many of you have heard from me before at this point. My dad (68, diagnosed almost 2 years ago) had his last appointment with his MO two weeks ago or so. Radium 223 is out of the picture for him as he is just not well and it would not aid his survival at this point. They suggested some radiation for the epidural lesion as the bone is encroaching on the spinal cord. Unfortunately he is not well enough to attend that.
We have been managing as best we can on our own with the biweekly visits from the palliative care team, but they have suggested that we will need more help as he is deteriorating fast, and anything could happen at any time.
He has fallen off the bed 4 times now, so I have to agree (hospital bed is on its way), he’s not eating or drinking much, he can’t open his mouth to take his pills (pain pump on the way too). This progressed too quickly for me to understand, I hope you all continue to fight the good fight and wish you all the very best. Thanks for all you knowledge over the past 1-2 years. Keep us in your thoughts if you have capacity
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StayingSTRNG
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I too am sorry to hear on the rapid progress of disease. I hope you can keep your dad as comfortable as possible. I will keep you in my thoughts and prayers.
Thanks for keeping us abreast. I have seen this kind of deterioration far too many times. If I get short with some patients who want to self-treat because they feel fine now, it is because I have seen the suffering that this disease can cause, even when medication extends life and QOL. My heart goes out to you and your father.
I’m very sorry to hear your news. It’s the right way to go and I hope, your dad will get the best care possible. Sometimes in future we’ll all be united again. Take care!
Thank you for this! I have no idea how long he could have, I want to try and do things that will make him feel warm and happy for as long as he’s here. He loves music and honestly since he got much sicker in November, he hasn’t played any music at all, definitely will pull out his playlist.
I've taken care of my sister-in-law as she passed as well as a dear friend who passed in the last 3 years. Both of cancer- neither had children and both were under 55. Also was with my dad as he passed 4 years ago. Different hospice scenarios for all gave me perspective. If you have the option for more help rather than your family doing the bulk please take it. This allows you to spend more time just being with your dad. If more help isn't an option just take some quiet time to talk to him and hold his hand. It's so difficult a time- but also special being there. I'm sure he knows and feels your love. Also take care of yourself. Eat nourishing foods, get sleep, stay hydrated, meditate (or some other quiet focus time) even if just a few minutes each day. Hoping all is peaceful for you💙
Wow, you are spot on with what we’re battling with. We have a lot of resources available, our team is urging us to use the PSW support to take the load off my mom. Right now my mom bathed, changes him and does everything. I mostly help with communicating with him, help her move him in the bed and watch my niece when my mom is tied up. I also have a relatively new full time job.
Our team told us that although we are strong, we will get to the point where it’s hard to manage, but my dad refuses to have someone else change him or bathe him. He also refuses to use the portable toilet thing, and he dangerously walks to the bathroom maybe once a week and honestly risks his life as he almost passed out last time he tried. Our team told him not to get out of bed anymore (he’s had 4 falls out of bed) to be safe. All this to say he’s stubborn and feeling like he has no agency over his life. He’s also still alert at times. Is there any way for us to communicate the need for some extra hands? Or should we continue to just respect what he wants and take care of it by ourselves? (Sorry this was long)
Such a hard conversation. My dad had leg issues- which was a different problem, but, thankfully helped us not need to talk him into not walking around. I think your dad may quickly realize his modesty (for lack of better term) is not allowing his wife to enjoy their last moments- or it won't be as important to him as he progresses. The condom catheter was VERY helpful for my dad (and mom). It's heartbreaking that end of life can seem to lack dignity for patients. Once my sister-in-law realized how wonderful she felt when a nurse did the washing etc, she didn't want me doing it anymore. She felt much cleaner- I had explained that the nurse, or aide, was the expert- that I was not doing it as expertly and this was like the gynecologist- they do it for a living. (Or urologist in your dad's case). Maybe gently letting him know that you all just want to be there for him loving him- not spending all your energy physically taking care of him. He may not be there though. Perhaps discuss with his care team. It is truly all difficult. So be sure you're helping your mother eat and sleep if she can as well💙
Yes, he has nephrostomy tubes, so he has bags that get emptied to urinate which we deal with. Other business he takes care of on that once a week basis but I think very soon his body will force him to stop doing that, I can’t see him being successful in doing that this week. We will certainly try and talk about it as gently as we can. I live at home so I try to give my mom as many breaks as I can so she can rest as well.
We actually were in the midst of ordering the rail, but the hospital bed made more sense since he is unable to sit up on his own. We will see how it goes, should be coming today!
Thanks for all your comic relief during this journey
For J-O-H-N. You spent time in Asia with spiritual gurus. Could you share any thoughts on my following post to Dad76?
"As the curtain between this world and the next becomes transparent, I suggest an ancient American Indian saying that when a person dies, a library dies with them. As you both can. read as much of that library as you can. Perhaps the memories of vital previous times will be a welcome distraction to your dad and you.
"If you could borrow, rent, or buy a small digital voice recorder, you could keep a record of his memories that you could visit and transcribed in the future. At least here in the United States, there are several models the size of a deck of cards and not terribly expensive."
I’m so sorry that you, your Dad and family are going through this It isn’t fair. He is incredibly lucky to have you supporting him and advocating for him all this time - and just being by his side. I hope he can stay as comfortable as he can now. Sending prayers and strength your way.
I’m so sorry to hear about your dad 😢 I’m in a very similar situation with my dad, age 71, Gleason 9 with Mets to bone, lungs, lymph nodes and now a tumor in his bladder. Zytiga worked for him for years, but last January started with more bone Mets and lymph nodes, zytiga restarted and failed. Tried 3 rounds of chemo in the fall that failed. Radiation to spine and hip in December 2023 helped with the pain. Next step was Lynparza (olaparib), started January 5 which left him a zombie, unable to eat, drink and it severely dropped his hemoglobin. He ended up in the hospital after 3 weeks on it for a blood clot in his leg and blood transfusion so olaparib was stopped. He was so weakened after the treatment and his lymphedema in both legs worsened tremendously on the olaparib that it is difficult for him to walk. He too has fallen out if bed multiple times now and has no strength to get up on his own. Thankfully my husband and I live nearby so my husband can lift him back up. He feels he can’t even complete the PMSAscan which is the next step to do pluvicto. He tried a couple weeks ago and had to stop due to pain. He is ready to be done with treatment. Unfortunately I believe hospice is where we are heading too. I will be praying for your dad and your family. Watching a loved one suffer like this is so hard. My dad was an active farmer less than a year ago and now he needs help with everything. Lord have mercy on your dad. 🙏🏻
My dad is an avid gardener so this story resonates! Honestly not going to his last radiation appointment for us was so important. They knew it wasn’t in his best interest but they just wanted to give him something to “look forward” to. It would have caused a lot more harm than good.
I feel the same - at some point going to additional radiation session / chemo / pluvicto etc might do more harm than good. If the body is too weak for treatment, staying at home and just being together in peace in my opinion brings more comfort. It is very difficult to draw the line as we see it as defeat. But in my experience it brings peace and time to focus on quality of time left. Time to share stories, say all that needs to be said. My dad does not want to potentially prolong his life for a month or two at cost of spending most time at some kind of doctors appointment. I think he is wise, but it took me time to accept it.
Thank you for sharing. My heart hurts for you as you enter this phase of the journey. I pray for your peace and comfort as you support your beloved through his transition.
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It isn’t fair. He is incredibly lucky to have you supporting him and advocating for him all this time - and just being by his side. I hope he can stay as comfortable as he can now. Sending prayers and strength your way. 
average time for hospice care at home
update on husbands radiation to pelvic mets
Lost the fight
Moving on to Provenge/Sipuleucel-t
