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#117173 - 05/26/10 01:04 PM Caregivers need to take care of themselves also
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
My personal opinion has been and remains that Cancer is harder on the caregiver than the patient. Since some people can get upset just reading my posts, imagine having to live with me. (pause while the majority of the board has a collective cyber-shudder). I've been luckier than many in having a world class caregiver. So just wanted to share an interesting Washington Post article on the challenges of caregivers. It is not focused on oral cancer so it does not capture the daunting challenges the OCF caregivers face, but it gets the general gist.
In sickness and in health
One excerpt below:
Quote:
The medical and psychological literature have long reported that caregivers face risks to their own well-being, especially when they're caring for people with dementia. Caregivers under stress have higher levels of depression and anxiety; their immune systems suffer. A 2005 Commonwealth Fund overview found that caregivers of all ages reported chronic conditions -- including heart disease, diabetes, cancer and arthritis -- at nearly twice the rate of non-caregivers, 45 percent vs. 24 percent.

In an oft-cited study published in the Journal of the American Medical Association in 1999, University of Pittsburgh researchers followed nearly 400 elderly spousal caregivers for four years and reported that those experiencing mental or emotional strain had 63 percent higher mortality rates than non-caregivers. (Caregivers not experiencing emotional or mental strain did not have elevated mortality rates.)


So take good care of yourselves, OCF caregivers. The patients need you
Charm
_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#117248 - 05/28/10 05:52 AM Re: Caregivers need to take care of themselves also [Re: Charm2017]
SusanW Offline
Gold Member (200+ posts)

Registered: 02/05/10
Posts: 235
Loc: NYC
I think this was such a good thing to post. Not only because I'm a caregiver but because I've worked with so many caregivers.
What I see(and sometimes feel) over and over is that the caregiver often feels they have no "right" to complain, to be sad, to vent, to get frustrated, angry,etc. After all, whatever they are going through is not as bad as the person they are caring for.
But it is so important to remember that you are going through something and it is so important to get your own support network going.
_________________________
CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!

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#117452 - 06/04/10 05:35 AM Re: Caregivers need to take care of themselves also [Re: SusanW]
Susan2992 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/04/06
Posts: 614
Loc: Pennsylvania
_________________________
Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2014

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#118552 - 06/26/10 03:30 AM Re: Caregivers need to take care of themselves also [Re: Susan2992]
homershoney Offline
Platinum Member (300+ posts)

Registered: 11/20/09
Posts: 396
Loc: spring, texas (houston)
wow, this article was an eye-opener. thanks for posting it Charm.
_________________________
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10

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#118624 - 06/28/10 06:01 AM Re: Caregivers need to take care of themselves also [Re: homershoney]
Elianne Offline
"OCF Canuck"
Senior Member (100+ posts)

Registered: 03/13/10
Posts: 126
Loc: Canada
I've had so many people, including doctors tell me to "be sure to look after yourself".
My comment is usually, "when?".
Anne
_________________________
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.

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#118681 - 06/29/10 04:17 AM Re: Caregivers need to take care of themselves also [Re: Elianne]
Elianne Offline
"OCF Canuck"
Senior Member (100+ posts)

Registered: 03/13/10
Posts: 126
Loc: Canada
Charm I've sent this post to Gordon, after he's lied to me about his weight (he's lost 5 more pounds), isn't trying with his eating and tells me he's sick of me going on about it and "creating crises" for myself. Quite frankly, I'd like to walk out and leave him to his own devices.
Anne
_________________________
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.

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#118717 - 06/29/10 09:54 PM Re: Caregivers need to take care of themselves also [Re: Elianne]
Coping in Texas Offline
Senior Member (100+ posts)

Registered: 12/29/06
Posts: 147
Loc: Texas
I'm about to agree with you Elianne - I'm about 2 steps away from ditching this whole thing! Jim and I had a come to Jesus meeting in front of his Dr. yesterday - she suggested that he get on anti-depressants and he told her "he wasn't depressed" and that I was just being hyper-sensitive to what we all know is going to be the inevitable. She told him that maybe he wasn't depressed, but that it might help me out a little and take the edge off for him - He told her that she was hired to treat his cancer and that mine and his problems would be taken care of at home - I shut down and then he let me have it again in the car. So, I told him that I needed a few days and I'd check in with him later; he started singing a different tune after I went back to work after the appt. He called and apologized and that he would work to think "happy thoughts" and stop taking all this out on me. He's only started doing this in the past month, but I'm telling, you I feel everyone's pain - I feel guilty for getting angry, depressed, worried and then when I'm out of sight, he is calling for me from another room saying that I don't want to spend time with him. His motto is "life sucks and then you die"! If I've heard it once, I've heard it ten thousand times!! I finally told him in front of his Dr. that if life sucks so much, then why are you working so hard to stay in it....he didn't answer - hopefully this will be the one and only time that I'll be like this with him, but I do understand that we have it tough - but we love 'em and would do anything for 'em...there's just a line that shouldn't be crossed and Jim crossed it for a while, but it looks like he got the message. I was just embarassed that it was in front of his Dr!
_________________________
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010

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#119395 - 07/14/10 08:50 PM Re: Caregivers need to take care of themselves also [Re: Coping in Texas]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2597
Loc: TN
Charm - It was so good of you to post the article on caregivers and depression. When my son and I were in the worst of his recovery, It was so very difficult to keep fighting the depression and the anxiety that was part of every day. Without OCF I don't know what I would have done - especially the times when Paul (my son) was at his most difficult. At one point I did blow up too, and yelled at him and then felt so guilty, when I left his house, I just sobbed and cried all the way home! But the tears brought a certain relief and my blow-up had a good effect on Paul, because he did start responding a little better. And to "Coping in Texas" don't be embarrassed with the doctor. I'm sure she understood that some of us don't even realize when we are depressed. It could be the doctor did recognize it and that's why she made the suggestion. Seems to me, it might be worth a try with the anti-depressants just to see if it helps your husband and makes him feel a little better. If we as caregivers get depressed, it's certainly not out of the question for our survivors.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#119415 - 07/15/10 01:39 AM Re: Caregivers need to take care of themselves also [Re: Anne-Marie]
debandbill Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/12/07
Posts: 939
Loc: Punta Gorda, Florida
I,for one, made it fine thru Bill's treatment, I guess, because I was on autopilot and he was a very compliant patient.

It was the following year that everything seemed to cave in on me. I guess I let my guard down..dunno, but found myself sad, emotional at the slightest event, extremely tired....just pretty much DONE.

It's better now and I recovered with no medication (although, I believe that that is a good option for some) but just thought that I would mention it so those caretakers that are in the throes of getting their patients thru the active treatment phase be aware that this just might creep up on them.

Deb
_________________________
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

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#119423 - 07/15/10 02:42 AM Re: Caregivers need to take care of themselves also [Re: debandbill]
Elianne Offline
"OCF Canuck"
Senior Member (100+ posts)

Registered: 03/13/10
Posts: 126
Loc: Canada
This is certainly what happened to me. Initially all you can see is how you're going to get your loved one through the treatment and you become completely focused on that. It's only now, 2 months after treatment, that the sadness and depression about the loss of our sense of safety and security, the changes to Gordon's health and uncertainty about the future have really settled in for me. I find myself feeling weepy and disconnected from everything at least once every day now, usually in the afternoon. I've gone back to work part-time and have tried to reclaim some of what used to be my own life, but I know things will never be the same for either of us, and it's a big adjustment to make.
_________________________
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.

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