Just wondering if anyone could share their thoughts on providing medical test results to a neurologically compromised elder. This neuro decline has been progressive and runs alongside serious physical deficits. Her anxiety, delusions, and hallucinations are serious, but no one will treat this until we complete a host of tests to assess possible causes. Medication has been discussed but no one will prescribe it until we do these tests to see what might show up. This lady is in a nursing home for the duration. She will never get out. Even when "well" she lacked the understanding of her medical tests and generally did not fully understand what the doctors told her. She recently had some testing done, and the results are not good. It's nothing that's putting her at death's door, but still... not good results and further testing is ordered before her confusion/anxiety will be treated. I feel that sharing details of her test results is not fair to her. There's nothing she can do about it and it's irreversible. She does not have the capacity to understand and I fear her symptoms will only be exacerbated when she starts trying to understand what I'm telling her and assimilate it. As an example of how confused she is right now, she cannot remember what body part she had testing on and it was only a few days ago (it was her brain that was tested). She remembers having the test, but does not remember what was tested. I can't see giving her info/results that she cannot process. So far, I have told her that additional information is needed as there were some questions from the recent test and she would be having more tests. The problem will be if/when a doctor decides to blurt it out but perhaps by then we will have some answers and will have addressed the severe anxiety? Does anyone have experience on telling vs. not telling test results to someone who might understand/remember "just enough" to be further stressed by it?
Your concern about a doctor mentioning is valid. However, would it be any worse where the first mention comes from? Perhaps but maybe still better for the doctor to be the one who brings it up as they can also be the one to explain. I personally would not mention as there is enough that is beyond your control to protect her from or comfort her through that may occur. Besides If you try to explain, your emotions would be easy for her to read as she is familiar with when you are upset, if only subliminally and may be what she responds to more so than the diagnosis.
Perhaps it’s one of those things that it’s better to wait for her to ask and then only answer the specific question she asks. Perhaps that is enough for her to deal with.
Fwiw, I think you are spot on in not telling your mom any details about her test results or what's wrong with her. Leave well enough alone and don't cause her more anxiety than she already has to deal with. Half truths, white lies and therapeutic fibs are a total necessity for dementia patients! Applying rules of normalcy to this brain disorder makes NO sense! Keeping them happy and calm is all that matters.
Good luck!
I told staff not to talk to my Mom about her care. As her Medical POA, I was the only one they talked to. I went into her hospital room one time to find two student nurses explaining Moms care to her. There was Mom sitting in up in bed looking at them with that blank stare and smiling. I knew they had lost her after the first word that she was still probably trying to process and told them that.
Keep doing what you are doing.
I doubt she would understand what the Dr says any way.
I would also make sure the test are really needed and not just being done as Protocol or for money.
You might also get a 2nd opinion.
It's a fact that most Seniors are Over Medicated.
She is sooo much nicer now. It’s been such a nice break for me and I’m not angry with her anymore. I’m choosing not to do anything about it. No tests or meds. (Dr. agrees this is ok) She is well cared for and I visit and take her out a couple times a week. Just letting nature take its course. If she gets anxious I just change the subject and redirect. Working well. I’m thanking God she is easier to deal with!
"Well, you noticed that the light hurt your eyes, so they did some tests to see what is going on. The last test came back negative - that means they didn't find anything wrong, so they are doing another test. You might need to take another pill."
Or, "You have been tired. Your kidneys aren't working as well as they should, so they are doing another test so they know the right medicine to give you."
If she is concerned that she has cancer, or something, and you know she doesn't reassure her that the test proved it isn't cancer.
My husband had surgery for a subdural hematoma, and he vaguely remembers it. When he expresses concern over not being able to do or say or remember something, we blame the surgery.
Adictionary, because of other health concerns, our PCP didn't feel it advisable to subject him to any testing or referrals to other doctors. At this point, it is academic and there is nothing that will change the outcome. He prescribed meds on a trial and error basis.
This is what works for us. Please refrain from posting your disagreements with our decisions. This is our rocky road and we are navigating it the best we can.
As a side note, I saw a little cartoon thing once along with an article about when the exam gown goes on, hearing becomes faulty for some folks. My siblings are very intelligent, but ask them what a doctor said -- very apparent they got the white gown deafness syndrome!!
In my case, the more I say (still working on stopping this), the more questions are asked and the more frustration and arguments are caused.
Let sleeping dogs lie.
Only thing I can really say is tell her you're taking her for her annual checkup. Make a joke of it. (Refrain from any mental references though).
I've made a conscious decision not to persue the issue from a medical perspective though as there is no cure and it just causes more confusion and anger which in turn makes her more anxious and quite frankly neither of us needs that.
Sometimes we need to get it off our chest (tell someone else) because we need to realize it's not about us. It's about protecting the sufferer. Almost like taking care of a baby. You don't tell a baby everything (they wouldn't understand). Well the same goes for someone with dementia.
Good luck. It's not easy I know but hang in there.
2. Assuming "yes," what does she need to know to give (or withhold) valid consent?
3. Leave it to the doctors to explain what they recommend. Be with her to support her, but do not interrupt, and don't paraphrase or interpret what's been said unless she asks you to. Give her time to ask her own questions. If you have questions of your own, go slowly and speak in simple terms so that she has a fair chance to keep up.
Compare and contrast:
the CT scan showed cerebral atrophy
versus
the test you had last week gave the doctors a picture of your brain, and they want to have a closer look to decide what's best to do next.
She would not be alone in not understanding - in being bamboozled and frankly bored by - a sheet of figures with unfamiliar units attached to them, and a deluge of esoteric terms. You want to work on a Need To Know basis, and that means figuring out first what she actually does need to know.
If she *asks* you right out what the test results are - is she likely to? - then you give her the headline (e.g. multiple infarcts), and then the layman's explanation (e.g. "this means that the blood supply to your brain isn't working properly.").
Be calm and give her credit for being able to understand (even if you have your doubts). Don't make your concern about increasing her anxiety a self-fulfilling prophesy.
I think when we try to withhold information or lie, people with dementia can still pick up on our emotions, so if we are upset or disquieted by "lying", that upsets them more than the truth. I never used the word "dementia" with either of my parents, but I would say things like "because you are having a few memory problems", "your back has gotten worse", or "your brain isn't working as fast as it used to" to explain medications and treatments.
Honesty is not the full disclosure of a medical report only. It has shades. As others have said, a headline or simple summary is often enough.
It shouldn't include false hope, but can still be focussed on living well & managing symptoms.
Manner of delivery is key: kindly spoken rathan than anxious.