Being honest about Dad’s diagnosis; thoughts?

My LO “knew” before she entered residential care, but I never discussed specific diagnostic details with her.

My perspective is that anything that is told to an LO with diagnosed dementia should be based on the VALUE TO THE LO of what is said.

”Honest” to the responsible caregiver does not necessarily mean “honest” to the LO. If your LO is anxious and restless now, in residential care, it is likely that he’d be anxious in his home setting as well. His “honest” was previously distorted to a degree because of his bipolar issues, and will be additionally distorted because of the dementia.

If the meds for his bipolar symptoms were prescribed before his dementia was evaluated, they may need to be re-evaluated in light of the dementia diagnosis, and his prescriptions may need to be tweaked to reflect the combination of issues.

When my LO first entered a very good MC residence near me, a relative decided to tell her the “truth”, and stated to her that “she’d never go back to her old home”. The results of his “honesty” were devastating to her, and without the help of a very gifted psychiatrist, I doubt that she could have done as well adjusting as she ultimately did.

”Truth” can be “Your doctor says your not able to live at home Right now”, “I’ll let the doctor know that you want to go home”, this style of communication.
As you know, dementia is progressive. “Pretty coherent” can be social competence accompanied by increasing loss of whatever management capacities he had previously.

If you as a family are absolutely determined that he be told “the truth”, his doctors should definitely be involved, if not solely responsible, so as to spare his relationships with family members. Although he likely will forget the specifics of such a conversation, the recollection of positive interaction with family may last longer, and he has the right to that.

Love and respect for his peace, safety and comfort are more important sometimes than “facts”.

I am in the EXACT same position as you are, unfortunately. My mother who's almost 94 was diagnosed with progressive dementia back in 2016 while she was living in the regular Assisted Living section of her place, and had her own apartment with a microwave and fridge, etc. Then she started to go downhill, both physically and mentally, over a period of time, requiring more and more help to where 2 people were called in sometimes to help her. That is against ALF rules; a resident can only be a 1 person assist at any given time, at least in 99% of the ALFs here in Colorado. So she became a problem and they were wanting to ask her to leave, but were reluctant b/c she'd been there since 2015. Then she caught pneumonia. After a week in the hospital and 20 days in rehab, her cognition was even further diminished, plus she became wheelchair bound 24/7 due to neuropathy, another story in and of itself which I'll spare you the details of (you're welcome). The regular ALF would NOT take her back after her rehab stint, and would only accept her in their Memory Care building. I never told her she was diagnosed with dementia, just that she had 'memory problems' and needed too much physical help to qualify for regular ALF living any longer.

She's been in Memory Care for 16 months now, and is in better mental shape than many of the other residents, whom she calls 'crazy' and 'stupid morons', etc. You get the picture. She's got moderate dementia and doesn't even know what day it is, can't dress herself or go to the bathroom alone, yet 'doesn't belong there.' Every day she asks, "What am I doing here? I don't belong here." Her doctor told her on Tuesday that she has severe cognitive decline which worsened after her last hospital stay. Know what she said? Yeah well I STILL want to go back to my old apartment in the regular ALF.

I've decided to tell her MYSELF about her formal diagnosis b/c I've done her NO favor by hiding the truth. She won't accept it, of course, because she has a very very strong need to feel 'better than' others; she thrives on it, in fact. She won't take the news well, either, and will ignore it or push it under the rug, as she does everything else she doesn't want to hear. But she needs to know that there IS a VALID reason for her to be where she's at. She cannot and will not come to live with me b/c I am incapable of handling her 100 issues here, and frankly, I don't want to deal with her. Just the bathroom/incontinence issues ALONE would have me pulling my hair out.

She needs to know, and your FIL needs to know, too, in my humble opinion. Whether it 'registers' with him or not is irrelevant. A person has the right to know WHY they live where they do, and what the reasons are for it. You know? My mother will tell you there is 'absolutely nothing wrong with her' but the truth is entirely different. They take excellent care of her where she's at, and THAT is all I care about.

While not every diagnosis of dementia means that the person cannot live alone or requires 24/7 care, only YOU know what level of care your FIL needs. If you believe he NEEDS to be there, then he should also be told the truth as to WHY he's there. Probably many, many times, unfortunately. But he (and my mother as well) will likely reach the point where the questions will stop as the dementia advances. Acceptance sets in and life goes on, I guess.

Wishing you the best of luck dealing with the whole ugly mess.

I believe that your FIL has a right to the truth whether or not he can remember it, whether or not he can believe it. I would always error on the side of the truth. I would tell him you will be there for him in every way you are able, but that he cannot come home. I think this news should come from family, perhaps with administrator there, not from the facility or doctor alone.

The doctor should be the one telling him.

My dad got stabilized and now lives on his own with a diagnosis of dementia. Not completely ideal, but he does well because he knows that he will end up in a facility again if he isn't careful with his meds. He is diligent about taking them now.

Not every diagnosis of dementia means that you can't live alone or require 24 care. Dementia symptoms can be caused by many medical conditions that are treatable and that means that the symptoms clear up when you get things under control.

Make sure that he really is in need and not just because a doctor made a diagnosis of symptoms.

This question is the reason I’m seeking my doctor’s advice today. Is it more humane to go along with a dementia patients reality and say “ dad you’ll come home soon” or bluntly say no you’re never coming home. This is where you’re going to be forever. I’m assuming as my Fil that he’s safe,well fed, has companionship of sorts, maybe entertainment, correct meds on time, etc. COVID makes it doubly hard because we can’t just go there and chat. These constant calls of please take me home can create devastating negative affects on loved ones... I know. I don’t know the answer and that’s why I’m seeking professional advice . If you find a solution, please post it.

I dont know. I'm all for the truth. But please dont ever tell me that I will NEVER go home again, even if that is true. I could take the news that I'm dying more easily than that! Don't hold out false hope, but don't extinguish even the faint, though unrealistic, hope that I may have of a better life someday.

Since his wife is showing cognitive decline as well but neither of them sound “incapable” Is there any possibility of moving them into an AL apartment or situation? I think the levels and set ups available can vary depending on their area but I’m thinking about a facility where they have their own place but staff oversees their medication and meals are available as well as assistance with things like grocery shopping and getting to doctors appointments. This way the need to be somewhere with help is t all focused on him, it’s the best thing for both of them safety and health wise, they “move” together and when one of them needs more care they can stay in the same campus together. It’s often easier to convince a spouse to do what’s best for their partner than it is to do it for themselves.

I also would suggest a family meeting with the facility staff, even if it has to be remote now, that includes all the siblings so these important questions can be asked of the professionals and everyone is at least hearing the same answers at the same time. This doesn’t mean everyone will interpret what they hear the same way but at least the questions are being answered and a discussion can ensue. I would want to know why the staff is dodging his diagnosis as well, I suspect it has something to do with his medications being straightened out and maybe the dementia diagnosis was used to facilitate that or something so he wasn’t really put through testing the doctors want to stand by. Is he actually in Memory Care or is he in a NH or in a temporary placement for psyc (medications) eval? Are they expecting him to stay or looking for him to be placed elsewhere? COVID may have complicated his situation and their information so you understand it too. Who is the contact person dialoging with the doctors and facility, is it your wife or is she getting her info through a sister? This stuff can be hard for us laymen to follow and understand in the best of times so explaining it...

Let him know that he has several medical diagnoses that require 24/7 help and that family are unable to provide this type of help. His wife may need to be assessed and placed in the same facility with him. They could share a room.

"All along, the doctors *and* the facility management have been very reluctant to give him any type of honest assessment of his condition and why he is in this facility."

Really? Have they said why?

It would be most unusual for a doctor not to disclose his findings to his patient. It would take quite some justification. And if FIL has been living with bipolar for many years, he will be very used to discussing mental health issues with professionals and they with him.

However, it would be much less unusual for a patient with dementia to be highly selective, to put it euphemistically, about what his doctor and others have told him.

Are you sure the doctor and the facility are withholding information? What discussions have they had, then, and who with?

Your question points up the confusing nature of a dementia diagnosis. I'd call it a conundrum, a dilemma, an enigma.

IOf course it is fair and ethical that any patient should be informed about of the nature of their own medical situation, but in the face of dementia this is problematic. You are providing this information to someone who can no longer properly process information because the diagnosis involves deterioration of the brain.

The mechanics of understanding one's own situation are severely compromised in the face of a diagnosis of dementia. How can you process information about your brain when your brain no longer properly processes information?

Consider a medically healthy adult who has anxiety and depression, and who can attend therapy and take medication. They can take responsibility for their health.

Someone with dementia has lost the ability to care for themselves in that way; that is perhaps why it is called Memory CARE, and also why we have POA and other legal documents in place. We are now in the position to take care of our loved ones and do the right thing for them. Part of that is deciding what information will make their lives better, what information is necessary and/or what may be potentially harmful. If you and your family feel that the AL facility is taking good care of your FIL, it's now up to you to decide how to explain or not explain his living situation to him.

There's no right or wrong answer. At this point it's whatever works best to make him feel calm and comfortable.