In 2017 things seriously started to shift. This was also in conjunction with a more severe hearing problem. I used to think that his symptoms had psychological underpinnings but now it seems pretty clear that it is neurologically based. I also feel the neurological component has been happening in a milder form for many years but it got worse with having to accept the limitations of aging and his hearing loss. He has no awareness of this issue. He thinks things are fine given the insanity of the world right now. His children live on the East and West coasts and he speaks with them, by phone, 3 to 4 times a year. I don't see them being involved in his care. It also might be difficult to tell them something that he would see as a lie and which they would not be able to discuss with him. He doesn't see a problem and therefore, he is unable to take responsibility for difficult things when they come up. They're always someone else's fault.....me and a former doctor get the brunt of it but it will happen with anyone (including his children) who is too much of a challenge to his "I'm fine/nothing is going on" narrative. I'd like them to know so that they could have a better understand of their father's behavior as a legitimate, neurological issue. My hope would be that could foster a bit more of a connection. I also know that greater connection will not be possible because of the Anosognosia. His children are not psychologically inclined and tend to operate more on the surface. I'd appreciate any thoughts/support you might have on this situation. Either way it feels like a double bind/catch 22. If I say nothing, I'm withholding important information from his children even though no one has asked me. If I say something, I risk alienating my husband and disrupting a newly established balance (right now we are living in separate apartments in the same complex). This balance can easily tip. My intention is to do the best I can for all involved which now, more consciously, includes me. Thanks for listening.
You don't tell your husband about the email. In the email you make it clear that his diagnosis cannot be discussed with him because he thinks nothing is wrong and it will upset him.
An important issue in all this is whether you and your husband have assigned PoAs for yourselves? (and hopefully, not each other) If neither of you have this in place, as well as Advance HEalthcare Directives, DNRs and Last Wills, then when he (presumably) passes before you and his children come expecting an inheritance, it will all go smoothly and there won't be any misunderstandings.
Navigating blended family dynamics can have minefields that are only exposed once someone smells money. Protect yourself now and into the future. You need to have a well thought out and financed plan.
I wish you all the best as you prepare with wisdom.
I'm curious about your living in separate apartments, and your initial concerns that his symptoms were mental illness rather than dementia. People can certainly have both, my mom does. How is he handling his day to day life, living somewhat alone with dementia? I'm sure there must have been significant behavioral challenges before his diagnosis for you to decide you needed a separate apartment. I hope you will continue to prioritize your safety as well as his.
However, I am considering my relationship with my own father, who is 85, and his wife, who is just 3 years older than me. They live in my neighborhood, so I see them regularly, and talk on the phone weekly. Sometimes I wonder if he is slowing down mentally, or showing any signs of dementia. Obviously, I can see any changes myself when I talk with him. But, I feel that his wife has a better sense of how he's doing, and I hope she would share any of her observations with me.
So, really, you know the kids and how they would respond to this information from you. Just explaining that you see these changes in his behavior, which he is unaware of, and tell them to look up "Anosognosia" so they have a better understanding.
I don't see how that would be upsetting for your husband. You don't have to tell him you shared this information with his kids. And the kids would be insensitive to bring it up or confront him about his failure to recognize his condition. If you think they would, then just don't tell them. Let them form their own opinions from their phone calls with Dad.
What if you told the kids quite simply “I’ve noticed you dad has been more forgetful/ quicker to anger /more easily confused / [whatever symptoms] in the past few years and it seems to be getting worse. He does not appear to be aware of it however. From what I have read, this is common.”
My dad had frontotemporal dementia and I was the one who had to really urge my mom to get him to a neurologist for a diagnosis. She was in denial even though he was doing crazy and dangerous things and acting totally different from his personality the first 70 years or so of his life.
Here are some facts to help you fulfill the caregiver part:
Key Aspects of Confidentiality:
Legal/Professional Duty: Caregivers must secure records (paper and electronic), protect passwords, and maintain privacy in compliance with regulations.
What to Protect: This includes medical history, diagnoses, medications, Social Security numbers, financial data, and photos.
Information Sharing:
CONSENT
Data can generally be shared with authorized individuals (like family) if the client gives consent or does not object.
When to Disclose: Confidentiality can be broken if there is a legal requirement to report abuse, neglect, or if the client is in imminent danger.
Tips for Security: Do not post about clients on social media, never discuss clients in public, and keep documents locked away. [1, 2, 3, 4, 5, 6, 7, 8]
And if in fact he has been diagnosed with dementia, why in the world would you allow him to live by himself, as no one with any of the dementias should be living by themselves as it's just too dangerous?
If you're not wanting to be married to this man anymore then just go see a divorce lawyer to see about splitting any assets, and either let the state take over your husbands care or his children if they opt to.
The adult children of my husband and his family refuse to believe first off that he was diagnosed with Covert Narcissism and Covert Psychopathy traits, around 12 years ago. When he was then diagnosed with MCI, this was denied or laughed at as just a normal aging issue. This family as well lives far away and there is zero depth when it comes to connection or sharing. Emotions and a conscience, seem to be for others. I was informed " We have our own lives and it is a father's duty to look after his kids, not a kids duty to address the parent's issues." A sad statement.
I have tried to explain anosognosia to them, fell on deaf ears. I have tried to explain that SOME of the ongoing lies he tells are part of his personality disorder intertwined with Confabulation, a part of his cognitive impairment. They prefer to stay in denial. Perhaps as a means of avoiding care taking or guilt, they have a non-existent or shallow relationship. Mind you, they have him on a pedestal. He is estranged from one grown son for 8 years as a result of they lying. The other son just brushes off concerns and refuses to discuss concerning behavior that he himself has witnessed.
I would also look at if he was a kind, thoughtful, honest man with integrity prior to this behavior. I can see your Catch 22. Unfortunately, hearing loss left untreated interrupts cognitive health.
However, if they do not ask their dad how he is, if they do not pick up on unusual behavior when they do talk to him, if they have not expressed concerns to you, then is there any point in telling them?
If there a formal diagnosis of any kind? Anosognosia explains the lack of insight but has Cognitive Impairment been suggested?
Are his adult children aware you live separately? Have they questioned why this is happening? My concern for you is your husband either lying/confabulating as to the reasons why you live separately.
You are being honorable in wanting to not betray your husband ( through his eyes) while at the same time keeping his children aware.
I go back to the questions posed above. Also, examining the character of his children are important. If they suspect something is amiss cognitively, could they try to get a POA and could this impact your financial well being?
I am sorry you are going through this and I apologize for expressing my own experiences and not really coming up with an answer. Sometimes we need to ask ourselves the above questions and perhaps get advice from a professional. Have you asked his family physician what he believes is the right avenue?
My heart is with you and I wish you all the best.
All my best from across the border in British Columbia.
Until you have some idea about this, there is probably not much you can tell his children.
How can you live separately? You will need to live with him as he will not be able to live alone. This sounds a bit complicated.
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