Cancer Survivors Network - Caregiver Burnout - Comments

Seaboy

Bobshope — Mon, 06 Jul 2009 17:15:33 -0400

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

Burnout

seaboy — Sun, 05 Jul 2009 16:58:16 -0400

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

Hope

Bobshope — Tue, 30 Jun 2009 18:51:27 -0400

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

Care Giver Burnout

longingforhope — Tue, 30 Jun 2009 12:01:41 -0400

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

EarlyBird

Bobshope — Thu, 25 Jun 2009 14:36:41 -0400

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!!!

Always Greatful

Bobshope — Thu, 25 Jun 2009 14:23:28 -0400

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

Burnout

seaboy — Thu, 25 Jun 2009 09:47:17 -0400

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.

you've been on my mind

Katmir — Thu, 25 Jun 2009 08:33:49 -0400

.... 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,

Bobshope

MichelleP — Wed, 24 Jun 2009 19:20:46 -0400

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

Mothers

slickwilly — Wed, 24 Jun 2009 11:06:43 -0400

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

It Helps......

padee6339 — Wed, 24 Jun 2009 10:25:55 -0400

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

First of all try not to feel

lily33 — Tue, 23 Jun 2009 09:11:57 -0400

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.

caregiver burnout

Katmir — Mon, 22 Jun 2009 21:02:51 -0400

^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.

Thanks AkBetty

Bobshope — Mon, 22 Jun 2009 19:19:15 -0400

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

Hi Smiley

Bobshope — Mon, 22 Jun 2009 18:38:32 -0400

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

Caregiver Burnout

Bobshope — Wed, 10 Jun 2009 12:48:57 -0400

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