I know y’all are waiting anxiously on the Rafters entry, and I’ve missed my self-imposed deadline for the Biggie post. The good news is you still have time to go back to the Biggie post and contribute your questions, if you have any.
Here’s what’s been going on:
Seven weeks ago, my mother had an MRI and was told it was fine – no sign of brain tumour regrowth. Hurray! There’s that pesky nausea they can’t seem to control, but from a statistical point of view, this is a win!
This week, her MRI indicated… something. Maybe it’s scar tissue from the radiation, maybe it’s a re-growth. If it’s a re-growth, they want to sign my mother up for a new trial with something they’re calling a “cyber knife” which is an experimental new technology.
Here’s where I’m coming from: if they can’t control the nausea, and my mother’s quality of life really hasn’t been what they told her it would be once she got through the radiation, why on earth are we considering more ways of prolonging life?
And has anyone actually sat down with my mother to talk about what *she wants*?
Some kind friends from the hospital have referred me to some advance care planning tools, and I’ve sent those along to my sister, and we both agree that it’s time to broach this topic with my parents. My sister had planned to do this earlier, but then my father’s mother got sick and well… there have been a lot of funerals in my family in the past couple of years.
So this is the tone my upcoming visit to Ontario is taking: let’s do a care plan. Let’s talk about all the difficult things that we, a good WASPy family, would never feel comfortable discussing. Let’s somehow engage my mother, who is a master at shutting down conversation, in a difficult discussion about this illness and the possible turns it could take.
With all this on my mind, I just haven’t felt like doing the Rafter or the Biggie entry the past couple of days. Instead, I just took the day off.
If anyone’s had experience in starting these difficult discussions with their family members, please email me your suggestions on conversation starters. The best I’ve got right now is straight out of the Simpsons when Homer ate the poison sushi and the doctor handed Marge a brochure that said, So you’re going to die…
Love you all.
Much love and strength being sent your way Kate.
Hold her hands, look in her eyes, send her all the love in your heart you possibly can and ask her, “Mom…what do YOU want?” It pops up in your posts, you asking if anyone is asking your mom what SHE wants. Seems maybe no one is. Seems maybe you know exactly what she needs to be asked. Just a thought.
Hugs and support
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yes, my sister has been very good about reminding my mother that she has a choice in whether to continue chemo, etc. I think / hope this work book will help move the conversation along, because it’s a big long list of specific questions. Given scenario X, I want this, that and the other.
Honestly, I am preparing myself for the possibility that my mother refuses to have the conversation or to express any wishes at all.
My hospital friend gave me a great line today, “If you don’t say what you want, the doctors will do what THEY want.” Which is very true and it’s happening already. Given a passive, co-operative patient and medical trials that need to be filled, the docs aren’t asking “What is best for this person’s life?” They’re asking “What can I learn from this tumour?”
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Wishing you heartfelt communication and co-created decision-making regarding what’s best for Mom. I had to laugh at the Simpsons, though—”Don’t worry, there’s a map to the hospital on the back of the menu!” Maybe your mom will want to listen to Larry King narrate the Bible? 😉 heehee
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I just love dark humour. It’s my preferred coping method. 🙂
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Hi Kate. Sending you internet hugs!
I’m happy to have an email or telephone conversation about this with you – let me know if you’re interested. I’ve had to recently have these conversations with both my parents (one of whom died of cancer, one of whom is still in treatment) in the last few years. I can share with you any insights I gleaned and perhaps they may be helpful to you. I also have professional experience in this arena.
Just quickly before I dash out, I think the most important thing is to use “I” statements – e.g. “I’m concerned, and I would like to make sure we’re able to support you and follow your wishes in the way you need.” And also maybe ask your dad how he would like to be supported if he is her primary caregiver. Caregiving is extremely stressful and you all need to make self care a priority. Which is why it can be good for you to take a day off whenever you need it. 🙂
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Thank you Suzanne, this is helpful. If you’d drop me an email, I’d appreciate it.
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There are a couple of passages towards the end of this Ram Dass post that might be relevant…mostly, though, just wanted you to know you’re in my thoughts! http://www.ramdass.org/dying-is-absolutely-safe/
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Thank you!!!
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It’s definitely a conversation that needs to happen within families.
We didn’t have to really have this conversation with my mother — she had a stroke just after her second round of chemo and treatment essentially just became palliative at that point. She wanted to make it to see her first great grandchild born and she got that. In hindsight, it would have been better to just have foregone the chemo entirely since she probably would have still lived about as long but with better quality of life…and that’s really more important, I think.
With my Dad, long before he got sick, we had regular conversations about how far we’d want to go for treatment of something like cancer. So when he *did* develop cancer, we knew upfront what his personal choices were going to be and I think that worked out much better — he was less uncomfortable for a shorter period of time than my mother had been.
What it all showed me was that everyone’s approach to this kind of illness is personal and unique. Some people are so very attached to some or all aspects of this physical life that they will take every treatment option they have available to stretch their time here out just a little further. Others not so much. (My sister and one of my brothers, for example, are very much in the “do everything humanly possible to stick around a little longer” camp; my Dad was not so it was good that he made his thoughts very clear to everyone. It made things so much easier in the long run.)
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Thank you kitty. Yeah it’s funny how there can be internal controversy within families. My mother’s parents both passed in the last two years, and there was some disagreement and stress about their care plans.
I know how I would feel / want to be treated, so of course that colours my outlook on things until my mother clearly expresses what she wants.
My anxiety around this whole thing is “what if she’s just going along with it all, without thinking about it?”
And as I write that, I guess that’s a choice to honour too.
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Yup, going along with everything without thinking about it is also a choice. All you can do is offer the conversation and go with the flow.
When I went to look after my dad last year, I brought a book with me to read called “Tao to Earth”. It has a small but thought-provoking section in it about dying well — that you choose how you want to experience death and the lead up to it, and that those choices (even…or perhaps especially…the ones that are difficult and stressing) can have a big karmic influences on the people around you. It made me look at some of those more difficult passings in our family history (the ones with care arguments, and disputes over estates, and long-term illnesses, and lifelong “negative” effects on those involved) with fresh eyes.
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I went with my parents to one of the specialist appointments yesterday, and honestly I feel so much better about it. To my great relief my mother isn’t being passive at all, but asserting herself with family members and being very clear on what she wants, which is treatment.
So I’m 100% behind what’s happening right now. I’m so glad I was able to go.
Of course, I had to cry all my makeup off my face after that appointment. They’re not recommending this treatment for the hell of it.
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