How much info, ie medical history etc., does everyone share for their loved one with people involved in his/her care? We feel like everyone involved should know and understand his level of dementia and the basics of what has happened so they can be prepared to provide an appropriate level of care for him his health and safety. My husband is dad's POA and med proxy, but we live far away. We agreed to let his brother set up some home care because they could meet people and interview face to face etc. I was surprised a bit back talking to his nurse that he had not been informed at all about his dementia. I did a basic fill in, because that is part of their job to see he is ok regularly etc. The nurse threw me under the bus and he now thinks I am the devil. His brother doesn't think it's their business, but then his wife has mentioned she think he may also be showing signs of MCI. How do others handle this sensitively yet still make sure people know what they need to know?
They need as much information as will allow them to properly, safely do their job.
If the person they are caring for has diabetes, they need to be aware of that and what to do if levels get high or low. (big difference if the person they are caring for falls asleep or goes into a diabetic coma.)
If the person is prone to having seizures they should be aware of that.
What information is to be shared with whom for what purpose and in what format and pitched at what level of insight, education and experience?
And from what source?
Suppose we are told (real example, name changed) that "Fred has Alzheimer's-type dementia and is non-verbal. He has on one or two occasions lashed out when frustrated. Please allow extra time for tasks."
After my first "whoa! What on earth?"-beset visit, when I stepped back and said anxiously "um, I think Fred needs quite specialist support, don't you?" Fred's wife shared with me a letter from his hospital consultant.
Fred's diagnosis was "logopenic variant Primary Progressive Aphasia." Fred is a different kettle of fish from many other clients who are living with Alzheimer's disease. His condition is rare, its behavioural and communication issues are complex and difficult to understand fully.
Our role is to help Fred get showered, shaved and dressed, and to clean his teeth.
So: what do we need to know? If you put lvPPA on his notes, how many people are going to understand what that means or implies? Somebody had given a rough outline, good enough (ish) for our purposes, hysterically inaccurate in medical terms, and by no means describing the communication obstacles.
Now unfortunately this client arrived with us at the height of lockdown. The specialist support he needed was simply not accessible and wasn't going to be for some time.
My brilliant co-workers visited every day as per the support plan and we all did our best. Sometimes we succeeded in getting part or all of his routine completed; I wouldn't know about others but I had to record only one incident, which was not "lashing out" at all but poor Fred's desperate attempt to communicate. This man is losing not just the ability to use words, but his ability to identify, to internally label, objects and people. I think he could not recognise his own face in the mirror, either as himself or perhaps as a face. We had to earn his trust to allow us to shave him.
Fred is an extreme example; but information needs to come from an authorised and informed source and be shared only as much as contributes to specific applications.
The OP's BIL sees her FIL in the day-to-day and is arranging his care. The OP gives her version of FIL's medical history and current condition, which may or may not be up-to-date and accurate, to - who? A nurse? What nurse? Providing what support? Interacting with a patient who has what insight into his own condition? With what result?
I'm sure she was only trying to help, but you cannot just chuck this information about at random. Besides, she is not MPOA and it is not her place to be discussing her FIL's care with anyone outside the family circle unless she is invited to.
Dementia carries with it a bunch of idiosyncratic behaviors, and it certainly seems reasonable for a caregiver to KNOW which of them are surfacing in the victim of the disease with whom they’ll potentially be working.
It is SO TERRIBLY UNFORTUNATE when a family member reacts out of his/her OWN EMBARRASSMENT for a Loved One’s actions. Such emotions on a caregiver’s part don’t help the dementia victim OR the uncomfortable caregiver.
No reflection on you either way, MickiLyn.
SHARING CONFIDENTIAL INFORMATION THAT IT WAS NOT FOR YOU EVEN TO KNOW ABOUT LET ALONE PASS ON TO ANOTHER PERSON.
Now then. Having aired that point.
Yes, you and your husband are quite right: the home health agency will be in a far better position to meet your FIL's needs if they have certain key facts. These ought to have been addressed at assessment, by the agency's asking the relevant questions. Were they not? If not, why not? - none of their business is nonsense, they're going to *notice* if nothing else.