Question from new member

Hello, and welcome—although I an sorry your family is going through this. It is a hard journey.

There’s a lot to say, so I’ll stick to two things:

The stories. People with dementia very commonly tell stories that are a mishmash of facts from their own past, facts from other people’s stories, and things they recall from books, TV, films, newspapers, etc. My dad went through a period when he reported wartime horrors he had experienced—but from his uncle’s military service, not his own. (I knew the facts from other sources.) And now there’s a lot about people who died long ago. As a response, it is better to accept their reality if that is possible: “That must have been so hard for you,” “I am sorry you had to go through that,” or “No, I haven’t seen Grandma in a while. How’s she doing?” Sometimes he mixes up the two women he was married to—and with whom he lived very different lives. This is understandable but hard for me, since the healthier relationship was with my mom. Sometimes I say “huh” and try to change the subject, and sometimes I just can’t manage to enter the alternate reality, and I say, “Was that (Other Name), maybe?” If he disagrees, I let it go. Arguing is fruitless—and I know it will all be forgotten very quickly…by him, at least. For me, it’s just another pain that this disease brings.

Your mom. You say, “Mom is showing the wear-and-tear of the situation.” Her health and well-being are serious concerns. It is not uncommon for a caregiver to pass away before the PWD, and even more common for the caregiver to neglect their own health. Make sure mom is going to her own medical appointments and is getting adequate rest and relief from direct caregiving. The 24/7 at-home situation will only grow more difficult over time. It will be helpful to consider a Plan B now. Also, the legal questions—about DPOA for both of them, HIPAA access at doctors’ offices, etc.—are important to consider asap.

Folks here are compassionate and knowledgeable, and collectively they have seen it all. You’re always welcome here.

@PSue

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

It sounds as if you are describing confabulation aka conflated memories. This is an early feature of the alcohol-related dementia dad (for him it was pre-diagnosis) had, but it can come a little later in the progression of some of the other dementias. The fixation of the past is due, IMO because a PWD is incapable of making new memories or even recalling their own more recent history. This can kind of cause them to time-travel. Dad spent a lot of time in the early 1960s and mid-1970s.

This is when there is general recall of an event, but the details are missing because of memory issues. This causes the PWD to "fill in" the missing information with something that makes sense in the moment— often they will assume the "hero" or "victim" role in any re-telling. Sometimes the people with them will be inserted into the story because they no longer have the ability to immediately recall who really was there.

A lot of my dad's conflated memories were just crazy nonsense; he accused me of stealing a Degas painting from him; it was a museum poster that decorated their first apartment in 1959 that was tossed when they furnished their first home a few years later.

But other memories had a dark side. For a time, he accused me of leaving my kids in a bar to go have sex with some random dude. He did this in front of my then middle school-aged son. Fun times. He did get a call from a bartender to pick up kids— twice, in fact— but it was his sister and mine. Not me. Another theme was me stealing $360K from him. (Always $360K. It took a while to suss out, but it

was a loss from bad trading before he forgot how to log on to his laptop)

A number of his stories focused on his own infidelity but twisted to make mom the bad guy— reliving that plus the re-write was hard on her. As the disease progressed, he started to insert himself into TV shows. Specifically, mom's crime dramas and the weather channel. It used to amaze me that he couldn't recall eating lunch but could tell me all about being kidnapped and murdered the night before. Or he'd look out the window and describe palm trees blowing in hurricane-force winds from his sunroom in Pennsylvania.

This helped mom understand some of this but she still carried a lot of hurt.

HB

Sometimes the stories come from TV or movies, and some families have found some relief by limiting the shows that are available. No drama. Nature shows and non-violent documentaries. Shows from way back that they may remember, but sometimes you can figure out where the plot is coming from.