Feeling taken advantage of

Sandy,

This is one of the toughest roads to walk.  Be kind first to yourself....if you need a short break take it !  Being a caregiver is never easy, especially with someone who is so dependant on you.  I would sit down with him and explain how you feel.  This really does take a team effort !  I was really tough on first myself on my walk with the beast, and when things started going south and I regressed my poor hubby got alot of crap from me.  I hated not being independant and doing for myself.  I also was a caregiver to my Mom for 2 yrs. while she fought ovarian cancer.  But she was a fighter....and very independant until the end.  My heart goes out to you both...I'll keep you in my thoughts and prayers, and we are always here for you !  Katie

fishmanpa said:

Take it or leave it...

Sandy,

Sometimes, one needs a swift kick in the arse to open their eyes. I know where Rob has been because I've been there and I'm there now 8 weeks out of treatment. I hurt, I'm tired all the time, I have issues with swallowing, eating and my shoulder. It sucks...it really does but I'm alive! I'm still here and have things that need to be done. I still feel like crap but life goes on and it's my choice to deal with it.

There are several caretakers on this forum. I often wonder why the patient isn't here. When I got sick, I took it upon myself to find out as much as I can about my illness. This forum as well as others have and continue to be a lifeline for me. Even when I'm not as vocal, I'm here reading. Now don't get me wrong, a caretaker's job is as hard or harder in some respects than that of the patient but there comes a time when the patient needs to step up and take it upon themselves to move forward.

Sandy, I suggest you open the laptop up to this page, sit it on his lap and go do what you have to do. Rob should be "wanting" to do things for himself! He's not going to improve unless he wants to. He has the free will to ask you for help and that means he has the free will to do things for himself. If anything, I was the opposite. I made Marcia back off so I could do things for myself. I hated being dependent on others for my well being and the minute I was able to, I did for myself. Cook, clean, feed etc... this freed Marcia up to do things for her. 

One of the odd things I noticed while going through the world of cancer is life seems to stand still for the patient and the caregiver. During treatment it was like everything else stopped and all that existed was Marcia, myself and the cancer. My entire world was treatments, appointments, meds and pain. Then, all of a sudden, treatment is over and you're in recovery and life starts creeping back in and you realize it went on just fine without you. Now, it's up to you, the patient and the caregiver, to get yourself back in the swing of things. Life continues on and doesn't wait for you. I would contact his team. Who cares if he knows or not. It could be some depression or it could be he just needs a swift kick in the arse. Obviously something needs to be done. It sucks... I know it does... more than anything anyone outside of cancer can understand but you have to continue to live.  

Ok... I'll step off my soapbox now

Positive thoughts and prayers... 

"T"

I cannot accurately put into words the sheer and utter disappointment, despair, and hopelessness I felt when I finished treatment and felt worse.  Week after week no improvement, just the opposite.  No light at the end of the tunnel until maybe after week five.

I am now at week 6.5 post treatment and my throat hurts whenever I swallow.  I am unable to find anything I wish to take a second bite or swallow of thwarting my efforts to rid myself of this infernal peg tube.  Nevertheless, for me there is light at the end of the tunnel.  Now.  Not at week three, or four, or five....

Hang in there. 

You need to sit down and have a long hard talk with your husband.  He can and should be doing for himself.  Don't do his feedings tell him to.  When my husband started with this beast, I tried one time to help him with his feeding and he bite my head off.  I walked out of the room and said do it yourself and to this day 3 years later, he does everything for himself.  When I ask him does he need help, he will tell me what I can help him with. 

As far as his mother, unless she is unable physically to help you, just tell her you need her help.  There is no reason if she lives close enough that she can't help.  There is only so much you can do, and you are already over the limit.  First and foremost you must take care of yourself.

Yes I'm sure he is depressed.  I saw and still see it in my husband but he won't take medication for it.  But he does do for himself and works in the yard, when he is able too.  He was driving but lately doesn't want to.  His cancer was first laryngeal for which he is NED but then a year ago a second primary at the cervical of his esophagus.  Surgery was out due to prior radiation.  He underwent more radiation and chemo and was NED for about 4 months.  Then it came back and spread to his lung for which the only thing offered was chemo.  He declined, decided he want quality over quantity.  Today almost 6 months later he is still able to do what he wants when he wants but there are times he cries.  I think the more active he is the better he is asnd it takes his mind off of the beast.

Please take care of yourself and talk with your husband and if that doesn't do any good talk with the doctor about your husband.  You are taking too much on yourself and are going to crash if you don't get some help.

Sharon

 Hi Sandy.  My name is Shawn.  I am just the sister of a throat cancer patient.  I am not even in the same state as he is.  You may think I don't have the right to speak up.  Sometimes I feel that way too.  I do know this though, I love my brother more than life itself and I feel helpless to do anything. I found this site and read the posts every day.  I have gotten a lot of very good information that I have passed on to my brother and sister-in-law. I went home once to visit him and will do so again when I can. So, what I do is read everything I can for some insight so when the opportunity arises I will be able to help in some way.

What I have learned here is that every patient is different as is every caregiver.  Before I knew how to save posts into my favorites I read a very enlightening post from a gentleman who had advice for caregivers.  He said a lot, but it basically said to lay off.  For him, he wanted his caregiver to quit telling him what he needs to do.  He knows he needs to eat, he knows he needs to keep swallowing, he knows he needs to get up and exercise, etc.  He knows it and doesn't want to be kept telling it.  I can't say that all patients feel the same way, but it certainly started me thinking.  I am sure not patient feels this way, but it sure got me thinking.  Your husband, at this point, knows what he should be doing.  I have not dealt with cancer, but I have certainly dealt with depression.  It does sound like your husband is depressed, and RIGHTFULLY SO!  Perhaps your doctor would prescribe some anti-depressant without seeing him.  Outside of that, perhaps you should leave him be.  Tell him that it is time he start taking care of himself.  It seems to me that there is a very fine line here between caregiver and enabler, and that line can oftentimes become quite blurred.  I have seen the line crossed in my own family with my mom and dad.  My mom is perfectly capable of doing many things, yet she enjoys having my dad to everything for her.  She doesn't even get up to get her own cup of coffee anymore.  She is not any better for it, and he is getting worse!

Take care of yourself.  I am not suggesting that you ignore your husband, but you must not ignore yourself either.  Take your dear friend out for dinner or coffee after work. Have some fun.  If your husband won't try to have fun with you, go out and have a little fun yourself. Tell your husband you need a little walk and ask him to please go with you.  If he doesn't, go yourself.  I don't know how old your mom is, or if she is able to do anything for you.  Have you ever asked her for any specific help?  I know that there have been many occasions that I have told people if there is anything that I can do, just ask, and I mean it.  Sometimes I can see what needs to be done and do it, but some people need to be told what they can do.  Just saying.

From everything I have read on here, it sounds like your husband should be turning the corner soon.  It may take longer for him if he is, indeed, depressed.  It may take two more months, it may take a year, but it will happen.  In the meantime, my dear, please, please, love yourself and take as good care of yourself as you do your husband.

May God bless you and grace you with the strength it takes to get through the rest of the healing process. 

~Shawn~

p.s.  As a side note.  When I am sick, I want to be left alone.  I don't want to be alone, but I want to be left alone. If that makes any sense.   I find comfort in knowing a caregiver is nearby, but when I want help I will ask for it.  I get cranky when I hurt, so it is better for everyone around if I just ask for help when I need it.  Maybe your husband is the same.  Maybe you should have a heart-to-heart with Rob to try to get on the same page.  Don't be afraid to let him know how you feel.

robswife87 said:

I guess i am just having

a pity party for me. 

Let's start with his mom. She can be the most horrible person to ask for help. Rob's cancer is all about her. She can't deal with it. She tells me not to cry in front of him, to suck it up. But she can not even deal withit herself. She makes excuses why she can't help. "It's her 5 hour a day evening job", "she can't get to bed at an early enough hour to take him for appts". If she goes with him "well i might not be home in time to go my job". She freaked out that he had a PEG tube. She wonders"what did i do to cause his cancer". I quit calling her to tell her about anything, he can call his mom.  She freaked out when she couldn't get anyone on the phone one time. I walked into the house to see her number on caller id. I jsut walked back outside. WE were enjoying sitting outside in nice weather. She ends up calling our daughter, my mom and everyone else to find us. 

My mom has been great, she has taken him to chemo, to get his PEG consult and then to get the PEG. All while I was working. My mom has been a great help, but she now works with a very screwy schedule. At least treatments are over. 

The RO told us after 2 weeks he should turn the corner and start feeling better. He says he feels worse. But he won't take any meds except is Morphine, Started sleeping alot of the day and sits on his phone. Wont take a  small walk. Even the docs said just 10 mins of light exercise will help combat the fatigue. Nope. 

I guess I am at my wits end on how to motivate him. He had not left this house for over 2 weeks until today and ran to the gas station real quick and back on the couch. He never even walked out onto the deck in over 7 days when we had the most beautiful weather. He says showering is too much work. 

Yet anyone who calls from work or other family, he tells them he is okay. I just wish they would stop by and take a good look at him.

Sandy

to hear this!  I agree with everyone else...take time for YOURSELF!  You need care at this stage as well.  I've tried to do too much because I feel bad for all my husband has had to do.  I can see how depression can set in, but he is being unfair to you (in my opinion).  I think all of the comments above have some great suggestions!  ((HUGS))

KTeacher said:

Speaking from the needy side

This is my third go around with 'c.'  My husband is retired so that has helped us.  This time I am in much more need of help.  I returned back to work 2 months after treatment the first time, and 1 month after the second time--this time, I'm retired!  If your husband had chemo, he had plenty of blood work done, how were his numbers (white blood count).  My WBC was low and I was fighting getting a blood transfusion, then I got sick and I knew that I needed blood to start getting better.  I was weak and dizzy, the transfusion helped and than I had enough energy to eat and walk down the hall.  I made sure that my hubby got out, lunch with a friend or shooting trap--I got a babysitter to stay with me.  You need to take care of yourself or you will end up sick and that won't be of help to either of you.  Call in the reserves, friends and yes family.  Make sure things are ready for him and go for a walk or get a cup of coffee.  Refresh yourself.  He will make due.  BTW, the first time I had thrush throughout treatment, I wished I could have gotten the Nystatin by the gallon!  I did need to take the medicine I think for a month after treatment ended.  I never had a Peg, was able to eat and drink enough but did loose weight.

Take some "Sandy time". You've earned it and deserve it. If you don't take care of yourself, you can't take care of Rob. 

Hi Sandy,

You don't know me, but I connected with you the first time I read your post. Ruben was diagnosed and started treatment just a week after Rob, on both counts.  We were encouraged by your post of how he responded to his first round of chemo, and it lessened our fears. Even tho I am an oncology nurse, I had no idea what WE were in for.  (Well, I had enough of an idea to be SUPER anxious and lost close to 30 lbs in less than 4 weeks!)

I understand your frustration. I understand his depression... and he IS depressed. Most people who are don't recognize it, but he has all the classic symptoms.... besides feeling like crap to boot. Be patient with him and with yourself. Take a deep breath and remember there is light at the end of the tunnel. You both will get through this. I remember how frightened you (and I) were when this all began. How we didn't want to lose our husbands to this horrible illness, and still don't. He does need a kick in the pants, but let his doctor do it. He hasn't listened to you, but I'll bet he'll listen to his doctor. Call him/her and tell what your concerns are. You're his wife, you have that right. Be assertive. And be assertive for yourself, ask others for help. You can't do it all, and no one expects you to. I took time off work, and I still get exhausted. I'm no saint, but I have been able to let his frustrations roll off my back like water on a duck.

You hang in, it will be well worth it. Lean on God for strength. He's been our Rock. I thank God for His Holy Spirit, even tho at times all I have is a mustard seed of faith, He is the faithful one. Don't let go now, you're so close to the finish line.

Sending Hugs and fond regards. Take care my friend.

Jude

Sandy, I was there myself. Jim also refused to go on anti depressants. He would say, "I am not depressed." I finally brought it up while at the doctors office. He flat out told him he was depressed. I told Jim I couldn't take any more that all he had to do was try it, he could always quit if it didn't help. This was several months after treatment. Once he started the meds he started feeding himself, doing a few things around the house, etc. Two months after he started the meds he discontinued them and has stayed as active as his energy allows. I suffer from clinical depression myself and when you are depressed everything is hopeless and you feel that nothing will help.

As for your mother in law, just be blunt with her. Tell her if she can't be of help to not be a burden. When she calls, make an excuse to get off the phone if she continues, "Someone at door, husband needs you." or do like I did, hand him the phone and say, It's your mother.

Basically, you need to be blunt with him. Maybe a little crying in front of him might help. And I know it is easier said than done, but try to get some time to talk to someone you can be honest with. How about your neighbor? and take me time, even if just 10 minutes. Send me a personal message if you need someone to vent to or who has gone through the same trials. I had my sister whose husband died of lung cancer. I would drive down the raod and park just to be able to call her and cry.

Debbie

robswife87 said:

Gave him

a little kick in the pants over the weekend.

Had a little talk with him about it being time to get off the couch and take care of himself. I told him if he wants to live this way forever that is up to him but that I need to get normalcy in my life again and that I can no longer be at his beck and call.

He has since been up and about, left the house to go to the store twice, feeds himself, takes his medicines as he is supposed to, cleans up his feeding supplies, goes outside. 

I am not telling him to get up and go to work, just to at least do some things to try and get energy back.

I just have to remember if he starts slipping back to not just let it happen.

He did eat pa couple of bites of piza yesterday and drank some soda, although no taste, he said it was good to chew and swallow real food.

Sandy

Glad to see him up and around. Indeed it will help give him his energy he needs. I agree with Jude....it may have been a sign of depression. When your depressed, you almost feel like giving up and therefore...."let everyone else do things for you".....because you don't WANT to do ANYTHING but think about that awful "Cancer". The diagnosis of cancer messes with our minds. He is still probably in shock....as he got his dx, then tx, and then done...Now what? Did the tx work? Will I survive this? Will it come back? All of those questions pilfering our minds. He gets no exception for feeling this way...it's normal, believe it or not.

Only you know his personality and know how he works. Maybe what you said to him was all he needed to shake him out of that state for the time being. But, please remember, this is a long process of healing both physically and mentally. My loved one reacted a little differently. He wanted to do EVERYTHING physically for himself, but the help with the mental part was needed from me and even at 6 months out from tx, he still needs that mental support. We work with it everyday...together. It just goes to show that we are all different and handle things differently mentally and physically. As long as you are there for him and work through it together, you're doing the best you can.

Go ROB!!!....and Good Luck Sandy!

~C

robswife87 said:

Gave him

a little kick in the pants over the weekend.

Had a little talk with him about it being time to get off the couch and take care of himself. I told him if he wants to live this way forever that is up to him but that I need to get normalcy in my life again and that I can no longer be at his beck and call.

He has since been up and about, left the house to go to the store twice, feeds himself, takes his medicines as he is supposed to, cleans up his feeding supplies, goes outside. 

I am not telling him to get up and go to work, just to at least do some things to try and get energy back.

I just have to remember if he starts slipping back to not just let it happen.

He did eat pa couple of bites of piza yesterday and drank some soda, although no taste, he said it was good to chew and swallow real food.

Sandy

Way to go Sgt Sandy......