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.) [/quote]
So take good care of yourselves, OCF caregivers. The patients need you
Charm
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.
Charm,
This post really hit home with me. In 2005 I found out I had OC for the first time. My father was diagnosed with dementia a few years before this (along with some other medical problems), and passed away in 2006. My mother�s health has continued to decline during the period she cared for my father and she now also has dementia plus a number of other medical problems.
I�ve been the secondary caregiver to my father, and the primary caregiver to my mother while dealing with my own illness. I do have a support network that has helped with my parents, but I still feel the guilt that I haven�t done enough.
So yes my stress level has been extremely high for the past few years � and I wonder if this contributed to my OC recurrence this year?
wow, this article was an eye-opener. thanks for posting it Charm.
I've had so many people, including doctors tell me to "be sure to look after yourself".
My comment is usually, "when?".
Anne
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
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!
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.
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
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.
I am the daughter of an oral cancer patient. Our family made it through the squamous cell carcinoma of his jaw and the radiation treatment. Then the return of the cancer and the removal of part of the lower jaw and 7 teeth. Now we all face the return of the cancer in the tongue. The surgery is scheduled for 9/23/10. My mom and I are the caregivers with some support from children and grandchildren. This one is terrifying to both of us.I just joined the support group and will be inviting my mom to join also. We need support in the form of information. How long before dad can communicate? How long until he eats? Will the G-tube ever come out? Mom just bought him an I-Pad to help with the communication.Any words of wisdom for us?
Amylea, welcome to OCF. Please start a new post so that this will get the attention it deserves. Most new members post under the heading of 'introduce yourself'.
The questions you are asking are ones that we cant answer. If your father had a mandibulectomy then it is a long road to recovery. Its not an easy operation to get thru, I speak from experience. With already having radiation, he has gone thru so much already. If he is now facing a recurrance and part of his tongue will be removed, then it will be another long recovery. If your father is a 3 time oral cancer patient, be prepared for a long road. Ive gone thru this 3 times and each time it took me longer to recover. Cancer wears a body down.
Do you know how much of the tongue will be removed? Is the doctor making a free flap?
The G tube will be determined by how well your father is able to eat and sustain himself. Its usually ok to be removed after he can maintain his weight for 2 months without using the tube. For now, he will depend on the tube for a while until he is able to eat again. Eating is up to him and if he is able to chew and swallow. He may need a swallowing test to make sure he is able to get food down into the stomach and not into his lungs. This cant be rushed.
Best of luck to your dad.
Hello Amylea... welcome to OCF but sorry you and your father are having to deal with this awful disease. This forum helped me so much be a better support person to my aunt. (my closest living relative). Bless you.
D
Hi Amylea - So glad you found this site. There is a wealth of information available and some very caring, compassionate and practical help. I don't know what I would have done without OCF when my son was going thru the most difficult time of his recovery. It's good that you have your Mom to share the caregiving and the support of children and grandchildren. Please let us know what happens.
Thanks for the response. Dad is getting really down. Hes having so much trouble swallowing and is in pain if he puts in the teeth made for him after the other surgery. So eating is limited to very soft foods and soup.
We have a big meeting with the medical team on the 13th. I wish there was an alternative treatment.The PET scan will tell us how much of the tongue is being removed.Very sad time for my family. My dad has suffered so much already.
Amylea, here is a list of easy foods for your dad. Ive been thru the mandibulectomy and know how bad it is. The recovery is such a long process. Trying to eat without teeth isnt easy. Unfortunately, I had my teeth removed due to problems from radiation. I eat lots of soup, yogurt, applesauce and tapioca pudding with whipped cream.
Its very important that your father gets at least 48oz water and 2500+ calories per day. Fighting cancer requires extra calories so for now the more the better. With the feeding tube, he should be using prescription formula. For extra calories, many here including myself have used Carnation VHC. Its 560 calories per can, a little thick so I add a can of water and use the overnight feeding pump.
Some patients struggle with depression and take anxiety medication. Its very common for cancer patients to need medication in order to deal with what is happening to them. Most cancer centers have a special therapist patients can talk to. Make sure you put this on your list of questions for the 13th meeting.
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
I just want too say that an integral part of my recovery 2yrs after treatment was and still is my partner and caregiver there is no words that can describe what she means to me.
I thought meeting her was enough wrong,she bore my four children still not enough,then the fight with cancer she was there through thick and thin there is something i can say thank you my love for being there even when i made you sick from chemo thank you.Oh by the way her name is michelle and she is a real angel just like all caregivers are.
2yrs post treatment
throat cancer
7 weeks rad
3 chemo
back teeth out both sides
peg in/peg out
reg check-ups
so far so good
Hey Frank....I'm a disappointment to me.....and hubby & ma & pa....reality hit me in August....28 Xanax....Rod called the ambos....still here...I'm a shit....was sooooo tired, 28 not enough.
I can SO relate to this.. i get that "life sucks and then you die" attitude from Matt too. Perhaps it's that we are the ones close enough to lash out at. In the line of fire and all...
It's complete bs though. I told Matt a few weeks ago, when we were discussing insurance needs and what will be taken care of after... he's giving his kids the majority... and they haven't done a darn thing for him through this. I am the ONLY one here and taking care of his ass every day.
I feel SO unappreciated and used. I need to start counseling for myself (he wont go) but I haven't the time... I must work full time, take care of the house, our 12 y/o, my second business from home... taking care of 'me' just doesn't seem possible sometimes. I just take another anti-depressant and keep going on auto pilot, praying it will all be over someday
Appreciate this first step for dementia caregivers who need caring for themselves. Thanks to other for notifying this world about caregivers hard work and risk factor about physical and mental point of view.... Hope people appreciate and help caregivers to caring there own health too.
This post was what, 2 years ago? This is exactly what is happening to me right now -- the post treatment caregiver fall apart. I just didn't see it coming. Hate it when that happens.
Yeah, well don't be like me - I got all sorts of autoimmune issues that almost crippled me for a while. Ugh. Remember the person in the mirror every morning needs good care too. Of course, that requires that you even notice the person in the mirror.
So sorry to read that you are going through "post treatment fall apart" Laura.
Seems that this happens to most caregivers.
May I suggest starting a new thread under Caregiver/Co-Survivor Forum and ask questions, vent or whatever it takes?
I suspect you will get plenty of help from people who have walked in your shoes.
Love and hugs (PM me if you like)
Gabriele
Thank you for caring about carers Charm...xxx