HealingWell
Search Close Search
☰

Dilemma for a caretaker

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/4/2020 11:51 AM (GMT 0)
Well i have a question which may not have any right or wrong answer. But i am looking for an answer from a patients/parent/father's view point. So, i do understand ultimately it is the patient dx with this dreaded disease and his body undertaking the treatment and dealing with the physical, emotional and mental turmoil it brings and It should ultimately be the patients call as to how aggressive he wants to be in his treatment for Pca. But as a caretaker/concerned daughter i want the best for him, to be his advocate, research for the latest treatment etc... and discuss this proactively with his MO.

To throw some light on the reason for my question is my dad is 76 years old, dx with stage 4 mets to pubic bone and several lymph nodes GS: 4+4=8, PSA 114, he had an orchiectomy and the urgologist put him on biclautimide and asked to continue the same till it becomes ineffective, i did all the research (i would like to thank you all for your valuable inputs) and told my parents this is the earlier approach-the urologist is not adept to the latest methodology etc, Let us consult with a MO and start with Zytiga, they agreed to meet the MO - when we informed the MO about the urologists recommendation - he said it is correct - get a PSA tested next month and come back - i had to tell the MO why not start zytiga now only since earlier zytiga has shown benefit - the MO agreed and prescribed it - his PSA is stable at 0.103 , during our last visit to the MO i asked if we should add radiation to the mix as my dad is oligometastatic - he asked my dad if he was willing to undergo additional treatment - to which my dad asked the side effects etc and agreed- we had a holiday planned then and now upon return i have been telling my mom about visiting the MO and getting a recommendation for the radiation and my mom has told me let us focus on his quality of life, he is 76 years old and for his age lot of people don't even recommend PSA testing or don't even get their prostate cancer treated - we are already getting it treated since his is at an advanced stage but he has side effects from the treatment and we should not add to it - let us see if the MO suggests on his own you dont put words in his mouth. I have tried to explain it to her how we have to be our own advocates and up to date with the latest treatment protocols etc ... but she along with few of the other relatives have explained to me that aggression is warranted at a young age , at the age of 76 we should let him enjoy his life the way he wants. Earlier i used to stop him time and again from having sweets, dairy, ask him to have green tea with ginger, cinnamon, turmeric, increase intake of tomatoes, broccoli etc etc). He enjoys a glass or two of scotch whiskey every night since the past many years - now the same amount of alcohol has a greater effect on him and also he tends to drink more on certain nights when he feels low - so i stop him time and again scared about the impact it may have on his health, but it is his way of coping with the disease and the hot flushes and fatigue it brings along. We even discussed it with the MO he said things related to sugar/dairy/other supplements are unproven - u can have everything in moderation - less sugar/limited fried food/no alcohol/no tobacco is beneficial for the overall health and must be followed but one cant stop enjoying living, one must not pressurize. I have since stopped nagging him about his eating/drinking habits but i don't want to stop advocating for his treatment options.

From a caretakers point of view i believe i am doing what is best for him but as a patients view point am i demanding too much? should i draw a line and let him/mom decide on a less aggressive approach ? or how should this be handled

P.S: We are based in India and going to the best MO our state has, so no option of changing to an aggressive MO.
Posted 2/4/2020 12:14 PM (GMT 0)
sunshine, You have raised a significant question, that all of us have to face eventually. I would suggest you get a copy of a book by Dr. Atul Gawande, "Being Mortal", which might help you.

Gawande's main point is that we--and the medical profession--have a terrible time admitting that a situation is too far gone. I can't say what your father's situation actually is--you, and your parents, and the doctors there know the answers better than I do on the other side of the world.

That being said, I have been where you are. My father was diagnosed with PC back in 1993. He was successfully treated then, and then had 10 good years. In 2003 they found cancerous spots on his ureters, and then the PC came roaring back and got into his spine, and he passed in October of 2004 at 78. At some point, we all need to make the decision--and it is ultimately up to him, and finding the balance of quality of life and treatment options is a very difficult call to make.

Perhaps, if you can find a quiet moment with him, ask him what he wants. And then listen to him--really listen. If at all possible, have it be a conversation with just you and him--ask your mother to not be in the room. This is vitally important--be the daughter who trusts her father to be wise and loving--and then, be at peace.
Posted 2/4/2020 12:59 PM (GMT 0)
Sunshine, I agree with the previous poster about you having a quiet one on one with your father...

That being said, I am 72 and we are now realizing the importance of end of life planning documents to put our wishes and directives in a clear format for our family and loved ones to honor and follow. It will take a tremendous load off of our family and caregivers as they will have written instructions as to our desires of care and how we want to live our lives out.

Maybe it would be a good time to talk with your father and consider development of some of these documents

In the State of Washington, we have a great website to help start this process...
https://endoflifewa.org/

pasayten
Posted 2/4/2020 1:15 PM (GMT 0)
Sunshine, i like your screen name, reality is, life gives us lots of sunshine, and unfortunately a fair amount of clouds as well. The latter makes the former, that much sweeter.

My first reaction to your question was, "well, 76 isn't so old these days". But then i googled life expectancy and found that the average life expectancy in India is 67 (vs 78 in the U.S.) https://en.wikipedia.org/wiki/list_of_countries_by_life_expectancy

It's a tough question. But i think the answer, to me at least, is obvious. We all want the best for our loved one's. To wit, you are feeling like you are the parent to your parent. The question i think, is, whats your dads mental capacity. Is he fully capable of making his own decisions with a clear head? Assuming he is, it seems to me that he has a right to make his own decisions. What you can and should be doing for him, is helping him, through your research here and elsewhere, including conversations with the doctors, to be fully informed. If you do that for him, with him, you've done well by him. Sometimes the best thing, the right thing, we can do for those dearest to us, is also the hardest.

Just food for thought.
Posted 2/4/2020 6:54 PM (GMT 0)
You could probably be helpful to you dad by helping to clarify what the likely outcome will be if he treats, in terms of life expectancy and quality of life, and what it will be if he decides not to treat, or treat less aggressively. A friend of mine with an aggressive cancer (not PCa) initially decided not to treat because the treatment would be unpleasant and have little impact on his life expectancy. Then he changed his mind because he decided he wanted to use the extra few months the treatment would give him to finish writing a book -- which he did! Patients should have the best information to allow them to make a decision that fits their values and situation.
Posted 2/4/2020 9:07 PM (GMT 0)
Posting and following this as a 61 year old daughter to a 93 year old father who still lives on his own and rides his motorcycle as he's been doing since he was 13. He's about as healthy and active as most 65 years olds are, eyes and ears excepted. More mentally alert than I am!

I try to help find the 2-3 treatment options that address whatever the particular challenge of the moment is. I present the options in a clear, logical, factual manner, giving pros and cons of each. I don't give an opinion unless asked, it's totally up to my father how aggressively or benignly he wants to approach each issue. Sometimes I find options & alternatives that previously were not on the table, simply because a Dr didn't mention them, sometimes I don't. My job is just to help gather and arrange the data....because I can use the internet!

As the previous poster so aptly stated, "Patients should have the best information to allow them to make a decision that fits their values and situation." Just because the patient is aging/old doesn't matter, if the mind is clear, the patient makes the choice.

Hope the view from this side helps a little.
Posted 2/4/2020 10:46 PM (GMT 0)
Sunshine,
You've been a great advocate for you're Dad. I think at some point one has to decide when they've hit the sweet spot of getting good care while preserving QOL. I wonder if you have reached that point with getting your Dad the current best practice for the Lupron/Zytiga. Radiation treatment? Maybe, maybe not. As far as your Dad's diet, I want say to let him have his Scotch and to eat what he enjoys.

Just my perspective.
Posted 2/5/2020 7:57 AM (GMT 0)
Thanks a lot for your responses. They have definitely given me a perspective on how to handle things from now on. He is fit and fine and capable of making his own decisions but is not really open to discuss the treatment plans/options/outcomes nor does he do his own research. He is tech savvy and can use the internet to do so but he does not. Maybe he has not yet gotten his head around to accepting his diagnosis/prognosis or is not open to discussing stuff with us - Kind of just goes with what the doctor says. That's the reason one has to be an advocate for him. You all are correct i should just factually pass on the information to him and together we should incorporate it into a checklist before each doctor visit. The doctor can then answer those questions/share his opinion on those and other matters and dad can then decide for himself. We have stopped telling him about his scotch or his food habits and let him do as he pleases. On the treatment front i need to change my approach.

I think its got more to do with emotional turmoil the disease and treatment brings rather than physical. The reason i say so is he is doing well on the treatment front and there is no reason to believe he would not continue to live well for a few more years. But there are days when he drinks too much and then talks about having only some time left in this world (by too much i mean he wobbles when he walks and if we try to help me he says we should not bother him and let him die in peace), the other day while on the phone with my brother ( who lives in Australia) he asked him to plan a trip home soon (We were all just in Australia two weeks ago visiting my brother, mom dad were scheduled to stay till March but dad wanted to return home sooner and we got the tickets done as per his wish. The next week upon returning to India he asked my brother to plan a trip home soon which naturally panicked my brother thinking dad is unwell and calling him home). My dad had asked the MO about his prognosis on diagnosis and the MO had mentioned a good 7-10 years and maybe even longer with the way newer treatment avenues are opening up so not that the doctor has told him something on that front...when he behaves in this fashion it tends to scare us - we think he is probably unwell or in pain or something and is not sharing it with us or whether these are signs of depression or should we ask about counselling etc...but then he is back to his usual self the next day.
✚ New Topic ✚ Reply