Caregivers' Support

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August 13, 2012 at 5:00 pm  #1246736    
catdander forum moderator
catdander forum moderator

This thread is split from Myriam’s sister’s update, http://cancergrace.org/topic/update-on-myriams-sister/page/2 when a provocative discussion began about the needs of caregivers. I hope the discussion continues here.

It’s absolutely true that among the differences in the palliative care mindset is that there is a broader focus on providing support for the patient as well as their family and friends who are helping and all affected by a person’s illness.
-Dr. West

How is it that palliative care isn’t standard of practice? Conclusions from the study done by J. S. Temel et al http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=42533 . “Conclusions: Early PC in patients with newly diagnosed metastatic NSCLC led to significant improvements in both mood and QOL. Patients receiving early PC experienced less aggressive care at the EOL, yet prolonged survival, compared with SC patients.”

August 13, 2012 at 6:17 pm  #1246739    
Denise Brock
Denise Brock

wadvocator – a list of things to do for yourself would be great. I wish I had had one, but honestly, anything that anyone would have told me to do for myself would have fallen off the list as soon as it was put on there. It was all I could do to keep my daughter in summer camp, feed my family, etc… Any opportunity I had to spend with my friend, I took it. I wish I had taken more. In doing so – I feel like I did things for myself also – because I was able to spend those last moments of time with my friend. I would have not liked to feel like I wasn’t there for her. we tried to keep things as normal as we could, and that was not just for her – it was for me also.

I started a journal at some point. it was full of swearing and rage, sadness, and a few happy times. it helped. Someday I will look at it again…

I don’t know if there can ever really be a list or tool that you can follow. Just follow your heart and do what feels right. there is time for all those other things some other time.
D

August 14, 2012 at 12:52 am  #1246743    

certain spring

I wonder if we should start a separate caregivers’ thread, so others can chime in with their experiences and suggestions. I think a lot of people here would value that.
Myriam, thinking of you today – I know you are going with your sister to her doctor’s appointment.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

August 14, 2012 at 5:46 am  #1246745    

fortmyr

Dear CS, I think the separate caregiver thread is an excellent suggestion, and thank you for thinking about me, I really appreciate your kind words and support.

Take care,

Myriam


Sister (46 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009 12/09-03/10: 5 cycles cisplatin+navelbine (stopped because of neuropathy) 04/10-06/11:Tarceva (EGFR, exon 21 mutation) 02/11: 15Xrad. to right lung (bronchi blocked) 04/11: MRI shows 10 brain mets. 05/11: 5 sessions of WBRT (20 Gy) 06/11-12/11: maintenance Alimta 11/11 and 01/12: radiosurgery (15 Gy to 2+3 brain mets) 12/11-03/12: re-Tarceva. 04/12: Afatinib (convulsions) 08/12: adding Cetuximab to Afatinib. Left us October 31, 2012.

August 14, 2012 at 10:28 am  #1246760    
Denise Brock
Denise Brock

thank you CatDander, really appreciate your doing this. I would love to see what other caregivers have to say. One thing that I find is often true, is that the past caregivers find a huge need to move on. which I totally understand – especially a husband or wife. There is much pain in remembering the process, and I think it takes years to be able to look it all in the face and breathe again.
D

August 14, 2012 at 11:44 am  #1246763    

wadvocator

Thanks for creating a different thread!

I am also adding the link to the question I asked Dr.Harmon (assuming she will respond via the article question thread)

http://cancergrace.org/cancer-treatments/2012/08/09/dr-harman-depression-fatigue/#more-2502

Her answers might be useful to the caretaker community. She is on vacation and should be back in a couple of weeks.

Hi Dr. Harmon,

Thank you for the article! As I read your article, I can actually relate to it (stress and fatigue) to myself as the caretaker. I lost 15lbs when my wife’s condition was first diagnose, then going through data gathering to get the treatment started, and then go though shocks of the side effects. Currently, my wife’s condition is stablized. But there is a constant stress of not know when the next shoe might fall.

Do you have any book recommendations for caretakers?

Thank you!

August 14, 2012 at 6:44 pm  #1246782    
Dr West
Dr West

Actually, she did get back to me (on vacation, and with limited internet) that she doesn’t know of any great resources for caregivers but would be reaching out to a colleague who might have some good insights. I’ll reach out again in a week or so if she hasn’t provided any follow-up, but it’s very possible that she’s not getting any great further info, and I also want to respect her time away with family, so I’ll leave the ball in her court for now.

I have definitely had discussions with cancer advocates that it’s very common for spouses of people who die of cancer to feel an understandable need to move on with their lives and put their grief behind them. They often want to distance themselves from the cancer world, and it’s often the sibling, parents, and friends who may feel most compelled to be longitudinally involved in cancer community efforts.

With regard to the question of why palliative care integrated with earlier cancer care isn’t widely practiced yet, I think there are a few reasons. In truth, the results from the Temel publication were very surprising, even for the investigators, and are still essentially inexplicable. These results haven’t been seen in other studies, so I think the expectation of a survival benefit is really elusive. Also, that paper didn’t describe (or proscribe) any specific interventions: the palliative care referral was followed by a “black box” of something magical but undefined happening. Finally, there are real practical barriers to implementing palliative care efforts, including $$ (this work is often not well reimbursed) and a lack of people well trained to do this work everywhere. This isn’t to say that palliative care shouldn’t be implemented earlier and widely available, but more to explain some of the barriers.

-Dr. West

August 14, 2012 at 11:26 pm  #1246793    

blue skies

Dr West observed that “…the palliative care referral was followed by a “black box” of something magical but undefined happening>”

I say, when science can’t quite get you there yet, cancer patients and their families need all the magic they can find!

Thinking of you all and hoping today is a good day for everyone!

April 1, 2013 at 8:42 pm  #1255315    

wadvocator

I saw this at SCCA today and thought it might useful to caregivers…

Caregiver Recipe Car for Self Care…How are you doing?

1. I feel rested and calm T F
2. I am getting enough sleep T F
3. I have someone to talk to T F
4. I am eating right T F
5. I am exercising regularly T F

If you answered more than 2 false, then read the Recipe for Support….

–see a social worker or chaplain
–attend a De-stress event
–Read the caregiver article in the “Time for You Guide”
–Attend a Yoga class
–Attend a lunch and lecture
–Go for a walking
–Attend a knitting class
–Call your nurse with any questions or concerns.

January 13, 2014 at 11:20 am  #1261518    

badita

Dear wadvocator,
Thanks a lot for your advise!

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