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Motivation/Depression?


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Hi

I wonder if anyone out there has some advice for me? There are just the 2 of us and I am the sole carer for my husband, we are both in our early 50's. He has stage 4 lung cancer , 1 lung removed and now nodes in other lung and in liver. Done all the usual treatments and nothing working. He is now eating well but says is too tired for anything and is just staying in bed. I am doing all the usual stuff and looking after him. He has no cough or other physical problems, no pain. He does get short of breath on exertion but not so bad that he can't get up and down stairs.

Here's my problem! This has been going on for last 4 weeks or so. Maybe it's my fault for making it easy for him to stay in bed? How do I motivate him to get out of bed? He is capable of doing this, yes it's tiring but he is just giving up. I think we have made it too comfy for him by putting TV there and laptop with wireless access so he keeps himself amused. I can't take those things away but I do want to push him to get on with life while he can, we had some major discussions/arguments on this this morning and he feels I am not being sympathetic to his situation. I am but I know he can do more if he tries, how?? Well I decided to take myself to the shops today and was out for 2 hours, when I got back he had been up and made himself a sandwich, drink and eaten it downstairs, so he can do this when I am not there. He went back to bed with his drink as I arrived home, why??? He said he had to get up to get food as I was out( I had given him breakfast before I went, so no urgent need)Seems he can be up when I'm out!

In a strange way this makes me feel as though he is using me. I am beginning to feel very down as I can't seem to see any kind of a way out of this and I am frightened to think that this is it and nothing will improve. He just gets angry now when I try and bring it up so silence reigns at the moment.

I know fatigue is awful and I have helped him through this before with chemo, radiotherapy etc.. could this be depression? He has never had depression or anything before, he is a laid back guy who has been accepting of his disease all the way through, no highs or lows, just as he has gone through life!

Any advise would be helpful.

Thanks

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I haven't had stage 4 cancer so I don't know how it really feels. I am dealing with my Dad though who expects to be waited on hand and foot. Well, he is. The other day, I was in his computer room researching stuff for him and asked him to refill my Pepsi and sure enough he was capable. My StepMom and me have made it easy for him, but as caregivers and not the actual survivor ourselves we want to make life as easy as possible for him. Your hubby could be dealing with depression, who wouldn't be after being diagnosed with a possible terminal disease?

Check into anti-depressants. You've done a great job setting him up with his creature comforts. Don't feel bad about that. Good luck to you and your hubby. I know it get's frustrating to be a caregiver but we wouldn't prefer the alternative.

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The more he stays in bed, the more tired he will be. He needs activity to fight the fatigue-- the more he moves the more energy he will have. It could be depression and he should get medication for that. If I were you, I'd go out every day so he'd get up and do some things. :wink: See if you can get him to take a short walk with you or go out somewhere every day.

I hope he will continue to try various treatments until something helps.

Rochelle

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Lonely,

Is my husband moonlighting at your house??? :lol:

Seriously, your post hits home with me in some ways. My husband is stage IV, also a very laid back kind of guy, wants no waves, and has been through the mill with chemo. He lives fatigued. He does get out of bed though, but sits in his easy chair all day long. Right now, I understand, because he is having some serious issues that we hope are related to chemo. The worst part for him is his SOB. He has such fear when it comes to this that it has practically immobilized him. We were taking little walks a few months ago, but no more. I too have made it very easy for him in my quest to protect his fragile health. I think that comes as second nature to us as women and caregivers. I now stop myself from jumping up and getting something for him just so he moves around a little bit more. I feel guilty as hell, but I hold myself back. I'm not doing him any favors by doing everything for him.

We too have had the same discussion about how he wants to live. I asked him if he intended to spend the rest of his life in his easy chair. I don't think he liked that, or the fact that I'm riding him about using either a spirometer or breathing exercises to increase his lung capacity. I keep telling him that he better use it or lose it. The thing that peeves me is that if he did work his lungs out more it would help with the very thing that frightens him so much. He used that spirometer religiously for 9 months after diagnosis and I know it helped his lung capacity.

Just now he asked me to turn off the floor fan. I asked him why he didn't get up and do it. He said he was trying to avoid bending over (which causes him to lose his breath the past several days.) I said okay, but when we get this breathing thing resolved, we ARE going to take walks again!

I know he is not gold-bricking, but (aside from the current issues) I think he could and should be moving around more. I understand your situation and can only suggest that you require his presence at the table for meals, go to a store with you, etc.

It's quite a tightrope we walk as caregivers. We don't want them to think we don't completely understand their needs and fear, yet we also have to help them maintain some normalcy in their lives. Routines and schedules are a good thing for most people. It gives our world balance and order. Cancer throws this balance out the window. :?

I wish you luck. Depression also cannot be ruled out. Have the doctor talk to him about it. There was one point where I thought my husband might be depressed, but I think it was just some of the realization hitting him that this isn't going to get better or go away. I do tend to cut him some slack because he has been through 44 cycles of chemo and we are almost 28 months from diagnosis. At some point the tide will be turning -- I just hope the time is not right now.

Welthy

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I don't have any advice, but I sure understand what you're both feeling.

My husband has been having fainting spells, and I can't believe what it has done to my 14 year old son and I. When we hear any tiny "thump sound", we both jump up from whatever room we're in, and run to find out if we need to pick Harry up off the floor. It's so scary, and I feel sorry for my son. It's not something a 14 year old normally deals with. If nothing else, I think it's teaching him compassion, which is good, but he's a bundle of nerves too.

Harry also sits in his chair all day. (Sometimes I think I'll scream if I have to listen to one more football game rerun from 1976!), but he keeps saying that he can't wait to go back to work, so that's good!

He went thru a stage where he was also not "moving", and I was waiting on him hand and foot! It seems to have passed now though, and he tries to do TOO much, so that's almost as bad, considering he passes out and hits his head, etc. :shock:

Seems there's no happy "medium".

I'm thinking of you guys.... :(

Take care of yourselves,

Nova

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Welthy, maybe he is?? :o Thanks for your responses it helps to know others are experiencing similar problems and hear about ways you are dealing with it. I asked our family doctor to call and see him today to try and see if he could determine if it is depression or just lack of motivation. He came away saying, see how he goes, after telling him to try being a bit more active and to get up for increasingly longer periods. He said he thought there may be slight depression because of his slowness in answering him but he is always like that! Doc said get in touch next week if he is still the same. Not hugely useful but at least he heard "be more active" from someone else.

I am trying to get him to agree to coming downstairs for his meals without getting into another fight about it, not easy. Still in bed as I write this.

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Hi Lonely--

We definitely went through a period like this with my dad...it was pretty scary until we realized that one of the medications we were giving him had a major, major sedative effect (the medication was ativan). We took him off of it and added just a little bit of decadron (1-3 mg per day)--and it has just made a world of difference. I wouldn't say he is completely back to normal--but it is 180 degrees different from where we were two weeks ago. He is eating more normally, taking small walks each day, and last week, he started reading about a chapter a day from some books for work...before this he could barely get dressed in the morning (and after getting dressed, he would basically sleep for most of the day).

So, you might want to check the medications he is taking to make sure that none of them are contributing to his current level of fatigue. You may also want to talk to your doctor about low level dosages of steroids. Both have made a tremendous difference in my dad's energy and activity levels.

I know how difficult it is to see someone you love with this level of inactivity. It changes their entire personality and it is so scary.

I'm thinking strong thoughts for you.

Leslie

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Thanks for tips will check his meds but all he is on at moment is 4mgs dexamethasone, recently increased from 2mgs and his zomorph which he has been on for about 5 months now. He is taking Vit B supplements and a tonic before meals. Thinking about increasing steroid to 6 mgs to see if that will help!

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Maurice spent a lot of time in the bed earlier this year, about 3 months total. He had been a super active and strong individual all his life & this was totally out of character for him. I wondered at the time if he was sand bagging it or if it was depression but come to find out the chemo was kicking the sh... out of him & he had no strength. He now gets up on time, moves about, goes fishing etc and things have improved considerably. I guess his body's getting used to the chemo & coping with it better. Hang tough. Anti depressants are always possible and who knows, it may simply get better with time. Good Luck & God Bless

wendyr

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Hi, Lonely, and welcome to the LCSC! As I read through your posts and the very thoughtful responses, a few things came to mind. If any of my questions seem a bit too direct, please think of them as rhetorical, just something to be considered if relevant or dismissed if off the mark.

I get the impression that your husband is no longer getting treatment for the cancer, just palliative care via the steroids and the morphine capsules. If that's the case, was stopping treatment his own decision, or was it his doctor's decision in accordance with NHS policy? You said he's not in pain and is not having any problems except general fatigue and some shortness of breath on exertion. Was he in a lot of pain before starting the Zomorph? What sort of prognosis has he been given? (In this group we place very little weight on prognosis, but what he was told might have some significance.) Maybe I'm missing something, but it just seems to me that he's being treated (by you, by the system) as if he's a lot sicker than he actually is. Is he still getting scans which show continued progression of the cancer? As you probably know, spontaneous remissions, while rare and (in medical terms) unexplainable, are not unheard of.

To hitchhike on Leslie's Ativan comment, I found this on the cancerbackup.org.uk website:

As well as the usual side effects of strong painkillers, morphine can give a sense of well-being (euphoria) and some people feel detached from what is going on around them.
Ring any bells?

But regardless of how valid or invalid any of that turns out to be, there's one thing I'll say with certainty: now, and into the future, more of the focus needs to be on YOU. Not all of it, not necessarily most of it, but more of it. The shopping trip gave you a chance to "get out," a critical need for any caregiver. And as a side benefit, it was good for your husband as well. Do that sort of thing more often, and get involved in other activities that you used to enjoy but have put on hold for too long. If your husband wants to join you in some of these outings, great, but remember, it's not just about him. You should be equal partners, and he should realize and encourage that.

My best wishes and Aloha,

Ned

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Hi Ned

In response to your questions, he is still on Tarceva although latest scans show progression of disease, liver mets,lung and lymph. Currently evaluating other options left, never had any real pain, more discomfort, this is still the same.There is no NHS policy on stopping treatment, so not sure what you mean by this, we make the decisions. Cancer doc doesn't have a good explanation for current level of fatigue, SOB, the treatment was to increase steroids, done this, no change except to make him snappier! Almost 2 years since DX. I think that as Tarceva appears to have stopped working this may be causing fatigue (using logic that when it was working he had rash but no other side effects, now no rash just this fatigue and disease progression)he is not willing to listen to this theory and stop taking it for a week to see if any difference.

As for looking after myself, that's a bit of a joke! I haven't been me since diagnosis and everyone talks about caregivers etc... but what can you do? who else will look after him? no one ,so it's impossible to have a life other than the one I have, which is pretty lonely and miserable at the moment.

That is not being said in self pity or for sympathy it's just the truth.

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I can't begin to imagine what it would feel like to actually have the cancer. Someone told me that they wondered what it would be like to lay in bed at night, looking at the ceiling and wondering if tomorrow would come. Looking at the ones you love and being made aware that you might have to leave them would be heart-wrenching.

He can't possibly imagine what it "feels" like to be you in this situation, just as you cannot for him either. I can say that once my dad was put on antidepressants it got better. He found the spirit he needed to fight and he started being appreciative of what he sees around him.

Many of us kids also got on them. It has helped tremendously. We all are so flooded with emotions, constantly, that we find that getting a break from the flooding feeling has helped us get through each day.

Stay strong!

Jen

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"Lonely"]As for looking after myself, that's a bit of a joke! I haven't been me since diagnosis and everyone talks about caregivers etc... but what can you do? who else will look after him? no one ,so it's impossible to have a life other than the one I have, which is pretty lonely and miserable at the moment.

That is not being said in self pity or for sympathy it's just the truth.

Lonely,

I admit, I chuckled when Ned wrote about that too. My life IS looking after my husband. I don't know who "me" is anymore. I plod through my day hoping for the best. I don't go places very often without him. I just can't justify it in my head -- why should I be running around "living" while the love of my life struggles? And I'm not playing "Mary Martyr" either, just accepting what our lives have become. I don't resent it in the least. I know other women friends who have taken trips, etc. while their spouses were in late stages of their journey and could never understand their rationale. When this is all said and done, then I will have a life to live. I'm not going to like it and I'm sure I'll hate it, but "it is what it is."

I understand completely Lonely!

Welthy

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Thanks Welthy!!!! That's excatly what I meant, "Me has been suspended for the duration" and a different me will emerge to start another journey, sometime in the future. The old me has gone, which makes me sad as I liked her and her attitude to life, not sure with this current one.

I have started to think about the next journey now as I do do most things, outside of the house, on my own. I have had to realise that I can't not do things because he can't, I wouldn't take a trip or anything but just going for a walk on my own and other small day time trips. Today I went to sit by the sea, watching storm clouds and just thinking " What will it be like when I have no one to go home to and tell" I take my camera everywhere and bring lots of pics back for him to see, that way he gets to go too!! Maybe I'll still do the same. Sorry rambling now.

The good news is I managed to get him out of bed by not taking him his breakfast and making him get up and showered for it, small step for woman.

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"Lonely" ...As for looking after myself, that's a bit of a joke! I haven't been me since diagnosis and everyone talks about caregivers...
"Welthy" I admit, I chuckled when Ned wrote about that too.

One of my favorite lines from "Laugh-In" (1968-73) was "Thanks, I needed that." Then my wife, when we were still dating in the 1970s, wanted to make sure I knew how to spell "assume" -- she said it's spelled "A-S-S, U and ME." More often than not, since I learned that fact, it's been the "ME" part that applied.

Obviously, I should have waited for answers to some of the questions I asked instead of assuming I knew what the answers would be and launching into phase 2 of my post. It seems that some of us never learn.

Just so you know, though you may find it hard to believe, I do understand what you mean when you say "Me has been suspended for the duration." My wife says the same thing in somewhat different words: "Caregiving defines my life." It's been that way since 1995, when both of her parents suddenly needed 24-hour care. She closed her business and they moved in with us. Her father passed away in 1997, about the time my own father took a turn for the worse. I moved in with him until he required hospitalization, and he passed away in 1998. Her mother has been in and out of the hospital for the past 12 years and is still living with us.

Since 1995 my wife's main "outside" activity has also been framed around caregiving. She co-founded the Central Oahu Caregivers' Support Group, which has been meeting monthly at our local hospital since 1997. Although she's tied to the house most of the time, she spends hours on the phone explaining options to new caregivers referred to her by government agencies and charitable organizations, people thrust into the caregiver role with no warning, not knowing who to ask or even what to ask.

In May 2005 we attended a function at the State Legislature, where she gave a talk about these experiences, including this in her opening: "When people who I haven’t seen for a while ask me, 'What are you doing now?' I answer that I am a caregiver, because the role defines my life." Of course this was all before my own problems began!

I won't begin to pretend that my burden has been anywhere close to hers, even now. I was intensely involved with my dad, with her dad and now her mom to a lesser degree, have helped with various caregiver support group projects, and still do the website, but of course nothing is the same as having the primary responsibility on your own shoulders. Fortunately I'm not much of a drag on her now (I hope), though I was for a time after my surgery and could be again in the future.

Time to go pick up pizza for dinner. Aloha,

Ned

www.wvpress.com/care/

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I too am a caregiver. My wife has sclc, COPD and a couple of months ago she suffered a compression fracture of the 2nd and 3rd vertabre. She has always been an active person. She has done 15 rounds of chemo and 30 rounds of radiation. She has spells where she doesn't do much of anything.but there are also times when she over does herself. I try to give her enough care but also try to have her do things for herself. And I do agree that MY life has certainly changed and will never be the same. But that is OK because she IS the love of my life and I will do anything for her. Our 1st grandchild is on the way and I pray to God that Mary can see and feel and hold her(him), we'll know in acouple of weeks if boy or girl. I just try to do for her what I know she would do for me. This isn't really advice as much as it is me ramblin.

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Ned -- wanted to make sure I knew how to spell "assume" -- she said it's spelled "A-S-S, U and ME." More often than not, since I learned that fact, it's been the "ME" part that applied.

Ned,

That's so funny, because I was going to use that example on the thoracentesis/tap post for me. My father always taught me never to assume anything because... (We are soooo simpatico!)

Wow -- kudos to your dear wife for finding and pursuing the silver lining in a storm cloud. You have an understanding of both sides of the caretaker/patient issue. That gives you great perspective. I have to say that Tony really isn't a drag on me either. I think I create a lot of my own stress with all of my "What ifs?" and "Whens?".

Hawkeye -- Your comment "I just try to do for her what I know she would do for me" says it all. God bless you.

Welthy

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Lonely, as the sole caregiver for my mom, I fully understand how you feel. All I can tell you is that, for your sake, try to turn this around because it could just get worse from here on out. You may have a long road ahead of you as a caregiver and you really need to pace yourself for now.

Aside from MANDATORY anti-depressants for your spouse, you could just explain very nicely to him that you will not be doing anything for him that he can do himself - and feeding himself is still on the list. If he can do that - no matter how fatigued he gets - then he can take his time doing it. This really is for his own good (and yours).

I have found that there are, at least, two personalities of a patient: 1)Those who don't complain, don't ask for anything, don't want to bother, struggle to do everything for themselves and are ridiculously appreciative of any scrap they receive and 2) Those who sit down and decide that everyone else should jump to do for them, listen to their complaining, give them more and be only too happy to do it - and they expect every last bit of it.

You can't control the behavior of another person but you can control how you respond to it. Give yourself a break - YOU deserve that. Keep the refrigerator stocked and "forget" to prepare your husband's meals. The more he's forced to do, the more he'll do and the better he'll feel about his independence. It's a good cycle.

Good luck.

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I pretty much agree with Janehill, Lonely. She expressed her advice very well. I wanted to say something like that, but hesitated. The fact that your husband managed just fine to take care of himself when he had to is very telling. I am not a caregiver, but I have cancer. I guess I am in the first group of patients that Janehill talked about. But, I do accept help when offered. I recently had a bunch of friends offer to put up my next winter's firewood for me and I gratefully and gracefully accepted. I bought pizza and pop and they came and put up 4 cords for me in one day. I helped run the mechanical firewood splitter. It was like a big party. I like to stay as active as I can. I walk a mile a day and do other things for exercise as gardening. I keep the house clean and fix my own meals. I WANT to be as active and independent as possible. It is my main weapon against the cancer.

Attitude

Don M

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Don, I do want to add this - people like you are too good, too thoughtful, too selfless. Please remember that people love and care about you and that when you need help, you should let others know it's a good time. :D

I just don't want my message to be confused with some "tough love" stance, which it's not. Cancer is extremely difficult on everyone, but certainly the one suffering its physical effects and there is much help cancer patients NEED. So please do everything you can for you but not to the point of doing without when you can't. :D

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"janehill" ...I just don't want my message to be confused with some "tough love" stance, which it's not.

That shouldn't happen, although some people (none here that I'm aware of :) ) seem to take every opportunity to misunderstand and take offense.

Any carereceiver with mental faculties relatively intact simply MUST understand and appreciate that the wellbeing of the caregiver is essential to their own wellbeing. If something happened to my dear overburdened wife, her mom and I would both be in DEEP KIMCHI - her mom almost immediately, myself potentially somewhere down the line, and we all know that. Doing everything possible for oneself and keeping a genuine "thank you" part of one's everyday vocabulary may lighten the caregiver's burden just enough to keep that last straw out of sight.

Aloha,

Ned

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These posts got me thinking!

When I married Harry, I said "For better or worse, in sickness and health", etc, etc.

I truly think he would do everything possible to help me feel better, so I try to do the same for him.

Not saying that sometimes we don't have a "row" still! :shock:

He's from New Jersey--I was raised in the South. Needless to say, it's like the Civil War re-enacted here sometimes!!! LOL!

It's overwhelming for all parties I think, at certain times.

Just gotta hang on to that love, even if it seems "one-sided" at times. (I'm reminding MYSELF of that, not you! haha!)

Take care,

Nova

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