Example: Julianne Crough (a bratty little girl from Jeff's childhood) is now married to Rick Steves (the PBS travel series host,) and they are being very sneaky and selling chimney pots (an architectural feature) of the most shoddy quality. Jeff and several others are planning an intervention in which they will warn other people not to buy. Terry Schoener (the retired pastor of our church) is planning to make a related announcement from the pulpit.
and related visual hallucinations. I know all about those now too.
I often have really weird dreams like that. I figure when I'm sleeping, my brain is doing file maintenance, and so lots of unrelated stuff gets thrown up, and my brain tries to put it all together. Makes for some very entertaining dreams!
But I cannot imagine what it must be like for your husband to experience this while awake. Does he get upset about it, or is he just kind of matter-of-fact?
Steve started confabulating very early on. He knew every famous person and had done anything anyone mentioned. But it was a pleasant experience for him, so it didn't bother me. Funny story--social security sent him to a psychiatrist for eval for disability benefits. The doctor came out after talking with Steve and said to me in an excited voice "He's confabulating!!!" I had no idea what that was at the time. Later on, I found out it was common with AD, and also that the guy was a child psychiatrist. No wonder he was so impressed by Steve's confabulation--he had probably never seen it before.
Interesting. AD just sort of creeps across the brain in an organic (and therefore slightly different in each case) pattern, which must account for the variations in when we experience certain symptoms. Sometimes Jeff can tell me these things fairly fluidly, and sometimes he's working through a real speech deficit and it comes out in halting phrases with lots of word mistakes.
when you dont have a name for confabulation, it can wear and tear on your psyche. i had no idea what it was til after it stopped:) like marilyns spouse, mine had done and traveled to every corner of the planet and absolutely nothing could impress him. he always had a condescending reply to any topic anyone brought up. i guess that is probably where people took notice and ran for the hills:) you cant have a conversation with a person who has nothing left to experience.. :) oh my those were the days. glad its over funny how this seems to be yet another very common trait of dementias. and all types.
I think Steve is still confabulating out the wazoo. Even though his communications skills are waning, he always says he remembers everything I mention. He can't possibly do that at late stage 6. Again, it doesn't upset him so I'm ok with it.
Despite the fact that Jeff has been impaired for as many as 10 years, the fact that his variant is PCA has made it a slightly different ride. He can do virtually nothing mechanical, or requiring proper visual assessment, which can mean I help with everything from placing a fork in his hand to positioning him so that he can get in the car without falling on his rear end. Nevertheless, I have been able to do such things as travel with him up until this winter because--while he would generally have no clue where we were or why we were there--he knew me and trusted me, and was perfectly content once I reoriented him.
Clearly now, the areas of brain lesions have progressed to where I'm now getting a crash course in classic AD. The confabs and visual hallucinations are progressing to nonstop. Because he's ambulatory, his wander risk has skyrocketed, and he doesn't reliably know who I or anyone else is. It's pretty goofy. Now I know what everyone's talking about. It just encroached over us like kudzu this winter.
This is new to me. Our journey has just begun and now I know what's been going on with DH. He keeps saying that he should not have retired because he promised "them" he would stay until the last job was completed. He retired only 3 months early and had to because his cancer had returned and he needed surgery and chemo. All this occurred over 15 years ago and none of what he kept saying is true. But I guess it is to him. I didn't know this was part of this awful disease. Learning all the time.
emily--Are you saying that perhaps the brain is so compromised that Jeff's variant will pretty much resemble classic AD from here on out? It sounds like maybe he's approaching or has reached that point. Have you ever asked his doctor that question? The things you do to reorient Jeff sound exactly like the things I do for Steve--placing food or drink in his hands, positioning him to sit on a chair or toilet, etc. He still knows/trusts me, will cooperate, and would be willing to go anywhere with me (if I was crazy enough to attempt to take him)! Jeff sounds better verbally, but I think the drop in Steve's verbal communication skills came earlier than normal.
Maybe I am saying that but...who knows? Yes, I should shoot an email to the neuro N.P. to see what she says. The thing that concerns me the most right now is the rapidity with which these changes are occurring. I thought that there'd be moments of losing who people are, but that it would be intermittent and only get gradually worse. In fact, it's snowballing over the course of only a very few weeks. It's like an anti-growth spurt.
Emily, I'm sorry to hear about the rapid changes in Jeff. I also went through a similar experience in 2010 when my DW went from early stage 3 to couldn't recognize myself or our children in less than 3 months. Hang in there.
Well, today is lunch and assessment at the ALF. I think that assessment means I answer a lot of questions that will help them ascertain how much help is required for showers, dressing, etc. Then we've got a ppd (tb prick test) to complete tomorrow...and then we'll see. This process has been as much of a surprise to me in how fast things have gone as it has to anyone else.
I did get the urine test strips several of you recommended, but the readings were negative last week and this week...so I think it's just brain stuff.
I can say, with decisive clarity, that my hat is off to anyone who has endured the "insane" part of AD for years as a solitary caregiver. I feel like I can barely eat and sleep, and it hasn't been real long.
Good luck today! I think your difficulty in handling Jeff's new issues is partially due to how fast it came on. With Steve it was incredibly hard to endure, but because the changes happened gradually, I had more of a chance to adjust.
It went well. Jeff thought he was in a very nice place, and didn't seem concerned that I was answering lots of questions about him. Depending on how promptly his PCP gets the paperwork completed, he may be moving in middle of next week. Today I filled out a thick binder full of stuff. Honestly, his new need for constant surveillance combined with processing this placement stuff is draining in an entirely new way.
I know. That's what I mean. I'm only 50 years old. My health is good. While it's been a long (almost decade!) ride, he hasn't been particularly challenging up until this year, and I'm exhausted. There is clearly great strength here among my compatriots on this board.
And you, dear Emily, are just as strong as everybody else! This disease doesn't discriminate: it wears down the young, the old, the well, the sick, the rich, the poor, everybody in its path. Wishing you peace and even more strength as you move to the next phase of your and Jeff's journey.