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Lung cancer and dementia

Lung cancer and dementia

Posted by jordy on Jun 16, 2020 9:29 am

Good morning,

My name is Jordy, my dad was just diagnosed last Friday with stage 4 lung cancer. To make matters more complicated, he's also battling dementia and I don't think he truly understands what's going on. He's been in hospital since early April after he was found wandering downtown at 4am aimlessly one night. Like most on here, it's been a long haul these last few months with COVID/visitor restrictions and I finally got to see him last week for the first time. Bittersweet, he still remembers his kid's faces but not day to day events. From what I've been told the cancer has progressed substantially since an xray in April when they thought it was pneumonia. Our family finished the cancer journey with my mom six years ago but this one is really tough with my dad not understanding what's going on, the long road ahead and the decisions we will need to make on his behalf. I've been perusing some of the posts, glad I found this forum. 

Re: New to the Group - Dad diagnosed recently

Posted by Peterpatch on Jun 16, 2020 9:49 am

Wow that’s double tough. This  is a perfect site for you to connect with caring people who have been through similar situations. 

Re: Lung cancer and dementia

Posted by Lacey_adminCCS on Jun 16, 2020 10:14 am

Hi jordy‍ 

I'm glad you found our community too. We are here to listen and support you.

I'm sorry to hear about your Dad's diagnosis of cancer and dementia. Cancer is tough enough without the added stress of his cognitive state. It must have been so difficult to be apart from him these last few months.

I'm going to move your post to our lung cancer forum so you can connect with other folks. I also wanted to share a link to our Advanced Cancer booklet with you. 

When your Mom was going through her cancer experience did your dad share his views or wishes about what he would want? 

I look forward to hearing from you again,
Lacey
 

Re: Lung cancer and dementia

Posted by jordy on Jun 16, 2020 11:35 am

Hi Lacey, Lacey_adminCCS‍ 

He did discuss what he would want for funeral arrangements and has taken care of some of the arrangements already. But in terms of cancer treatment, I never had a discussion with him. I guess we were so focused on my mom at the time and he quit smoking 15 years ago so we were probably of the mindset we dodged that one. Ongoing family discussions but with his current cognitive state, putting him through biopsies, chemo/radiation may be more taxing than what he would gain from it.

One question, I've been thinking I want to speak to an Oncologist? Have them review the CT results and have a discussion with our family. I don't doubt the doctor's diagnosis but being through cancer with my mom, I think my family would feel better having the opinion of a doctor who works with cancer daily vs the med ward doc. Thoughts?  

Re: Lung cancer and dementia

Posted by Lacey_adminCCS on Jun 16, 2020 3:54 pm

jordy

Thanks for replying. When faced with an advanced diagnosis many people do thinking about quantity vs quality of life and it's important to consider other health conditions. 

I can understand wanting to have a consult with an Oncologist. Who has been seeing him so far? 

Lacey 

Re: Lung cancer and dementia

Posted by Laika57 on Jun 16, 2020 7:32 pm

jordy‍ so sorry to hear this.

Have they talked to you about treatment options at all? What they are able and prepared to do?

I remember when my husband had his "little meltdown" they were very hesitant to treat him and basically refused to do chemo even though he was under 24/7 supervision by skilled nurses. His was a different case, for sure, and the delirium cleared after a month, but I am still angry over the delay and the complications it caused, not to mention I still don't trust that oncologist. His reasoning was that my husband would not have been able to accurately report on side effects. Well he didn't anyways, because he didn't trust the doctor.

Anyhow, I still don't know if they were just giving us the runaround, or they really don't treat patients with diminished mental capacity....

Re: Lung cancer and dementia

Posted by WestCoastSailor on Jun 17, 2020 12:32 am

For all my connection to the dementia community, this is the first time I have seen this aligning of the stars. jordy‍ . I'm a lung cancer patient and my caregiving experience is limited to six weeks with my wife 18 months ago.

I'm fascinated by dementia. It started with a few close friends who had a parent that they were dealing with and took a vast leap forward listening to a young lady with dementia from England with dementia talking on CBC with one of the hosts. Wendy Mitchell was articulate and lucid explaining the challenges of dementia. I follow her blog to this day. https://whichmeamitoday.wordpress.com/ Most importantly it completely revised my opinion on what dementia means for life. I have realized that there are wide range of experiences with dementia just as there are with cancer.

And on Friday a friend of a friend with early onset dementia used MAID to end her life, wanting dignity in her death.

So many questions. And how do you answer them without having had the hard conversations? It sounds to me like you are on the right track with gathering information. Speaking to an oncologist may give you some idea of what treatment and prognosis might be. Are there gerontologists involved? Is there a palliative specialist, neurologist, or psychologist? on board? Are there home care possibilities? Is there a social worker connected to the case? I suspect that a "Family Case Care Meeting" might be in order. I ask the questions to suggest further sources of information.

Making choices about someone else's end of life is an awesome responsibility and challenge. The CCS has a lung cancer publication that might be helpful in knowing what to ask an oncologist when you meet with them. https://www.cancer.ca/~/media/cancer.ca/CW/publications/Lung%20cancer%20UYD/32088-1-NO.pdf

Are there are other questions we can help with?

Angus
My story: http://journey.anguspratt.ca

Re: Lung cancer and dementia

Posted by Cynthia Mac on Jun 17, 2020 7:51 am

Hi, jordy‍ , we’re walking a similar path. I’m caregiver for my Dad who has metastatic lung cancer (to the liver). Last month, Dad developed minor stroke-like symptoms, but the doctors can’t find any evidence of a stroke, or of any further metastasis. Yesterday, I was told he has “non resolving dementia” and that they’re unable to pin-point a cause (partly because it could be a combination of several causes.)

One thing I’ve learned in the last 3 weeks is that dementia patients need as stable an environment as possible, so I would definitely discuss how to proceed with cancer treatments given his current state of mental health. (Actually, I am having those discussions.)

If your Dad has Directions for Care, it’s important to make sure the hospital has a copy of that document as well.

MAID is fairly new, and I had been considering having a conversation with Dad about it, but he worked out a different route before I had a chance. I’ve worried that he’s “tired” and ready to be with Mom, but his condition has been deteriorating, and even that conversation seems to be off the list of possibilities now.

I hope you’re able to be in touch with your Dad’s health care team. I’m Dad’s primary caregiver, and while the learning curve is steep, I’ve found the doctors are really good (sometimes too good?) at explaining things. In the past 3 weeks, Dad’s been seen by 2 hospitalists, speech pathologists, occupational therapists, a cardiologist, his oncologist, a nurse practitioner and a geriatrician, not to mention the CT and MRI techs. It’s a LOT, but I really believe this is an indicator that they’re doing their best to help him.

WestCoastSailor‍ , perhaps we could have a discussion about this topic when you have some time.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Lung cancer and dementia

Posted by jordy on Jun 17, 2020 9:59 am

Good morning to all,
I can't express online how grateful I am to have been directed to this site. Thank you so much for taking time out of your day to provide feedback on our situation. I've emailed the SW to arrange a family meeting with the healthcare team and will hopefully hear back today. WestCoastSailor, some great information that I will further pursue, your comments got my gears turning! 
I never anticipated the difficulty of not being able to discuss cancer with my dad. The end of life conversation is something I don't think anyone wants to have with a parent but when you don't have the option to have it due to their cognitive state I realize how important/beneficial that conversation can be for both people. 
This situation really sucks, not seing him since April i'm trying to figure out if his mental state is all cognitive decline. Background -he was diagnosed with Amyloid Angeopathy a couple years ago (brittle blood vessels in the brain) that plays a big part in the dementia progression. We knew the chance of him continuing to have these micro bleeds was high and they could cause his health to decline. My struggle is that everytime for the last week i've gone to visit, he's been sedated with Haldahl (sp) because of this restless, erratic behaviour i've been told. Is the lack of ability to communicate the progression of dementia and further micro bleeds or side effects of the regular sedation? Is he in the right hospital environment? We've moved to level C = comfort care due to the cancer diagnosis but they continue to have a 750cc 24hr fluid restriction due to low sodium levels, what is the harm at this point? he's dying of thirst and constantly asks for water but rarely receives it.  I realize this isn't a dementia forum and just typing helps me formulate questions to ask the healthcare team.....and also vent :) I will keep you posted on the meeting with the healthcare team when it happens and thanks again for the questions to consider with the team and your support.

Cynthia Mac - yes it sounds like we're walking a very similar path, my dad's cancer is very similar - no biopsy conducted but they have said metastatic lung cancer to the lymph nodes, liver and left kidney, they peg his dementia state in the advanced stages. I think my dad is getting tired too and ready to be with Mom. I will focus my energy on advocating for him best I can with my family and finding him the best care options available. I'll keep in touch.  

FYI - I've passed this forum onto my two brothers so they may pop up on here eventually or at least read through for support and resources :)

talk soon,

Jordy
 

Re: Lung cancer and dementia

Posted by jordy on Jun 29, 2020 11:35 am

Thank you all for your support and resources and taking the time to reach out.

My dad passed away peacefully last week just 10 days after his diagnosis. We're thankful he's free from pain and didn't have to endure suffering for long. I believe he's together again with my mom and our memories will live on forever.

Take care,

Jordy 

Re: Lung cancer and dementia

Posted by MCoaster on Jun 29, 2020 2:00 pm

jordy‍   I am so sorry that your father has passed away.
           Your profile says it all.   Both your expressions and leaning towards each other is beautiful.
           Margaret 

Re: Lung cancer and dementia

Posted by Cynthia Mac on Jun 30, 2020 7:22 am

Well, jordy‍ - our paths continue on a parallel course.

I just posted in the discussions yesterday that my father passed away last Friday. He, too, has been able to re-join the love of his life.

I hope that you had the opportunity to tell him all he meant to you, too. I often say that this is the one gift cancer gives us.

Maybe, when this is all over, we should meet up for a beer! (Just kidding - I don’t drink beer!) But, it would be great to get together and raise a glass to our dads. If you’re anything like me, you’re going to miss him greatly!

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

Re: Lung cancer and dementia

Posted by WestCoastSailor on Jun 30, 2020 5:17 pm

jordy‍ 

So sorry to hear about the passing of your father. Grateful we were able to be here for you when you needed information and thanks for circling back and letting us know how it turned out. I'm glad to that it was a peaceful death.

There are some great resources at http://www.mygrief.ca/ to help with working through the grief.

Angus
My story: http://journey.anguspratt.ca

Re: Lung cancer and dementia

Posted by Rayline on Jun 30, 2020 11:01 pm

jordy so sorry that you lost your dear Dad. I am happy that it was quick and he is with your Mom again. That is such a lovely thought.🙏

Re: Lung cancer and dementia

Posted by jorola on Jul 3, 2020 4:51 am

jordy‍ I am so sorry to hear of your father's passing. Peace and comfort to you and your family.
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