Many of us have been in the role of caregiver, whether it is for a person with cancer, or old age or other illnesses. While it can be a blessing to care for a loved one at times, at other times it is just absolutely stressful.

There were times when I thought the top of my head was going to blow off in frustration. Other times when I was trying to help, but trying to also hide my grief, knowing my Mom or Dad would be leaving me. And then there was guilt. Guilt that I was not doing enough, not doing the right things, and guilt that they were not getting better.

The symptoms of the stress are many, such as:
Feeling sad or moody
Depression
Exhaustion
Trouble sleeping, or not sleeping enough
Not wanting to get out of bed in the morning
Not feeling appreciated by the person your are caring for

The list could go on and on...............................

You should not feel bad about having these feelings. It is normal. Many doctors diagnose caregivers as the "hidden patients". Aptly put. But if you don't take care of yourself, you may not be able to care for your loved one.

Ask for help. Stay close to family and friends. Ask them for help. People like to help, and many times they say "let me know what I can do to help you." But we don't specifically ask for help. It can be simple things that help, such as a run to the store for you. Can you pick up a perscription for me? Would you sit with my loved one for an hour while I take a break?

Community services can include meal delivery, transportation, legal or financial counseling and home health care services such as physical therapy or nursing. You can also ask at your church or synagogue for services or volunteers who can help you.

If you are reading this, you are already at an on-line support community that can help. We can't physically run to the store, or help in the ways written above, but we can support you, and listen to you and sometimes that can help.

Whatever it is, give yourself a break. Your job is very important as a caregiver. Congrats on a job well done.

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

Pure poetry. I reread this post several times. Even realizing that some of my issues, behaviors and thoughts were stress related made me feel good for a moment.

Now all I need to do is find avenues that I can take to honestly reduce the stress and still accomplish the things that are necessary to sustain the people that are relying on me. I think that the forthrightness of your post might make some people realize that at some point continuing to allow those in your care to put straws on the camels back will eventually break that back.

Thank you Judy for a very thought provoking post.
Annette

_________________
5/5/09 Bad Cough - sent for xray
5/6/09 CAT SCAN
5/8/09 Pulmonologist - not good ordered bronch
5/14/09 Bronc 5/19/09 Breathing test & Results - NSCLC (Adenocarcinoma 3cm)
5/22/09 PET Scan - 5/27 referred to surg & onc
6/2/09-met with surg & onc. They say there are two spots. One small on left lung and one larger one on right lung 3.6 x 3.2 cm - they are pretty sure and approaching it as if it were two separate cancers staging the right at II and the left at I.
June 15 - RML removed - Pathology - margins clear and nodes clear. June 25 follow up with surgeon - doc agreed to stage I since it appears he got it all - June 30 return to work
July 7 Oncologist says Stage 1A - we don't recommend chemo for this stage
Aug 17 - surgery - again took ULL and some nodes -
Sep 8 to onc - Both sides IA - no chemo just watch closely
Dec 15, 2009 - CT Results - NED
March 10th, 2010 - CT Scan - Results - NED
June 15th, 2010 - XRay - Results - NED
Sep 15th 2010 CT Scan - Results - NED
Dec 2010 XRay Only - Results - NED
Dec 2010 MRI - Results - Clear
March 2011 - CT Scan - NED
June 2011 - XRay Only - NED
Sept 2011 - Scan & Vampires - Scared to death!!!!

there is so much info for caretakers and its amazing! i am trying to remember the name of the site I used to recommend. It lets you organize your entire caregiver support system in one place to make life easier! Some people have friends and Family that get involved including transports to appointments and providing lawn care and food items for freezer and housekeeping services that it is sometimes amazing!

Thank you for taking the time to address this and starting a dialogue about these issues!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

And isn't it great to have those friends and family who don't say "let me know what I can do" but they just come and they do? Never once did I have to say to my sister and brother in law, I need "this". They just did things they knew I needed and left me to take care of what I needed to focus on. Oh and there were the dear friends that made sure I had few meals to cook in the 19 months of Gene's treatments.

_________________
Gene passed on Friday, October 29, 2010 at 4:45am after a hard fought 19 month battle with non-small cell lung cancer. He was a wonderful husband and father. I miss him more than words can ever say!

Thanks Judy,
I am sure there are many out there appreciate your comments.Caregivers are really the unsung heroes,the support they provide,often over many years with perhaps little praise,or acknowlegement even,I take my hat off to each and everyone of them,for without this army of selfless people society would grind to a halt.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

I am new to this caregiver role. I am already full of guilt and anger. Not toward my mom, who is the patient, but toward my sisters. Your post says that we should actually tell others what we need from them. I am sure it's mostly my paranoia, but I am terrified to leave my mom unattended. I just keep running all the horrible possibilities through my head and I live over 400 miles away. So, I have asked other family memebers to stay with her when I leave to go home to take care of my obligations there. I have a 14 yr old son and a husband who works away from home over night. We have established places for him to go when my husband and I are both away. However, lets face it I do still have obligations as a mother and despite my every effort, cannot find a magic spell to allow me to be in two places at once! My delimia is that when I do ask I get told, " yes, yes" and then they don't follow through as promised. I find out that they have not done as promised and left her there alone. I know none of those horrible things have occured... YET! I just don't know how I could ever forgive myself if she is alone and something does happen. I now find myself feeling like I can't trust the others to stay with her and my mom will not come home with me when I leave her house. She has always been a very independent woman and is having a very difficult time succumbing to the idea that she needs a caregiver. So, when I leave she tells people who are suppose to come- (who by the way are her other daughters or granddaughter) that she is fine alone. I have explained for them to expect her to do this to the others and also let them know why I feel the way I do and have asked them to not give in to her request to be alone. But, they do.
Am I wrong to not allow my mom to decide if she wants someone there or am I justified in my fears. My thoughts are, " better safe than sorry". I just can't stay with her constantly. But, find myself feeling that I must be the only one who is going to do this for her!

_________________
10/4/11- Mom admitted to hospital for SOB symptoms.
10/6/11 biopsy results along with full body CT results: NSCLC IVb with bilateral mets, small pleural effusion, large 9.6 cm mass in lower right lobe that abuts mediastinum but does not invade. Rt adrenal mass and two rt lobe brain tumors both approx 3 cm large.
10/17/11 targeted spot radiation treatment for brain mets- not even a headache afterwards.
10/25/11 First chemo Cisplatin +Alimta. Came through like it
was a trip to the hairstylist.
11/15/11 second chemo trmnt- ran her over like a freight train.
12/6/11 third chemo- not as bad as last one, but has developed hand tremors and a horrendous cough.
2/12 had reaction to Cisplatin & now on carboplatin & taxotere.
;lost her hair & cough that was releived for a bit is now back. No energy & no appetite. CT's & MRI has shown some shrinkage in lung & brain.

Hi D,

I didn't notice this post before responding to your other post. You've asked very valid questions. I have some questions for you to help understand the situation.

Is she getting treatment anymore? When my Mom was dx, she took radiation therapy to her brain because she was having seizures, but refused any other treatments such as chemo. When she was done with the radiation, we had the "tough talk" about Hospice. At first she was completely against it because she thought if she accepted it, she was "giving up". When I explained that their job was NOT to help her die, but rather, to help her live well, with good quality of life, she decided to accept their help.

This was huge in helping me care for her. Not that they could be there all the time, but knowing I could call them in an emergency was a relief. As you will read in my post to you, I was in a situation where my siblings were not willing to help care for her.

My Mom was also very independent. I was very careful in explaining what Hospice would be doing, to help her understand that their help was not accepting death. It was critical for her to understand that, in order to accept their help.

I don't know what else to say in writing. If you want to talk, private message me, and I'll give you my phone number. I totally understand your frustration, and anger. It is a tough place to be. I get it.

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

Thank u for the offer of ur phone #. I have read several of ur posts & replies to others & realize you are a very informative veteran with this cancer ordeal in many aspects. So I do value your opinions. I will send you that private message as soon as I figure out how. Lol! I know that I am now in need of outside input that comes from experience & from an objective view point. It seems easy to see things from my own view point & it's also easy to get lost in my own mindset. I guess that's why I came to this web forum. I just needed some feedback on the things I was feeling. Because, we all need a reality check. I don't feel pity for myself & am not looking for any gold stars for the care I am offering to my mom. I just needed to know from others who have been through this ordeal if I was thinking selfishly or with paranoia. I only want what's best for my mom. Who, yes by the way is still undergoing treatment. The onc has her thinking that she will only have to have 6 chemo treatments & then possibly some maintenance afterwards. I don't have the heart to tell her that if she survives the six that it could be years of her battling this monster. I want her to keep the hope alive, but at the same time I don't want her to be devasted if she finds out the treatments have not been as successful as she had hoped. I'm not sure what to say to her and what not to say. I sometimes find myself thinking, " dummy- you shouldn't have said that. Now she thinks you're planning her demise."

_________________
10/4/11- Mom admitted to hospital for SOB symptoms.
10/6/11 biopsy results along with full body CT results: NSCLC IVb with bilateral mets, small pleural effusion, large 9.6 cm mass in lower right lobe that abuts mediastinum but does not invade. Rt adrenal mass and two rt lobe brain tumors both approx 3 cm large.
10/17/11 targeted spot radiation treatment for brain mets- not even a headache afterwards.
10/25/11 First chemo Cisplatin +Alimta. Came through like it
was a trip to the hairstylist.
11/15/11 second chemo trmnt- ran her over like a freight train.
12/6/11 third chemo- not as bad as last one, but has developed hand tremors and a horrendous cough.
2/12 had reaction to Cisplatin & now on carboplatin & taxotere.
;lost her hair & cough that was releived for a bit is now back. No energy & no appetite. CT's & MRI has shown some shrinkage in lung & brain.

D, smiling at the private message comment! If you look at the bottom of my post, you will see to the left 3 little boxes and one of them says PM, which stands for private message. Click on it under my post here, and it will take you to my email here. Then you can write privately to me, and I can respond the same way.



Judy

_________________
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

I did figure out the PM deal & sent you one. Not sure if I did it correctly because haven't seen a response from you on it. So, if you didn't get it let me know & I'll try my hand at it again.

_________________
10/4/11- Mom admitted to hospital for SOB symptoms.
10/6/11 biopsy results along with full body CT results: NSCLC IVb with bilateral mets, small pleural effusion, large 9.6 cm mass in lower right lobe that abuts mediastinum but does not invade. Rt adrenal mass and two rt lobe brain tumors both approx 3 cm large.
10/17/11 targeted spot radiation treatment for brain mets- not even a headache afterwards.
10/25/11 First chemo Cisplatin +Alimta. Came through like it
was a trip to the hairstylist.
11/15/11 second chemo trmnt- ran her over like a freight train.
12/6/11 third chemo- not as bad as last one, but has developed hand tremors and a horrendous cough.
2/12 had reaction to Cisplatin & now on carboplatin & taxotere.
;lost her hair & cough that was releived for a bit is now back. No energy & no appetite. CT's & MRI has shown some shrinkage in lung & brain.

At the bottom left is PROFILE, PM OR EMAIL. I didn't get your PM. Usually if I get a PM it shows up at the top left of the page, under 'new messages.' I look forward to hearing from you.

_________________
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

Ok I attempted to resend the previous PM. Says it went. Let me know if still not received. Thanx

_________________
10/4/11- Mom admitted to hospital for SOB symptoms.
10/6/11 biopsy results along with full body CT results: NSCLC IVb with bilateral mets, small pleural effusion, large 9.6 cm mass in lower right lobe that abuts mediastinum but does not invade. Rt adrenal mass and two rt lobe brain tumors both approx 3 cm large.
10/17/11 targeted spot radiation treatment for brain mets- not even a headache afterwards.
10/25/11 First chemo Cisplatin +Alimta. Came through like it
was a trip to the hairstylist.
11/15/11 second chemo trmnt- ran her over like a freight train.
12/6/11 third chemo- not as bad as last one, but has developed hand tremors and a horrendous cough.
2/12 had reaction to Cisplatin & now on carboplatin & taxotere.
;lost her hair & cough that was releived for a bit is now back. No energy & no appetite. CT's & MRI has shown some shrinkage in lung & brain.