Caring for Dad who has a rare form of cancer

Posted by nicolef @nicolef, Feb 9 3:07am

My dad has a rare form of cancer, and looking for advice on how to 1, motivate him to take care of himself more and 2, understand the difference between motivating and what he’s capable of doing right now. This is the first chat I’ve been able to find, so I apologize if it’s not the right forum to bring this up. Would also appreciate resources to chat centers or therapists (fyi I’m just waiting on my health insurance to see a therapist, but sometimes you just need to talk to someone). Thanks in advance, and if anyone is awake and tossing/turning like I am, I am happy to talk to you.

Sorry, I have more questions than answers…..does he live alone? What is it you'd like him to do that he is not doing? I currently have pancreatic cancer, but cared for my mother as she went through metastatic breast cancer.

REPLY

Good morning @nicolef Nice to e-meet you here on Mayo Connect! Glad you found us! I am Scott and the reason I originally found Connect was because as a caregiver I could ask questions, chat, etc. at all hours! I was my wife's caregiver for her during her 14+ year war with brain cancer. So while I am no kind of medical professional, I speak from our experiences.

I applaud you for your questions! I wish there were ones I had simple and proven answers for!

In my wife's case I found the answer to each of these questions to be quite fluid. She would frequently arrive at a new plateau of abilities and/or interest in certain tasks to take care of herself. Some of these lasted for awhile, while some were fleeting. Additionally motivation varied literally on a daily basis. One morning she might be happy to brush her teeth, the very next seem to abhor that task. It is a rollercoaster for sure and I tried to remind myself each morning that the day before me very likely would be different than the day before.

A key for me with my wife was to focus on how critically important her independence was. I tried not to ever say "I'll do this for you", but rather "let's see if we can get this done" using the concept of the Royal We. I also worked with the goal of maintaining of those things she was able to do at the time. I know it is not easy, but I tried hard to take my cues from my wife to determine the difference between supporting her abilities and pushing her where she didn't want to, or could no longer, go. Again in my wife's case, dealing with one's own mortality while fighting cancer caused huge fluctuations in her mental and emotional 'location' each day.

How long has your dad been diagnosed?

Sending strength, courage, and peace!

REPLY

What is the name of the rare cancer?

REPLY

@nicolef You’ve taken on a difficult task and I admire you for it. Your dad is probably going thru the grieving process as he takes in all the information. I don’t know if you want to motivate him or just be with him. Let him know that you’ll always be there and that you’re ready to listen whenever.
Also, check with your local American Cancer Society. I know they have support groups and may have other suggestions for you. Even if no one else has the same rare cancer, there are probably people with other difficult diagnoses. You can also check with your local hospital or ACS for family support groups. Will you let me know how things go?

REPLY

Hi everyone,
I'm so sorry it took me a while to respond… it was no disrespect for any of you, and thank you for the helpful advice.
It's been rough these past few weeks, and he's on the mend from the falling issues (broke an elbow), but I'm still not comfortable letting him go back home just yet, although I know he's aching for it. I try to keep things on tangible tasks we can move toward. You want to live more independently? ok great, I will help you get there. Prove to me you can take initiative on tasks like making your bed or taking out the trash for example. It's a hard thing right now when we don't have the support of his side of the family (divorced and don't know the whole picture, but we went through this whole thing where they wanted him to sign paperwork against his will at first) . On the other side of the family, my friends and family have been really stepping up and helping out with simple things like cleaning and prepping meals and whatnot. It's enormous how much that helps. I have a new job and then this whole pandemic thing happened and it makes me even more worried for him because while he's doing better right now, he's not all the way there. I know he's itching to get back to his normal routine but I don't think he realizes what that will look like.
And the two of us are both at risk — I even landed myself in the hospital during this for stress-related stomach and nourishment issues.
My hope is moving forward we can take one step at a time and he can get comfortable with what is now in front of him and what his new reality looks like. we have dr appts in the following weeks, so I will try to keep you all posted as much as I can. just please know I wasn't trying to disrespect any of your stories and helpful advice for being so late to getting back to you all.
and as far as his type of cancer, that's his story to tell right now but it's a rare type if that helps. there's not much research on it yet, but he's been a part of a few successful trials and I think that gives him some sort of "giving back" hope, even if this might end up ending poorly. (his mindset) In my mind, I got 20+ more years with my dad and we're hoping for another few decades so he can see the rest of what life has to offer.
Thanks everyone for the advice,
N

REPLY

Oh and to @ (sorry getting used to this) — about the him getting used to it comment. yeah…. I think that's a lot of it right now. he's in agreement he prob can't live there anymore yet stubborn as hell about living there. I'm trying to find a compromise while we can figure out another living situation.

REPLY
@nicolef

Hi everyone,
I'm so sorry it took me a while to respond… it was no disrespect for any of you, and thank you for the helpful advice.
It's been rough these past few weeks, and he's on the mend from the falling issues (broke an elbow), but I'm still not comfortable letting him go back home just yet, although I know he's aching for it. I try to keep things on tangible tasks we can move toward. You want to live more independently? ok great, I will help you get there. Prove to me you can take initiative on tasks like making your bed or taking out the trash for example. It's a hard thing right now when we don't have the support of his side of the family (divorced and don't know the whole picture, but we went through this whole thing where they wanted him to sign paperwork against his will at first) . On the other side of the family, my friends and family have been really stepping up and helping out with simple things like cleaning and prepping meals and whatnot. It's enormous how much that helps. I have a new job and then this whole pandemic thing happened and it makes me even more worried for him because while he's doing better right now, he's not all the way there. I know he's itching to get back to his normal routine but I don't think he realizes what that will look like.
And the two of us are both at risk — I even landed myself in the hospital during this for stress-related stomach and nourishment issues.
My hope is moving forward we can take one step at a time and he can get comfortable with what is now in front of him and what his new reality looks like. we have dr appts in the following weeks, so I will try to keep you all posted as much as I can. just please know I wasn't trying to disrespect any of your stories and helpful advice for being so late to getting back to you all.
and as far as his type of cancer, that's his story to tell right now but it's a rare type if that helps. there's not much research on it yet, but he's been a part of a few successful trials and I think that gives him some sort of "giving back" hope, even if this might end up ending poorly. (his mindset) In my mind, I got 20+ more years with my dad and we're hoping for another few decades so he can see the rest of what life has to offer.
Thanks everyone for the advice,
N

Jump to this post

@nicolef This just sounds so difficult for you. You want what is best for your dad but you also want him to be safe.

You might think of posting your questions and concerns on the Caregivers website:
https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/
There are so many members there who love to help. I’ll check on you there!

REPLY
Please login or register to post a reply.