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Readabook Posted September 2020

I just learned that my 92.5 year old father has bladder cancer- he has been peeing blood thru much of shutdown though not mentioned to me.

His heart doc kept giving him blood thinners which added to scenario and his confusion. His urologist just threw antibiotics at him and dad hates to go get scoped. I have not been apprised of any of this so feel like I have been hit by a truck as I am now being asked to drive him to appts, but not allowed to step in! He finally went in for what I thought was a kidney stone procedure only to learn that he had a tumour removed from bladder- After a week of discomfort he now feels great and he and my mother are happy. His primary care says he is a healthy guy. But I have heard the tumour did invade the bladder wall. We see an oncologist next week. My father does not want a bladder removal and frankly the process would kill him. He could never deal with the care and routine and my 90 year old mother is completely unqualified both physically and mentally. They live alone and love it. So he will not want to do a thing, cause right now he feels better. And I get that. I am terrified of the future, but he has clearly let me me know he wants to stay with his small town docs and just be left alone. I don't think I can ask him to go thru chemo, radiation whatever. He is a private, old school man. I guess I have no question- just has anyone else been in a similar situation with a very senior parent who just says "enough."?

Cheriotp Jul 2021
My mother is 81 and has had 3 different tumors in her bladder removed over the past few years. The last one was into the muscle at the top of her bladder. She is going through chemo once a week at present with no side effects other than fatigue. The doctors will then decide whether to remove just the top of her bladder or her entire bladder. Unlike your dad, she has been suffering for years with intermittent burning with or without a bladder infection to the point that she literally sits on an ice bag for relief. She just wants it out at this point. I can’t imagine the healing process at this advanced age and am terrified. My dad passed almost 6 years ago after 50 years of marriage and she is miserable without him. This is such a difficult place we find ourselves in. If your dad is of sound mind I would let him choose his own path. I personally don’t wish to live with such debilitating problems but everyone is different. My mom and I have both decided that we’re not afraid of death but we are afraid of suffering. Hospice care was a peaceful end of my dad’s life and an end to his suffering which was blessedly short-lived. If your dad is feeling well he may choose to make the most of what time ha has left rather than suffer through treatment. It’s a hard call that only he can make once the facts are presented.

Riverdale Feb 2021
My late MIL ended up with a colostomy bag at 90 after a removal of a tumor. Her memory loss was such that she kept forgetting she had it. Then when she came to the realization that she did she became even sadder then she already was and expressed the desire for God to take her.

The doctor said he could attempt surgery but it could be risky. My husband consented as he knew she was not at ease with this quality of life. She suffered a stroke right after surgery and died within 3 days. He never regretted his decision as he knew she did not want to continue to live so compromised.

We are now dealing with my 90 year old mother who miraculously survived a major infection but is bedridden and constantly on oxygen. Personally I see no quality to her life. I wouldn't want it for myself. However there must be some will within her to keep living. So we do what we can for her. She is in skilled nursing. It is emotionally draining perhaps more so as she has had major periods of her life that she took to bed even going back to before I was born according to my late father. I hope your father's remaining days can be met with some ease for you both.

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BadYear2020 Feb 2021
Dear Readabook, my dad is now 85. He had bladder cancer and I took him to a cancer hospital in TX for bladder removal. 9 1/2 hours for the surgery.
(His choice) Of course he had to have a ileal conduit. That was 1 year ago last month. Since then he had to have a colostomy. Now we have 2 stoma's do deal with. He calls them his pee bag and his poop bag. Since the surgery's I have watched him declined from a very independent, stronger man of 165 pounds to a very frail man of 112 pounds. The surgery was brutal. Then he got a infection from the mesh they used & his incision and wound up with C-Diff. Numerous trips from Arkansas to Texas and too many surgeries took a toll on him and he'll never be the same. The dr.'s told us he'd only have a couple of years if he didn't have the surgery and in hindsight, I think he'd have done better and without it. I could kick myself everyday for not helping him "re-think" the options. He's slowly regaining some strength with in home rehab but he'll never get back to where he was before. Now my role comes in as caregiver. I do all the cooking, cleaning, laundry, insurance needs, dr. appt.'s for him and he was completely able to do all of this before. He was very independent, in fact he just retired from his 2nd retirement at the age of 82 from being a handyman at the local dr's offices. Also with him declining he can't care for his 2 stoma's like need be. I'm the one that takes care of that too pretty much on a daily basis. The stoma's are so close together there is no way to attach the "pee bag" and "poop bag"s wafers without over lapping. When one is leaking both have to be changed. Even the wound care nurses are much of a help.
But please think and rethink twice or even three times about the bladder removal surgery. If our dads were years younger yes, but being older.....let them grow older and just enjoy every day they with us.
Prayers to you and yours.

Readabook Sep 2020
MidKid58- thanks for your thoughtful response, and I am so sorry for your own troubles. That's all I want for my dad- painfree and a peaceful end of life. I have been reading about chemo and bladder removal and It would be different if he was much much younger. But am afraid it would kill him now.

Midkid58 Sep 2020
I can speak from experience that chemo is horrible.

I did it last year for my FAMILY, not me. I was ready to go. Also, I was only 62 when dxed and I felt I could handle whatever they threw at me.

I'm in remission now and doing a FU tx that is every other month, the main drug in chemo only, by infusion. I get sick for a week or two, grad around and feel sorry for myself. I'm doing the FU tx for the family, too, b/c I will NEVER do chemo again.

If I were in my 80's or 90's there's no WAY you could get me to treat this.

If your dad and mom are happy--leave well enough alone. Chemo was 8 months of misery and I would regret that if I had been 20 years older.

Your dad can be kept comfortable and safe at home with no pain and with his wife by his side. That's all I would want. Being sick and 'fighting' the inevitable is highly overrated. If he doesn't want it, please respect that.

MargaretMcKen Sep 2020
I agree, but I’m confused by JoAnn’s reference to Tuberculosis bacteria in the chemo. Why? Was it a mistake?

Readabook Sep 2020
Shane1124- thank-you. You wouldn't know at moment anything is wrong- I just worry the course of how this goes untreated- but you are right- the scopes and catherizations make him insane and even in his 80's he pulled the cath out at home after being sent home with them. My mother can't handle him!

Shane1124 Sep 2020
Discuss treatment options with the oncologist. At his age would he want chemo or radiation? If he is as feeble as you describe I don’t know if treatment is even an option taking into consideration all the side effects, etc. Also quality of life should be evaluated due to age and side effects.

I say accept your father’s plan to do nothing. Keep him hydrated, provide good nutrition. But at some point hospice should be considered. I can’t see the poor guy having to cope with frequent scopes & constant testing which would be done if he wants chemo, etc.

I’m sorry for him and your family.

Readabook Sep 2020
Thank-you! He may have had a uti as well- but I suspect with shutdown things were just handed out that way- he couldn't get into doc til recently and then scheduling then procedure was tricky in terms of finding an open surgical center. JoAnne29: What type of side effects did your parents experience from the chemo and how often did they have it done? My dad is pretty feeble. Thanks.

JoAnn29 Sep 2020
If it hasn't gone thru the wall, bladder cancer can be cured. The chemo is put directly into the bladder and then you keep turning to side, stomach, back and other side. The bathroom used the toilet has to be wiped down with bleach and bleach put in the toilet bowl because the Tuberculosis bacteria is in the chemo. So if you have two toilets in the house, one should only be used for the person who is doing chemo.

Not sure why the Dr gave him antibiotics unless he had a UTI too. They do nothing for bladder cancer. Both my parents had it. Dad from working in a Chemical that caused the cancer 30 to 40 yrs later. A cousin because he worked for a linoleum manufacture.

cwillie Sep 2020
I'm sorry for your difficult circumstances. Your best option (and his) might be hospice, a good agency will not focus on dying but will assist him to live the best life he can.

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