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Caregivers fight


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I am new to the site and to this fight. My mom was diagnosed with stage IV NSCLC. She has tumors in the brain, adrenal and mets to both lungs. Her largest tumor is over 9cm large in the lower rt lobe that extends to the mediastinum and onto the bronchial artery with no filling defects. She has just finished her third chemo treatment and I have taken on the role of primary caregiver. When she was diagnosed in early Oct of this year (2011) I immediately wanted her to come live with me and my family. But, she is a very independant woman and was still working. So, she had benefits and decided best if she stayed near by. She first thought she would continue to work. But, she quickly discovered how many Dr appts she would have and how completely fatigued she would be. So, has decided to take FMLA. But, is able to retain her insurance. She feels most comfortable in her own environment. Who can blame her, dont we all.

However, I live in another state and so when it is time for her treatment I leave my son and husband to come stay with her and get her to her following appt's. My problem is this: I have other sisters. One lives only 30 min from my mom and the other lives near me. They do not get along and only are civil to each other in presence of my mom. I have not only had to care for my mom, but also mediate between the two of them. At first, I was accused of trying to "do it all" and acting as if I was her only saving grace. Now it's like they assume I can do it all and they don't have to because I am there. I have missed several important days in my own families lives in the past two months- birthdays, weddings, my own anniversary, holiday parties etc. I am not complaining and my husband and son are very supportive and do not complain or make me feel guilty either. I told my mom that none of those things were more important than her and she is my main priority. But, as of late I find myself being very disgusted with my sisters attitudes. I know everyone deals with these types of issues differently. But, they seem to be going on with their normal lives and almost refuse to sacrifice any family activity or even something like a HAIR appointment to spend the time with my mom. I took on the role I did because my mom is my best friend, has given me so much support my entire life and is definitely deserving of any sacrifice I make. I also do not have a full time job as do the others. But, am I wrong to think that they should want to spend as much time with mom as possible? When they are asked to stay with her, they don't show up at the time they agree to or sometimes not at all. I am absolutely terrified that mom will have a stroke or seizure when she is alone. She won't be able to call anyone and therefore suffer irreconcilable damage. One of my siblings is willing to stay and care for mom when it fits HER schedule instead of making her schedule fit mom. Then accuses me of keeping her out of the loop.

I am so angry at them for not taking advantage of this time with mom and for not giving mom the same attention, love and care that she has always given everyone important in her life.

I haven't said anything like this to them about their attitude in a direct manner because I do not know if I can do it in a tasteful manner. Am I wrong to feel this way and if yes or no how can I deal with all this anger?

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deal with Anger like this.. grab a dozen eggs. Write Cancer on every one of them. go Outside and throw them at a fence tree or Rock. Get anger out of system!!

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Hi D,

I am so sorry you are having to deal with this, in this way. I had a situation like yours, but not exactly. I have 3 brothers. We all live in the same town. However, when my Mom was dx with Stage IV SCLC, they just told me that it was "my problem". They were not willing to engage in her care, and made it painfully clear that it was "my job" as her daughter. I worked full time (so while you live farther away, we both had challenges, me trying to work, and you trying to get there to be there for her, both challenging).

It is so good to know that your husband and children are supporting you, because this is a tough situation. I hate to say this, but you will have to just accept your sisters where they are. You won't change them. For whatever reason, they are not engaging. It could be fear. It could be many other reasons. Caregiving is a special task, meant for special people.

All I can say to help you is this; you will have precious memories of Mom that will sustain you. Your sisters don't realize that this time with Mom may be short. I hope you don't mind me being frank and open with you. Do all you can to help her have the best quality of life as possible. You can't change them. So if you can, just let it go. I had to with my brothers, and while it hurt, I was able to forgive.

If you ever want to talk, private message me. I completely understand where you are at and how frustrating it can be.

Judy in MI

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No, I don't mind you being frank. I really wish some more people would be. I find myself thinking that I only have a few months left with mom & then I will read a survivor's story and think that maybe I should be more optimistic. I am confused on that subject. Basically not sure which way to feel. I am thankful for every minute I get with her and especially when she is having her good days. It breaks my heart to watch her almost disintegrate in front of me. But, try not to show my concern. Another subject I am confused about. Do I play it off like no big deal when she starts one of her major coughing episodes where she is puking up mucous for 30 min, or do I run to her side and wash her face, hold her against me & tell her how very sorry I am that she is suffering so badly? I am trying not to smother her, but I don't want her to think that I don't think any of her pain is any big deal and she should just suck it up!

As for my sisters, yes you are right, they are missing some quality times that they will never get back & if the battle is lost, they will be the ones with regrets. What angers me so very much is when I hear my mom say things like, " it's ok if they don't come because I'm use to being treated that way."

REALLY! No mother should EVER have to accept that feeling of nonimportance. Especially by their own children!

I do want to tell you that I am very sorry that your brothers treated you and your mom with the same regard & you are a very strong person to say you forgive them. I have not mastered the forgiveness thing. I pretty much cut people out of my life when they have hurt and disrespected me or my loved one to this degree. It's my safety shield and I am just too vulnerable to let myself get hurt repeatedly by people whom you are suppose to trust with your heart. I appear very strong and stable on the outside to most. Maybe even to the point of cold and unaffected. But, on the inside I crumble and fall apart easily. So, I can't afford to put my trust in those that will fail that trust repeatedly. Maybe I expect too much from those I allow inside my walls. But, it's my basic survival strategy and the only real way I feel I can function.

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Oh my goodness....if a cyber hug were possible, you'd be getting it. While we want to try to be optimistic, we also have to face the facts. I obviously wanted my Mom to survive, but reality was that she would not. My Dad and sister had already died from brain cancer, so I don't know if that helped me or not, but I felt rather realistic about her disease.

Just be yourself when it comes to concern about her health. If she is coughing and puking, I think wiping her brow, and helping her through it would be good. I've been there. Someone that loved me so much to help me through it would have been good. I don't know if I told you that I have lung cancer. I do. I"m blessed to be doing so well, after already losing my Mom. But it is back, so can speak not only from a caregiver perspective but also as a patient.

I hope you can find forgiveness. I'm not trying to put a guilt trip on you. Seriously. It is only in forgiveness that we are freed from the trap of anger, and guilt.

I understand your pain. I hope you know that. Hang in there.

Sending love and care with this.

Judy in MI

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