Coping

stevie58

My wife has been battling cancer for 7 years? Maybe its 8. Anyway, after the last surgery she has two bags in front as they took out most of her intestines. She is getting nightly nutrition thru her IV and has just started another 4 months of chemo. Changed the font size so its easier to read. So they taught me to do the flushes and hook up the TPN. My bedroom is full of ostomy stuff, semi organized and my dining room is full of medical supplies for the TPN, We have to dump tanks every few hours. She is unable to walk without assistance. Nerve damage from the surgery. I do everything.

I find myself on the ragged edge pretty often. Everyone says what a great job I am doing but they have no idea how stressed out I am. I can do nothing but take care of her 24/7. A nurse told me to make sure I take care of myself also but what am I supposed to do? I am really frustrated. Caregivers suffer as much as those with the cancer. The hardest part is we have to continue on after the inevitable. Not sure I even want to. The toll this is taking on me is extreme. This is for sure, not the life I imagined.

happytogether

Coping

 I am glad you are sharing your feelings. I also am taking care of my husband. People don't understand how much we really take on. We love them so much that we can't leave them but it's a hard time for us as well.

 

Know what really drives me crazy - when someone says "You are so strong. And what a great job you are doing" I know myseslf that I ache every minute of the day because the person I have been married to for 18 years is going to leave me. I know people mean well and I don't let them see what I really think when I am told that. They don't mean to hurt me.

 

I am sorry to hear your wife is so ill.

 

Please know I will keep you in my prayers. It's nice to be in a place where you don't get judged on how you really feel. I def take advantage of all the great people on this page. If I have a bad day I can come here and be judgement-free. Just too bad we couldn't be on a discussion board about the beach or great vacation places.

 

 

 

Ladylacy

Coping

Yes it is hard to be a caregiver and listen to others who have not been there or do what we are caregivers do.  I was my husband's caregiver (he passed in late July 2015) and yes he is at peace and not suffering but now I am even more than when he was alive.  My biggest regrets now are the things I said to him when I would get mad at having to do everything and he couldn't help me help him at all.  It is hard not to say things when you are exhausted and tired physically and mentally.  I would always tell him that I wasn't mad at him, that I love him with all my heart, BUT I was mad at the situation.  Our hospice nurse would tell me that it was hard and not to blame myself, that it was normal, but that was hard to do.

I remember good friends of ours.  The wife had Parkinson's and at the end she couldn't do anything for herself.  The husband had a hard time and he would tell us how hard it was to watch his loved one in her condition knowing she was going to die soon.  We at that time could only say how sorry we were but didn't know th extent of his feelings and how hard it was, until we had to go thru it ourselves.  Don't be so hard on yourself.  It is exhausting and others mean well, they just don't understand.  Only those who have walked in our shoes know.  And definitely yes you need to take care of yourself and to make use of any services you qualify for.  Many people think hospice is only for the last but that's not true.  My husband was on hospice for 22 months and it was in-home.  Towards the end I was told we could have more people coming into our home to help out, but I didn't want a lot of strangers coming in our home, even though they had been doing this for years.  I have a friend going thru the same thing right now.  All I can do is be there to talk with her because I understand what she is going thru.  And yes she makes time for herself.  Take time to go out for a walk, to the grocery store, talk with your neighbors.  I would leave my husband alone but never for more than an hour just to get out and away and that helped me, even cutting the grass.  But at the end I was always sitting beside him.

Wishing you peace and comfort -- Sharon

stevie58

happytogether said:

Coping

 I am glad you are sharing your feelings. I also am taking care of my husband. People don't understand how much we really take on. We love them so much that we can't leave them but it's a hard time for us as well.

 

Know what really drives me crazy - when someone says "You are so strong. And what a great job you are doing" I know myseslf that I ache every minute of the day because the person I have been married to for 18 years is going to leave me. I know people mean well and I don't let them see what I really think when I am told that. They don't mean to hurt me.

 

I am sorry to hear your wife is so ill.

 

Please know I will keep you in my prayers. It's nice to be in a place where you don't get judged on how you really feel. I def take advantage of all the great people on this page. If I have a bad day I can come here and be judgement-free. Just too bad we couldn't be on a discussion board about the beach or great vacation places.

 

 

 

coping

So sorry to find so many people in the same boat as myself. My wife is a very tough little lady. I am lucky as she keeps her attitude up and always sees the positive. In all of this I have only caught her feeling sorry for herself just a few times. She is amazing. I wish I was as tough. I am the one who pretends to be tough and have it altogether. She is in the hospital for what has almost become routine. She gets sick, unable to keep her food down and I take her in and they give her more antibiotics and anti nausea. The last stay was 20 days. This one will be less than a week as she is going to be released tomorrow. If we can just beat the infections and nausea, she would be able to get back on her feet and maybe we get another year of sort of normal. More chemo next week.

I am okay when she is home even though I am busy 24/7. Its when she is in the hospital that I have my own little breakdowns.  Today was our grand daughters 2nd birthday and my daughter called her so she could sing happy birthday thru the speaker phone. It made me cry cause I know how much it means to her to be part of the kids and grand kids lives. She is the stereotype house mouse. All she ever wanted was a home, a station wagon and children and grand children. One of the doctors told her to get on her bucket list. Another is much more positive and so we have no idea is she has a year or maybe three. I know that when she is gone I will be an absolute wreck.

Her mother has stayed with us on occasion along with her friend and I really appreciate the help. I put all of the ups and downs along with her progress on my facebook page. That works real well as we have a lot of family and friends pulling for her. Saves me from having to make a whole bunch of phone calls when sometimes I am so on the edge that talking becomes very difficult without breaking down. It is surreal. Next week she will be home and happy and we will work on her walking and she will be determined as usual to get better in spite of the constant setbacks.

stevie58

Ladylacy said:

Coping

Yes it is hard to be a caregiver and listen to others who have not been there or do what we are caregivers do.  I was my husband's caregiver (he passed in late July 2015) and yes he is at peace and not suffering but now I am even more than when he was alive.  My biggest regrets now are the things I said to him when I would get mad at having to do everything and he couldn't help me help him at all.  It is hard not to say things when you are exhausted and tired physically and mentally.  I would always tell him that I wasn't mad at him, that I love him with all my heart, BUT I was mad at the situation.  Our hospice nurse would tell me that it was hard and not to blame myself, that it was normal, but that was hard to do.

I remember good friends of ours.  The wife had Parkinson's and at the end she couldn't do anything for herself.  The husband had a hard time and he would tell us how hard it was to watch his loved one in her condition knowing she was going to die soon.  We at that time could only say how sorry we were but didn't know th extent of his feelings and how hard it was, until we had to go thru it ourselves.  Don't be so hard on yourself.  It is exhausting and others mean well, they just don't understand.  Only those who have walked in our shoes know.  And definitely yes you need to take care of yourself and to make use of any services you qualify for.  Many people think hospice is only for the last but that's not true.  My husband was on hospice for 22 months and it was in-home.  Towards the end I was told we could have more people coming into our home to help out, but I didn't want a lot of strangers coming in our home, even though they had been doing this for years.  I have a friend going thru the same thing right now.  All I can do is be there to talk with her because I understand what she is going thru.  And yes she makes time for herself.  Take time to go out for a walk, to the grocery store, talk with your neighbors.  I would leave my husband alone but never for more than an hour just to get out and away and that helped me, even cutting the grass.  But at the end I was always sitting beside him.

Wishing you peace and comfort -- Sharon

coping

So sorry for your loss. It is the hardest part to watch someone we love suffer knowing the endgame is not going to go our way. I was told by the nurse to take care of me also but we all set our own needs aside when it comes to taking care of someone. The nurse also told me that when my wife is gone, not to let myself be in a postiton of wishing I had done more. Or wishing I had done more with my wife while she was here. The nurse in question also lost her husband to cancer. I don't know what more I can do. At this point, if she even sneezes I take her to the hospital and so far it has proved a good idea. I kiss her and tell her I love her everyday and I rarely complain. Our family is close and a big help. Its a really big deal just to have her daughters visit and bring the grand daughters.

 I wish none of us had to go thru this. I wish none of us were part of this special club of people who suffered some of the most difficult things for the longest periods of time.

  This is the kind of thing that tests our love and committment to each other way beyond what we may have thought we could handle. I would rather have her here as difficult as it is than to be without her. Good on you for being able to help your friend thru this. I can't imagine that I will be much use to anyone after this is over. I have set up our wills and powers of attourney and all that to make it as easy as possible on our kids. Doing everything we can to give them a good start on their own lives.

 

 

happytogether

stevie58 said:

coping

So sorry to find so many people in the same boat as myself. My wife is a very tough little lady. I am lucky as she keeps her attitude up and always sees the positive. In all of this I have only caught her feeling sorry for herself just a few times. She is amazing. I wish I was as tough. I am the one who pretends to be tough and have it altogether. She is in the hospital for what has almost become routine. She gets sick, unable to keep her food down and I take her in and they give her more antibiotics and anti nausea. The last stay was 20 days. This one will be less than a week as she is going to be released tomorrow. If we can just beat the infections and nausea, she would be able to get back on her feet and maybe we get another year of sort of normal. More chemo next week.

I am okay when she is home even though I am busy 24/7. Its when she is in the hospital that I have my own little breakdowns.  Today was our grand daughters 2nd birthday and my daughter called her so she could sing happy birthday thru the speaker phone. It made me cry cause I know how much it means to her to be part of the kids and grand kids lives. She is the stereotype house mouse. All she ever wanted was a home, a station wagon and children and grand children. One of the doctors told her to get on her bucket list. Another is much more positive and so we have no idea is she has a year or maybe three. I know that when she is gone I will be an absolute wreck.

Her mother has stayed with us on occasion along with her friend and I really appreciate the help. I put all of the ups and downs along with her progress on my facebook page. That works real well as we have a lot of family and friends pulling for her. Saves me from having to make a whole bunch of phone calls when sometimes I am so on the edge that talking becomes very difficult without breaking down. It is surreal. Next week she will be home and happy and we will work on her walking and she will be determined as usual to get better in spite of the constant setbacks.

It really does stink that

It really does stink that there are so many families are going through these tough times.

I will pray for you and your family.

happytogether

Ladylacy said:

Coping

Yes it is hard to be a caregiver and listen to others who have not been there or do what we are caregivers do.  I was my husband's caregiver (he passed in late July 2015) and yes he is at peace and not suffering but now I am even more than when he was alive.  My biggest regrets now are the things I said to him when I would get mad at having to do everything and he couldn't help me help him at all.  It is hard not to say things when you are exhausted and tired physically and mentally.  I would always tell him that I wasn't mad at him, that I love him with all my heart, BUT I was mad at the situation.  Our hospice nurse would tell me that it was hard and not to blame myself, that it was normal, but that was hard to do.

I remember good friends of ours.  The wife had Parkinson's and at the end she couldn't do anything for herself.  The husband had a hard time and he would tell us how hard it was to watch his loved one in her condition knowing she was going to die soon.  We at that time could only say how sorry we were but didn't know th extent of his feelings and how hard it was, until we had to go thru it ourselves.  Don't be so hard on yourself.  It is exhausting and others mean well, they just don't understand.  Only those who have walked in our shoes know.  And definitely yes you need to take care of yourself and to make use of any services you qualify for.  Many people think hospice is only for the last but that's not true.  My husband was on hospice for 22 months and it was in-home.  Towards the end I was told we could have more people coming into our home to help out, but I didn't want a lot of strangers coming in our home, even though they had been doing this for years.  I have a friend going thru the same thing right now.  All I can do is be there to talk with her because I understand what she is going thru.  And yes she makes time for herself.  Take time to go out for a walk, to the grocery store, talk with your neighbors.  I would leave my husband alone but never for more than an hour just to get out and away and that helped me, even cutting the grass.  But at the end I was always sitting beside him.

Wishing you peace and comfort -- Sharon

Sorry about your loss. You

Sorry about your loss. You know, I am scared about after he (my husband) is gone - like you said you are suffering more now. Guess I'm just scared about everything.

I do understand that my friends and co-workers really care. That's why I just accept their thoughts. I do appreciate they care. Really I think it's just me. So people never know I get angry some times.

 

But I really must say just venting on this board helps so so much.

 

Thank you

stevie58

happytogether said:

Sorry about your loss. You

Sorry about your loss. You know, I am scared about after he (my husband) is gone - like you said you are suffering more now. Guess I'm just scared about everything.

I do understand that my friends and co-workers really care. That's why I just accept their thoughts. I do appreciate they care. Really I think it's just me. So people never know I get angry some times.

 

But I really must say just venting on this board helps so so much.

 

Thank you

coping

She has been home a few weeks from the hospital. The nausea keeps returning. Some days worse than others. Only a few days of actually feeling good. Took her to the ER last night. She was having severe nausea and they gave her some fluids and anti nausea meds. Dr gave her the option of going home or being admitted. Of course she wants to be home.

Talked to her Dr this morning and she is going back for fluids the next three days. Right now she is okay. Able to drink a little water and watch TV. If she starts with throwing up again I am going to bring her back and she will be admitted. I put a post on facebook and her phone started ringing. I had to tell everyone to stop calling and let her rest. Almost time to get her TPN ready. Without IV nutrition she would wither away. It really is a 24/7 job taking care of her. I wonder how people handle this when they still have to work a regular job? I keep hoping that the nausea problem would go away. When she feels good she gets up on her feet a little and is back to her normal self. With the nausea, she just suffers and I am powerless to help her.

 

happytogether

stevie58 said:

coping

She has been home a few weeks from the hospital. The nausea keeps returning. Some days worse than others. Only a few days of actually feeling good. Took her to the ER last night. She was having severe nausea and they gave her some fluids and anti nausea meds. Dr gave her the option of going home or being admitted. Of course she wants to be home.

Talked to her Dr this morning and she is going back for fluids the next three days. Right now she is okay. Able to drink a little water and watch TV. If she starts with throwing up again I am going to bring her back and she will be admitted. I put a post on facebook and her phone started ringing. I had to tell everyone to stop calling and let her rest. Almost time to get her TPN ready. Without IV nutrition she would wither away. It really is a 24/7 job taking care of her. I wonder how people handle this when they still have to work a regular job? I keep hoping that the nausea problem would go away. When she feels good she gets up on her feet a little and is back to her normal self. With the nausea, she just suffers and I am powerless to help her.

 

Please let your wife know I

Please let your wife know I am thinking about her - and you of course.

I do work full-time and sometimes even overtime. The one thing in my favor is that I have FMLA. Still is hard to be at work and wonder how he is, miserable because I can't be here all the time for him. But one stress I don't have is losing my job. FMLA is the bes thing they ever did.

 

 

tawie

happytogether said:

Coping

 I am glad you are sharing your feelings. I also am taking care of my husband. People don't understand how much we really take on. We love them so much that we can't leave them but it's a hard time for us as well.

 

Know what really drives me crazy - when someone says "You are so strong. And what a great job you are doing" I know myseslf that I ache every minute of the day because the person I have been married to for 18 years is going to leave me. I know people mean well and I don't let them see what I really think when I am told that. They don't mean to hurt me.

 

I am sorry to hear your wife is so ill.

 

Please know I will keep you in my prayers. It's nice to be in a place where you don't get judged on how you really feel. I def take advantage of all the great people on this page. If I have a bad day I can come here and be judgement-free. Just too bad we couldn't be on a discussion board about the beach or great vacation places.

 

 

 

Coping

There were no symptoms! Wait, you are telling me my husband has 23 brain tumors, lung and thyroid cancer and will die within a year? That was April 24, 2015.  The worst day of my life.

 

Now every day is about death and dying, losing my best friend, how will I survive?  Can I? Do I want to? How can I tell our children that their daddy is dying?  I was 48 and 52 when I lost my parents and that was hard.  How are my 21 and 23 year old supposed to get through this?

 

I'm on leave from my job as a teacher, we have no family in town, will I lose my job after all of this?  Then what?  And yes, I have one teaching partner who likes to tell me how difficult it has been for them while I'm gone.  Guilt trip, guilt trip.  Do they hate me?  I went back to school in August thinking I could work as my son and I took turns caring forvhim.  My son leaves for work at 4 pm so I need to be home. My AP says, wow, some parents are commenting on how you leave school at 3:30 with the students, you may want to reflect on that, you don't want to get a bad reputation.  She knows my situation.  Then there's the question, when will you be returning to work?  Can't you give me an approximate date?  Yeah, when my husband is dead.  

 

How will I support myself on a teacher's salary when my husband goes?  Two jobs?  I'm too old but not old enough.

 

I'm sure they told me that when they radiate his entire brain it will kill the "good" brain cells as well.  I didn't comprehend because what decision was there?  Not treat the 23 tumors?  No way.  Now my intelligent man has dementia.  It's like I have a toddler again.  No, you can't turn on the burners and put wet paper tolls on them.  No please don't go outside in your underware anymore.  No, you can't clean out your ears with a thermometer.  No, please sit down with me, you might fall and break your hip again.  You have to take your meds, please take your meds, I don't want you to have another seizure.

 

Wow, the Petscan showed that the lung and thyroid cancers are shrinking.  Doctor, does that mean he may live longer than a year? Doc says, NO!  but the good news is he won't die earlier.....is that good news?  

 

I called Hospice, oh I need help as I'm an anxious, depressed mess.  Their reply....No, we can't help you while he's still having treatments!

It's October 26, 2015.  We have until April 25, 2016.  Please someone stop time.

cheatinlil

happytogether said:

Please let your wife know I

Please let your wife know I am thinking about her - and you of course.

I do work full-time and sometimes even overtime. The one thing in my favor is that I have FMLA. Still is hard to be at work and wonder how he is, miserable because I can't be here all the time for him. But one stress I don't have is losing my job. FMLA is the bes thing they ever did.

 

 

God bless the people on this

God bless the people on this thread.  I too am a caregiver to my husband. I'm sorry wer are all going through this.  It's nice that we have each other.  This board is not as active as I would like it to be.  Here I am responding to a thread that started over a month ago and the last reply was two weeks ago.  It's hard because when you are at the end of your rope hanging on and need a word of encouragement you have to wait 2 weeks to get it!  I will try and be more active here.  HUGS to you all!

4susie

cheatinlil said:

God bless the people on this

God bless the people on this thread.  I too am a caregiver to my husband. I'm sorry wer are all going through this.  It's nice that we have each other.  This board is not as active as I would like it to be.  Here I am responding to a thread that started over a month ago and the last reply was two weeks ago.  It's hard because when you are at the end of your rope hanging on and need a word of encouragement you have to wait 2 weeks to get it!  I will try and be more active here.  HUGS to you all!

Hugs

it definitely helps to feel a part of a community of caregivers because they know what you're going through.  My wife was diagnosed with terminal Glioblastoma tumor on 9/25.  She was given only a short time to live.  Currently she is at the end stage of life.   Such a roller coaster of emotions.  I am thankful that her period of suffering will be short compared to others.  She is in hospice care and they have been wonderful.   Peace and hugs to all

 

cheatinlil

I'm so sorry you are going

I'm so sorry you are going through this 4suzie.  we are here for you.  you are not alone.  My prayers are with you.

SharonH56

So sorry

I'm so sorry for everyone's pain. My husband has stage 4 melanoma that spread to his lungs. He's going through Immunotherapy and we were happy that up until now he wasn't going through bad side effects. But, the immunotherapy has affected his blood sugar so now he's on diabetes medication. And, his thyroid stopped working so he was put on synthroid. Now he's developed chills, shortness of breath, and full body muscle spasms from the synthroid. He can't sleep, the pain makes him queasy so it's hard to eat, he can't really walk anywhere because he doubles over in spasms. Basically the concensus is "live with it". 

You're right that people don't understand until they go through it. Even family members come up with stupid responses like "hey, do you guys want to go out to dinner with us"? What part of he's nauseous and in pain don't they understand?? As for me, I lost 8 pounds in the past 3 weeks. Not that I can't stand to lose weight, but not this way. Sorry to vent, but this is the only place I can do it where other people understand!!

cheatinlil

SharonH56 said:

So sorry

I'm so sorry for everyone's pain. My husband has stage 4 melanoma that spread to his lungs. He's going through Immunotherapy and we were happy that up until now he wasn't going through bad side effects. But, the immunotherapy has affected his blood sugar so now he's on diabetes medication. And, his thyroid stopped working so he was put on synthroid. Now he's developed chills, shortness of breath, and full body muscle spasms from the synthroid. He can't sleep, the pain makes him queasy so it's hard to eat, he can't really walk anywhere because he doubles over in spasms. Basically the concensus is "live with it". 

You're right that people don't understand until they go through it. Even family members come up with stupid responses like "hey, do you guys want to go out to dinner with us"? What part of he's nauseous and in pain don't they understand?? As for me, I lost 8 pounds in the past 3 weeks. Not that I can't stand to lose weight, but not this way. Sorry to vent, but this is the only place I can do it where other people understand!!

Yes, Sharon,
We should write

Yes, Sharon,

We should write a book called "dumb things people say to cancer patients"  Sorry about the concensus "live with it".  My husband was complaining about fatigue and his Onc said "you will never have the energy you had before the cancer and this may be as good as it gets" UGH!  I just wanted to reply with a HUG and say you are not alone.

SharonH56

cheatinlil said:

Yes, Sharon,
We should write

Yes, Sharon,

We should write a book called "dumb things people say to cancer patients"  Sorry about the concensus "live with it".  My husband was complaining about fatigue and his Onc said "you will never have the energy you had before the cancer and this may be as good as it gets" UGH!  I just wanted to reply with a HUG and say you are not alone.

Thank you

Not that any of us want to be in this position, but it does help to speak with people who understand because they've walked a mile in those same shoes. 

Thank you.