He did this recently with visiting relatives and does it with his doctor visits. I recently noticed he's getting his stories mixed up with 2 or 3 other stories. Should I politely interject corrections so others know the real story or let him just go on? At one point I tried this, but then he lost his thoughts. I could tell it frustrated him. This was the first time he actually was aware there was something amiss with him. The relatives knew he has Alzheimer's as do his doctors.
I also have the dilemma of telling his doctors what is going on in front of him. If they ask him, he tells them he's doing just fine. He's had falls. Unless I tell the doctors he won't. Then he feels like I'm picking on him. What to do there? I usually look at him, smile and tell him I'm just telling the doctor the truth. How do others handle this?
Correcting a person with AD is never suggested, plus it'd be embarrassing for him to be corrected in public. If it's not vital the others know the full details of the stories dh is telling, let it go. If you have to straighten something out, do so later on and in private.
I suggest you read this 33 page booklet which has the best information ever about managing Alzheimer's Disease and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
Bext of luck!
Now, as far as trying to correct his stories, you're wasting your time and only causing you and him more aggravation. Instead just go along with whatever he's saying and you can tell the person he's telling the "real story" if you feel you must when your husband isn't around.
The sooner you learn to choose your battles, the easier this journey will be for you both.
Me, I kept notes on Mom. Then before the doctor visit, I typed them up in 14 font, doubled spaced, short and sweet and only one side of the page. I handed it to his receptionist and ask that the doctor read it before Moms appt. He did refer to my notes when asking Mom questions. I sat in a corner behind her and when she answered a question he would glance at me and I would shake my head yes or no.
I used to feel as though I couldn’t speak in front of my mother because she would get triggered and then I would. In retrospect it doesn’t matter if our people are upset by the diagnosis and confusion because we need to let providers see what we are dealing with everyday. If that is anasognosia or rage . The shame has to be lifted , Alzheimer’s, dementia, psychosis, we have to stop thinking that real diseases are offensive. I work on this in every Dr visit and even say the words, “at risk of triggering my mother I would like to tell you what I am seeing everyday”
In social settings I don’t care at all to let my mother have delusions and hallucinate and get it wrong. Our people know her condition and if they don’t , it won’t matter.
seriously you are in charge and our loved ones benefit from us.
I used to go with my mom as her guardian but she always allowed me to go in with her. I would sit slightly behind my mom and shake my head yes or no while she answered questions. It was not always important about the details, rather than if her answeres were correct or made up.
I later reported it via email to her physician as part of my reporting on how much "confabulation" (making up stories, they believe or perhaps commingling and confusing story lines) I was seeing. Her geriatric internist at my mom's nursing home wants family members to report on what we see in terms of our LOs decline, NOT like every week but if we sense things are declining more or faster or there is a marked change we see; they want to know.
Many physicians have "message" options either via "patient portals" OR leaving phone or text messages with them, their office or with someone (an aide/a care plan team member) in their office. Given my mom is in a facility, I can call her assigned MD, the lead unit nurse, her floor nurse or the floor social worker OR email any of them.
All to say, call your LO's physician and say, "I am NOT asking for information about X/their name, no HIPPA violation: I only want to share and report something I am seeing which is a marked difference in behavior, mental processing/thinking, memory and/or sense of reality (you pick which topic) that has caused me concern and which I believe you as her provider you need to be aware of. I did not want to say this in front of my LO, did not want to upset them. Moving forward is there a confidential way for me to communicate with you or your team about my LO?"
If a dementia diagnosis has already been made, most physicians/providers on your LO's treatment team know that family and friends see things much more often than what might be observed in a short office visit. And most encourage family members to share so appropriate care and plans can be made.
Good luck with this. And helpful to clue in other family/friends to not try to correct them either, there is not point to doing that.
And, tell your husband's doctor what's really going on out of earshot from your husband. Provide videos of your husband's concerning behaviors for the doctor to see.
I also have your problem. My Mom insists still that she has pre-dementia, however I'm certain it has progressed to middle-stage - from how she has declined/progressed in her behaviors. Speaking in front of other family members is not a problem for me, however I need to be careful in front of "others" in general so as to not offend my Mom.
I think doctors are an entirely different situation. Her well-being and accurate diagnosis and treatment depend on telling the (entire) truth about her condition, actions, accidents, etc. So I attend her appointments with her when I can (unfortunately, not very often) - especially with her psychiatrist - who manages her medications and alters them accordingly. Her neurologist has also prescribed dementia-specific medications. Her primary care/general practice doctor maintains all her medications on file and despite some being prescribed by other doctors, has insisted that he be in charge of all medication prescriptions going forward. He is not a specialist, however this way he has an accurate idea of her current medications.
I get in trouble, however definitely will correct or add omitted information in my Mom's doctor appointments. The doctors always appreciate this and will gently remind my Mom that they want to hear from me, especially if she is upset by what I say. I often forget to allow her to fully say what she has to say, before I "correct" her narrative. Am working on this.