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Caregiver Burnout

Bobshope
Posts: 20
Joined: Jun 2009

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
Posts: 115
Joined: Apr 2009

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
Posts: 20
Joined: Jun 2009

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's picture
Reddie
Posts: 72
Joined: May 2009

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

Bobshope
Posts: 20
Joined: Jun 2009

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

AnneS
Posts: 27
Joined: Apr 2009

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
Posts: 20
Joined: Jun 2009

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

angelsbaby's picture
angelsbaby
Posts: 1162
Joined: May 2008

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
Posts: 27
Joined: Apr 2009

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

angelsbaby's picture
angelsbaby
Posts: 1162
Joined: May 2008

thank you

michelle

AnneS
Posts: 27
Joined: Apr 2009

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 shitty 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

Bobshope
Posts: 20
Joined: Jun 2009

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

seaboy
Posts: 6
Joined: May 2009

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.

Bobshope
Posts: 20
Joined: Jun 2009

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.

seaboy
Posts: 6
Joined: May 2009

Bobshope, In answer to your question about support groups, my wife has always been a bit of a loaner. She has found a few gals in similar situations as herself on the bcmets site that she keeps in touch with. One of the most difficult things to deal with in the stage 4 dx is that there aren't a whole lot of treatment options and many are hard on the body. Cyber knife from what little I know can be helpful in buying time, we got an info packet from Wouthwest Washington Medical Center but I'm sure there is a facility in your area with the Equipment and they all have glossy info packs.My wife had some sucess (18mo) with avastin and phaslodex, but the choices have so much to do with each individuals case Its hard to know what might help.

What I have had to do is learn to face her death. The Onc said we have a year left and time lately has been moving so fast. Accepting what is going to happen has given us the chance to grieve for what were losing, find joy in all the years weve spent together, and help eachother with our fears, sometimes just by watching movies and holding hands and for us talking. I wish you well Bobshope payers to you and all the other caregivers out there.

Bobshope
Posts: 20
Joined: Jun 2009

Seaboy thanks for your kind words and understanding in the situation many of us are in. I knew stage 4 was going to be a battle but I didn't realize the toll it would take on me at the same time. I have not lost hope it is just the frustration of after 44 years of knowing and loving this woman there is nothing I can do but stand by her and watch her suffer. I get the idea that I am just human , but it doesn't help the pain. In researching "Caregiver Burnout" knowing what I need to do and doing it are two different things. Thanks to all who read this for your support and prayers, it does make a difference knowing I am not alone.

Thanks Again

Bobshope

SmileyJane
Posts: 2
Joined: Jun 2009

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.

Bobshope
Posts: 20
Joined: Jun 2009

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

akbetty
Posts: 38
Joined: Apr 2009

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
Posts: 20
Joined: Jun 2009

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
Posts: 21
Joined: Jun 2009

^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.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Please don't think of your wife being "terminal". I found a web site which I will list below that actually have people with stage 4 lung cancer as far back as 1993 and they post daily with messages of hope. Please go there. I was amazed at how much emotional support they have given me. My husband has stage 3 with malignant plueral effusion and for the first time since his diagnosis I feel like there is HOPE :)

http://www.lungevity.org/l_community/index.php

lily33
Posts: 27
Joined: Jun 2009

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's picture
padee6339
Posts: 765
Joined: Jun 2009

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

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Pat. You sure have a strong and loving mother. And I know your right when you say you will always be her baby. Sometimes I just have to smile when my 75 year old mother says things that I say to my daughters. Like most loving parents I am sure she would gladly give up everything in her life for you. The flowers were a small price to pay compared to your life. I am glad that you made it through your cancer treatments and I hope you have many years together with your mother. It never seems we have enough time with the ones we love. Slickwilly

Katmir
Posts: 21
Joined: Jun 2009

.... and i'm thinking about you.

i hope that today is a good day for you and your wife-- that something, even if it's a butterfly flittering about, you find joy.

with hope,

~k

Bobshope
Posts: 20
Joined: Jun 2009

Hi Katmir: Sounds familier up at 5:30 am. Thanks for your response. I'd like to give you a sence of who my wife is. This is her last update to friends and family:

Dear Family and Friends,
Just to keep you informed, I had an upper body cat scan Friday, June 6 and a followup with my oncologist. He was satisfied with the results of the scan compared to the previous scan 3 months ago that showed, g/n no new spots, b/n-g/n no change in the spots I already have, they're still there but have not grown. My current chemo program was to be for 4 months, 30 minutes of treatment (which can take up to an 1 1/2 hours plus from butt in chair to butt out of chair), each treatment is scheduled 1 day a week for 2 weeks, the third week is longer cause I get an extra med for 15 minutes, skip week 4 then start again. I started this program in April hoping it to be over in July, but the Dr. informed us I'll go thru September (6 months total) I guess he feels this medication is working, I sure hope so cause the side effects are not pleasant which includes very low level of energy usually starting the second day after chemo, but I can sure live with the side effects compared to what hell other patients are having to cope with, in that respect I do feel lucky. I was spending alot of time on the couch but since the weather has been so nice I'm on the patio, Bob calls me a patio lizard (instead of a lounge lizard), I'll have another scan in September and after comparing that one to the previous one 3 months before that, my Dr. will then decide what to do. So, for the next 4 months my routine will continue to be going twice a week to Kaiser, resting on the patio and trying to live some semblance of a life when I have the energy to, fun stuff like housework, laundry, errands, trips to the mall (walking is therapeutic), etc.
I do want to acknowledge that Bob and I and our family would not have been able to get thru this "adventure" of life if not for all your prayers and positive thoughts, please keep 'em coming.
Thank you to our Prayer Warriors and Angels

Yes she is the love of life!!!

longingforhope's picture
longingforhope
Posts: 61
Joined: Apr 2009

Bob,

First of you are a remarkable man for taking such wonderful care of your wife at such a difficult time of her life, which may be nearing the end. Her post to family and friends conveyed the love and appreciation she feels for everything you do for her. A tone of an e-mail says more than actual words and you should know that she deeply loves you.

I've been my husband's care giver since August 2008, he was dx with malignant matastic melanoma stage 3 and underwent two major operations in 3 weeks. The first one they removed the tumor, the second one they removed the sentinel node which crumbled during surgery and took an hour to clean up then another 3 hours to remove 20 lymph nodes. It was the most terrifying day and my daughters age 15 and 18 were afraid they were going to lose their Dad.

Now instead of nursing school that I was in prior to Aug of last year my days are filled playing nurse. Chemo and Rad weren't options so we are doing a YEAR of Interferon. It started with 5 weeks of 5 day a week iv treatments that lasted 4 hours a day at the clinic. We drove through snow and an ice storm every week, my nerves were shot by the end. Now i give him shots 3 times a week until November.

My life literally changed in one day and we were so busy having ct scans, mri and pet scans I couldn't even deal with the fact he had cancer. He is one lymph node away from stage 4 but recently had a pet scan with no evidence of disease. Of course they made sure we knew that was for that day and it can return any day.

So I have times I am angry that he has cancer and that I lost my life. And I get tired and cry. Plus I have to deal with the insurance company and SS and Doctors and Specialists. On top of that my oldest daughter was checked for atypical cells on a mole plus has undergone numerous tests on her lungs and thyroid. It's all been to much and believe me I want to either run away or pull the covers over my head.

So I come to this site and also visit the chatroom which I encourage all of you to do. Slickwilly can vouch for the relief you get venting then having a laugh with your online family. If it weren't for this site I surely would have lost my mind by now.

Oh yes and as I was driving to Fla in April SS called me to say my husband was terminal and we were receiving a charity hardship. That was a lovely day. Funny thing though he is able to go out and he breathes quite well!

Keep the faith and when the time comes know that you will handle it with grace and dignity. I was with my best friend 3 yrs ago when we helped her husband with stage 4 cancer on his journey out of this world and it was peaceful and surreal. Lucky me, I've done the care giver gig before. That's why I was terrified when this started, I know the end result.

It is lame but you ARE in our prayers as everyone with this dreaded beast is.

Take Care,

Hope

Bobshope
Posts: 20
Joined: Jun 2009

Thank you for the kind words. It is very difficult to tell people who haven't gone through this or are going through this how hard it is. This is why I came to this site to talk and listen to others in the same position for ideas and comfort. Some are worst off than others with physical, financial and family problems. The old saying is that there is always someone in more trouble than you are if you look. I guess I'm saying is that I am lucky to be facing only one issue instead of multiple issues. But losing the most important person in my life sure doesn't make me feel lucky. I try everyday to stay strong and for most parts I am fine.
There are just days that I don't want to get up, think or do anything. My wife is currently going through her second round of chemo. She is so tired some days that I have to force her to get up and eat. She say's everything taste terrible so she won't eat. So I make her drink Ensure. Some days I just feel like a servant. I hear all these advice columns saying you need "Me Time" but I feel the real problem is the loss of closeness and intimacy. As time goes buy you become afraid to say or do anything that may upset your partner even though you long for that connection. Well enough for today, thanks for letting me vent.

Bobshope

seaboy
Posts: 6
Joined: May 2009

Bobshope, For starters I don't think any of us is in anyway lucky here, I'd like to be positive but my wife has had a situation of sudden onsent demensia. 10 days ago she was fine now She talks more than ever 90% babble. I'm probably not in a very good place to offer support but one excersise my grandmother taught me years ago as she was struggling with various health issues. I'd ask her how she was doing, she'd say "counting my blessings". On my worst day there is something I can focus on that's good. Roses in the garden, our goofy border collie, a good roof over our heads, beautiful music, you get the point. On the diet front, try Rice milk mixed with soy milk (available in most supermarkets,all health food stores. On bad days Lola would take cold rice milk, on better days the two combined in a blender with a banana or other fruit. The two compined make a complete protien tastier than ensure. Good luck, my prayers are with you both. Seaboy

Bobshope
Posts: 20
Joined: Jun 2009

Thanks for the reply and advice. I know sometimes my frustration comes out in words, but I feel free to say what I think and feel here. I read your story and feel lucky only to be fighting one problem. I think you and I are on the same page but I say it differant. I do count my blessings everyday, and know how things could be alot worst than what they are. I have only been going through this for 3 years and I admire you being able to handle this illness for ten plus and now with this setback. If I may ask is this a side effect of the BC?
I too wish you the best of luck and continue to stay strong.

Bobshope

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