Caregiver

patriciamariechristie

I have been taking care of my husband for ten years. He has non hodgkins lymphoma. Chemo destroyed his heart's pumping capacity to 20%. He has trouble breathing. He only eats small amounts of food. Now the lymphoma is growing. His abdomen is huge. He has had two hernia operations in five months. The lymphoma is pushing on his intestines and kidneys.


He lashes out at me. I am his caregiver. I do almost everything. He complains. He never says thank you. It is rough. My family is 3000 miles away.


How long will his abdomen continue to grow? What will happen? Why can't he be nicer to me?

winthefight

Your hubby
Hello,

Your husband is lashing out because of his condition and treatment. As survivors, we tend to change emotionally. I am so sorry he is hurting you emotionally. The question of how long will his abd continue to grow is something you should discuss with your Oncologist. It is a question only a doctor can answer. It may be a good idea to get a second opinion to ease your mind. Seeking a caregiver support group may also be a great idea. I have found that support groups can not only provide the love and support that you need as a caregiver, it can also be a wealth of resources.

One of the resources here is the chatroom. I don't know where I would be had I not found the survivors and caregivers here. There are caregivers there that may be able to help you. They/we will all be there to cheer you up/on and love you. We are there for you.

The ACS is also an excellent resource. The great thing about the ACS is you can call them 24/7. So if you need someone to talk to or if you have questions at 3am. There is someone to contact at that time.

Sorry I could not provide the medical answers you want. But prayerfully these resources will help. Just also keep in mind....Prayers does wonders and can change things....just believe.

Be blessed.

patriciamariechristie

winthefight said:

Your hubby
Hello,

Your husband is lashing out because of his condition and treatment. As survivors, we tend to change emotionally. I am so sorry he is hurting you emotionally. The question of how long will his abd continue to grow is something you should discuss with your Oncologist. It is a question only a doctor can answer. It may be a good idea to get a second opinion to ease your mind. Seeking a caregiver support group may also be a great idea. I have found that support groups can not only provide the love and support that you need as a caregiver, it can also be a wealth of resources.

One of the resources here is the chatroom. I don't know where I would be had I not found the survivors and caregivers here. There are caregivers there that may be able to help you. They/we will all be there to cheer you up/on and love you. We are there for you.

The ACS is also an excellent resource. The great thing about the ACS is you can call them 24/7. So if you need someone to talk to or if you have questions at 3am. There is someone to contact at that time.

Sorry I could not provide the medical answers you want. But prayerfully these resources will help. Just also keep in mind....Prayers does wonders and can change things....just believe.

Be blessed.

thank you, winthefight
Your words were so welcomed. Why do cancer survivors change emotionally?

I look forward to your insights. Thanks for the kind words.

I will prayer harder.

Pat Christie

slickwilly

patriciamariechristie said:

thank you, winthefight
Your words were so welcomed. Why do cancer survivors change emotionally?

I look forward to your insights. Thanks for the kind words.

I will prayer harder.

Pat Christie

Emotional changes
Hi Pat. I am sorry for what you and your husband are going through. I had NHL 5 years ago. The emotional changes can be related to many things. First of all is pain that leads to frustration and then anger. As your proubly the closest person he lashes out at you. Some pain drugs cause changes that we are not even aware of. Loss of memory and a non caring attitude to name a couple. I suffered from both and changed drugs. If your husband worked most of his life and did things around the home it is quite frustrating when we just lay around and someone has to take care of us. It can take months to adjust to not working when you have been doing it your whole life. We know we can't change what is happening and so many things are out of our control. We sometimes feel we are a drain on our spouse and things would be much easier for them if we were not around. Sometimes we need a kick to remind us that we are not just fighting cancer for ourselves. We are trying to beat cancer for all of those that love and care about us. After we survive cancer many of us have side effects from the treatment for the rest of our lives. Memory loss, joints that ache, parts of our bodies that feel numb or don't function well. In my case I ended up on disability as my spine fell apart at my neck. 25 radiation treatments to the head proubly didn't help it. So the emotional toll on someone dealing with or surviving cancer can be quite large. Sometimes changing everything about our lives before cancer. I hope this answered a few of your questions. Slickwilly

patriciamariechristie

slickwilly said:

Emotional changes
Hi Pat. I am sorry for what you and your husband are going through. I had NHL 5 years ago. The emotional changes can be related to many things. First of all is pain that leads to frustration and then anger. As your proubly the closest person he lashes out at you. Some pain drugs cause changes that we are not even aware of. Loss of memory and a non caring attitude to name a couple. I suffered from both and changed drugs. If your husband worked most of his life and did things around the home it is quite frustrating when we just lay around and someone has to take care of us. It can take months to adjust to not working when you have been doing it your whole life. We know we can't change what is happening and so many things are out of our control. We sometimes feel we are a drain on our spouse and things would be much easier for them if we were not around. Sometimes we need a kick to remind us that we are not just fighting cancer for ourselves. We are trying to beat cancer for all of those that love and care about us. After we survive cancer many of us have side effects from the treatment for the rest of our lives. Memory loss, joints that ache, parts of our bodies that feel numb or don't function well. In my case I ended up on disability as my spine fell apart at my neck. 25 radiation treatments to the head proubly didn't help it. So the emotional toll on someone dealing with or surviving cancer can be quite large. Sometimes changing everything about our lives before cancer. I hope this answered a few of your questions. Slickwilly

caregiver reply to slickwilly
Dear Slickwilly,

You hit the nail on the head. I read your response to my husband. It was like your words had come out of his mouth.

You will never know how much you helped me and my husband.

I will try to understand as best as I can. I think God wants me to learn compassion and understanding.

It is not easy, and I am tired...but I will try my best.

Thanks
Pat Christie

slickwilly

patriciamariechristie said:

caregiver reply to slickwilly
Dear Slickwilly,

You hit the nail on the head. I read your response to my husband. It was like your words had come out of his mouth.

You will never know how much you helped me and my husband.

I will try to understand as best as I can. I think God wants me to learn compassion and understanding.

It is not easy, and I am tired...but I will try my best.

Thanks
Pat Christie

Hi Pat
Pat. I doubt you have to learn compassion and understanding. You have stayed with your husband through a long battle and no doubt need a break. I hope there is someone that will allow you to get some time for yourself each week. A caregiver needs time to get away and recharge. I hope your oncologist is able to answer some of your questions. Don't be afraid to make phone calls and drive them crazy. Many of us would not be here if we had not constantly pushed our doctors and oncologists to move forward with our treatments faster. Its easy for our medical file to be put at the bottom of a pile when there are thousands of people dealing with cancer. We are here to support you and your husband so keep in touch. You will be in my prayers. Bless you Slickwilly

patriciamariechristie

slickwilly said:

Hi Pat
Pat. I doubt you have to learn compassion and understanding. You have stayed with your husband through a long battle and no doubt need a break. I hope there is someone that will allow you to get some time for yourself each week. A caregiver needs time to get away and recharge. I hope your oncologist is able to answer some of your questions. Don't be afraid to make phone calls and drive them crazy. Many of us would not be here if we had not constantly pushed our doctors and oncologists to move forward with our treatments faster. Its easy for our medical file to be put at the bottom of a pile when there are thousands of people dealing with cancer. We are here to support you and your husband so keep in touch. You will be in my prayers. Bless you Slickwilly

slickwilly
Thanks Slickwilly
I do need a break. Today my husband drove himself to a dermatology appointment and smashed and destroyed our neighbor's brick mailbox with a ceramic pineapple on top. His airbags both inflated. No one was hurt.

We see the oncologist next week. I will press him for answers.

My husband doesn't feel well.

Thanks for the vote of confidence in my compassion and understanding.

I appreciate the prayers.

Pat Christie

slickwilly

patriciamariechristie said:

slickwilly
Thanks Slickwilly
I do need a break. Today my husband drove himself to a dermatology appointment and smashed and destroyed our neighbor's brick mailbox with a ceramic pineapple on top. His airbags both inflated. No one was hurt.

We see the oncologist next week. I will press him for answers.

My husband doesn't feel well.

Thanks for the vote of confidence in my compassion and understanding.

I appreciate the prayers.

Pat Christie

Car wreck
Pat. I guess sometimes we just get into a run of bad luck. Or we take too many pain killers and think we can still drive. Before I quit working I was in a lot of pain. I would take Oxycondone, Motrin 800 and flexeril and drive off to work. Proubly not the smartest thing I ever did and it was amazing I stayed awake all night. I finally burnt myself out between fighting pain and trying to work and ended up on disability. I am glad your husband was not hurt and I hope the neighbor is not too upset about his mailbox. And you sure didn't need the added stress in your life. I guess you can now dump on him about male drivers versus female drivers. I sure hope you get a break soon! Slickwilly

patriciamariechristie

slickwilly said:

Car wreck
Pat. I guess sometimes we just get into a run of bad luck. Or we take too many pain killers and think we can still drive. Before I quit working I was in a lot of pain. I would take Oxycondone, Motrin 800 and flexeril and drive off to work. Proubly not the smartest thing I ever did and it was amazing I stayed awake all night. I finally burnt myself out between fighting pain and trying to work and ended up on disability. I am glad your husband was not hurt and I hope the neighbor is not too upset about his mailbox. And you sure didn't need the added stress in your life. I guess you can now dump on him about male drivers versus female drivers. I sure hope you get a break soon! Slickwilly

Better day to Slickwilly
Dear Slickwilly,

I had a much better day today. The neighbor put up a post with a black metal mailbox today. The brick destroyed one remains. The adjustor said my husband's car is totaled. The damage was over $9000.

I can't dump on him about his driving. He looks very sick. I bit my tongue. Quite hard in fact.

Slickwilly, do you have a lot of pain now? Would it bother you if someone asked you all day how do you feel?

Thanks,
Pat

slickwilly

patriciamariechristie said:

Better day to Slickwilly
Dear Slickwilly,

I had a much better day today. The neighbor put up a post with a black metal mailbox today. The brick destroyed one remains. The adjustor said my husband's car is totaled. The damage was over $9000.

I can't dump on him about his driving. He looks very sick. I bit my tongue. Quite hard in fact.

Slickwilly, do you have a lot of pain now? Would it bother you if someone asked you all day how do you feel?

Thanks,
Pat

Pain
Hi Pat. To answer your question, yes I still deal with pain on a daily basis. I have a small benign brain tumor, half my face has nerve damage. I have half my saliva glands, taste buds and working sinus. After my cancer I continued working until my spine was full of arthritis and falling apart. Nerves are getting pinched off so I deal with pain daily that can go into migraines with the longest lasting 8 days. Please don't feel sorry for me as I have learned to deal with the pain and my life over the last couple years. If I don't get stupid and do things like pushing a lawn mower or shoveling snow it helps. But sometimes I still tend to push my limits as I need a sense of accomplishment. I help others in my area that are dealing with cancer and still try to live as full a life as possible.
I would just ask your husband how he is feeling after he is up for a while in the morning. After that I would gage his pain by the drugs he is taking and would not keep asking. One way to do this is by getting a desk calendar and writing down each drug that is taken and at what time. Along with Dr appointments ect. When we are in pain and taking drugs its easy to forget you just took a pill. Chemo and drugs cause our memory to go out the window. Its easy to forget that you put something on the stove. And I have heard of people that were driving and forgot how to get home. Its like our brain locks doors that we cannot get open and we have to sit and think about it for a while. Its quite frustrating. I suspect your husband is dealing with a lot of issues that he is not telling you about. Its quite common for people that are dealing with cancer to push others away. Keep trying to understand and open the lines of communication. Remember that your doing nothing wrong as each situation is different. A person fighting cancer goes through constant medical and mental changes and I don't think anyone can keep up. Just do the best you can and keep asking all the questions you want. I am not a doctor and would never claim to know everything about cancer. But I will try to give you some ideas as I would hope others on this site would. I hope you a good day. Slickwilly

patriciamariechristie

slickwilly said:

Pain
Hi Pat. To answer your question, yes I still deal with pain on a daily basis. I have a small benign brain tumor, half my face has nerve damage. I have half my saliva glands, taste buds and working sinus. After my cancer I continued working until my spine was full of arthritis and falling apart. Nerves are getting pinched off so I deal with pain daily that can go into migraines with the longest lasting 8 days. Please don't feel sorry for me as I have learned to deal with the pain and my life over the last couple years. If I don't get stupid and do things like pushing a lawn mower or shoveling snow it helps. But sometimes I still tend to push my limits as I need a sense of accomplishment. I help others in my area that are dealing with cancer and still try to live as full a life as possible.
I would just ask your husband how he is feeling after he is up for a while in the morning. After that I would gage his pain by the drugs he is taking and would not keep asking. One way to do this is by getting a desk calendar and writing down each drug that is taken and at what time. Along with Dr appointments ect. When we are in pain and taking drugs its easy to forget you just took a pill. Chemo and drugs cause our memory to go out the window. Its easy to forget that you put something on the stove. And I have heard of people that were driving and forgot how to get home. Its like our brain locks doors that we cannot get open and we have to sit and think about it for a while. Its quite frustrating. I suspect your husband is dealing with a lot of issues that he is not telling you about. Its quite common for people that are dealing with cancer to push others away. Keep trying to understand and open the lines of communication. Remember that your doing nothing wrong as each situation is different. A person fighting cancer goes through constant medical and mental changes and I don't think anyone can keep up. Just do the best you can and keep asking all the questions you want. I am not a doctor and would never claim to know everything about cancer. But I will try to give you some ideas as I would hope others on this site would. I hope you a good day. Slickwilly

Thanks Slick Willy
I will ask him after he has been up for awhile. That is a good idea...because his mind is fuzzy in the morning.

He doesn't sleep well at night. He can't breath.

Tonight, I wanted to cook. I started and my husband (who usually does all the cooking) got upset. I stood my ground and insisted. He said I won't eat it.

That's ok, it was one of my favorite recipes, stuffed cabbage, so I cooked it. After, I thought well maybe I should have let him do it. But, I get sick of giving in. So, each situation is different. I will work more on communication.


Thanks for you help.

Pat

slickwilly

patriciamariechristie said:

Thanks Slick Willy
I will ask him after he has been up for awhile. That is a good idea...because his mind is fuzzy in the morning.

He doesn't sleep well at night. He can't breath.

Tonight, I wanted to cook. I started and my husband (who usually does all the cooking) got upset. I stood my ground and insisted. He said I won't eat it.

That's ok, it was one of my favorite recipes, stuffed cabbage, so I cooked it. After, I thought well maybe I should have let him do it. But, I get sick of giving in. So, each situation is different. I will work more on communication.


Thanks for you help.

Pat

Balance
Hi Pat. It seems to always be a struggle finding a balance when we take care of someone. Your not alone in this. My neighbor who I help just had chemo, felt real good and thought she would get right into cleaning her home. Well her legs loaded up with water so she is now depressed and sitting in a chair where she should of been right after a chemo treatment.
As your husband is having problems in his stomach area he might also be having problems with digestion and using the bathroom. And again he might not be telling you! So although cabbage rolls would be great for me or you, they might cause him some problems. Or he is just wanting to do something to feel useful. Either way it seems he is hard to work with as he is not telling you his needs. Anyway you sure got me thinking of cabbage rolls and I applaud your cooking skills. Slickwilly