This is tearing my family apart

j_martin

Hi. I'm a newbie here and was hoping to get some advice. My mother is fighting colon cancer and the whole experience is ripping my family apart and I feel like I'm going to lose my mind.

I'm going to put it all out here and hope that no one judges me.

I am married (marriage is strong), have 1 son who is married, 2 young grandsons (2nd born this past may), and I work full-time. I have 3 sisters - 1 older who is married and lives in another state, and 2 younger who are both divorced, have younger kids and live within 5 mins of me.

My mother was diagnosed with cancer this past April and underwent emergency surgery 4 days later when her bowel ruptured in 2 places. Her original diagnosis was ovarian cancer so that oncologist did her emergency surgery but when her pathology reports came back as stage 4 colon cancer, she was referred to another oncologist to treat her. Her cancer, which had matastisized and spread to her ovaries, bladder, spleen, abdomin wall, diaphram and lungs was compared by her doctor to taking a handful of sand and throwing it against a wall. That's how bad it had spread so who knows how long she has had it.

My mother lives on her own in an active 55+ apartment community, also about 5 mins from me, and has worked for the same company for the past 19 yrs, which is conveniently located across the street from her apt (she gave up driving almost 25 yrs ago due to a fear she suddenly developed).

After her surgery, my husband suggested that my mom come stay with us during her recovery since we have 2 spare rooms. My older sister came to stay with us during this time to help out since she was not working and the rest of us have full-time jobs. The original time frame was 4-6 wks but it has now been 3 months. My mom has an ostomy bag from her surgery and we have been told that there is a chance of having it reversed but that there is also a chance she will have it for the rest of her life. We've had nothing but troubles with this. First. my mom refused to even learn how to clean and replace it. She told us that her ostomy nurse said we needed to learn it before she would teach my mom because it was more important for the caregivers to learn. But according to her ostomy nurse who comes once a week, that is the complete opposite of what she told her, and said that teaching my mom was like trying to teach a 1st grader how to do it. Then on top of that, we've had issues with the bags leaking, the gasket device that attaches the bag to my mom causing ulcer-like sores, and now the stoma prolapsing. Her oncologist refers her to see the original oncologist who performed the surgery only to have that doctor refer to out to her GP. She has been given a new, much larger bag to see if that helps, but now we're back at square one with my mom having to learn to change the new bag which is much more difficult to put on. Needless to say, when the ostomy nurse is not around, my older sister has assumed the duty of helping my mom replace her bag every few days. Until my mom can do all of this herself, she and my sister are with me. My mom has a 1 bdrm small apt that would not accommodate both her and my sister comfortably.

While my mom claims to be very independent (she tells people ALL THE TIME) she really can't do anything herself and has 2nd guessed everything she does for years. This has gotten 10 times worse since her diagnosis. She is also extremely forgetfull, has opened the fridge and then just walked away leaving it open, and repeats questions 3-4 times. It's like she's developeed dimentia along with the cancer. She also feels the need to know what we're doing at all times and thinks she needs to be in every conversation. She's afraid to be alone now but then claims she feels trapped and wants her independence back. On top of everything, my mom has always had tendencies to be rude and conversations seem to get turned around somehow so that that it revolves around her. This has also gotten much worse since her diagnosis, so much so that most of her friends have stopped calling or coming around (her nurses in the hospital even complained). My sister and I try our best to be patient and understanding with her but it's just wearing on us. I personally, deep down inside, am mad at my mom because she felt colonoscopies are unneccessary so she never had one. Her cancer may have been detected in time and we wouldn't be going through everything we are.

To give you some dynamics of my family, my 2 younger sisters are from my mom's 2nd marriage and much younger than my older sister so they weren't really raised around her and aren't that close to her. My older sister likes to cuss (the F word is her favorite) and that offends my sisters. There is always some kind of arguement between them all and I feel like I'm in the middle trying to be the peace keeper. They feel my mom should be forced to move back to her apt even though she's scared to death to, and my sister go home. They figure this would force my mom to 'sink or swim' when it comes to taking care of herself and that my older sister and I are "enabling her to act like a child". Ive tried to explain to them that it's not possible right now but they don't want to hear it and refuse to come to my house to see my mom or to help with anything as long as my sister is staying there. They are mad at me for allowing my sister to stay and have stopped talking with me. Oh, and on one more note - my younger sister is a nurse at my mom's oncologist so she figures she'll just see her at her appts.

 I work 5 days a week and feel guilty if I don't come home afterwards to relieve my sister so I have stopped going to the gym or bible studies. I never visit with my friends, hardly see my grandsons like I used to, and I even gave up going on my missions trip to Haiti which I go on every july so I could be home to help out. This isn't easy having my mother and sister live with me, and I feel like I've given up so much, yet somehow, I'm the bad person when it comes to my younger sisters. My house no longer smells good due to the ostomy situation, I've moved things around to accommodate my mom and sister's things, and no longer have any privacy with my husband unless we lock ourselves in our room or go somewhere.

When my mom was diagnosed, I had friends who had been through having a family member having cancer and they told me that no matter how strong a family is, cancer can tear it apart. Even though I know it never will, I just want things to go back to how it was before the diagnosis, before everything came crashing down. Is this possible? How do you mend a family when there is so much hurt/hate and no one wants to compromise? Am I asking for too much?

 

 

 

 

 

 

 

 

Lovekitties

Sorry for the entire situation

Even just knowing what you have put out here, I am going to jump in and give my 2 cents about your circumstances.  I was 63 when I got my perm ostomy and manage it just fine.

1.  Talk frankly with her oncologist about her refusal to take care of her ostomy needs and her seemingly failing mental state.  Ask if she can be put in a rehab facility where she can be trained and her mental confusion monitored.  It would be a short term solution at best, but would put someone else in charge of her.  Her current ostomy nurse should be able to support your request from what she as observed.  If the oncologist won't do it, then you need to get her to a GI doctor to assess her sores and the prolapse.

2.  Be upfront with your mother.  If she can't care for herself, then she may need to face being admited to an assisted living place or a nursing home.  No one likes to feel that they have not done all they can for a loved one, but in some cases necessity has to over-ride the compassion.

3.  Cancer does not really tear apart families, but does intensify existing issues within families.  It sounds as if you and your older sister have stepped up to the plate and made every effort to help your mother.  It sounds like the younger ones either can't or won't.  The thing which every caregiver must remember is to take care of "self" too.  Being deprived of normal activities and being stressed about all the issues can have an adverse effect on your physical well being as well.  It is not selfish to look out for you.

All that being said, there are some legal and financial things which may influence how you proceed.  If you are not on her HIPA concent form for getting medical informaiton or having some say in her care, your mother may put up a fight.  You may get down to giving her choices...return to her own home, rehab, nursing home.  If her insurance or financial situation does not cover enough of her expenses, then she will need to file for assistance from your local family services.  You and yours do not have to be legally responsible for her expenses, unless you agree to be in writing.

I know all this probably sounds harsh, but from what you have shared, it sounds necessary.  I don't see that there is any reason to believe that any of these issues will improve without some big changes.

I wish you the best with all this.  I hope that you and your mother can find a better personal relationship before the end.

Marie who loves kitties

 

lizard44

So sorry

You are having  such a problem.  Marie who loves kitties gave you some excellent advice, which I hope you'll  consider seriously. Family dynamics can be so hard, particularly when illness strikes such a blow.  Please don't feel guilty if you feel you just can't handle it anymore, and don't worry about what anyone else  thinks or says; they  aren't in your position and can't judge from your vantage point.  You need to take care of yourself.  You do have a responsibility to your mother, but you also have an even greater  responsibility towards yourself, your husband, your children and grandchildren. If you allow this  current situation to stress you to the point  of a near-breakdown, you won't be  a very effective caregiver for anyone.  Things will probably never go back to the way they were before, but  we do find ways to cope with our new circumstances moving forward. I wish you the best of luck  in dealing with  a very difficult situation.

j_martin

Lovekitties said:

Sorry for the entire situation

Even just knowing what you have put out here, I am going to jump in and give my 2 cents about your circumstances.  I was 63 when I got my perm ostomy and manage it just fine.

1.  Talk frankly with her oncologist about her refusal to take care of her ostomy needs and her seemingly failing mental state.  Ask if she can be put in a rehab facility where she can be trained and her mental confusion monitored.  It would be a short term solution at best, but would put someone else in charge of her.  Her current ostomy nurse should be able to support your request from what she as observed.  If the oncologist won't do it, then you need to get her to a GI doctor to assess her sores and the prolapse.

2.  Be upfront with your mother.  If she can't care for herself, then she may need to face being admited to an assisted living place or a nursing home.  No one likes to feel that they have not done all they can for a loved one, but in some cases necessity has to over-ride the compassion.

3.  Cancer does not really tear apart families, but does intensify existing issues within families.  It sounds as if you and your older sister have stepped up to the plate and made every effort to help your mother.  It sounds like the younger ones either can't or won't.  The thing which every caregiver must remember is to take care of "self" too.  Being deprived of normal activities and being stressed about all the issues can have an adverse effect on your physical well being as well.  It is not selfish to look out for you.

All that being said, there are some legal and financial things which may influence how you proceed.  If you are not on her HIPA concent form for getting medical informaiton or having some say in her care, your mother may put up a fight.  You may get down to giving her choices...return to her own home, rehab, nursing home.  If her insurance or financial situation does not cover enough of her expenses, then she will need to file for assistance from your local family services.  You and yours do not have to be legally responsible for her expenses, unless you agree to be in writing.

I know all this probably sounds harsh, but from what you have shared, it sounds necessary.  I don't see that there is any reason to believe that any of these issues will improve without some big changes.

I wish you the best with all this.  I hope that you and your mother can find a better personal relationship before the end.

Marie who loves kitties

 

Hi

Hi Marie (who loves kitties)! Great tag name

Thank you for all of your advise. I believe that I was already put on a HIPAA concent form at her oncologist's office but I will confirm this with them right away. Does this need to be at each doctor's office or is there one that would cover all medical issues concerning my mom.

You hit the nail on the head when you mentioned existing issues. My younger sisters have always had some sort of issue with my older sister and didn't want her to even come out. The situation has made all of their ill feeling towards her worse and every little thing she has done they have complained about. It's just steadily gotten worse.

My mom had finally learned how to change her original ostomy bag (after having it for over 2 mos) before she was given this new one, so I think I'll take your advise and tell her that she needs to learn how to care for this one or she will need to move to an assisted living home until she can care it for herself. I feel like a mean person but she's not that ill at the moment. The biggest side effect she's having from her chemo is that she's always cold and she get mild cramps the day of chemo but those go away after a day. She should be able to care for herself until the time that she really can't.

Thanks again,

Jane

 

 

annalexandria

I'm really sorry you're going through all of this...

cancer is indeed very difficult for many families.  I think it tends to exacerbate any issues that might be more manageable under more normal circumstances.

Since you've been frank with us, I'm going to return the favor and say this:  with the amount of spread your mom has, things are likely to continue to be difficult, with the chance of a cure unlikely.  It's quite possible that your time with her is limited.  So I think that any decision you make needs to keep this reality in mind.  I don't agree with the idea of "sink or swim" because quite possibly your mom is not going to be able to control this journey as much as your sisters may think.

I would recommend getting a counselor for yourself if you can.  I would ask your mom's oncologist if they have someone they can suggest, someone who deals with illness and family dynamics.  I talked with a social worker attached to my doc's office and it was really helpful.

Good luck, and feel free to keep using us a sounding board.

(my personal experience, btw, is as a patient, the sister of a sib who died from cancer, and the daughter of a mother who needed a lot of care and support before her death) 

JanJan63

annalexandria said:

I'm really sorry you're going through all of this...

cancer is indeed very difficult for many families.  I think it tends to exacerbate any issues that might be more manageable under more normal circumstances.

Since you've been frank with us, I'm going to return the favor and say this:  with the amount of spread your mom has, things are likely to continue to be difficult, with the chance of a cure unlikely.  It's quite possible that your time with her is limited.  So I think that any decision you make needs to keep this reality in mind.  I don't agree with the idea of "sink or swim" because quite possibly your mom is not going to be able to control this journey as much as your sisters may think.

I would recommend getting a counselor for yourself if you can.  I would ask your mom's oncologist if they have someone they can suggest, someone who deals with illness and family dynamics.  I talked with a social worker attached to my doc's office and it was really helpful.

Good luck, and feel free to keep using us a sounding board.

(my personal experience, btw, is as a patient, the sister of a sib who died from cancer, and the daughter of a mother who needed a lot of care and support before her death) 

I agree with Annalexandria

I agree with Annalexandria but I didn't want to bring it up myself. Don't do anything that you'll regret or wish you had done differently if anything happens soon. If you don't gtet the opportunity to rectify a situation you'll regret it forever. Give her time to get used to things in her new reality. I have an ostomy and had to have my husband do it for me the first few times while I stood there and cried. No reason other than I just couldn't deal with it and felt like Frankenstein. You cannot imagine what's going through her mind or how it's making her feel.

As far as the younger sisters, I think they're acting like immature little jerks. Or they're not doing very well with the situation and are acting out in inappropritae ways because they can't deal with it. Cancer brings out all kinds of ugliness in so many ways.

Jan