Is this typical behavior?

[D&TM]

Ok, I have previously posted how upset I am over my siblings not pitching in on the care for my mom. Now, I have just accepted the role as primary caregiver & just try to savor our times together. I now am confused on my moms behavior...

She is rejecting anyones help but mine. I think it's her way of being passive aggressive in saying, " screw you! You are all so busy with your own lives & it's such a bother to come, then DON'T bother!" I think she doesn't want to feel like she's a burden to anyone & maybe I'm the only one she doesn't feel like one with?

Also, she says that she's had her little pity parties for herself, but they don't last long before she reminds herself how lucky she is to have the support & love & that her side effects are minimal compared to what they could be. However, she doesn't do much. She is basically only leaving her house if she has a Dr appt. I can't get her to even do a short trip to a local dollar store or grocery store. She says she's just not up to it.

My question is this: does the chemo really make you that exhausted that just getting in & out of a car completely drains you? Is she so tired because she's not doing anything or is she not doing anything because she's so tired?

She's such a strong woman & I hear her tell people on the phone that she's "fine" even when she's not. I even catch her lying to her Dr & nurses about the real way she's been feeling. So, I don't trust her when I'm not there to tell me how she's really feeling. I'm concerned that she's hiding a lot more than I know and that she's more sick than shes letting on. She even passed up going to my sisters house to just hang while her (moms) granddaughter gave birth to her great granddaughter! I would've thought that would've been something she just wouldn't have wanted to miss. I say hang at the house because we all knew staying at the hospital for hours during the labor would've been to much. But thought that once baby was here she would've been close enough to go on over to see the baby! Mom told us she just wasn't up to it. That she was "too tired"! Even though she sounded so excited talking to me earlier in the day about going. I just am not sure if she's depressed & that's why she's not leaving her house or if she's hiding something more serious?!

Please tell me if those of you who are patients can relate to her tiredness or if it seems like my moms is a bit excessive.

I would like to mention it to her Dr. But don't want to make mom feel badly about it; as if I'm calling her lazy or a liar etc.

Any thoughts on this would really help clear my mind.

Thanks

[Joppette]

Good morning friend,

Yesterday we met with my Oncologist to talk about my second round of chemo. My cancer was cured 4 years ago, but a new one is here and they need me to begin chemo again. Not that this has any bearing, but I was 52, healthy, active, very involved in my community and church, and just a very happy busy woman. He asked if I remembered what side effects I had the last time. How could I not forget?

The first round was not too bad. But each round after that got progressively worse. My husband was freaked out by how quickly I went "down hill". Like Katie said, chemo is poison. It attacks the bad guys, but the good guys get attacked too. Our organs that keep us vital are under seige, our muscles, everything. I know there are some that get through chemo ok, but I think they are blessed. A lot of us have the malaise. Excessive tiredness. No appetite.

My life changed dramatically after chemo. 3 days after infusion, I was laying on the couch, curled up in a fetal position, and stayed that way for another 3 days. The pain was horrible, my chemo attacked my muscles and they hurt bad. All food tasted like metal, so nothing was appealing, and my husband had to beg me to eat. I didn't think this would be an issue because I thought even if I didn't want to eat, I could always force myself. Well, try eating something that sits before you that you know is going to taste awful, smells awful, and get that to go down your throat without wanting to lose it. It was not good. I lost a lot of weight. While I was not obese when I began this, I did get very thin.

It seemed like it took a good two weeks before I finally felt good enough to even try to do something beyond laying on that couch. But by the time I began to feel semi-normal, it was time for another infusion, and it began all over again.

I did lose every hair on my head and body too, though that didn't affect how I felt physically. At the same time, when I showered, and sat at the table to put make up on (on a good day) I would cry because I looked like an alien with no eyebrows, eye lashes, or any hair at all.

Everyone responds to chemo differently. Who we bond with will depend on who makes us feel safe, and comfortable. When all else is not safe or comfortable, we will cling to the person(s) who make us feel that way.

I can't remember when your Mom started chemo, but know that this will get better. My last infusion was in October. I did have my large family over to my house for Christmas. Looking back, I shouldn't have, it was too much for me. But also looking back, I'm glad I did.

HUGS to you. This is tough stuff.

MI Judy

[Joppette]

Oh and I just read the tail end of Katie's post about never stopping asking her to go out and do stuff. I agree. While she may continue to say no, there may be a time (that will become so special to you) when she says yes. Celebrate that inside of you. Don't make it a big deal, because if she thinks its a big deal, she may decide to not do it.

I have a sweet girlfriend that just had a baby. She wanted to bring lunch, and give me cuddle time with the baby, and time to talk. I haven't even started chemo yet, but I don't want to do this. I'm exhausted trying to recuperate from the surgeries. If my head nods, I want to lay down immediately and take a nap. I'm pooped! I'm not sure i'll have the energy to hold her baby. Right now I just want to rest as much as I can, and am turning down a lot of invites. When I do go out, people are so happy seeing me out and about. Me too.

Anyway, hang in there. Everything is normal, and it's going to be okay.

MI Judy

[D&TM]

Thank you all so much. It helps tremendously to hear this from other patients. While it breaks my heart to hear about how it feels inside at least I can just accept it and let her do what she needs to without trying too hard or worrying to much.

I am truly sorry that you all had to suffer & wish everyone peace & love.

[jaminkw]

While it breaks my heart to hear about how it feels inside at least I can just accept it and let her do what she needs to without trying too hard or worrying to much.

I'm trying to figure out how to interject some hope into your Mom's future without taking this relief and acceptance away from you.

My husband urged me early on to please stop pretending and to tell the doctors how I was really feeling. I took his words to heart and tried to report honestly. But the truth is, I was not pretending. When I was talking with friends, doctors and nurses or just someone I encountered at the store, I automatically went into "I'm o.k." mode. My long distance friends said they always felt better after talking to me on the phone.

You know your Mom better than anyone. My childhood history and personality combine to make that response natural and normal. When I was growing up, you didn't get sick, you didn't go to the doctor--you sucked it up. Fortunately for us kids, it was usually something that would run it's course. I've been dealing with cancer and chemo a long time now. When I didn't care about leaving the house, my husband would gently nudge me into a short outing. If you can't get her to go, that's o.k. but keep offering (not pressuring). Eventually I realized I'm much better off making myself do things--even little things--that get me out and about. Sometimes the fatigue makes it a real effort. Sometimes it makes it out of the question. Sometimes I do it and it's great.

You are a dear daughter and your Mom is so lucky to have you and she knows it. I'm sorry for the lack of family support, however, because that puts the whole burden on you. There is something I would suggest that was the idea of a caretaker sometime ago--she would read uplifting and hopeful posts from here to her mother. When I'm feeling better, I'll try to write one for you lol. Hang in there. You are doing great.

Judy in KW

[ksflwrpetals]

I've had one round of chemo (second go-round of BAC, first was taken care of with surgery) and I am exhausted much of the time. When I get tired, I don't mess around...I take a short nap. I am fortunate in that my dr office is excellent in preparing us for what to come, as best they can. Plus, a friend stepped up to share things to expect as well, so as much as I can be, I knew what might come, such as the awful pain that comes sometime after treatment. I knew what it was, and took what I could pain-wise and wrapped up in a quilt and waited it out.

Keep asking your Mother is my suggestion, but don't push her into the car. Perhaps a short time on the deck etc on nice days would help some. It does me wonders.