Lost

Fabs4ever

For the past month I have been by my husband's side. I have not left him. We are close and that has never been a questioning factor in our relationship.

After his colon surgery, I have helped him in all ways; going to the bathroom, showering him, feeding etc. We came home and I have got his strength back to where he can fend for himself. He can't drive or lift over 5lbs yet, but that's okay. I have always handled misc dr appointments, fix dinner, deal with financial stuff, while working and tending to our daughter.

He is healing. He told me the other day that he doesn't need me any more. Those words cut like a knife.

He hasn't started chemo yet, so I know that chemo isn't to blame,

I am heading back to work today, against my own will. He was running a fever again last night, so I don't feel that he is ready for me to go back to work. I see him weak. Not like after his surgery, just not himself.

He acts differently. He won't talk. His family doesn't come around.

Am I being selfish? I don't want him sick, just would like things back to somewhat normal before he got sick.

I don't know maybe I am making a mountain out of a mole hill. But the words hurt me

Barbara53

boundaries
Doesn't need you anymore? I swear, sometimes things come out of mens' mouths that are simply amazing. He's probably not aware that he said it. When the time is right, tell him how much those words hurt. The general cannot treat his first lieutenant that way and expect good service.

Selfish? Not at all. You have to keep up some boundaries so that all the out of control things going on with your husband stop just short of you. You're just getting started, and have a long, long way to go. Take care of yourself.

Pennymac02

Fabs
People who are hurting hurt people. It doesn't make it excusable, it makes it understandable, though. It sounds like your husband is grasping for some control; some semblence of himself. He may feel that you're hovering, and he's trying to find his independance, although he's doing it in a way that's hurting your feelings.

My husband had a lot of mental confusion, then he'd be fine and be thinking clearly, and he'd get mad at me for "treating him like a child". Some times the caregiver role is a no win situation. Our goal is to help our loved one feel better and gain health, essentially putting ourselves out of the job, when it happens.

My advice: go to work, and take some care of yourself. Work was my reprieve, a place I could go and deal with normality. Your life will continue to go on, regardless of the outcome of his cancer treatments. Mike passed on January 14, and I'm back in my second week of work, grateful that my job and the people that I work with have been a constant in my life.

And I would tell him that what he said hurt your feelings. I had a hard time at first trying to avoid arguments with Mike, because, you know, CANCER. I thought that maybe I should treat him with kid gloves because of his diagnosis. But some of the wonderful caregivers here encouraged me to keep the relationship real, and it was some of the best advice I got. When I was mad at him or he hurt my feelings, I let him know. It actually helped him, too, because it let him know that our normal husband/wife relationship was still there.

Hope this helps.
Penny

here4lfe

This journey for me is like none that I ever imagined I would have. And I did not know how my wife would respond. So I tried to educate myself as much as possible, support her by taking her lead, and try not to take anything personal.

Easier said than done, I know.

Best

3Mana

WHAT????????
What the heck made him say he doesn't need you anymore???? You've been there taking care of him. Has he just given up or what? I sure hope that you can have a talk with him to find out why he made a statement like that.
Please take care. You sure aren't selfish, you've given so much time to take care of him so don't feel like you're selfish at all!! Keep us posted & good luck.
"Carole"

DrMary

3Mana said:

WHAT????????
What the heck made him say he doesn't need you anymore???? You've been there taking care of him. Has he just given up or what? I sure hope that you can have a talk with him to find out why he made a statement like that.
Please take care. You sure aren't selfish, you've given so much time to take care of him so don't feel like you're selfish at all!! Keep us posted & good luck.
"Carole"

Mine too, sort of
Mine had the excuse that I was running out of leave and we'd suffer a loss of income if I didn't go back to work. I took about 5 weeks off - he did concurrent chemo and radiation, so I was there during the worst of the 2nd chemo and the end of the radiation. I wasn't sure he was ready and wanted to have my youngest (13-year-old boy) stay home for the first few days to help, but he wouldn't hear of that either.

The first few weeks, I left ready-made milkshakes in the fridge, had his pills in various pill-holders with the times, and emailed often to make sure he was drinking enough water, etc. Mostly, he slept. He then wanted to learn how to make his own milkshakes. Then he started cleaning up the kitchen a bit, and starting laundry.

I'm stupid, but it eventually hit me - he wanted to be useful and as independent as possible. No wonder he didn't want me there.

None of us like to be dependent. Sounds like your guy is resisting the dependence his illness forces on him. The withdrawal and lack of tact might be symptoms - he may be very frustrated with how he feels and the realization that he has a long road ahead. Mine did a bit of that - I mostly forgave him. . .

mswijiknyc

Busting chops
First week at home out of surgery, hubby said "stop treating me special." Within two days he asked for something out of the ordinary, and the first words out of my mouth were "I thought you didn't want me to treat you special?"

We found that happy medium real quick.

He's hurting, scared, and stubborn so the first person he goes after is the one who has been there. He's having to let go of control of things and it's driving him nuts, so now that he feels he is better he is asserting himself. As hard as it will be, let him. And when he asks for help, very gently remind him that he said he no longer needed your help. It's hard to watch someone you love so dearly flounder and all you want to do is help.

And in his way he may be trying to free you from caring for him as he knows how hard it's been for you. That happy medium will be found and he knows how much you love him. He's probably just feeling very isolated by his sickness. See if people can come out to visit. It may be hard on him physcally and you too, but the mental rewards for both of you would be worth it.

Fabs4ever

mswijiknyc said:

Busting chops
First week at home out of surgery, hubby said "stop treating me special." Within two days he asked for something out of the ordinary, and the first words out of my mouth were "I thought you didn't want me to treat you special?"

We found that happy medium real quick.

He's hurting, scared, and stubborn so the first person he goes after is the one who has been there. He's having to let go of control of things and it's driving him nuts, so now that he feels he is better he is asserting himself. As hard as it will be, let him. And when he asks for help, very gently remind him that he said he no longer needed your help. It's hard to watch someone you love so dearly flounder and all you want to do is help.

And in his way he may be trying to free you from caring for him as he knows how hard it's been for you. That happy medium will be found and he knows how much you love him. He's probably just feeling very isolated by his sickness. See if people can come out to visit. It may be hard on him physcally and you too, but the mental rewards for both of you would be worth it.

I cried a lot
I cried a lot yesterday!!!

He apologized, we talked about it. I am over it!!!

We visited the cancer dr yesterday!!! I never felt more like just a number on the wall then I did at that very moment. My husband starts chemo on the 14th of this month. Being placed on Folfax. I hate this I hate this.... He is beginning to hurt more. He finished his antibotic on Saturday for the infection, and he fevered right back up to 102.7 last night. Going to the dr wore him out. While we were there, I asked if afterwards he wanted to go to Wal~mart etc with me, he was all for it, until the appointment was actually over. He said, please just take me home. Does this mean it's getting worse? He is so weak. He pulled his jeans on yesterday and they fell right back off of him. They weighed him and he is continuing to lose weight.

As long as he is running a fever, they will not start chemo.

Friends I am just pouring my heart out here. I went to my mom's just to sit and cry. She pitied me but I dont want pity. People dont know what to say. I know they mean well.

Have a great day all!!!

Pennymac02

Fabs4ever said:

I cried a lot
I cried a lot yesterday!!!

He apologized, we talked about it. I am over it!!!

We visited the cancer dr yesterday!!! I never felt more like just a number on the wall then I did at that very moment. My husband starts chemo on the 14th of this month. Being placed on Folfax. I hate this I hate this.... He is beginning to hurt more. He finished his antibotic on Saturday for the infection, and he fevered right back up to 102.7 last night. Going to the dr wore him out. While we were there, I asked if afterwards he wanted to go to Wal~mart etc with me, he was all for it, until the appointment was actually over. He said, please just take me home. Does this mean it's getting worse? He is so weak. He pulled his jeans on yesterday and they fell right back off of him. They weighed him and he is continuing to lose weight.

As long as he is running a fever, they will not start chemo.

Friends I am just pouring my heart out here. I went to my mom's just to sit and cry. She pitied me but I dont want pity. People dont know what to say. I know they mean well.

Have a great day all!!!

I wish
I wish there was some sage advice I could offer to make this easier for you! Cargiving for someone is a rollercoaster, some days it's the kiddie coaster, sometimes it's the screamer, but it's always a journey with ups and downs, twists and turns.

3Mana

Fabs4ever said:

I cried a lot
I cried a lot yesterday!!!

He apologized, we talked about it. I am over it!!!

We visited the cancer dr yesterday!!! I never felt more like just a number on the wall then I did at that very moment. My husband starts chemo on the 14th of this month. Being placed on Folfax. I hate this I hate this.... He is beginning to hurt more. He finished his antibotic on Saturday for the infection, and he fevered right back up to 102.7 last night. Going to the dr wore him out. While we were there, I asked if afterwards he wanted to go to Wal~mart etc with me, he was all for it, until the appointment was actually over. He said, please just take me home. Does this mean it's getting worse? He is so weak. He pulled his jeans on yesterday and they fell right back off of him. They weighed him and he is continuing to lose weight.

As long as he is running a fever, they will not start chemo.

Friends I am just pouring my heart out here. I went to my mom's just to sit and cry. She pitied me but I dont want pity. People dont know what to say. I know they mean well.

Have a great day all!!!

Not easy
Hi,
It's not easy being a caregiver. Sometimes I almost think it's harder than being the patient. When you love someone and they're sick, it takes so much strength to try act like everything will be okay. Always tried not to show my emotions in front of my husband. Although when he was diagnosed and we got back home, we just held each other and cried. A year ago today I only had 24 more days with him and never dreamed how awful it would be.
Try and be strong and be sure you tell your hubby you love him and keep thinking positive.
This is a great site and you'll get alot of support on here. 'Carole"

3Mana

Fabs4ever said:

I cried a lot
I cried a lot yesterday!!!

He apologized, we talked about it. I am over it!!!

We visited the cancer dr yesterday!!! I never felt more like just a number on the wall then I did at that very moment. My husband starts chemo on the 14th of this month. Being placed on Folfax. I hate this I hate this.... He is beginning to hurt more. He finished his antibotic on Saturday for the infection, and he fevered right back up to 102.7 last night. Going to the dr wore him out. While we were there, I asked if afterwards he wanted to go to Wal~mart etc with me, he was all for it, until the appointment was actually over. He said, please just take me home. Does this mean it's getting worse? He is so weak. He pulled his jeans on yesterday and they fell right back off of him. They weighed him and he is continuing to lose weight.

As long as he is running a fever, they will not start chemo.

Friends I am just pouring my heart out here. I went to my mom's just to sit and cry. She pitied me but I dont want pity. People dont know what to say. I know they mean well.

Have a great day all!!!

OOPS
Double post!

here4lfe

Fabs4ever said:

I cried a lot
I cried a lot yesterday!!!

He apologized, we talked about it. I am over it!!!

We visited the cancer dr yesterday!!! I never felt more like just a number on the wall then I did at that very moment. My husband starts chemo on the 14th of this month. Being placed on Folfax. I hate this I hate this.... He is beginning to hurt more. He finished his antibotic on Saturday for the infection, and he fevered right back up to 102.7 last night. Going to the dr wore him out. While we were there, I asked if afterwards he wanted to go to Wal~mart etc with me, he was all for it, until the appointment was actually over. He said, please just take me home. Does this mean it's getting worse? He is so weak. He pulled his jeans on yesterday and they fell right back off of him. They weighed him and he is continuing to lose weight.

As long as he is running a fever, they will not start chemo.

Friends I am just pouring my heart out here. I went to my mom's just to sit and cry. She pitied me but I dont want pity. People dont know what to say. I know they mean well.

Have a great day all!!!

Hang In There
Take it one step at a time. The infection is keeping things on hold. Fine. Knock out the infection. Take it one step at a time.

Best

Fabs4ever

here4lfe said:

Hang In There
Take it one step at a time. The infection is keeping things on hold. Fine. Knock out the infection. Take it one step at a time.

Best

Moving along!!!
WE pushed a
Moving along!!!

WE pushed a little too much yesterday. Lots of walking. Hubby was hurting last night and extemely tired today!!! He has still been fevering up in the evening.

We are scheduled to have port in on Wednesday...pending fever!!

The open wound on his belly is looking much better!!!

We are fighting with a loan company that we have. 12 days late and they are demanding their payment.. Never a day late and we get treated like crap!!! Is there something that you can do about those annoying creditors?

Hope all is good with everyone

Fabs4ever

Fabs4ever said:

Moving along!!!
WE pushed a
Moving along!!!

WE pushed a little too much yesterday. Lots of walking. Hubby was hurting last night and extemely tired today!!! He has still been fevering up in the evening.

We are scheduled to have port in on Wednesday...pending fever!!

The open wound on his belly is looking much better!!!

We are fighting with a loan company that we have. 12 days late and they are demanding their payment.. Never a day late and we get treated like crap!!! Is there something that you can do about those annoying creditors?

Hope all is good with everyone

Update
First treatment of chemo was om Monday. Come home with 48 hour pump, pump finishes and all he'll breaks loose. Rushed my husband to emergency room because he couldn't breathe. Admitted because has a couple blot clots on his lung. Been on blood thinner since 1 pm Wednesday and his inr(I believe the right terminology) has only moved from 31 to 32, and I was told we should be in the 50's. Can someone explain this more? The ups and downs about the whole thing.

This is starting to affect his "good spirits". Doc is wanting to put on lovenox at home but worried insurane won't cover the greater portion. But doc says lovenox is better for cancer patients. Nurse said after insurance her mom spent a100.00 a day. Ouch!!!! How to you provide the best for loved ones but financially there is no way.


Any answers.

tc_sis

Fabs4ever said:

Update
First treatment of chemo was om Monday. Come home with 48 hour pump, pump finishes and all he'll breaks loose. Rushed my husband to emergency room because he couldn't breathe. Admitted because has a couple blot clots on his lung. Been on blood thinner since 1 pm Wednesday and his inr(I believe the right terminology) has only moved from 31 to 32, and I was told we should be in the 50's. Can someone explain this more? The ups and downs about the whole thing.

This is starting to affect his "good spirits". Doc is wanting to put on lovenox at home but worried insurane won't cover the greater portion. But doc says lovenox is better for cancer patients. Nurse said after insurance her mom spent a100.00 a day. Ouch!!!! How to you provide the best for loved ones but financially there is no way.


Any answers.

Fabs, so sorry to hear of your experience. We have faced a similar situation this past two weeks. Two different cancers...same evil villan. My brother having liver cancer made the blood thinner for the PE a big problem. But thats liver cancer. The one thing that his onc told us this past Tuesday,while he was trying to help us sort out the horrors of the past weeks was this....People with cancer any type of cancer tend to develope blood clots. I am certainly thinking of you as you face this crisis and pray for a speedy resolution. Since that first episode with the blood clot my brother has been hospitalized two more times, but he is home now feeling as well as he did before it all started.

There are ways around the insurance ... first you have to insist that the insurance cover things if his doc says it is neccesary, and second you have to have someone in the doctors office ready to go to bat for you with the insurance. I find it terrible the way insurance companies do us in our most vulnerable times. We had to fight for 3 different meds for my brother and were able to get everything covered. We have a wonderful nurse navigator who is very up on all of the ins and outs. She even had us to call them from the viewpoint of the desperate family and it rattled the cage. Here we also have a pharmacy in one of the local hospitals called the Dispensary of Hope, they discount meds and completely pay for others. There may also be one in your area.


tc_sis

Fabs4ever

tc_sis said:

Fabs, so sorry to hear of your experience. We have faced a similar situation this past two weeks. Two different cancers...same evil villan. My brother having liver cancer made the blood thinner for the PE a big problem. But thats liver cancer. The one thing that his onc told us this past Tuesday,while he was trying to help us sort out the horrors of the past weeks was this....People with cancer any type of cancer tend to develope blood clots. I am certainly thinking of you as you face this crisis and pray for a speedy resolution. Since that first episode with the blood clot my brother has been hospitalized two more times, but he is home now feeling as well as he did before it all started.

There are ways around the insurance ... first you have to insist that the insurance cover things if his doc says it is neccesary, and second you have to have someone in the doctors office ready to go to bat for you with the insurance. I find it terrible the way insurance companies do us in our most vulnerable times. We had to fight for 3 different meds for my brother and were able to get everything covered. We have a wonderful nurse navigator who is very up on all of the ins and outs. She even had us to call them from the viewpoint of the desperate family and it rattled the cage. Here we also have a pharmacy in one of the local hospitals called the Dispensary of Hope, they discount meds and completely pay for others. There may also be one in your area.


tc_sis

Praise God!!! Social worker
Praise God!!! Social worker came in and said that insurance will cover shots with 10.00 month copay ,,, God is good!,,

DrMary

Fabs4ever said:

Praise God!!! Social worker
Praise God!!! Social worker came in and said that insurance will cover shots with 10.00 month copay ,,, God is good!,,

That's great!
We do the Lovanox also but pay about $15/week. It is better when the person does not have a regular diet because it works directly on preventing clot formation rather than inhibiting vitamin K absorption, the way Cumadin does; when you eat almost nothing some days, your vitamin K goes too low and you can bleed internally. The shots are a pain, however - sometimes they sting and sometimes they don't and I haven't found a technique that prevents the sting.