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Glasker1 Asked April 2015

Mom doesn't want to know how sick she is but I do. What do I do?

My mom has a progressive pre-cancer illness. At some point it will develop into cancer and no-one can say how far off that is, though doctors can make an educated guess based on her other health factors. Once it's cancer it's not curable, and so it's called 'life limiting' rather than 'terminal' though the end result will unfortunately be the same.

I moved home to care for Dad who we lost recently, and I'm torn over whether to stay to be with mom or whether to go back to my old life. My mom has no wish to ask her doctors any questions about her illness and I respect that - if covering her ears gets her through then so be it. From googling she could have a couple of years, she could have ten. The information out there is very generic, and I'm not in a position to ask her doctor any questions without her consent. I also don't want her to become upset by asking her any more questions as she clearly does not want to think about her own illness.

From my perspective I'm trying to make a decision I won't regret later on. I know any of us could go at any time, but for other caregivers how did you decide to stay or go?

PhoenixDaughter Apr 2015
Oooh if you know the oncologist could you not ask her to talk to your mum about sharing the information or allowing the information to be shared with you. Often professionals have much more success in this arena...problems shared are problems halved etc etc. Would your work allow you to have 2 days compassionate leave or could you have a holiday nearby that would allow you to go with her? try to get the results of her bloods the same week as her oncology visit - professionals would accommodate that given your distance and love for your mum I am sure. Convince your mum that you dont want her to miss out information because you KNOW how much info theygive and it is too much for her to take in so you would LIKE to be there to support her. xxxx

BarbBrooklyn Apr 2015
Without knowing more (sounds like perhaps leukemia or a slow-growing tumor of some sort), mom could love symprom free for many years. I would pick up my life and not get bogged diwn in this.

However, it nay be time for mom to think about diwnsizing if she still lives in the family home. These are still early days after dad's passing, but you might want to plant the seed of the idea before you leave to go back to work.

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Glasker1 Apr 2015
So glad you folks are here!

My mom does have depression anyway and has regular contact with a psychologist. I don't know how helpful he is - he told her that her pre-cancer condition might go away now that the stress associated with my dad's care is gone! She trusts the guy but I'm not so sure I would. I think she always was a little head-in-the sand about her own health, but when it was my dad or us kids she would be in there guns blazing finding out the intricacies of what was wrong with us.

There isn't work in my field here so I've taken a big step back with my career for now. I usually go to her appointments with her but I think she would rather I wasn't there (even though I ask her will I come or not and she leaves it up to me). Her hearing is quite bad so she misses a lot of what does get said, which was part of the reason I started going along too. Her bloodwork is monitored monthly with an oncologist appt every 3 months as a deterioration in her condition would become evident through the bloodwork. The oncology appts are always midweek so me commuting back and forth for them wouldn't be practical if I go back to my own home.

I don't know how I'd handle having that kind of information about my own health so I'm not trying to push her. We have no real family here and she hasn't told many people what she has so I can't really talk to anyone who knows her about it. Her oncologist also treated my father before he died so I know her quite well, but again with patient confidentiality she can't discuss anything with me.

PhoenixDaughter Apr 2015
I had a similar problem when my dad was alive. In a very brief one off moment he was open enough for me to say to him I know you dont want to hear what the doctors have to say but I need to know how to care for you to the best of my ability - that didnt fly at all he knew what I was up to. The next time I took him to the doctor I took a different tack and got him to agree that since Mum was getting so old I was next of kin for the purposes of discussing dad's health. He signed the relevant forms which meant the doctor COULD discuss his ailments with me as well and he did so in a different consulting room. Dad hadnt lost Mum so the process was different and I do live in the UK so again different process but it enabled me to make a decision which I dont regret. I made the decision to stay at work some 200 miles away and visit every weekend for the whole weekend to give Mum a break and to prepare his meals for the following week.

Dad lived for 5 years after initial surgery but the cancer returned and from then on the doctors said not more than 6 months. This was 20 years ago so Mum was a lot more able than she is now and so I continued as before. The end came very quickly over the period of 3 weeks, when eventually they asked me if they could increase the morphine. Although Dad didnt want it I couldnt bear to see him in so much pain - the consultant and I were able to speak freely about the options and I finally regretfully agreed for the morphine to be increased. he died in my arms 12 hours later and I dont regret my decision to continue working, I just still miss him and there isnt a day I dont think about him.

What I do regret is having the next of kinship passed into my hands. Once that was given to me then yes I could find out more BUT it meant I had the final life and death decision - which I have never come to terms with depsite counselling. Good luck sweetheart xxxx

BarbBrooklyn Apr 2015
If your mother isn't giving permission for you to get more information, then you can't make realistic plans. Is she still in shock from your dad's death? Perhaps she would benefit from some grief counseling? Sometimes groups are offered through funeral homes, or through a local church.

This is very much your call. Are you able to change jobs to be nearby easily, without loss of income and retirement benefits? I wouldn't make this move if you don't see some benefit to you, because the resentment it causes will surface and eat away at your relationship with your mom.

You might also encourage mom to seek a second opinion. Has your mother always had a "head in the sand" attitude about health matters, or is this a new thing? You might want to look into her mental state/cognitive processing.

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