My DH is going into the hospital in 2 weeks to have bladder tumors removed. He has battled bladder cancer for over 25 years. The condition requires periodical removal of the tumors. Sometimes the urologist can do the procedure in his office, which is no problem. He has been seeing the doctor every 2 months, in the hopes of being able to take care of the tumors when they are small. However, this time they are numerous and large. Normally this is an outpatient procedure, but my husband is prone to bleeding which requires going home with a catheter. A year ago, when he went home with the catheter, he pulled it out while in the shower. This episode required a trip to the ER and a 5-day hospital stay. He reacts very poorly to hospital stays and needs to be sedated because of his aggressive behavior. He is not aggressive at home.
The urologist has said he will hospitalize him after the procedure until the bleeding stops, which could mean a prolonged hospital stay which I dread. Not only does he do badly in the hospital, he comes home more confused than ever. As it is he is delusional and I expect he will be worse after a hospital stay. Neither choice is a good one.
Hi katlady, You've explained that neither choice is a good one but it's not clear what the other choice is - Can you tell us what would happen if you chose not to have the tumors removed?
I think katlady37 means that whether to hospitalize him or bring him home to recuperate are both problematical. But I have the same question as Myrtle…is there any thought of just not removing the tumors at all?
I was faced with a somewhat similar situation: my husband developed a significantly swollen calf, ankle, and foot last week. We (MD and I) decided to do nothing because the diagnostics and treatment were more risky and discombobulating than he could handle. His seems to be resolving and we don't know exactly what caused it.
In your cases the important information would be what happens if nothing is done. It might be that the tumors would obstruct the ureters and urethra and you would want to know how that would affect him. Hard as it is to accept, this disease is fatal, so treatment of other conditions must be factored in with that knowledge.
If the tumors were not removed, eventually the cancer would make its way through the bladder wall and invade other organs, resulting in a painful death. Normally once the tumors are removed it buys him another year without hospitalization. I've been told these are surface tumors that are not difficult to remove, except that he tends to have a lot of bleeding.
Decisions like are never easy. I try to think of my wife's quality of life. Without knowing how well your husband is doing otherwise, I think I would have the procedure since it would help avoid pain, even though cognitive loss is likely. I am sure at some time you will choose to stop the bladder treatments.
And yes, you are choosing between lousy options, not between a good one and a bad one. So which one is least bad?
I think staying is the hospital is "lease bad" since the last time he came home and ended back in the hospital for 5 days after he removed the catheter and I have no doubt he could do it again. I am going to have to discuss with his urologist when to stop treatment. He is a good doctor and I know he wants the best for my husband, but who knows what is best.
A very tough decision for you. The only thing that I can suggest is talking to your husband's PCP about it. My husband's PCP always gave us better advice than his specialists did and she was able explain to the pros and cons better, too.
I can see that whatever you decide will be based on all the information you have, which is the best anyone can do. I will be thinking of you and your husband.
Husband had preop testing today for surgery scheduled for Monday 3/23, but nothing is ever easy. They discovered a bundle branch block in his heart that wasn't there before. So he has to have a heart monitor and see his cardiologist before we can reschedule surgery. Meantime he had an MRI to figure out way he has severe back pain. They found he has a vertebrae which has moved a bit forward so am waiting for them to schedule cortisone shots. Add to that rescheduling my own doctor appt. and installation of a hot water heater. Oh, and I have to decide if I should put down our 16-1/2 year old cat. My husband loves her so that will be very traumatic.
Our 16+ year old cat died January 2014. She always sat in my husband's lap. I thought it would be hard on him, but after a couple days he had basically forgotten her. Maybe not forgotten, but it didn't bother him. He does call the new dog CC or Sheba (our dog that died in 2008).
I needlessly lost sleep last night worrying how I was going to keep my husband from pulling leads off the heart monitor. The tech put 2 pieces of tape over each lead and then wrapped a big ace bandage around his chest. It will take him some doing to figure that one out. I think he has asked me 20 times what that thing (the monitor) is. Now we have to wait the week for the monitor to be read and see what's going on.
My problem is similar to the one katlady posted here about her husband: How far should I go in diagnosing and treating him for a medical problem?
My husband is in early Stage 7. Two weeks ago he got aggressive in LTC (biting and spitting) and was taken to the ER for possible admission to a psych facility. (This was the second time he was aggressive - the first was 10 months ago when he threw a chair and that was later thought to be the result of pain.) This time, he calmed down by the time he got into the ambulance but a CT scan of the head showed his right maxillary sinus as opaque, instead of black, as one would expect of an empty cavity. Another CT scan with more views will be done on Wednesday.
When I took him to the ENT, he refused to cooperate with the doctor – kept his teeth clamped shut when she wanted to look in his mouth, recoiled when she tried to look in his nose. (This was unusual because a dentist cleans his teeth regularly.) This ENT is clearly clueless about dementia - her order for the additional CT scan said my husband should be put under general anesthesia before the scans! Anyhow, I'm fairly sure he will cooperate with the CT scan but I don’t know what to do after that.
The ENT says that she does not think this is an infection; it looks more like a cyst or a mass. As it happens, my sister had a bone spur in her maxillary sinus two years ago and she says that the ENT’s exam with a scope was frightening and a little painful. Even if they found something with the scope exam, he would need general anesthesia for surgery to remove it and I can’t imagine agreeing to that. However, if the sinus problem is causing pain and that is what caused the aggression, wouldn’t it be better to treat him with pain medication that with psychiatric drugs?
Difficult situation. I would pray he co-operates with the CT cause we all know general anesthesia can be bad news for our spouses. If infection, I would treat with pain medication.
Thanks, Charlotte. Don't worry, I will not allow general anesthesia for CT scan. Will give him an Ativan just in case. An infection would be treated with antibiotics so that would be easy. Problem is what to do if it is cyst or mass. I would value hearing some options from ENT but this doctor seems like a technician only. Have asked around about other local ENTs but no one has any suggestions.
At his age and the late stage of dementia, I would treat the symptoms only with analgesics and antibiotics only if an infection becomes apparent (purulent discharge). A culture and antibiotic sensitivity would be a good idea if he gets colored drainage.
This might seem heartless, but if it were my husband I would never let them do surgery. Treat for pain and infection, but no surgery. I would pray the cancer would take him before the disease. That is how I would handle it. Again we had talked about situations when he was diagnosed and how to handle it.
Every one is different. Some can't let them go no matter what, some of us have no qualms about and there are all those in between.
My DH had two CT scans. He was very agitated and late stage. I went with him and held his hand both times. One time they did not medicate him enough. We had to go back to his room and wait. That required transferring him from bed to cart two times. They did give him Ativan to do this. He fell one time and they wanted to do it. He clearly did not hit his head and I told them no we were not doing a CT again. I don't know if I would have done the other two if I had to go through that with him again. The antipsychotic meds did nothing for him, but to make his symptoms worse and cause him to progress faster. I am very upset by the way he was treated in a behavior hospital. But we all have to make decisions based on each person and what we feel is right.
In terms of medical care (hopefully the CT scan will go OK and will provide useful information) concentrate on what will keep him most comfortable. Extending his life, especially if the treatment will be unpleasant to him, seems pointless. But if they can eliminate pain (I suspect he is feeling pain if his behavior is so out of hand) then go ahead.
And sometimes we just have to chose from lousy options.
I would say don't do anything invasive or painful...keep them comfortable and as happy as possible. If it is something acute and fixable (a broken wrist, let's say)...of course you should take care of something like that. But for the most part....comfort care only. It's kind of a judgement call sometimes. It's probably a little different for each couple, depending on what their values are and what the Alzheimers patient expressed as their wishes before the AD kicked in.
Thanks, everyone, for your thoughts. Values are not an issue at this point, since I don't know what the problem is or if it's causing pain or not. paulc and marche - you're right about sometimes having to choose from lousy options.
I wanted to let you all know that the CT scan went fine. My husband was sweet and smiley the whole time. I thought more about this and decided to ask our son-in-law, who is a radiologist in AZ, to read the scan and translate it for me. (Although we rarely hear from that part of the family, he is a nice man and will probably be willing to help.) I do not want to go back to the ENT without knowing what the scan shows. If the scan shows something that is likely to be causing pain, I may get a second opinion on how to deal with it.
It sure would make all of our lives easier if we had a list of local specialists who understand the issues in diagnosing and treating dementia patients and who might have some alternatives for treating their medical problems.
Elizabeth, Are you still in Ireland? Are you having fun?
Just reporting the result of the sinus issue. Our son-in-law wrote up a very detailed report of the second CT scan, saying that the mass was likely a fungal infection. I also found a more experienced ENT surgeon, who we saw two days ago. My husband cooperated with the exam and the ENT gave me the information I needed: that the ordinary treatment would be to remove the mass surgically using general anesthesia, that the mass was probably not causing my husband pain, that it would only create a serious problem if it invaded the eye area (which it has not done), and that another option would be to monitor it with periodic CT scans to see if it was invading the eye orbit. So that's what I will do. I am glad I went this far and I'm comfortable with this decision, especially now that I know this condition is probably not causing pain and is not likely the reason for my husband's behavioral incidents.
I know that many people (including the geriatric care manager who I like so much) think that since I was not going to do anything about it, I should not have followed through on getting a more specific diagnosis, but the nature of my personality makes it very hard for me to make decisions of this nature without a knowledge base. Now that I have articulated that, I realize how odd I must seem to some of you, when I insist on more information before arriving at an opinion or I do research about something that seems like common sense to others.
Why would you believe that we would think you are odd for case managing the situation so well? Good job, Myrtle--and a sensible, reasonable plan for how to deal with the issue. Your DH is lucky to have you.
You did what a loving, caring wife does - you were thorough in checking this out - you are acting in his best interests - you are his voice, because he cannot do it for himself. With this disease, nothing can be ignored.
Myrtle, you did a great job. Of course you want more info before making such an important decision. The issue still needs monitoring, which is different from doing nothing.