Invisible Caregiver...

[cmewrrie]

I'm glad this thread was started. So much here that I relate too. As a caregiver I often feel the incredible stress and worry and sadness and emotional fatigue that comes with this is still so small compared to the suffering my husband and othe patients are going through that it is selfish to even speak of. And yet I still have my share of secret crying spells in the car.

Glad to know I'm not alone. My warmest wishes of strength and encouragement go out to all of you, caregivers and patients.

[canadiandaughter]

My mom gets the brunt of it from dad. He is so grumpy some days, and rightly so, he has cancer! But she does not deserve the treatment she gets some times. I try to go as often as I can to be the buffer for her, but its hard being 3 hours away. Yes, this is a family thing! We all have cancer in some way. Yes, my dad is the one that is taking the treatments, dealing with the side effects and thinking about his death, but we have things going on to! We have to come up with ideas of what to feed him that might taste good and not hurt his mouth. We try to plan things so that he has lots of rest time. With all the stress, my mom can't keep track of dates or appts. We are watching, worrying it is alzheimers, but we think it is from the stress. When dad was in the hospital over Easter and I went to stay with her, she was much better. Mom is scared to be gone anywhere too long as she worries about him. She is thinking about what will her life be like without him! I think every day what my life will be like as well as we are very close. I have never lost anyone this close and I am scared shitless! I know he is 80 and it is coming cancer or not, but it still scares me. I cannot imagine the pain and heartache the caregivers have that are dealing with their children or middle aged patients. One life line for my mom is a dear friend who has been down this road with her own husband. Luckily she has her to vent to and she gets it!! For me, I have this board. Our own personal support group accessible 24/7!

[Laurettas]

Canadiandaughter, I would watch your mom carefully and, if possible, relieve her burden as much as possible. I knew 3 women who were caregivers for their husbands when they were in their 60's and 70's. All three of them went into severe and permanent dementia within a year or two of their husbands' deaths. There had been no diagnosis of dementia before their husbands' illnesses. Being a caregiver for and then losing a spouse is an extreme stress--these women made me realize just how extreme.

[yiayia]

I'm glad this thread was started. So much here that I relate too. As a caregiver I often feel the incredible stress and worry and sadness and emotional fatigue that comes with this is still so small compared to the suffering my husband and othe patients are going through that it is selfish to even speak of. And yet I still have my share of secret crying spells in the car.

Glad to know I'm not alone. My warmest wishes of strength and encouragement go out to all of you, caregivers and patients.

I don't understand why you think that as a caregiver, you feel that even speaking of your own suffering is "selfish" and that your suffering is "so small" compared to your husband. Who quantifies suffering? My anquish and pain are very, very real. So is my wife's. Different, but both real. And both requiring care. I just found a local Cancer Support Center in my area where I can actually talk to other caregivers and my wife can talk with other people living with cancer - in person. They also offer mind/body classes, nutrition, etc. at no charge to us. It took me almost a year to find this place. It also took an emotional breakdown on my end to find it. It is NOT selfish to speak of caregiver suffering. It is selfish to suffer alone. If I can get support from others going through the same thing, maybe I can be a better caregiver to my beloved. I don't want to be a basket case in a parking lot.

[cmewrrie]

I'm glad this thread was started. So much here that I relate too. As a caregiver I often feel the incredible stress and worry and sadness and emotional fatigue that comes with this is still so small compared to the suffering my husband and othe patients are going through that it is selfish to even speak of. And yet I still have my share of secret crying spells in the car.

Glad to know I'm not alone. My warmest wishes of strength and encouragement go out to all of you, caregivers and patients.

I don't understand why you think that as a caregiver, you feel that even speaking of your own suffering is "selfish" and that your suffering is "so small" compared to your husband. Who quantifies suffering? My anquish and pain are very, very real. So is my wife's. Different, but both real. And both requiring care. I just found a local Cancer Support Center in my area where I can actually talk to other caregivers and my wife can talk with other people living with cancer - in person. They also offer mind/body classes, nutrition, etc. at no charge to us. It took me almost a year to find this place. It also took an emotional breakdown on my end to find it. It is NOT selfish to speak of caregiver suffering. It is selfish to suffer alone. If I can get support from others going through the same thing, maybe I can be a better caregiver to my beloved. I don't want to be a basket case in a parking lot.

Very true and something I guess I need reminding of from time to time. I am fortunate that my personal counselor that I have been with for years is a 7 year colon cancer survivor. It adds a level of understanding to things and she does remind me that in order to care for my husband and family I must take care of myself. Part of that is coming here and getting information hope and encouragement from the great members of this forum

[Laurettas]

In my mind being told to "take care of myself" is just one more overwhelming task that I have to add to my already overburdened life. What I think would be more helpful is if there were those in place to take care of the caregiver. That should be one of the questions asked of families of those with severe illnesses like cancer. Do you have a support system? If not, someone needs to step in and provide one. When you are a full-time caregiver, particularly to a terminal patient, there is no time or energy left to take care of yourself.

[canadiandaughter]

Canadiandaughter, I would watch your mom carefully and, if possible, relieve her burden as much as possible. I knew 3 women who were caregivers for their husbands when they were in their 60's and 70's. All three of them went into severe and permanent dementia within a year or two of their husbands' deaths. There had been no diagnosis of dementia before their husbands' illnesses. Being a caregiver for and then losing a spouse is an extreme stress--these women made me realize just how extreme.

Thank you. Yes we are watching her closely. I spent the whole summer there last year and will do the same this year if need be. My daughter has recently moved in with them and we try to have someone checking in with them often. I'm very fortunate working in a school to have great holidays. It helps

[Laurettas]

So glad to hear that, Canadiandaughter. Sounds like you are all aware of your parents' needs. That is wonderful!

[andy21]

Caregiver is a tough job, but the people with Big C is even tougher.

I think there was an article on how a cancer patient is always right, and the primary caregiver has the second priv on being always right and secondary caregiver has the 3rd priv on being always right, and something like that.

[JuicysJoi]

*******But the unpaid FMLA time has been a huge hit on my income this past year and I have had to cut out most of my "me" expenses. My formerly blond bob has turned into a raggedy dishwater-brown ponytail. I re-sewed the hem on my aging work pants for the third time this weekend. You are right, it is hard to feel upbeat when you are broke and feeling ugly.********

Oh! You have described me to a tee! When I started this thread, as soon as I hit "submit" I felt a deep shame. It is hard to admit these feelings but I feel so much better knowing I'm not alone in my frustrations. I guess we do make it a contest sometimes of who has it worse and ( medically speaking) the cancer patient wins the contest hands down. I would never seek to trivialize the brutal suffering I have watched my father endure from the ICU to his current troubles. He is afraid of dying and hasn't come to his place of acceptance yet. It is not a contest though and I'm realizing that expressing my frustration is not blaming my dad....it is CANCER that is to blame. I do still do my best to suppress my problems around him....and with no support to speak of, it just had to come out some way. I tell myself that one day I will be able to reverse the damage, lose the weight, visit the salon again, get on a schedule again, make up the lost income. I tell myself I can make it, I can do it.... I have to. I'm glad to read that I'm not the only one who has parking lot meltdowns....lol! I know my father is grateful for my help because I know where he would be had I not been helping all these months. Knowing and hearing it said to you though, are 2 different things. I guess I've been wishing out loud to hear it from someone. I appreciate the supportive words from everyone and I'm so glad I found this site. Great information and some support (finally).

[aja1121]

I totally understand. I hesitated to post those thoughts as well. In the scheme of things, yes, it is completely unimportant. But when you are giving everything you have (emotionally, physically, financially) to support your loved one, it is hard to lose the small things that helped lift you up and feel good about yourself.

I think caregivers suppressing frustration/anger from the patient is a big contributor toward feeling overwhelmed... especially if the patient does not hesitate to express their frustration/anger to the caregiver! Even before cancer changed everything, I visualized stress in my life as drops of water in a cup. The sources of the drops might be completely unrelated, but at a certain point, that cup is going to overflow. On this journey, venting to each other does not help my husband and me, but I have found that talking with others allows me to dump some of the water out and make more room. I have tried to vent mostly to my closest girlfriend, and I know my husband does the same with a couple of his close guy friends. As long as they are willing to listen it takes some of the pressure off our relationship.

[ktwmn]

It is hard to feel gratitude when you have cancer. This is all so complicated.

[JudeD59]

Look, I'm human. I have ugly feelings sometimes. I love my husband of 33 years. He is my best friend and soulmate. And he works really hard to take care of me. But do I sometimes resent how easily he can jump up to get something for me when I'm so exhausted I can barely move? Hell, yes. And do I sometimes look at the huge plate of food he is about to enjoy without having nausea or lack of appetite or worrying how the food will get stuck in his colon and make going to the bathroom hell for the next 24 hours?? Oh, yes I do. And when he goes into caregiver mode, he has a tendency to forget to also spend time in husband/best friend mode. He spends so much time and energy doing things for me as a patient that he forgets to just be with me, talk to me, joke with me, stroke my hair, or give me a hard time about normal things like leaving lights on or using the last of the milk. And that can be very lonely. I have to remind him occasionally that I need him to be my husband and not just my caregiver and to talk to me and not just about me to others.

So, my husband is human, too. I might be the one with the cancer, but I wouldn't blame him if he is pissed off, frustrated, and resentful sometimes. We raised four daughters and they are all adults now, so this is our time to have a little fun as a couple without worrying about the kids' schedules. We had a lot of things planned for this next year, big and small. Most of that is out the window or at the very least, postponed. I would understand if he is disappointed to be spending time in oncologists' offices and the hospital instead of going out to nice dinners or going fishing together or whatever. He wouldn't be human if he didn't feel at least some resentment occasionally about working hard all day and then having to stop to buy groceries or cook dinner or whatever because I'm having a bad, bad day. I don't begrudge him those feelings or think, "What's he have to complain about? I'm the one with cancer!" I know this is hard on him and the hardest part is that he is terrified of losing me. I know that fear weighs on his mind and affects his own stress levels and his own health. He is far from invisible to me. I spend a lot of time worrying about what this battle is doing to him and to us.

My husband never, ever complains about any of these things. He never shows resentment and he bends over backwards to make sure I have what I need at all times. But I wouldn't blame him or judge him if he was feeling it and keeping it to himself or talking about it with close friends. I would be thrilled if he talked about his feelings with me, but I know he doesn't want to add any worry or stress to my already large load. This stinking cancer was like a bomb dropped in the midst of our family and friends. I might have taken the worst of the damage, but no one in our life was left unscathed.

It's good that you can come here to let out some of those feelings, those normal, human, unselfish, understandable feelings. You shouldn't feel bad or guilty about feeling the way you do. You should just feel--human. You're not invisible to me.

Judy

[aja1121]

It really is complicated, and I wouldn't wish it on anyone. Some people can let words roll right off their back. I've never had that ability. So for me, "please" and "thank you" and not being yelled at for no reason is important. I believe it's possible to be polite even if one wants to scream and rage. RobM said in his post yesterday that he always tries to smile when he talks to others. While mustering up a genuine smile is sometimes tough, I just try not to make the day worse for anyone who has to interact with me.

[cmewrrie]

Just bumping this up to check in with fellow caregivers. I know I'm having a tough time for some reason which makes no sense because we are in the presuurgery break. Maybe too much time to think. Who knows. Anyway hope everyone is finding ways to be as well as possible. Feel free to PM me if you need another caregiver to vent, chat, whatever. I'm finding it's a unique role with aspects that even the closest friends and family can't quite understand.