Recently several things have happened that have made me, as Dr. Caregiver, very afraid for the future.
While DH was in respite, he developed acute bronchitis. The nursing home doctor prescribed antibiotics and steroids, but no further follow-up was ever done. Knowing DH's history of asthma, I called his family doctor and got additional meds. The nursing home promptly lost all three of the new prescriptions. If DH hadn't been aware enough to ask for them, I don't know if they would ever have noticed that he wasn't getting his meds. He could very easily have wound up in the hospital with pneumonia.
Later, DH was scheduled for a surgical procedure. His doctor told me that because of his age and medical condition, he would order pre-admission labs and an EKG, and the hospital would call to schedule them. Days before the admitting date, nobody had called, so I called the hospital to schedule the tests. They had no orders from the doctor. I had to chase down the doctor and remind him that he had said he wanted the tests done. Finally got the tests done, and talked to the hospitalist about them. Evidently the only test he looked at was the EKG. I had to ask him about the labs, because DH's platelets had been low the last time they were checked. They were much lower this time, and after looking at them, the hospitalist sat us down for quite a long time and talked to us about them. He said DH needed to be seen by a hematologist very soon.
After DH's surgery, I asked his doctor if he had checked DH's labs. No, he hadn't. I waited while he did so. All of a sudden he was quite concerned about them, too. (He was the doctor who ordered the tests and who did DH's surgery, and he didn't even look at the test results!)
We followed up with DH's family doctor with the lab results, and to get the referral to a hematologist. When they did the usual checks, they found that DH was running a fever. Even though they didn't want to do it, just to appease me they checked him for a UTI. Sure enough, he had one. Even though he has had several infections recently, and even with the fever, it didn't occur to them to check this time
I feel like I am fighting for DH's survival (yes, I know it's a losing battle, but both of us are not interesting in him dying right now). It's scary to feel like my husband could die from something that the doctors missed, and it's up to me to catch all the things falling through the cracks. Being a caregiver is stressful enough without that. I thought I had educated myself about medical issues that could come with dementia, but I never imagined all of this--or how much of it would wind up being my responsibility. Are we just having a really bad run of luck with the medical profession, or is this how things are now?
The appointment with the hematologist is tomorrow. I'm researching like mad so I can ask decent questions and understand what he is telling me. We've never seen a hematologist before, so this is uncharted territory. It's also evidently fairly serious, which raises the stress level. Please wish me luck.
I don't know what to tell you except to unfortunately agree with you that this seems to be the way things are now. There is very poor communication between doctors, and many don't pay a lot of attention to detail. It is up to us to be diligent. It shouldn't be that way, but it is.
Part of the problem in your situation was that he got sick while in respite. Facilities are notorious for poor communication - so many different nurses, doctors, and rules involved, and no one seems to communicate with the other.
I always say - I'm not being paid to do THEIR job, yet it's up to me to see that everything is as it should be. It sucks ( my apologies for the crude language, but it seems appropriate in this case.)
Jazzy described a similar situation (regarding her supposed heart attack) on another thread and brought it up again on the "Moving on" thread that is active now. I added a comment about my friend undergoing pointless arthroscopic surgery based on either the wrong records or the surgeon's misreading of her records.
And also . . . My husband has for many years gone to a vascular surgeon who monitors his AAA (abdominal aortic aneurism) and has told us for years that when it got to a certain size it would have to be repaired. At every visit, the surgeon has put the image of the aneurism on a light box and pointed it out to us. He said that due to my husband's age, the repair would be done by endovascular surgery, rather than invasive surgery. Early this year (when my husband was still living at home), the AAA got to a size where the surgeon said it was ready for repair. But by that time, my husband's worsening dementia made me question whether any intervention was wise. So I decided to get a second opinion and ordered all the records of the vascular surgeon. But I read them first. To my amazement, the radiologists' reports say in PLAIN ENGLISH that the aneurism is located in a place (the junction of the renal artery) that makes endovascular repair almost impossible!
So at our next meeting with this surgeon (who had already scheduled a date for the surgery), I brought the most recent radiologist's report on which I had highlighted the part about the location ofthe aneurism. The surgeon just looked at the report and then looked at the film that was up on the light box and said . . . well, maybe the aneurism is not big enough for surgery after all.
BTW, when I was reading the surgeon's notes, his comments made it clear that he had no idea that my husband had dementia, even though I told him that during the annual examinations, dementia was a listed among his other conditions and until two years ago, his medications included Aricept and Namenda.
Jan K put it well - I am not a doctor but I play one in real life.
For decades, as wife & mother, I was in charge of all meds & appts for the family. When DH had AD, I had to be aware of everything, mostly it was OK. He's long gone and now, children on their own, I am the only one I have to take care of, and I have more problems now than ever with docs, meds, computers, getting prescripts, etc. Recently I had an appt for a very minor plastic surgery, just removing a bump. I was told the appt had been canceled by the cardio dept! That made no sense, and then it happened again. The cardio dept denies having done that. Doctor said, 'heads will roll' but I don't think anything much will happen. No one's in charge! Currently I am unable to order script refills from my computer, and no one knows why--my website is frozen, but it's not my computer. It goes on and on, not only for medical stuff, but for everything. Have you tried to make a phone call lately that takes less than half a day! I'm really not an old biddy, I'm pretty easy-going and don't get too wacky, but everything just seems to be ten times harder than ever and no one know anything and they just pass you off to each other till you go round in circles. So, yeah, someone says heart condition, knee surgery, whatever, you really have to be the doctor yourself.
My bil, whom I believe had vascular dementia after a stroke, had one. Because of his age surgery was ruled out by my sister. When he passed at 80 it was peacefully as he bled out. We knew it was the aneurysm because the foley was red and his skin quickly went cold and gray. But he appeared to be in no pain, he was sleeping all the time by then. It is amazing the number of people walking around with them and not even knowing it.
Thank you for telling me this, Charlotte. I have never asked anyone what would happen if the aneurism ruptured but I did wonder. My husband's brother died of a ruptured aneurism when he was in middle age and his siblings said he was in pain all day but continued about his business and refused to get it checked out. So I guess the pain could not have been excruciating.
The bleeding could have been painful, I won't say it isn't. But since my BIL was semi-conscious, that could be why he appeared in no pain. Also, he had so much pain from all his joints being bone on bone, the pain the bleeding might have caused was probably less. All I know is he had a peaceful look on his face - and this a man who was terrified of dying. When it went, he bled out quickly -maybe a few minutes.
I always said that with my husbands ailments I felt like I had to be the little peasant woman squatting by his bedside day and night. Only way to keep tabs on his care.
I met a woman here who told me about sitting by her husbands side as he bled out.. How it was awful for her as it was unexpected, but that he did not seem to be in pain.
Since my husband died and I moved up to Maine, I have taken the Hospice training course. There are a lot of volunteer hospice people here. One of the things that was repeatedly stressed was that people no longer need to die in pain. (Obviously we are talking about a hospice setting, not war or disaster) That there are meds to block the pain but NOT make people comatose. I think if everyone realized that they might not be so reluctant to "let go."
briegull = my sister had viocoden to give to her husband for the horrible pain he had from the bone on bone every where in his body. But, she would only give him one a day at most and tylenol. For some unexplained reason she feared he would get addicted to it. I asked her 'who cares? He is dying so why not keep him comfortable?" She could not get over the fear of addiction even though he nor her had ever had the problem.