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What's the best caregiver tip you have learned?
Many of us have been caregivers in our lives - even those who are dealing with cancer now. You might have cared for a parent or a child or a friend who was sick, long before you had your own cancer. For those of us who have gone through the caregiver experience with someone who has lung cancer, it can be stressful, but some of us found tricks along the way that can be helpful to others.
Whether you are caring for someone with cancer now or have cared for someone else before? What did you learn? What do you think all caregivers should consider?
Since I was my mom's caregiver 10 years ago, I'll chime in about one of the things that I learned:
Sometimes you can't get everything done, and that's okay.
I remember one night when my mom was in the hospital, and I had come home from the hospital late after going there straight from work. It was late. I had eaten something fast food on the way home, threw in a load of laundry, sent some emails off to people and returned calls to others who were concerned about how she was doing, and then I found myself in the backyard with a flashlight. You see, it was mid-August in Virginia, and the tomatoes were ripe and needed to come off the vines. I had a one-track mind. It was probably past midnight, I had to be up at 6 for work, but I had to get those tomatoes.I told a neighbor the story later, and she shook her head and said "you know, you can let some things slide."
And she was right. When you are taking care of someone, sometimes you just need to relax in some areas a little bit more. I think we often make the mistake of thinking we can do twice as much stuff in half the time. Things change though. And that's not necessarily a bad thing - you just shift your priorities a little bit.
Okay - I'll start with that. Who else has learned something that you think would help others? I'll add more to the list later!
Amy
Tags: tips
Views: 228
Replies to This Discussion
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Permalink Reply by GADawg/MOD on -
Great topic, Amy. Oh my gosh, I've learned SO many things since becoming a cancer caregiver- about cancer itself, about family dynamics, about myself, about my friends, etc. One thing I've learned as a caregiver to my mom is that I CAN'T CONTROL the outcome.
That may sound really obvious to some, but it wasn't to me. I was in denial (and may still be a bit!) about that. I'm a control freak, and everytime I've put my heart and soul and effort into something, it usually pays off and I get the outcome I want. For example, my beloved cat became ill with kidney disease. The vets gave her a few weeks. But I researched like a crazy person, learned how to give IV fluids myself, and kept her alive for 8 more years. I truly believed I could cheat death. And I did, for 8 years. But my cat still died, although at the ripe old age of 18. The point is, we may delay certain events, or win battles along the way, but the big things are truly out of our hands. My mom is mortal, and so am I. No matter how much research I've done, how many scans and tests I've scheduled for my mom, she still ended up in a wheelchair. That wasn't in my plan and I couldn't control that. And I know now I can't control the results in the end. A lesson probably lots of others already know, but it took me some time to get there as a caregiver. Do all you can, do the best you can, for your loved one, and know that the rest is out of your hands. There's actually some comfort in that, knowing you're not literally responsible for someone else's life in the end. It gives you a bit of breathing room, which is much needed as a caregiver!
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Permalink Reply by KDDHope on -
GADawg-
Being that I still consider myself somewhat of a newbie in the whole cancer caregiver role. If you recall my father started treatment back in June. I am happy to report that we are almost done, 12 more radiation treatments to go. Not that I am counting or anything! LOL...I really couldn't agree with you more. I learned very early on that I can not control everything. Even though there are times I want to. I also know that I can not physically do everything. I need to give my dad his independence and allow him to do things for himself given the fact that he can. I realize there may come a point in time when he may need my help but for now I need to allow him to do things on his own. I suppose it is the protector in me that wants to ensure he has everything. I look back just to a few months ago and realize that I was somewhat of a loose cannon when he was first diagnosed because I was a ball of emotion. Once the reality set in that this is the hand we have been dealt we were able to deal with it.
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Permalink Reply by GADawg/MOD on
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Hi KDD! You're right, your emotions evolve as your role as a caregiver progresses. It does take time to get over the initial shock of it all and realize this is your new reality. It's amazing, though, how quickly things become our new normal and we just get on with things. I'm glad to hear your Dad is doing well and that you are, too!
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Permalink Reply by Melissa on -
KDDHope,
As as 58 yr. old cancer patient with probably 6-12 months to live I want to say thank you, thank you, thank you for realizing the need to let your Dad have his independence when possible. It drives me crazy when my friends/caretakers don't let me do the things that I am still able to do. I have already given up so much that I desperately want to do for myself what I still can. I appreciate the fact that others want to make things easier for me, but I am not yet helpless and need, for my own self-esteem, to perform the things that I still can do. Again, thank you
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Permalink Reply by Ann on
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Amy, thank you for starting this discussion. Being relatively new to this caregiver role, I could use all the tips I can get, and it helps to know that others have, and are going through the same challenges. Since my husband was diagnosed this past May, there are times when I can't believe this is my (our) new reality. I always have a "to do" list that never gets done, and I've learned quickly that some things will just have to wait.
GADawg: I agree that "not having control of the outcome" is the toughest thing to deal with. My husband's second scans showed more lesions in his lungs, etc. so we must go to plan B because the first line of chemo is not working. I feel as though we have lost precious, valuable time and that we're always in a race against time. Meanwhile, you're at the mercy of doctors' and hospital schedules, so nothing gets done quickly. It leaves me feeling quite desperate sometimes. People always say, you need to take care of yourself, and get some rest, etc. This is true of course. But as my co-worker said, it's hard to do this when you're in the midst of fighting a war.
The one thing I make a point of doing these days is appreciating the little things such as watching TV together, and just creating a different kind of normalcy. Also, many say how important it is to keep a positive outlook, so I think it's worth repeating.
Ann
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Permalink Reply by GADawg/MOD on
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Hi Ann,
Yes, I find it difficult to do things for myself sometimes when I should be spending time with my mom. It's like getting a manicure in the midst of a war, like you said! But just taking time every now and then for yourself, even if it's something little, will keep you afloat.
And speaking of the little things, like watching TV, you're right, those become so important! A trip to the mall with my mom on a day where she's feeling good and can get out means the world to me! I'm sure I took a million of those trips before for granted. Being a caregiver does make you grateful for every little thing and look at the world in a new light!
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Permalink Reply by famousperson on
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It is SO important to take some time for yourself each day. Even if it's only 15 minutes (1/2 hour is better). Go to a quiet place and just sit. Meditate, cogitate, read (poetry is good at a time like this), do progressive relaxation. Or close your eyes and just rest.
You don't just owe it to yourself, you owe it to the person you are caring for. Your renewed (somewhat), refreshed (somewhat) spirit will show in everything you do for them. And this little time off can help you stay sane.
The time I took for myself helped immensely in allowing me to keep things in perspective. This was important especially when I was particularly run ragged and had begun to resent my mother (who was slowly dying and certainly couldn't help it). I could think about what role I was playing and why, but maybe more importantly, I could spend time with the THOUGHT of my mother, rather than my only interaction doing yet one more care taking "chore."
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Permalink Reply by Melissa on
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From the point of view of a cancer patient with 6-12 months to live I say "Go for it!" when it comes to doing things for yourself. Parents are usually better parents if they take time for themselves/each other. You will be renewed and a better person to be around if you don't neglect yourself. Don't feel guilty; depending on how ill and the frame of mind of the person you are daring for they will probably enjoy your company more if you don't forget to take care of yourself, too.
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Permalink Reply by hopegirl on
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Well....my biggest tip sadly in in regards to when treatments have stopped/hopsice care (or several tips!). I found that for so long we looked for any bit of hope (or delusion, as I see now) that my mom was going to beat her stage IV liung w/brain mets dx. EVen though they were deeming her treatmjent "palliative", we insisted she do it. And after two weeks she was "gone"...no resemblance of her old self...there was no "good" time and I wished we would have just accepted the dx and enjoyed the time we had left instead of dragging her to and from the damn hopsital in the ice and snow only furthering our dellusions that she was going to get better and making her so, so sick.
Also...we started hospice too late. And this is my biggest regret. She was ready but WE were'nt...and it WAS NOT ABOUT US and I wish we could have seen that at the time.
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Permalink Reply by jc123 on
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In that same vein, I was a care taker for two of my dearest friends, literally moved in with them until they died. In all our optimism we cannot ignore the fact that most terminal people want and need to talk about dying and say the things that has been left unsaid. Please, please don't deprive then of this last chance to get things right. Also don't deprive yourselvs of being a part of the most intimate time two people can share. I was there for their last breath and also my Mothers and Dad. I consider it an honor to have shared their last breath on earth. Itr is my strong belief that the terminal patient always knows it even if noone has told them and they stay quiet to not upset their loved ones......let them say whatever they need to....
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Permalink Reply by hopegirl on
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Could not agree more. If we as family members become more accepting, then maybe our loved ones will know it's okay to be accepting, too. What an honor to help God shephard my mom home...I was there everyday and staying over when it was my turn..I cherish those days and never knew how much they would mean to me.
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Permalink Reply by Merry on
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Hi Amy- I found that when I was being taken care of it was important that things be done in the way I was most comfortable, not the way someone else wanted them done. And also asking how someone wants it done makes a big difference. Even little things like washing and hair care need to be done with the patient in mind. If they are made to feel special in this way than they'll feel better and their spirits will rise!! More hope!!!
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