Mom with dementia has possible bladder cancer. To treat or not?
86yo Mom was in hospital for fall in Feb. On her CT scan they found a suspicious area in her bladder and blood in the urine. Called in a urologist consult, who recommended a cystoscopy in the office. She has significant mobility issues and advanced dementia. I took her to the first appt for the procedure and they couldn't do it because could not visualize inside of bladder well and said infection. There wasn't any infection. She had to wait 6 weeks to get back on schedule and be brought back to try again. Try number 2 after a huge hassle in the office getting a urine specimen, test was done. He could see clearly that there are a couple areas inside the bladder that are abnormal and weeping blood. So now he is saying she needs to go to hospital and have another cysto under anesthesia for biopsy. I had been lead to believe they would do that with this test. I ask him exactly what this would accomplish and the plan if it is cancer. He of course recommended surgery, chemo and radiation. Mom meantime is saying yes we need to do as the Dr says. I told him we would not be treating it so is the additional test really necessary? He said then we can just wait and watch her and wants her back for followup visits. He never has sat down and really discussed anything with me or us, just quickly and hurriedly rushes in while I'm dressing her and states these things. I just don't know if I'm doing the right thing for her. I thought possibly if we had a specific diagnosis she would be eligible for palliative care or something for comfort. She is completely incontinent of bladder and bowel. Without the additional procedure we won't know for sure what we are dealing with. On the other hand it is so very difficult to get her to these appointments. She is a large woman in a wheelchair and I have a very bad back and am not to lift over 10 lbs. I feel after moving her like I want to crawl in a hole and die the pain is so much. She lives in AL memory care and they would take her to appointments but I think I have to. This past time when I went to get her she was to be all ready and she was sitting in the dining room wearing a pair of shorts,diaper and a jacket. No shoes, socks or underwear or blouse. I took her to the room and appropriately dressed her and changed her soiled diaper. The aids told me she had refused to put on anything else when they tried to get her ready. I don't know if she fought with them, but all I said was that what she had on wasn't appropriate for a Dr visit and she changed without incident. I surely would hate for her to show up for an appointment in the condition she was in. Sorry this is so long but I just need to vent and a little guidance please. I've ask my husband and siblings and all say do what you think is best. I just feel like I'm failing her somehow.
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As for the lack of care in Mom’s AL, she may need a skilled nursing facility, especially since she is incontinent. Her care needs sound beyond Assisted Living. If you keep finding yourself doing for her what the staff should be doing, for whatever reason, call a care meeting. Ask if Mom frequently has melt-downs when they are trying to care for her. Ask for their suggestions.
When I first started taking my Mom on her doctor appointments, it was the primary doctor who asked my Mom about her bladder cancer. Say what? This was the first time I was hearing this [my parents were always secretive about health issues].
Upon Mom visiting her Urologist, and Mom being in her early 90's at that time, the doctor told me the bladder cancer won't kill her, it will be something else [sure enough he was right]. The cancer had been very slow moving all the years she had been seeing this doctor. So, all Mom needed to do was visit the Urologist once a year. No surgery, no chemo, no pills, etc. Just watch and see.
When it comes to surgery, the elderly, and especially one with dementia, it can get very complicated.
With my Mom and Dad they were given a chemo treatment directly into the bladder. They then had to lay on their back for 15 min, then side, then stomach, then other side. Live Tuberculosis was used so when they went to the bathroom, the toilet had to be cleaned with bleach. Not sure how many times this had to be done. They were scoped ever 3 months, then six, then a year. Moms was actually in the tube running to the kidney. The tube and a kidney were removed. 6 months later lesions eere found so chemo done. I feel, what your doctor suggested would be if cancer broke thru the wall. At that time the cancer would spread. Neither of my parents had radiation.
Your decision all depends on Moms age and how far the Dementia is. My Mom was 89 when she passed. She was due for a scope a year before that. I cancelled that appt. Mom had gotten to the point she didn't like to be touched and was leary of men. Even if she had Cancer, we were going to do nothing about it. I wanted to preserve some of her dignity. Her decline was monthly. Think about it. A person suffering from Dementia going under. That may progress the Dementia. Then, a few days in a hospital with total strangers. Then rehab with therapy they can't follow directions or remember instructions. Again, strange place, strange people. Last rehab stay Mom had, I swore there would not be another.
My mom is also bladder, and now, bowel incontinent. she wears a permanent catheter. Still leaks a LOT. I cannot imagine how miserable that must feel.
who is her POA? This may be time to enact that. She can't make decisions for herself, so what did she tell you DID want when this came up? These are the hard decisions.
Bladder cancer tx can be incredibly painful. And. be aware, oncologists want to treat everybody who comes to see them. That's their mantra. If she wanted to do every tx under the sun and then some--they'll do them.
If you can't even get a biopsy from her-and that is fairly 'simple' how is she going to handle the multiple txes that treating cancer will entail?
Do you have any family who can help you with this?
Good Luck. You may HAVE to get that other biopsy--and she can be sedated for it of necessary. be mom's advocate and ask for that. Then go forward with that knowledge.
Good Luck,
My 92 y/o mother still resides in the ALF (4 years after dad's passing) and is 100% incontinent and suffers from dementia and lots of other assorted ailments associated with age. She is extremely immobile and acts like dead weight when we have to get her to a doctor's office. It's awful, really, and my husband has to take time off of work when we have to schlep her somewhere. After taking my mother to the dentist to pull a tooth & to the ENT for yet another vertigo treatment in the span of one week, I'm dead tired and have had 2 migraines this week alone. If she were to come down with cancer, I'd let her be and I would not agree to chemotherapy or radiation or other life preserving treatments. Why? Because it's just Too Much. Too Much MORE pain and suffering added onto a life of Enough pain and suffering.
Of course, you have to do what you feel is right in your heart, with the counsel of your mom's primary care physician, naturally. But take her comfort into account, and also your own ability to drag her around to all the appointments associated with cancer treatments. Is it realistic? Is it warranted? Is it sensible to extend someone's life when it's as compromised as it already is?
Best of luck, my friend. Here's a big hug for you today as well. This is all very difficult, I know.