Caregiver Frustrations (!)

[KatieB]

It's the one thing we feel guilty talking about....being frustrated.

At lung cancer, at ourselves....and (shhhh) even at our loved ones we are caring for.....

This is the one place you are safe venting about those frustrations.

What are some of your frustrations? How do/did you deal with them? Did they affect your relationship with the patient/your loved one? Did they affect your own health? Any advice you'd give someone going thru some of these same frustrations?

Let's hear it !

[Andrea]

My biggest frustartion was not being in control of the disesae! And not knowing if I was doing all the right things.

[Nick C]

My frustration was around mom's independence and fighting me on accepting some of the things that needed to be done.

For example, she didn't want me driving her to radiation, I wanted to insist that I drive to all the appointments.

I don't have great insights on how to deal with the independence...she was headstrong until the end. The decadron didn't make her any less headstrong either.

[KatieB]

I was frustrated about the fatigue and not eating...

Selfishly at first I didn't know that the fatigue was cumulative and that with some chemotherapies and radiation it just gets worse and worse....I thought he was experiencing emotional distress and choosing not to be a part of the world and life...when in fact it was physical response to this treatments and he really had no choice in the matter. I learned soon that his body was struggling with the toxic treatments and side effects...instead of expecting him to want to go out or "do" somethings, we brought the dinners and get-togethers and entertainment to him... the quality of our time together was so good and precious after that.

With eating...again, at first I thought he wasn't "trying" until I realizes that some treatments make eating almost impossible and some treatments eliminate all feelings of hunger....add that to nausea side-effects and then I definitely understood why he couldn't eat and was losing weight.

I learned about appetite enhancing drugs and about "grazing" and placing ready-made packaged foods at the ready...so that he could take little bits and bites throughout the day.

I think as soon as we learn these types of tips and understand more about the disease, the frustration is eliminated and time is better spent with our loved ones.

[mjb]

I can't believe there aren't more frustrations listed here. Maybe it's just too time-consuming to sit down and list them!

Frustrations:

Health professionals who ask you over and over what prescriptions you're on then turn around and prescribe something that interacts unfavorably. Be sure and ask your pharmacist for interactions.

Lack of support for lung cancer patients and their families - apparently we don't need the same support that people with other kinds of cancer do.

People whose first question is "Did he/she smoke?" Really. What difference does it make?

If someone has a heart attack do you immediately ask "Did they eat a lot of fatty foods?"

If we spent as much time focusing on the cure as the blame game, maybe we could do something about lung cancer.

Not enough time to learn all the things that might help. Time to shop for healthier foods, time to learn to fix new dishes, time to mow the yard and work in the flower bed, time to repair all the things that are falling apart.

Not knowing how to make the patient understand that they are just as valuable even though they can't do everything they use to.

Grieving over the fact that they can't do everything they use to and trying to take up the slack.

Feeling the need to cry and pitch a fit and not wanting to do it in front of your loved one.

Listening to people complain about trivial things like they're really important. I know, I know, we were all there at one point but it doesn't make it any easier.

Totally frustrated that there has been little progress in treating SCLC since my husband was diagnosed. He told me that day that he would still be alive in 5 years and that there would be better treatment. It's been 7 years and I can't see much progress.

Beating it and then having to start beating it all over again.

That's my starting list:) I am trying so hard not to fall apart that I thought it might help to sit down and vent.

Oh, another one. People telling me how strong I am and that they don't know how I do it. Really? Do I have a choice? When the person I love most in this world is just gradually fading away?

There are many things I'm grateful for that I never use to think about but sometimes it just all gets to be too much.

OK, I'm through for tonight. Thanks for listening.

[KatieB]

Thank you so much for writing all these out...I felt every one of those frustrations to some degree too....

SCREAM it out...let it out...cry in the shower and find good friends who will listen and if you don't have those, we are right here for you.

I hope it helped a little to type those out.

It's great to be positive and "strong" but you're right...there's no other choice but to do it with one foot in front of the other.

Please know that it's because of our experiences as caregivers (and all these frustrations listed above) that I am working hard to come up with an online resource for caregivers- it's such a whirlwind and it's so emotional...it would help to have things listed out, suggestions, advice, resources and information and practical help so that caregivers can help their loved ones survive and help themselves so that they can't keep doing all the amazing things they (YOU) do.

BIG giant gentle hugs for you tonight....I am hoping things smooth out and get better for your husband soon. Be gentle on yourself, ask for help from friends and family and do something that has NOTHING to do with lung cancer...even for just several moments...it does help sometimes.

((hug))