Caregiver Burnout

padee6339 said:

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

Mothers
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

you've been on my mind

.... 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 said:

EarlyBird
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!!!

Care Giver Burnout
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 said:

Hope
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

Burnout
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