Care giver to husband w/stage IV

Amy K

UncleBuddy said:

Being a caregiver is difficult!

I am a caregiver to my brother with stage 4 rectal cancer and my dad with Alzheimers. Although they don't live in my house, i am at their apartment several times a week to do errands with them and drive them to doctor appointments. This is very time consuming, so I haven't been able to work since my brother's diagnosis. This is causing issues with my husband who thinks I should be working full time. This disease affects the families as well as the patients. The chemo that your husband takes home is probably the 5-FU. My brother was on that as well, but since his heart is weak, he's only on Irinotecan now. I take him for his CT scan tomorrow, so we'll see if it is doing anything. 

You need time to compress. Can anyone stay with him so you can get out sometimes? You can't keep being the victim of your husband's anger. Although it's understandable that he's angry, he should appreciate what you do for him. I would definitely see if the oncologist can talk to him. Maybe he can convince him to see someone or to take antidepressants.

Good luck.

Lin

5-FU

Lin,

You are correct about the 48 hr. take home infusion. It is 5-FU. I asked the oncologist this last treatment. He is taking Avastin/Leukavorin, Oxaliplatin, and a 5-FU push at the treatments each week, and then takes home an additional 5-FU infusion for 48 hrs. I asked the oncologist what his duration of treatment might be and she said it will go on indefinitely. Is everyone else here on Chemo for years on end?? She suggested this is his life until he passes away, though that is not how she put it. This leads me to another question: What does NED stand for? I told the oncologist about his mood swings and she suggested that it is related to the pain medication Hydrocodone.  My husband had his first CT scan about a month ago and his dr. is very happy with the results. He will have another in April. I just can't believe my husband will be on chemo the rest of his life. That sucks!! He is 17 yrs older than I am. He is 73 soon to be 74. I understand he is older, but just to say that he has no hope of ever ending these treatments hit me hard.

-Amy-

Amy K

Daisy13 said:

Sending you all strength and comfort ...

and a suggestion for two books that may be of interest. "Things I Wish I'd Known - Cancer Caregivers Speak Out" and "Things I Wish I'd Known - Cancer and Kids".  I was given both these books when I was caring for my husband who passed from his colorectal cancer in 2013.  Both of these books have practical advice and poignant stories to help you on this journey with your loved one.

My heart aches as I know how challenging this journey can be, day in and day out.  It is a delicate subject to breach but ... please hold precious as you can each day as you never know what the future holds for your loved one.  Remember that their challenges are many times more challenging than you as the caregiver (imo) as they face not only the physical pain and distress but also the extraordinary concerns of their very existence.

Find support for yourself and let go of as much of their anger as you can -- breathe it in and then breathe it out.  It is not your loved one trying to hurt you ... it is their despair and hopelessness.  When they are behaving their worst is likely when they need you the most. Your family's fate may indeed be different than mine, there is every possibility that it will be.

Hold on each of you. Have courage.

Peace. ~ Daisy

Books

Daisy, thank you for the book suggestions. I will look into those! Thanks too for the reminder to try to live each moment as fully as possible with my husband. I know when we were first told about his stage IV cancer, I grieved so hard thinking I don't want to lose my husband!! All I wanted was to get him out of the hospital and back home where I could have him to myself. I have been relying more and more on meditation. Breathing in, I smile. Breathing out, I am whole. Yesterday, during one of my husband's irrational rages I remembered a video I had watched of Thich Nhat Hanh discussing how to handle other peoples rage. I breathed in. I breathed out. I prayed for my husband and kept my mouth shut. I served him his supper and was thankful he was receiving nutrition into his body. This greatly helped me. I did not cry, or even come close to crying. Rather I just loved. I am learning. And I am grateful for these forums. 

-Amy-

 

 

 

 

 

 

Amy K

jen2012 said:

I would try to get him to

I would try to get him to take something.  My husband takes Remeron.  Which is also appetite enhancer and it was helpful in some ways.  I actually prefer my husband to be moody and angry than depressed...that just kills me and I can't find the words to make him feel better.  His biggest sadness is not seeing our three old grow up and I so get it, I can't wrap my mind around that or what I can say to make it easier.

 

 

Jen, he does take Remeron. It is the pill given to him to increase his appetite. The oncologist tried to take it away for about a month but his eating habits took a turn south again so I got it refilled and he is doing better with the eating. While it helps his appetite, he still has his angry outbursts. Still very moody. Hate to see what it would be like without Remeron!

jen2012

Amy K said:

Jen, he does take Remeron. It is the pill given to him to increase his appetite. The oncologist tried to take it away for about a month but his eating habits took a turn south again so I got it refilled and he is doing better with the eating. While it helps his appetite, he still has his angry outbursts. Still very moody. Hate to see what it would be like without Remeron!

Yes mine gets moody and angry

Yes mine gets moody and angry too, but not as sad.  He also takes dilaudid and I'm sure he's addicted.  What caN you do...is what it is.

 

ned means no evidence of disease.  And yes there are others on chemo for life.  My husband too, tho he's had a few little breaks here and there.   It does suck.

Trubrit

Amy K said:

5-FU

Lin,

You are correct about the 48 hr. take home infusion. It is 5-FU. I asked the oncologist this last treatment. He is taking Avastin/Leukavorin, Oxaliplatin, and a 5-FU push at the treatments each week, and then takes home an additional 5-FU infusion for 48 hrs. I asked the oncologist what his duration of treatment might be and she said it will go on indefinitely. Is everyone else here on Chemo for years on end?? She suggested this is his life until he passes away, though that is not how she put it. This leads me to another question: What does NED stand for? I told the oncologist about his mood swings and she suggested that it is related to the pain medication Hydrocodone.  My husband had his first CT scan about a month ago and his dr. is very happy with the results. He will have another in April. I just can't believe my husband will be on chemo the rest of his life. That sucks!! He is 17 yrs older than I am. He is 73 soon to be 74. I understand he is older, but just to say that he has no hope of ever ending these treatments hit me hard.

-Amy-

NED = No evidence of disease

They are wonderful words to hear, if only for a few months at a time. 

I was NED for a while after my treatment, but then a met to the liver put me back again. I have recently heard those words again, but it is with trepidation that I live with them. One month at a time. 

There are  several here who are on chemo for life.  They have or are learning to live with it, as it means just that 'life'. Sometimes though, one has to weigh up the quality of that life. The desire to live can make you suffer through much, but for some, there comes a time when they have said enough. 

It  is such a hard and personal decision. 

I am sorry that your husband is at this stage. I pray that relief will come for his mood swings, as it will make for a long life if he cannot find a way to control his anger. Did his Doctor suggest or lessen his dosage of Hydrocodone?  

I am glad that you are finding this forum a comfort. Keep up with the meditation, that, and your calm response to your husbands moods may be a great help to him. 

Blessings to all. 

Sue - Trubrit

 

UncleBuddy

Amy K said:

Books

Daisy, thank you for the book suggestions. I will look into those! Thanks too for the reminder to try to live each moment as fully as possible with my husband. I know when we were first told about his stage IV cancer, I grieved so hard thinking I don't want to lose my husband!! All I wanted was to get him out of the hospital and back home where I could have him to myself. I have been relying more and more on meditation. Breathing in, I smile. Breathing out, I am whole. Yesterday, during one of my husband's irrational rages I remembered a video I had watched of Thich Nhat Hanh discussing how to handle other peoples rage. I breathed in. I breathed out. I prayed for my husband and kept my mouth shut. I served him his supper and was thankful he was receiving nutrition into his body. This greatly helped me. I did not cry, or even come close to crying. Rather I just loved. I am learning. And I am grateful for these forums. 

-Amy-

 

 

 

 

 

 

Hi Amy

My heart breaks for you. Maybe you can look into getting some sort of aide in there to give you a break. My situation is different because it's my brother. I moved him and my dad closer to me so I can help them. Dad has early stage lzheimer and my brother is stage 4 rectal cancer with mets to liver and lungs. He is on palliative care to keep him comfortable. He will be on chemo for the rest of his life (he is only 50). He has no chance of surgery because he has heart issues that prevent him from getting any surgery. He was on a cocktail of chemo which included 5-FU but his heart can't take it, so they only have him on Irinotecan alone. So far it is keeping the tumors from growing more, which gives him more time with us. We just enjoy each day and don't focus on the cancer. I go there several times a week to take them shopping, help with meds and do doctor runs. Between the two of them, I run from dr to dr. I haven't been able to work because this keeps me very busy. My husband is not happy about me being home, but I have to do what I have to do. Dad doesn't drive anymore and my brother is intellectually disabled. so I need to go with them to their appointments. My brother is even keeled, but dad's Alzheimer's is making him nasty, and he is not a nasty person. It's hard to deal with the verbal abuse. I know it's not his fault, but it does bother me. I have gotten a nurse to go in there 2x a week to check on them and I hired a cleaning woman to keep their apartment clean. I had to make sure my brother was monitored because he has been hospitalized in the past witth fluid around the heart and clots in the lungs. This nurse is a friend of the family, so he knows what to look for. It's a difficult journey, but I am here for the ride.

God bless you for caring so much and being there for your husband through all of this. It's not easy. I hope you're able to get some help.

Lin

Yolllmbs

UncleBuddy said:

Hi Amy

My heart breaks for you. Maybe you can look into getting some sort of aide in there to give you a break. My situation is different because it's my brother. I moved him and my dad closer to me so I can help them. Dad has early stage lzheimer and my brother is stage 4 rectal cancer with mets to liver and lungs. He is on palliative care to keep him comfortable. He will be on chemo for the rest of his life (he is only 50). He has no chance of surgery because he has heart issues that prevent him from getting any surgery. He was on a cocktail of chemo which included 5-FU but his heart can't take it, so they only have him on Irinotecan alone. So far it is keeping the tumors from growing more, which gives him more time with us. We just enjoy each day and don't focus on the cancer. I go there several times a week to take them shopping, help with meds and do doctor runs. Between the two of them, I run from dr to dr. I haven't been able to work because this keeps me very busy. My husband is not happy about me being home, but I have to do what I have to do. Dad doesn't drive anymore and my brother is intellectually disabled. so I need to go with them to their appointments. My brother is even keeled, but dad's Alzheimer's is making him nasty, and he is not a nasty person. It's hard to deal with the verbal abuse. I know it's not his fault, but it does bother me. I have gotten a nurse to go in there 2x a week to check on them and I hired a cleaning woman to keep their apartment clean. I had to make sure my brother was monitored because he has been hospitalized in the past witth fluid around the heart and clots in the lungs. This nurse is a friend of the family, so he knows what to look for. It's a difficult journey, but I am here for the ride.

God bless you for caring so much and being there for your husband through all of this. It's not easy. I hope you're able to get some help.

Lin

Hi Amy,

I was a caregiver before I was diagnosed with Stage 3 Colon Cancer.  My mother in law had ovarian cancer that spread throughout her body.  She was a rock.  She made decisions that allowed her to stay in control of her life.  My husband lost both of his parents and his brother right as I was diagnosed.  He was the one who felt angry.  He wasn't sure who to be angy with but he was mad.  It really is tough when we really don't have anyone to "blame".  I finally got him to start thinking about the experiences he had with everyone.  He started being happy for what he had instead of what he no longer had.  He's having a tougher time with me.  I was told NED but I go back March 10 for the first round of yearly check ups.  He's quite nervous.  He tends to get quiet.  I've just planned tons and tons of honey do's to keep him busy.  I with you luck.  I think it's actually harder to be the caregiver.

 

Yolanda