to remind myself that it was me in a way. That the cancer was a family disease and it affected us all. Maybe my life wasn't threatened in the physical sense but the life we had was and if I tried to tackle it all at once it would be overwhelming. So one step at a time. When the guilt feeling begins to rise you just have to remind yourself that life isn't fair and try your best.

2. Some can and some can't. It depends on the treatments and how each person reacts to them. My husband could not work from the first tx but after txs has been able to.

3. No one can answer that question. There is no answer. Some right after txs some may take months or years.

4. You need to take the occasional break. Call on your support network and take time off. It is difficult to do but you must force yourself. The disease will beat you both down and someone has to stay strong so take time every now and then. Do something that is relaxing even if you have to force yourself to relax. It will be worth it as time goes by the harder that things become.

5. No one can tell you when to take a break. You will know when you have gone as far as you can but there are warning signs. When your temper becomes so short you don't like yourself, when you are unable to sit without falling asleep, when you cannot see things clearly because you are exhausted. These are just a few but you will know as you go along when you need a break.

6. It is ABSOLUTELY NORMAL. There is no way to avoid being depressed when going through this.

7. The way you would want for yourself. Follow your gut. If it doesn't seem right then demand. Don't be afraid. Listen and learn and much as you can so it will be easier to identify what sounds right and wrong. Try to be proactive not reactive. Easier said than done but the more you know the better off you will be so read and learn, listen and takes notes on everything. Even if it is something that seems minor at the time, it might just be something big later on.

8. NO. You must make choices. If your lives took 2 people to live before it is not possible for you to take on all that your spouse was doing before. You and your spouse will have to decide what you can and cannot continue to handle. Yes you might take on a few things that he/she was doing before because you will have to like finances, children, etc. But there will be other things that will just have to be let go. It is not a fair choice but it will have to be made. No one is a super hero and no one should be expected to be. It is best to sit down before txs begin when your spouse is still able to do things and make these choices together. Then as time goes by you will discover that those things that had to be let go aren't so important anymore. It may sound hard at first but over time it will just become the way of your new "normal" life and for some it is almost like a way to clean house of those things that maybe you needed to pass onto others anyway. Look at the responsibilities and decide which are truly yours and your spouses and which are ones you took on just because you had the time or the desire. Those that can be passed on or let go of should be so that those that are necessary can be done.

9. This is the toughest question of all. During txs there is no balance. It is all mostly one sided. Your spouse (the patient) will have little or nothing to give. This is just how it is going to be and it is a sacrifice you made a promise to make when you married. It is the same psomise your spouse made to you and now it is a promise that needs to be kept. As the caregiver, you will have to find your affection and down time away from your marriage. At least for a little while. This cannot be avoided. Some marriages will be strong and make it through coming out better on the the other side than ever before. Others will not survive at all. Cancer is a taker and when there is room it will take everything that is important. If your marriage is strong then you are already ahead of the game. If your marriage was struggling when the diagnosis arrives then the challenges can be greater. Some will survive and others may not. A friend (survivor) told me when my husband was diagnosed that this disease will either bring you closer than you have ever been or it will completely tear you apart. The only way to answer this question is within yourself. Because only you and your spouse know how strong your marriage is. Can a marriage survive this challenge? Absolutely! But not all of them do.

10. Yes for a little while you will be in charge of everything and keeping your spouse involved will depend on your spouse. Talk to each other and ask questions. If your spouse doesn't want to know then don't tell them. If they do then share things with them. There are some of these txs that can make the patient forget things so sometimes they won't be remembered anyway. To keep your spouse involved and not overwhelmed is simply a matter of letting your spouse tell you when they want the information and when they don't care and respecting that decision from them.

11. Never. The life before cancer is gone and will never return to "normal"! BUT... there is a new normal. A new way of living that can be just as good if not better than before cancer. That is all dependant upon attitudes and how you and your spouse decide to start your lives anew after txs. It will depend on how your spouse recovers, complication, etc. but you can find a new normal that works for you and your family if you work on it together.

12. To make things more comfortable listen to your spouse. Take the time to try to understand the pains they will experience. Listen to others and make suggestions. Sometimes you will just have to decide on your own and do it. Information is your best friend in the comfort arena. The more you know the more comfort and ease you can provide.

13. Fear of recurrence is going to be a life long problem. Just approach each day with the view that you have today. None of us are promised a tomorrow and having cancer or being in remission doesn't really change that. If you awake in the morning and make it through the day and are able to say that you made the most of that day then that is really all you can do. You made it through the first round of txs. Then decide to deal with a recurrence IF it happens and not before. Take each step of clean scans and good checkups and don't look for the worst. Smile and be happy for the next day you get. If a recurrence happens you will deal with it the way you did when your spouse was first diagnosed. You weren't sitting around your whole life wondering if you would get cancer, don't sit around waiting for the recurrence. Face that beast IF it faces you and if not then you have to just let it go. We have no control and thus our worry is just wasted precious time.

14. Meds... know everything you can. Get s PDR and keep it handy. Learn about the nausea meds and the various fluids and other things they will give your spouse. When the docs recommend a new medication ask them 20 questions. Also a much ignored reference is your pharmacist. They know more about the drugs sometimes than the docs do it seems. Always check for interactions. Keep a written list of all medications including dosing times and amounts. Last given, etc. You will always need this information if you must go to the hospital. Meds can be the most helpful part of txs but they can also cause the most harm if not managed very carefully and as a caregiver this is something that you can and must do.

Well that is the way I would answer these questions if I were asked them. I hope this helps a little toward what you are looking for.

Cindy

Is it normal to feel depressed? Yes. Being faced with a life altering, and potentially fatal disease definitely has the ability to body check one into a state of depression. You really need to maintain your composure and be alert as possible as a caregiver, but when you have a moment to yourself, a chance to try to catch up on sleep, it's not out of the ordinary if you find yourself trapped in a funk. In fact, it got to where I would feel guilty if I laughed at something or if I had an opportunity to go out and actually have some fun.
I would think that I should be back at the hospital, or doing research, or contacting doctors and looking through charts to make sure the right drugs were taken when they were suppose to be taken. Getting depressed watching a loved one go through treatment is all too common. There was an elderly gentleman that I befriended on the oncology floor. His wife was going through tx the same time my mom was. I could see in his eyes how upset he was. We would talk for hours. His children lived out of state, so he was essentially on his own while he was caring for his wife and trying to keep his own sanity. There are some radical changes, both physical and emotional, that you may encounter. There was no warning from the medical staff as to how big some of the changes could be, thus not perparing me for what I was about to experience. You quickly adjust though, but I think seeing the changes really hit home as to how serious an illness we were dealing with. Genereally the depression would hit the moment I was able to leave the hospital, out of the sight of my loved ones. I didn't want them to know it was difficult on me. It wasn't uncommon to drive home wiping tears out of my eyes or running scenarios over and over in my head as I was trying to fall asleep. I didn't take advantage of any counseling or any caregiver outreach programs, but I think I should have. Outside of OCF, I pretty much turned inward and kept the stress and depression bundled up. Not a good idea. I developed heart palpatations and terrible stress related lower back pain that left me virtually unable to walk upright for a spell.
I think a caregiver wants to and needs to maintain strong, but depression is a given. I wish I knew how to avoid it, but I have recently found that exercise and breathing deeply can be beneficial. Others I know have found religion to be helpful. Throughout the entire treatment period for my parents, and even during my mom's recovery, I have dealt with varying degress of depression. Fortunately, as we have been on the mend, the depression has dissipated. I have come to terms with everything that has happened. I have stopped trying to figure out why this happened and who, if anybody, might be responsible for not catching it earlier. I live life differently than I did precancer. I try to enjoy it more and appreciate things that I didn't necessarily notice before. As for meds and what you need to know, I suggest reading all you can read about the drugs your loved one will be given. From that standpoint, the hospital was very helpful. They would make printouts for me that explained what the drug did, what potential side effects you might expect and then i would get online and out of my own paranoia read more about the drugs and make sure whether or not they were safe in my mind, and safe to be used with other meds that were part of the protocal. I went so far as emailing doctors at other hospitals to ask their opinions of the protocol. All of them were kind to respond, probably thinking I was some type of nut, but I wanted to have my opinion based on my novice understanding and I wanted the opinions of multiple medical specialists from top notch cancer centers. I wanted to know how doses of the meds and radiation were determined. Doing so, in my mind, prepared me better to keep an eye on things. I always took notes of what drug was given, at what time and with what frequency. Kept a book of blood counts, daily weight, oxygen saturation, pulse, what drugs caused adverse side effects, what drugs worked well. This info always was good to have on hand when going to the ER. I also carried this info and copies of test results around in the event that we wound up in the ER of another hospital. It's important to have a good handle on the meds because there can be so many involved and a caregiver really has to have an idea of what the meds do and how the pt. reacts to them.

Thank you so much to Didier, Cindy and JAM,
for your thoroughness and for your eloquence. These are indeed what we are looking for in the book. The responses used will identify you by first name and state. Please let me know if you do not want your words published.

Re questions 8 and 10--taking on all my spouses responsibilities and being in charge of everything: Tom and I decided early on that our friends and family needed a way to help us. So we made a list of things that needed doing and updated it regularly. When someone asked, "What can I do?" we would show them or refer to the list. It was a great help to us and kept them involved, especially since during the most rigorous part of Tom's treatment, our older son was married. We held the rehearsal dinner for 75 in our backyard which wouldn't have been possible without the extra helping hands. And now we are grandparents!

As Cindy said, there are no realy answers to these questions, only experiences. Share yours with us.
Thanks,
Charlotte

okay I'll have to think about the other but on the first one:
1) Guilt is what I feel when I've run out of other emotions like fear, hope, frustration, confusion, and anger. To me it's a sign that I need to step back and regain perspective. It's so hard to watch someone you love suffer and I feel guilty that maybe there was some early sign that I missed. Those are the moments that are dangerous. Cancer doesn't always come with announcements and warnings. The symptoms are so vague - sore throats, tired, swollen glands - how many people get those symptoms and have a cold?
There's no good role here, it's hard to be a patient and go through these difficult treatments/side effects, but it's equally hard to sit for hours in the waiting rooms during surgeries, radiation, chemo, and spend all those lonely moments wondering if I will be the one who will be left behind to live without him. It's exhausting to be a caregiver and try to deal with the loss of our former lives, not to mention the role reversals that many of us find ourselves thrown into so we feel guilty when we're not perfect. That's when I tell myself to get over it and deal with the life that we have.

I'll get back to you on the other questions. Regards JoAnne

Joanne,
You are so right on. You have captured much of what I also felt at the time. I believe that readers will appreciate your response and learn from your experience. Please share your thoughts on any/all of the other questions.
Thanks so much,
Charlotte

Thank you, Joanne. That was exactly what I needed to read. For the last eight months I've been a caregiver/advocate for my dearest friend and significant other of 21 years and he's not in a great place at this point.

It's been a continual challenge and nightmare for both of us--his throat cancer diagnosis, neck dissection, laryngectomy, chemo and radiation treatment and the aftereffects (repeated and mostly always unsuccessful throat dilations in order to be regain the ability to swallow anything at all). I struggle daily with the need to keep positive for him and try my best but still feel like I'm not going to do enough no matter what.

Have been trying to power through the fear and guilt but it caught up with me this week and I'm trying antidepressants and reaching out more to friends and family. Don't know what's ahead and just taking it a day at a time, and it is so hard to realize how much has been lost. Of course I'm grateful he's surviving but wish I wave a magic wand or do something to make things better. This message board and particularly this forum topic is a lifeline for me.

Nancy

I'm not a spouse but a sibling. My brother has been gone 11 months now and I still feel guilty. We did have much time to see each other before the illness, he had his family and I mine. Funny how after his diagnosis I found plenty of time, seeing him daily in fact. He did stop by in November, several months before he told my mother about the sore on his tongue and going to the doctor. As he was preparing to leave he stood there and looked at me funny and I thought he was going to say something. I will always wonder if he wasn't about to tell me about the sore or ask me to look at it. If so we could have caught it 6 months earlier. I know it's silly, I can't "save" anyone, but I will never feel I did enough. Had I seen him more often maybe I would have noticed something different. I had always helped pull him out of situations before, but for all my research, getting him to better doctors, praying, helping his family, I couldn't save him. I failed him. I will always feel a portion of guilt.

Tonya, you did not fail your brother. Despite all our love, concern, advocacy, and vigilance cancer is a silent killer that can progress even with the best treatment in the world. The fact that you are continuing to support other patients and their families through this forum is a testimony to how much you loved him, and how involved you were in each other's lives. What you are feeling is not silly, it's normal grieving - particularly as you are coming up on his first anniversary - but it's also not real, and not deserved. How wonderful that you were there for him during his illness, and that you continue to be there for his family. You found the time when it mattered and that's what important.

Some thoughts on other questions:
#2: Probably not. A lot depends on what kind of work they do. If it's something that can be handled at home from a computer then there are times that's possible. When our doctor told us that Jack would be out of work for at least 6 months and maybe longer we didn't believe him. I watched Jack drag himself out of bed to go into his office before and after the surgeries and during the first few weeks of his radiation/chemo. Then came a day where the side effects kicked in big time and he couldn't focus on work anymore. It's a moment of realization that your "job" is now surviving.

#3: It's always important to stay positive and think like survivors. There's a strong mind-body connection that we really don't understand. The reality is that not everyone will get better but we have no way of knowing that upfront so I found that asking "why not him" helps me stay in survivor mode as opposed to the energy draining "why him", which doesn't.
There's an unrealistic expectation by people who have never experienced this illness that patients and caregivers will be bravely facing the challenges together as a poster couple for hope and faith. They tell you not to let negative thoughts in your head like that's really going to stop them. Whether we say our fears out loud or just think them in our private moments all of us experience the fear that the ones we love will not get better. It's bigger than will they die, it's also will they continue to be unable to swallow, or eat in a restaurant, or speak clearly, or hear normally, or open their mouths all the way, or regain their energy to go back to work, or live without pain? Will they get more side effects or complications and need yet more treatments? Am I now the only income in our family? The one all of us really want to know is will the cancer come back and no one can answer for us.
We each need to find our own coping mechanisms to help us live with the uncertainty. Some days I'm very together and positive and I see that we have a new future together. Other days I'm a mess waiting to wake up from a nightmare and I want my old life back. I think it's okay to have bad moments and days, but we need to fight to maintain a balance in our perspective. If we can do that then maybe that's what "getting better" is about.

Regards JoAnne