Ok, despite having been a caregiver for almost 4 years and being a moderator on this thread devoted to family members/caregivers, I didn't appreciate how hard that role is until last week.

I've been very involved in mom's care, but I live 500 miles away so I've been researching and advocating and offering support by phone and visiting as frequently as I can. But that's different than the hands-on 24/7 caregiving I discovered her last week of life. We were fortunate in that mom didn't need 24/7 care until the end. When I got the NC at 2:30 am on Saturday morning I got a few hours of sleep and went to the hospital to see her. I pretty much didn't leave, except to come home to shower, change and take delivery of the hospice equipment for three and one-half days. If she slept, I got a little sleep, but she didn't sleep much. The last night it seemed like every time I laid down she needed something. She wan't being difficult, she truly needed me to help her. But I don't see how one person does this for more than a few days. After 5 days I was about to cry I was so tired and so frightened.

So all of you hands-on caregivers out there have my complete admiration. Remember that this forum is a place where we can ask advice, share experiences or just come and vent when we think we can't take it any more. Trust me. Any of us who have been there will understand the need to vent and won't think any less of you for it.

Susan

_________________
76 year-old mom diagnosed with stage IV lung cancer January 5, 2007.

15 radiation treatments to the spine and four rounds of chemo, Jan-May, 2007.

Stable disease May, 2007-May, 2008.

Bone scan May, 2008 shows new mets in the spine, pelvis and ribs.

July, 2008--finished radiation and has a Quadramet treatment.

October, 2008--Scans show mild progression. Began chemo (carbo/taxol/avistin). Will have four rounds of threatment (every 21 days) and scan in January.

01/05/2009--TWO YEAR SURVIVOR!

4/2009--STABLE! No treatment. Next scan in July

7/2009--Scan shows pleural effusion. Fluid drained and malignant. Cancer has spread to other lung and a 13 mm lesion is seen on the liver. Mom to begin Alimta on 8/3

11/2009--Alimta was hard on mom and scans showed progression.

12/2009--began Tarceva, noticed almost immediate improvement.

2/25/2010--Celebrated Mom's 80th birthday!

5/15/2010--Mom watched her oldest granddaughter graduate from college and then paritied well into the night! She's still feeling great.

6/15/2010--Mom watched her youngest granddaughter graduate from high school. Still feeling great!

8/2010-10/2010--Mom begins feeling tired and stays in bed more and more. Scans reveal that the cancer is moving rapidly throughout her body.

10/13/2010--Mom wins her battle once and for all, and passes to a place where the cancer can no longer touch her.

For a more detailed timeline see:

http://www.lungevity.org/l_community/viewtopic.php?p=360385#360385

being a caregiver for 11 months and 21 days was the hardest thing I ever did- emotionally and physically. I still have health issues, anxiety and hyper tension from that time in my life.

My heart is with all the caregivers and family members near and far who with every ounce of care wish we could erase the cancer from our loved ones bodies.

We don't sleep, we fail to take care of ourselves, we neglect our own families and jobs and responsibilities in order to care for our loved one with cancer.

Cheers to us all for having been thru it and made it out the other side~

Prayers to you all going thru it now~ may your outcomes be celebrated by your loved ones survivorship.

Yes, please use this forum to ask advice, vent and lean. Our shoulders and ears are here for you.

On a side note: caregivers are so special to me that I am working on some caregiving tools and user modules to help lung cancer caregivers.

And don't forget our caregivers contest. We want to honor you. You can enter by clicking here. http://events.lungevity.org/site/PageNa ... _Caregiver


Thank you for posting this Susan. A Big (((Hug))) to you too.

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Susan, I wrote this long, well thought out sharing, and bam! Got a DNS server error, and it was gone. Dang!

Anyway, I was my Mom's caregiver from 1989 (breast cancer) to 1991 (bypass surgerys for PAD), to 1992 (liver failure) to 1996 (lung cancer). She almost died so many times that I called her the Energizer Bunny, who keeps going and going and going....when it just seems she should not keep surviving these traumatic health events.

It took a terrific toll on my physically, emotionally, and even spiritually. I emerged from it a better, more compassionate person, but wow. What an ordeal.

When she died, while I was devastated, and still miss her, a part of me was glad that her long time suffering was finally over.

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25