Terminal Cancer and Demented Challenges

lgreer22

My father's dementia was escalated and his cancer came out of remission following a battle with COVID-19. His short term memory is non-existent some days and he now has large gaps in his long term memory. He had to be put on Seroquel to control the hallucinations he was having. During all of this I had to make the decision to take him off his cancer medications to give him a fighting chance of regaining any quality of life. 

Now his prostate cancer has spread throughout his body including his lymph nodes and spine. On July 13, my parents, my husband and I received the prognosis, terminal prostate cancer with a life expectancy of 6-12 months. 

This is not where things got really hard. Due to my father's memory issues, he remembers going to the oncologist but does not remember most of the visit. I had to explain to my father again what the doctor told us and what was in the PT-scan. Additionally my father keeps asking about seeing a doctor about his bladder issues. He has been wearing diapers for 10 years after his prostate was removed but he has no memory of how long this has been going on. I have had this conversation with him 5 times in the last month. 

There are times I just can't handle having to have these conversations with him. I have learned to redirect him to other topics on most occasions, but my mental strength is wearing down more and more.  

I welcome any friends who understand this situation or who have been there. I have some good resources around me but they are not the children of a person with memory issues who is terminal so can't fully understand how I feel, how frustrated I get, or how depressed I can get. 

Laura4yoga

You have come a long way! You are most definitely NOT ALONE! Many of us have been at this part of the journey and I found it very hard to stay strong. But the best advice I was given is it’s OK not to be OK! It’s ok to take care of yourself!! Gather as many positive, helpful people around you as you can. Many of us feel like we can be the only one to do the caring, but many others are able to care for him too, don’t hesitant to reach out. This is not a one person job! Also remember to look for resources in your area for hospice and respite/caregiver relief programs to give you needed rest!

JJ401

Dad remembers the oncologist, but not the diagnosis. When he asks about the visit I think my answer would be that the oncologist did not recommend any new treatment at this time. No need to keep telling him the diagnosis. 

Urologist answer. We can’t get an in person appointment due to Covid, but I talked to the doctor and he said to keep wearing the same product. Or buy a new product and tell him that this is what the urologist recommended. 

Unfortunately the question will be repeated until it isn’t. Pick a fiblet that will calm him and use it. Most often you can use the same fiblet over and over as every time it’s like the first time.

jojobaggins42

Oh, this is helpful to have someone in a similar situation to me. I'm sorry that you are in it, but it is comforting to not be alone. My 76yo mom has Alzheimer's and Vascular Dementia and she has a terminal diagnosis of Pancreatic Cancer. They were diagnosed the same week just over a year ago, actually. In March, her oncologist said that without treatment she would have six months or less. That would've been early Sept, but she's still doing surprisingly well. 

First of all, I'm really sorry that you have had such a hugely stressful time with your dad with Covid and the after effects. It's really upsetting for things to go from manageable and decent quality of life to all of these health problems.

JJ401 has the best suggestions, I think. No need to constantly reorient your dad to reality if it will upset him. Saying that the oncologist has no further treatments to recommend is good instead of saying that it's terminal. 

What about getting your dad started on hospice care? They will be able to provide you with support at home. This is what we did with my mom. She was still with it enough in March to make the decision to discontinue cancer treatment. She didn't think it was worth fighting it if it didn't actually have a cure. Chemo wore her out. Plus she hates how it feels to be losing her memory. She feels ready to let go. When we talk about hospice, we talk about how they are here to spoil her. Their number one concern is how to make her feel good. She likes not having to leave home to go to appts. They are on call to come to the home and check her in an emergency 24/7. Medicare covers it very well, at basically no cost to the patient.

And this may sound like a terrible thing to say, but her terminal cancer diagnosis is going to spare her from a lot of suffering from the alz. She hates losing her memory. She says it's scary. Like your dad, her short term memory is almost non-existent. The geriatrician who diagnosed her alz kind of agreed that she'll be spared suffering and said "choosing to stop treatment of this cancer is perfectly reasonable and it allows you to go out on your own terms and with the best quality of life possible." My mom is open to talking about end of life, but she forgets most of the content. We have to have the same conversation multiple times and she goes through some of the same feelings over and over each time. I have started recording our conversations with an app on my phone and letting her listen to them again.

What helps the most for mom, is keeping a positive attitude. Remarking on the things that are going well. Is this soup good? Isn't it nice how many Cardinals we get every day at the bird feeder? They are so cute! I wonder why the squirrels haven't been coming to the squirrel feeder, do you think they found a buffet somewhere else?

And it might be helpful for you, if you don't have much experience with end of life, to get acclimated to it now. It makes helping a parent through this much easier for you. Confronting it head on can be easier in the long run. To start with, there are many excellent books about hospice. I like Final Gifts and the book Final Journeys. And there is a very very good one hour Frontline documentary for free on YouTube called Being Mortal. It is excellent. I have rewatched it many times. https://youtu.be/lQhI3Jb7vMg

Feel free to private message me if you want to chat more. Hang in there.