Caregiver Burnout

Bobshope

I am new at this so please be paitent. My wife was diagnosed with stage4 breast cancer in 2006. She has been the love of my life for over 40 years and now I have reached a stage in her care that has thrown me for a loop. I find myself angry,depressed and with very little paitance. I know I am not angry at her but the fact is I feel burnt out. I know I am not alone in my feelings, so let me know how you are handling this situation, as I am desperatly looking for help.

Thanks

Bobshope

david54

Hello Bobshope
I totally
Hello Bobshope

I totally understand your feelings of “burnout.” It feels like a never-ending journey.
All I can say is try to do the things you enjoy, from music, exercise, writing, anything that can offer you comfort is helpful. From clergyman, to social worker, cancer support volunteer, to give you some respite care. I am fortunate in that I have siblings who are supportive and don’t mind listening. For me it is important to be able to vent, not necessarily wanting advice, but just to be heard without an opinion is all I often need. I have found this network very supportive, I can “Vent” and that helps a lot.
I want to go out on a limb here, its okay to feel angry at your wife. That does not mean you don’t love her. It means you are human with feelings.

Bobshope

david54 said:

Hello Bobshope
I totally
Hello Bobshope

I totally understand your feelings of “burnout.” It feels like a never-ending journey.
All I can say is try to do the things you enjoy, from music, exercise, writing, anything that can offer you comfort is helpful. From clergyman, to social worker, cancer support volunteer, to give you some respite care. I am fortunate in that I have siblings who are supportive and don’t mind listening. For me it is important to be able to vent, not necessarily wanting advice, but just to be heard without an opinion is all I often need. I have found this network very supportive, I can “Vent” and that helps a lot.
I want to go out on a limb here, its okay to feel angry at your wife. That does not mean you don’t love her. It means you are human with feelings.

Thanks for the reply
I know I could never be angry with my wife for this cancer. I feel I am more frustrated with myself as I am use to acomplishing anything I put my mind to. I have studied and researched and find myself frustrated not being able to find something to help stop the cancer growth.
I guess the main thing is I feel I am running out of time. Thanks for letting me vent.

Bobshope

Reddie

Bobshope said:

Thanks for the reply
I know I could never be angry with my wife for this cancer. I feel I am more frustrated with myself as I am use to acomplishing anything I put my mind to. I have studied and researched and find myself frustrated not being able to find something to help stop the cancer growth.
I guess the main thing is I feel I am running out of time. Thanks for letting me vent.

Bobshope

feel frustrated
I can understand how you're feeling about this situation. My Dad can't handle with the emotions and dealing with his wife and me who have been going through cancer. He's feeling overwhelmed about all this. I can see in his eyes that he's frustrated without telling me in words and it makes me cry and telling him that it's not my fault. I was telling him that all I need is a hug from him that will make me feel better. He finally hugged me and said "I love you" which is important to know. You can express your wife how much you love her and cared even thou you're burnout. Maybe you can take her to go someplace peaceful and have fun like going to the beach or to the garden for a surprise.

Reddie

AnneS

Dear Bob,
I am my mother's
Dear Bob,

I am my mother's caregiver (69, advanced cancer, multiple other problems), no siblings, family. I too am burnt out. I optimistically thought I would be able to swing this, but I get so little sleep now, that I am clumsy, cannot think straight etc.

Another day at the emergency room, and I am wiped.

David talked about the importance of being able to vent: I so agree. And this is also why I have started coming here, because I know there are people here who are going through the same process. What I find so draining is whenever I have tried to talk to friends about all of this. I find that they pull out a list of 'great advices' I know they mean well, but it is just annoying, when you have had yet another sleepless night because mum was restless, in pain etc etc.

I have decided that I need to get some more help in, or I just won't be able to manage. We have had nurses coming in to wash my mum and change her fistula bandage, but because she has had such a terrible week, timing has invariably been off when they came around.

Sorry BOb, if this isn't making much sense. But right now I feel pretty lost myself.

Anne

Bobshope

AnneS said:

Dear Bob,
I am my mother's
Dear Bob,

I am my mother's caregiver (69, advanced cancer, multiple other problems), no siblings, family. I too am burnt out. I optimistically thought I would be able to swing this, but I get so little sleep now, that I am clumsy, cannot think straight etc.

Another day at the emergency room, and I am wiped.

David talked about the importance of being able to vent: I so agree. And this is also why I have started coming here, because I know there are people here who are going through the same process. What I find so draining is whenever I have tried to talk to friends about all of this. I find that they pull out a list of 'great advices' I know they mean well, but it is just annoying, when you have had yet another sleepless night because mum was restless, in pain etc etc.

I have decided that I need to get some more help in, or I just won't be able to manage. We have had nurses coming in to wash my mum and change her fistula bandage, but because she has had such a terrible week, timing has invariably been off when they came around.

Sorry BOb, if this isn't making much sense. But right now I feel pretty lost myself.

Anne

Thanks for the reply
I know you must be a very caring person that even with the struggles you are going through you have enough strength to care about my problems. I had mentioned to one of my friends that
I had suffered from PTSD from my service years in Vietnam. The symptoms are very much alike, the depression, frustration, loneliness that lost feeling, regretting the next day and feeling angry for having those feelings. It took me a number of years to get through that period and alot of psychological help along the way. I feel I am older and wiser as I didn't know what was happening to me and how to cope. I am reaching out for help by this media and opening up and taking or venting, which in my prior experience I shut down and it nearly destroyed me. I knew I was having problems accepting my role and being smart enough to understand it was beyond my power to cure my wife’s cancer. I has been almost 3 years and the prognosis was only 20% to make it 5. I feel that is the leading reason for my frustration/fear and how I will be able to handle the end when it comes. I know how much my wife wants to live and I can't do anything except be there for her. Alot of people would say that is all you can do, but easier to say that do. I was reading about "Caregivers Burnout" which I was surprised they had a name for and how many places speak of this problem, but when our journey started Kaiser never mentioned this might become a problem not just the cancer. Anyway Anne take care and do get some rest as you have your life and health. Use all the outside resources you can. I take it your in England by your accent? Do you have hospice there? Take care and thanks for listening.

Bobshope

Bobshope

Reddie said:

feel frustrated
I can understand how you're feeling about this situation. My Dad can't handle with the emotions and dealing with his wife and me who have been going through cancer. He's feeling overwhelmed about all this. I can see in his eyes that he's frustrated without telling me in words and it makes me cry and telling him that it's not my fault. I was telling him that all I need is a hug from him that will make me feel better. He finally hugged me and said "I love you" which is important to know. You can express your wife how much you love her and cared even thou you're burnout. Maybe you can take her to go someplace peaceful and have fun like going to the beach or to the garden for a surprise.

Reddie

Hi Reddie
I can understand what your dad is experiencing. But I have to say having his wife and you both having cancer has to be extremely frustrating in every sense. Currently my wife gets chemo ever week for the next 4 months. The week in-between she is extremely tired and non functional. She prefers to be out in our yard reading on the patio taking naps when she needs too. I gone to calling her a "Patio Lizard", it makes her laugh and now she answers the phone that way when I call. Thanks for the advice and I do tell my wife everyday how much I love her. Take care be strong, thanks for listening and get better.

Bobshope

angelsbaby

Bobshope said:

Thanks for the reply
I know you must be a very caring person that even with the struggles you are going through you have enough strength to care about my problems. I had mentioned to one of my friends that
I had suffered from PTSD from my service years in Vietnam. The symptoms are very much alike, the depression, frustration, loneliness that lost feeling, regretting the next day and feeling angry for having those feelings. It took me a number of years to get through that period and alot of psychological help along the way. I feel I am older and wiser as I didn't know what was happening to me and how to cope. I am reaching out for help by this media and opening up and taking or venting, which in my prior experience I shut down and it nearly destroyed me. I knew I was having problems accepting my role and being smart enough to understand it was beyond my power to cure my wife’s cancer. I has been almost 3 years and the prognosis was only 20% to make it 5. I feel that is the leading reason for my frustration/fear and how I will be able to handle the end when it comes. I know how much my wife wants to live and I can't do anything except be there for her. Alot of people would say that is all you can do, but easier to say that do. I was reading about "Caregivers Burnout" which I was surprised they had a name for and how many places speak of this problem, but when our journey started Kaiser never mentioned this might become a problem not just the cancer. Anyway Anne take care and do get some rest as you have your life and health. Use all the outside resources you can. I take it your in England by your accent? Do you have hospice there? Take care and thanks for listening.

Bobshope

Bobshope
I am sorry that your wife is very ill. I was my husbands caregiver Nov 07 Colon cancer chemo spread more chemo to many tumors it was bad he had the bag in jan and went down hill from there. I was always scared and mad to taking care of a loved one is so hard and when you know they are losing the battle it is even worse because we can;t help them. I had so many different emotions from the beginning to the end and he died april 16th 09 so now its been two months since i lost my husband of 35 yrs he was 53. Now i am on another emotional path and this is the hardest by far i miss him so much, We did have hospice at home for fluids and such but i took care of him mostly. They are a god send . Take care, We do find the strength to go on when it comes to our loved one hang in there and i know she loves you so much for taking care of her ..michelle

AnneS

Bobshope said:

Thanks for the reply
I know you must be a very caring person that even with the struggles you are going through you have enough strength to care about my problems. I had mentioned to one of my friends that
I had suffered from PTSD from my service years in Vietnam. The symptoms are very much alike, the depression, frustration, loneliness that lost feeling, regretting the next day and feeling angry for having those feelings. It took me a number of years to get through that period and alot of psychological help along the way. I feel I am older and wiser as I didn't know what was happening to me and how to cope. I am reaching out for help by this media and opening up and taking or venting, which in my prior experience I shut down and it nearly destroyed me. I knew I was having problems accepting my role and being smart enough to understand it was beyond my power to cure my wife’s cancer. I has been almost 3 years and the prognosis was only 20% to make it 5. I feel that is the leading reason for my frustration/fear and how I will be able to handle the end when it comes. I know how much my wife wants to live and I can't do anything except be there for her. Alot of people would say that is all you can do, but easier to say that do. I was reading about "Caregivers Burnout" which I was surprised they had a name for and how many places speak of this problem, but when our journey started Kaiser never mentioned this might become a problem not just the cancer. Anyway Anne take care and do get some rest as you have your life and health. Use all the outside resources you can. I take it your in England by your accent? Do you have hospice there? Take care and thanks for listening.

Bobshope

Dear Bob,
Thank you for your
Dear Bob,

Thank you for your sweet post.

I agree: the feeling of total lack of control is overwhelming. This is probably what I am struggling with the most myself. It doesn't matter how I play these cards... I never seem to land the ace.

Yes quite true: noone talks about Caregiver's burnout. When I returned from ten hours at the hospital (my mum has been readmitted, they have to do emergency surgery on her or she will bleed to death), there was a bouquet of flowers for her on my door step. No hello to me etc. And it just made me furious: I was like: THANKS, another thing for me to go do: find vase, fill w water etc etc. And not even a hello. I obviously felt awfully ungrateful afterwards... I KNOW people mean well.

I myself find it hard to reach out/vent. Mostly because I am extraordinarily tired of getting heaps of unsollicited advice, when all I really wanted to do was to say 'hey, I had a **** day'.

I am actually Danish, but work in the England (not now though as I am looking after mum), and we are currently in Belgium:)

It must have been a very tough experience being in Vietnam Bob. Did you ever return as a tourist? I have traveled there pretty extensively (I am a bit of a South East Asia fan). I recently watch 'The Quiet American' and it reminded me of reading the novel as I was sitting in Saigon.

Bob, I don't know how to handle that end either when it comes. Feel free to keep in touch. I'll shoot you a PM.

Anne

AnneS

angelsbaby said:

Bobshope
I am sorry that your wife is very ill. I was my husbands caregiver Nov 07 Colon cancer chemo spread more chemo to many tumors it was bad he had the bag in jan and went down hill from there. I was always scared and mad to taking care of a loved one is so hard and when you know they are losing the battle it is even worse because we can;t help them. I had so many different emotions from the beginning to the end and he died april 16th 09 so now its been two months since i lost my husband of 35 yrs he was 53. Now i am on another emotional path and this is the hardest by far i miss him so much, We did have hospice at home for fluids and such but i took care of him mostly. They are a god send . Take care, We do find the strength to go on when it comes to our loved one hang in there and i know she loves you so much for taking care of her ..michelle

Hi Michelle,
Your story
Hi Michelle,

Your story really touched me. I am very sorry for your loss (tried to reply yesterday but the system kept freezing up on me).

Anne

seaboy

Burnout
Bobshope, I am caring for my wife with stage 4 BC too. The frustration of cancer taking charge of our lives, dictating not just the time remaining but the every day little details can be overwhelming. Some how at least in our experience the oncologists don't help much other than to dispense meds. A good resource is bcmets.org. Just metestatic breast cancer patients. A ton of information. It hasn't really effected the treatment choices we have made, but we have yet to come up with a side effect or a concern that hasn't been addressed there by someone else. Good luck. Prayers.

SmileyJane

Dear friend,
I understand
Dear friend,
I understand how you are feeling. My husband is metastatic melanoma which is spreading like wild fire and has now reached his brain. We interupted the chemo to start whole brain radiation. I am tired, scared, angry at the world, and frustrated. His orignial dx was in 2005 and the metatastasis occurred in Sept. He was close to death in Feb. and hung on enough to start carbo taxol. He has had good response from this chemo, but we learned (by accident) that he now has brain mets. The first scan showed 3 tumors and the final count was 14. He is half way through WBR and sick as a dog. He has brain swelling, N & V. I am home for the summer as I teach school. I have 2 kids at home 10 & 15, one in college, and one married.I feel very alone. No one wants to hear how you really feel. They can't handle it. Everything in our life has changed and probably will never be the same again. It is hard to handle. I am a Christian, yet find the "You're in my prayers answer aggravating.

angelsbaby

AnneS said:

Hi Michelle,
Your story
Hi Michelle,

Your story really touched me. I am very sorry for your loss (tried to reply yesterday but the system kept freezing up on me).

Anne

anne
thank you

michelle

akbetty

Burnout
hello Bob and Others,
I have also been experiencing burnout for the past few months. My husband was diagnosed with stage four lung cancer two years ago. Sometimes I am so tired of the stress, worry, and exhaustion, that I just want to run away from home. Then I feel incredibly guilty because I know I don't have that much time with my husband left, and I want to take the best care of him that I possibly can. Recently, after some disappointing test results, the doctor told me to expect things to get much harder, and I just thought, how can I cope with more? I guess what keeps me going is focusing on the times when my husband is happy and not in too much pain. Then I feel I can get through the bad days. Coming here and talking to others who understand has been a big help to me. I hope it helps you too.

Bobshope

AnneS said:

Dear Bob,
I am my mother's
Dear Bob,

I am my mother's caregiver (69, advanced cancer, multiple other problems), no siblings, family. I too am burnt out. I optimistically thought I would be able to swing this, but I get so little sleep now, that I am clumsy, cannot think straight etc.

Another day at the emergency room, and I am wiped.

David talked about the importance of being able to vent: I so agree. And this is also why I have started coming here, because I know there are people here who are going through the same process. What I find so draining is whenever I have tried to talk to friends about all of this. I find that they pull out a list of 'great advices' I know they mean well, but it is just annoying, when you have had yet another sleepless night because mum was restless, in pain etc etc.

I have decided that I need to get some more help in, or I just won't be able to manage. We have had nurses coming in to wash my mum and change her fistula bandage, but because she has had such a terrible week, timing has invariably been off when they came around.

Sorry BOb, if this isn't making much sense. But right now I feel pretty lost myself.

Anne

Thanks Again
Hi Anne:

I know dealing with this is more than we think we can handle sometimes.I feel the frustration in your messege and totally agree. This week was Fathers day and even then with my kids around me I felt alone and distant. I didn't want to think or be part of the group. We had always been a close family but now I feel segregated unable to communicate with my children.
I told my wife that I feel like I just exist as a servent, which in turn make her feel guilty.
My wife and I had always been able to express our feeling towards each other and now at times I even fear to glance at her as not to show my inability to hanle this situation. Anne try to be stong because at the end you and you alone will understand what you did for your Mum.
It is little consulation but when my mother was in the hospital dieing of a car accicent I made the state ment that she had given me 45 years of joy and the least I could do was help
her with the passing. It only took a month but it did not prepair me for this mission. Take care and speak to you soon.

Bobshope

Bobshope

seaboy said:

Burnout
Bobshope, I am caring for my wife with stage 4 BC too. The frustration of cancer taking charge of our lives, dictating not just the time remaining but the every day little details can be overwhelming. Some how at least in our experience the oncologists don't help much other than to dispense meds. A good resource is bcmets.org. Just metestatic breast cancer patients. A ton of information. It hasn't really effected the treatment choices we have made, but we have yet to come up with a side effect or a concern that hasn't been addressed there by someone else. Good luck. Prayers.

Thanks Seaboy
Thanks for the info and any info from this group has helped. I was wondering if your wife attends any support group and how she decided to go? My wife is afraid of what she will hear and the end results of being stage 4.

Later

Bobshope.

Bobshope

SmileyJane said:

Dear friend,
I understand
Dear friend,
I understand how you are feeling. My husband is metastatic melanoma which is spreading like wild fire and has now reached his brain. We interupted the chemo to start whole brain radiation. I am tired, scared, angry at the world, and frustrated. His orignial dx was in 2005 and the metatastasis occurred in Sept. He was close to death in Feb. and hung on enough to start carbo taxol. He has had good response from this chemo, but we learned (by accident) that he now has brain mets. The first scan showed 3 tumors and the final count was 14. He is half way through WBR and sick as a dog. He has brain swelling, N & V. I am home for the summer as I teach school. I have 2 kids at home 10 & 15, one in college, and one married.I feel very alone. No one wants to hear how you really feel. They can't handle it. Everything in our life has changed and probably will never be the same again. It is hard to handle. I am a Christian, yet find the "You're in my prayers answer aggravating.

Hi Smiley
My wife is currently going through her second chemo treatment with Taxotere. The side effects have not been extreame but still agravating. The hair loss,no energy,no sex drive,tearing.
Her energy levels get so low she can sleep 20+ hrs the 2nd or 3rd day after chemo. I feel the biggest issue is the lonliness that only another person in this position can understand.
You can talk to people and you get this "too bad, better you than me feeling". Is it bad to feel selfish by not being able to be close? I am here to talk and listen anytime you need a ear. Take care be strong.

Bobshope

Bobshope

akbetty said:

Burnout
hello Bob and Others,
I have also been experiencing burnout for the past few months. My husband was diagnosed with stage four lung cancer two years ago. Sometimes I am so tired of the stress, worry, and exhaustion, that I just want to run away from home. Then I feel incredibly guilty because I know I don't have that much time with my husband left, and I want to take the best care of him that I possibly can. Recently, after some disappointing test results, the doctor told me to expect things to get much harder, and I just thought, how can I cope with more? I guess what keeps me going is focusing on the times when my husband is happy and not in too much pain. Then I feel I can get through the bad days. Coming here and talking to others who understand has been a big help to me. I hope it helps you too.

Thanks AkBetty
Hi All:

I see all these people with cancer when I go to my wifes chemo treatment, and I wonder if any of their caregivers are feeling what I am feeling. Do I just feel this way because my wife is stage4? The fear of hearing the word " Terminal" has become a daily excercise that what happens when you hear that, what do you say or do you say I did my best and accept the situation. Has anyone heard anything about "CyberKnife"?
Betty thaks for the ear.

Bobshope

Katmir

Bobshope said:

Thanks AkBetty
Hi All:

I see all these people with cancer when I go to my wifes chemo treatment, and I wonder if any of their caregivers are feeling what I am feeling. Do I just feel this way because my wife is stage4? The fear of hearing the word " Terminal" has become a daily excercise that what happens when you hear that, what do you say or do you say I did my best and accept the situation. Has anyone heard anything about "CyberKnife"?
Betty thaks for the ear.

Bobshope

caregiver burnout

^5's to all--
i'm new here, but not new to caregiving... been doing it for over 3 years. it seems like a short period of time yet for me, a lifetime. it was 24/7 for dad with alzheimers (now passed) and currently 19/7 for a mom with cancer.
as i've read your posts all i can think about is how extremely lonely life is for so many people! while our days are filled to capacity with taking care of what needs to be done, we're shut off from so much. the god's honest truth is my mom is my very best friend. all others-- yes ALL others, just can't seem to find the time, or the needed words. they've essentially gone away-- or i've let them go because i can't seem to find a value worth holding onto.
watching a parent (or loved one) endure a disease is painful. i'm not one who needs a support group..... what i need is someone who is happy to share their "normal" days with me. i've enough of my days! tell me about yours!! let me enjoy the fact that someone else had a great day-- or even a sucky day! i'm tired of hearing that people admire what i do or tell me to "hang in there!" i'm tired of them telling me they're "there" for me. people who know me also know i'm a simple girl. i'm really easy to please! send me an email with a story about what happened today because you thought i'd get a kick out of it-- i would!
caregivers of those with disease deal with never-ending highs and lows... more lows than highs. there's a sadness inside us that we must deal with almost every moment of every day. someone we love-- truly-- dearly is suffering. perhaps dying. we're not suffering or dying as they are-- yet, emotionally we are.
bobshope, i learned the word terminal during the mid-stages of my dad's alzheimers. dad's life was going to end. stats and other info confirmed it was the undeniable truth. the moment i heard that word, my time with dad became precious. nothing could or would move me away from being there. i'm in the same place now with mom. so yes, i understand your daily exercise. no, i don't think a particular stage had much to do with your feelings. but perhaps it gave you a reason to look a bit harder at what is. my prayers include you and your wife.

lily33

First of all try not to feel
First of all try not to feel guilty about feeling angry or burned out. My husband has been fighting kidney cancer for over 5 years and I can emotionally go from happy to angry within 5 minutes. I've learned that taking moment by moment helps from keeping me overwhelmed. If I'm sad I give myself permission to BE sad...if I'm angry I allow myself to vent. Sometimes as caregivers we feel that we have to be strong and supportive every minute-we don't. We can be angry and that's o.k.-it doesn't mean we don't love our sick loved one. I struggle every day to allow myself to be human NOT superhuman. Sometimes I have myself a little "pity party" and it allows me to sit with all the emotional and physical junk that comes with this disease. I tell myself this whole situation sucks and it's no ones fault. As long as the "party" only lasts a little while I feel it gets my frustrations out allowing me to move on.

padee6339

lily33 said:

First of all try not to feel
First of all try not to feel guilty about feeling angry or burned out. My husband has been fighting kidney cancer for over 5 years and I can emotionally go from happy to angry within 5 minutes. I've learned that taking moment by moment helps from keeping me overwhelmed. If I'm sad I give myself permission to BE sad...if I'm angry I allow myself to vent. Sometimes as caregivers we feel that we have to be strong and supportive every minute-we don't. We can be angry and that's o.k.-it doesn't mean we don't love our sick loved one. I struggle every day to allow myself to be human NOT superhuman. Sometimes I have myself a little "pity party" and it allows me to sit with all the emotional and physical junk that comes with this disease. I tell myself this whole situation sucks and it's no ones fault. As long as the "party" only lasts a little while I feel it gets my frustrations out allowing me to move on.

It Helps......
Thank you for all your comments on caregiving. I am the one who just finished my cancer treatments. My Mom who is 88 came in September to spend a couple weeks with me for her birthday, and she has not been able to go home since. She lives about 150 miles from me. She has been by my side from my diagnosis to treatment completion. She has practically had to force feed me when I would not eat. She has held my hand through chemo and rads. I have s new understanding of what she went through while I was sick. I am taking her home next week and want to do something special for her. While she was with me, her beloved African Violets died and I want to replace them. She feels so bad about that, and I feel very guilty that I was the one who allowed that to happen. I know she misses her home and her life and I am eternally grateful to her for just being there. We laughed together and cried together and I know she did more crying than I did. Even at 60, I am still her baby. Thanks for the insight - it helps me to understand.
Pat