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Turning a bad corner

Turning a bad corner

Posted by FunnyBunny on Sep 12, 2020 9:33 am

Mum has been relatively well since her diagnosis in 2014 and then missed mets later diagnosed in 2018 which has given her a palliative diagnosis. 
She continues to work near full time from home however many things are changing. Due to the lymphedema now travelling to her other leg, abdomen & back, Mum is not very mobile. She spends most of her day in the recliner. We visited for a week & she was outside twice for not an hour each. Her skin is yellow & recently her labs are showing very high bilirubin, high creatinine, high lactate dehydrogenase and more. Her eyeballs are still white. Her kidney function tests are also high. She’s having low calcium & low RBC even after a transfusion. She had a 3 week break from chemo & her labs barely recovered for her to receive chemo last week (were 103, need to be 100). She’s been short of breath just at home not doing much, she even missed appointments due to being unable to get herself there (and not calling anyone for help). 

At her most recent appointment with her oncologist it was suggest she take a break from treatment but she admitted she’s too scared as the cancer will grow & spread. Her doctor agreed to an alternate schedule of chemo one week, off the next, chemo again, off the next. However I dont think she will be recovering enough between to receive the next chemo. She is starting to need to nap mid-day but says she doesn’t want to stop working as they need the income (not sure if that’s true) and she won’t talk about any coverage she does have or other options like quality over quantity (doctor did try to bring it up).

I know we are turning a corner into very scary territory. Mum is scared. She is refusing all help. She is not enrolled in any home care, palliative care, pain management (although she denies any pain), nutritional support, therapy...she has declined it all. 

The doctor has said she has 6m to a year without chemo but even with it I don’t think we have long. 

I am a Paramedic. I am aware of the decline but can someone validate my feelings/thoughts? This is not just a bad month right?! (Next scan is sept 23 then doc appt for results) This is the decline to the end beginning, correct?! 

What has your experience been as far as helping family into some care when they decline it all? Dad could use some help..Mum has many reasons why this is not as bad as it seems & she is no longer honest with me about stuff (to protect me I believe) but I worry about Dad too. He needs help. 

Re: Turning a bad corner

Posted by Cynthia Mac on Sep 13, 2020 8:55 am

Hi, FunnyBunny‍ , I’m so sorry you find yourself at this point in your caregiving role. It’s hard to see our parent decline, and it’s even harder when their will is to resist all help, even help that would help you manage this to the best for all concerned. (That, actually might be an angle you could work to get your mom into making plans for care.) I also do not envy the caregiver who has a background in health care or paramedical health care, for you probably know enough now to be even more concerned than those of us who don’t have that medical knowledge, and that’s got to be hard.

I, too ran into the case of my parent telling me one thing, and telling his friends something else, that I only found out after he passed. I did not know how tired he was from the treatments, or how badly he wanted to “go be with your mom.”

The only thing I can suggest is to have candid conversation with your parents. Together, and one-on-one. Ask your Dad how he’s really doing and what help he needs, and when you know that, go to your mom, and ask her what she really wants for your Dad going through this. To me, the pain isn’t going to be any less than it will be if you don’t have such conversations, and not only because of your own background. Knowledge is power, they say, and all of you need all the power you can get.

Please let us know how it goes.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Turning a bad corner

Posted by FunnyBunny on Sep 13, 2020 9:35 am

Thank you. 
I feel like I’m juggling a lot. I want mum to be comfy & well cared for, I don’t want to scare them into realizing where we are in this whole thing (they don’t believe anything they hear) and yet I want to have things in place for Dad (they don’t have wills or anything). Plus all my anticipatory grief and such. It’s all overwhelming but I am getting help through a psychologist & my husband/friends/in law family. 
Mum has repeat labs tomorrow as her liver enzymes are very high as is her kidney tests; last CT was in June and there were no Mets to any organs but there were small new disease spots to lungs, abdomen, both groin sides etc. Mum missed her August CT and it’s now rebooked for Sept 23rd but she thinks her liver function test issues are gallstone related. Yes they can be but it’s been persistently high & she’s quite jaundiced. She’s going to be devastated when she gets her new labs proving it’s not an anomaly. I’m so thankful she is forever positive however I do feel there is important business to take care of and she won’t even listen to starting a will or anything...it’s tough. Thanks for listening. 

Re: Turning a bad corner

Posted by CentralAB on Sep 13, 2020 12:10 pm

Hello FunnyBunny‍ Im sorry to hear of your Mom and the battle you are all facing as a family. I think it is quite legitimate to be worried about things such as a will. When my dad died of cancer a few years back; there was no will and it really was a major headache for the family, not to mention the fighting that resulted with some surviving family members. I hope that you are able to get something in writing, including directives of care, for when/if she is unable to speak for herself.

My wife died of cancer earlier this year, and everything was in writing, including directives of care, and we are thankful that everything did go according to her wishes. It may be that you will have to wait until your Mom sees that she does need some help; I hope that you will find a way to solve this with your Mom and that other family can help in her care to give you breaks.

Please let us know how things are going when you can.
________________ "there is always a little Light"

Re: Turning a bad corner

Posted by Cynthia Mac on Sep 13, 2020 2:10 pm

No, wills, either, FunnyBunny‍ ? Oh, dear.

That is unfortunate. My mom (mostly) was very pragmatic about such things, probably because my paternal grandfather died without a will, and it nearly cost his widow the farm, when a in-law relative tried to tell her it was supposed to go to him.

Again, these are difficult, but important steps. From your earlier post, you mom seemed to indicate that they “need the money” but I honestly believe that having directions in place is important enough to spend.

Do you think your mom is being positive or is there a chance that she is in denial? 

“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Turning a bad corner

Posted by FunnyBunny on Sep 13, 2020 5:29 pm

Nope. There’s nothing in place. Mum has been 100% in denial but Dad & I think she’s coming around a bit more lately and talking about stuff however none of it is related to future planning or care....yet. 

I hate to say it but I think this week’s lab results will show continued liver issues and the CT on the 23rd will make things sink in a bit more?! That’s my feeling. And we’ll go from there. However if she does have things like critical illness on her mortgage then there’s a 1yr limit to put in the claim and we are nearing that mark...
Also Dad is constantly taking days off to do things like drive her to the lab (she used to drive herself) or for her PICC dressing and he doesn’t have anymore holidays or dats off but his boss is understanding (thankfully) but if Mum would accept some home care, medication delivery to the house etc I feel it would ease Dad’s load...

it’s just a bad terrible spot to be in and I wish I could stop all of this from even happening. 

anyone have a resistant loved ones that finally did come around to having done help? 

Re: Turning a bad corner

Posted by ashcon on Sep 13, 2020 8:57 pm

I'm so sorry that you are all in this position with your mother's declining health and her reluctance (denial?) about her situation. 
Talking about death and dying is difficult, but it is important. It doesn't mean that it's imminent or that your mother's energies are no longer focused on living. 
It is not giving up on life, but it's ensuring that when the time does come, her loved ones will be able to love, care, and connect at that crucial time, instead of being distracted with the turbulence and drama of being caught unprepared.

The AdvanceCarePlanning site has a wealth of resources through Speak Up Canada. Everything from a guide to build your Advance Care Plan to these Conversation Starters (these are from the viewpoint of raising the subject of your own Advance Care Plan, but you could spin some of them to get your mother maybe talking about it).
And maybe your Dad, too (hint, hint).
There's even a Cancer Planning Toolkit

Kims1961‍  has a lot of experience and insights on this topic and may have more to say that would also be helpful.
---- "Nothing ever becomes real till it is experienced." ----

Re: Turning a bad corner

Posted by Kims1961 on Sep 14, 2020 12:35 am

FunnyBunny‍ You have some excellent advice from the others.  ashcon‍ provided some excellent links to some great websites and conversation starters.

There is also an online tool that uses cards as conversation starters to talk about end of life planning....http://gowish.org/gowish/gowish.html   

There is also a great website that might be helpful for your Dad:  http://www.mygrief.ca/mod/scorm/view.php?id=165

But i think you brought up a really good point. It can be hard to discuss death and dying.  Perhaps your mom is trying to be positive for you, sometimes its easier for loved ones to keep busy with tasks, than trying to communicate how they’re doing. I think the appt. on the 23 should provide some clarity.  Hopefully, being able to discuss openly about what the wishes are for your mom - what supports there can be.  It is possible to have a good life and a good death,,,whenever that may be. 

I don’t know how your mom would respond to just an open ended question like” Do you have any worries about Dad, when you are no longer here?” - it might open the door to some discussion points.  

Are you able to connect with your Dad and see what he needs? Sometimes talking about dying , while doing something else - like driving, going for walks, can help people to share without having a formal sit down conversation.

Good luck tomorrow.  You are really doing a great job connecting with your parents.  This is hard - the hardest part, some may say, it is also an honour to be able to be there for your parents .  Please let us know how it goes.

Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Turning a bad corner

Posted by FunnyBunny on Sep 14, 2020 8:46 am

Thank you all so much!!! I will share the links with Dad and hopefully have some time to peruse them myself today. You’ve all been very helpful. 
I’ve offered to fly home for CT results but since neither parent thinks there’s anything going on they don’t think I need to fly there but I might anyways! Wrap myself up in PPE, change all clothing/footwear in the arriving airport and shower at my parents house. Lol! Good thing it’s a quick 1hr flight! 

Re: Turning a bad corner

Posted by Lacey_Moderator on Sep 14, 2020 9:34 am


Your parents are lucky to have your support! If you do fly out- safe travels and I hope you are able to have some important conversations. 

Take Care,