My boyfriend has dementia

F

FarAwayLover

New member
Background -

Back in the fall of 2013, my high school boyfriend, Jacques, contacted me after having been out of touch for 38 years. We decided we both still/again cared about each other and had what I guess would be best described as an emotional affair, at least on his part. (My husband Clyde was informed pretty quickly, Jacques' wife Artemis was not.) We were both checking our e-mail _way_ too often! Clyde was OK - we’d heard of polyamory before. Clyde even said that Jacques was the person he could most easily imagine being OK about my having sex with. (badly garbled syntax!)

Jacques mostly wrote me from work, had and still has no personal e-mail account of his own. E-mails from home were from the Artemis' account. Artemis didn’t know the extent of our contact or the history beyond my being an old friend. E-mails to/from her account were more chatty and less emotional. Jacques was pleased when I said I thought I was falling in love with him again, but said that the way to not hurt Artemis was to not tell her. After a bit of prodding, sending him links about polyamory (and even Jacques talking on the phone with Clyde), Jacques broached the subject of polyamory. Threats of divorce, one last phone call for him to tell me himself that he has to cut all ties to save his marriage, they go to marriage counseling.

See "Wasn't looking for poly; LD BF's wife is pissed"
http://www.polyamory.com/forum/showthread.php?t=65281

Fast forward 9 months. Clyde and I are going to visit the city where Jacques spent his childhood, and I break silence to let him know that we are making that trip. It was the place where we had thought we could meet up with each other, and when things had fallen apart early on in the fall of 2013, I had promised that I would be in touch about such a trip when it materialized. Jacques responds that I haven’t given him much notice, but that hell see if they can get plane flights and if his relatives can put them up. But that he might get some pushback form Artemis. WTF! He hadn’t checked with his wife before saying he wants them to go on this trip?!

In a couple of days I get a curt e-mail from Artemis saying they will _not_ be travelling, and I figure, well, I tried, and that’s the end of it. Turns out it’s _not_ the end of it. The next Monday I get a bizarre e-mail on Monday asking for contact information for this woman Jacques has found who is our daughter. She’s 29, and I haven’t seen him in 39 years. Uh huh… So he gets talked out of that one, but on Tuesday he’s found a 41 year-old woman who is our daughter, and this time he knows about her because _Clyde_ told him about her. He has copied his boss on one of these e-mails, and things are definitely weird. He tells both a screening psychologist and a psychiatrist that he is a convicted felon because he assaulted someone at the wedding of “our” daughter. By Friday he’s out on medical leave.

It takes two or three weeks for tests to get run and for a tentative diagnosis of frontotemporal lobe dementia (FTD) to emerge. Symptoms include personality changes and loss of inhibition. Which is probably why he reached out to me in the first place after 38 years, and why he was so weird about how he treated Artemis while we were getting reacquainted. I hear the devastating news from Artemis, then a few days later a considerably watered down version from Jacques, who says there’s been “some” reduction of the frontal lobe of his brain, as opposed to “significant” shrinkage of both the frontal and the temporal lobes. And then I hear nothing. For 6 months.

See http://www.polyamory.com/forum/showthread.php?t=71175
"Be careful what you ask for"

I sent e-mails periodically. Chatty things about what’s going on with life. Occasional requests to please be able to come and visit. Silence. Well, I figured that Artemis had a lot on her plate, and if no one was telling me to actually _go away_, I was going to keep writing. But I will admit the the frequency tapered off.

Six months after I last heard from Artemis and Jacques, I get an e-mail response from Artemis. Jacques is out on disability, the state took away his driver’s license due to the dementia diagnosis, he’s following her around like a puppy, he can’t take care of his computer or things around the house the way he used to, but he doesn’t think anything’s wrong with him. That makes things much more painful for Artemis than they are for Jacques. It take me a week, but I get up the nerve to pick up the phone and call. It’s confusing at first because, remember, she has the same first name as me, but goes by her middle name. So when I announce myself, she thinks it’s someone asking for her. We finally get _that_ straightened out!

After we talk for a while, she asks if I want to talk to Jacques. Sure! During the conversation I ask about being able to travel, and he says, Oh I didn’t tell you, I have FTD. So that got confirmed. I hadn’t actually heard, but had assumed…

At least now we're in communication...

More later...

FAL

--------------------------------

M - Me - Mandelbrot - female, 60 - _trying_ to figure out if I'm poly
Clyde (previously B) - 57 - my husband for over 35 years
Jacques (previously JP) - 59 - my high school boyfriend, newly appeared in the picture fall of 2013 after 38 years; very long distance; haven't actually seen him; diagnosed with frontotemporal lobe dementia
Artemis (previously A) - 67? - Jacques' wife of over 32 years
 
Thanks for posting your story here. It must be a bittersweet time for you with Jacques' condition.
 
Just wanted to add another note of encouragement. It's sounds like a challenging time ahead.

hugs,
Galagirl
 
Dear FAL,
This must be very difficult for you. Maybe not as difficult as for Artemis, but still...

Does she know about the romantic aspect of your past communication? Does she even know that you were high-school sweethearts?

It's really nice to read how you're not just washing your hands of him/them and walking away, especially since that would be so easy with the physical distance involved.

As a member of a family with a history of Alzheimer's - and about to reach the 60 mark myself - this subject holds a particular interest for me. I'll follow your progress...

Thanks for sharing.
A HUGE hug,
MFFR
 
A possible visit...

Thanks Kevin, Gala Girl and MFFR for your kind words.

MFFR,

Artemis certainly knows at least _some_ about the nature of our communication. She knows Jacques sent me two Adele CDs. She knows I was his first girlfriend. She knows that things got to the point of my introducing Jacques to the concept of polyamory, and his bringing it up to her, with disastrous consequences. Back in the fall, after he went out on leave, she referred to me as an old friend who cares about him.

I’m in treatment for compulsive hoarding. Clyde says that I don’t let go easily, and that this goes for people, too. I guess this time it manifested itself in my being willing to write chatty e-mails and sending them off into the void.

Clyde and I had dinner with my college roommate last week. She remembers my talking about Jacques, and finds it quite understandable that I’m sad, even though I haven’t seen him for 40 years, at this point.

I asked Artemis about going out to see Jacques. “What, you and Clyde?” She thought that would be OK. I’m thinking I’d like to do it sooner rather than later, since I have no idea how fast he’s going to deteriorate. I have a friend who’s in family practice who told me last fall that either way - whether I go to see Jacques or not, I’ll have regrets.

I have a project at work which has an ambitious release date of the end of May. My boss said I should still be able to take some vacation, but when I asked again in late March (after having talked to Artemis and Jacques), he thought it would be good if I could take it in early April. A week before Easter I wrote and asked about possibly coming to visit _soon_, explaining about my work project. And also saying that I wanted to help, suggesting a few things that perhaps we could do while out there. I hadn’t discussed this with Clyde, but panicked as I saw that plane flights less than a week away were considerably more expensive.

It took a few days for Artemis to write back. I had been planning to call, but I still have trouble mustering up the nerve. I was deciding that I needed to give her some space, and that if we ended up buying expensive plane tickets because of the trip being on short notice, so be it.

The reply that I got back _totally_ shocked me! How about if Jacques comes east and stays with us for a few days? She's not ready for house guests (not that I had been thinking of staying at their place, but I guess that wasn’t clear.) They could use a break from each other (translation - _she_ could use a break from _him_), and she needs time to work on documents with the lawyer, and taxes, which are both hard to do with Jacques around all the time. Well, I guess in spite of the past history, she’s trusting me and taking me seriously about my offer to help.

But see previous reference to compulsive hoarding. Having a house guest is actually non-trivial. We could turn the place upside down and shove a lot of things into storage. Clyde is still wrapping his head around this, and hasn’t decided if he’s willing to participate in this. Which is _not_ a jealousy thing, as far as I can tell. But not being sure how much he wants to disrupt his life for someone he hasn’t even ever met. “What’s in it for me?” Last night he mentioned the possibility of Jacques coming out, but Clyde not being around for the visit. I’m sure that’s _not_ what Artemis had in mind… Clyde said he needed time, and I haven’t asked him about it again yet.

So still trying to figure out possibilities and logistics. Could we show up and spirit him off on vacation? Could he come here and the 3 of us go off somewhere, so the state of the house doesn’t matter?

Lots of questions…

FAL

--------------------------------

M - Me - Mandelbrot - female, 60 - _trying_ to figure out if I'm poly
Clyde (previously B) - 57 - my husband for over 35 years
Jacques (previously JP) - 59 - my high school boyfriend, newly appeared in the picture fall of 2013 after 38 years; very long distance; haven't actually seen him; diagnosed with frontotemporal lobe dementia
Artemis (previously A) - 67? - Jacques' wife of over 32 years
 
Re:
"Could we show up and spirit him off on vacation? Could he come here and the three of us go off somewhere, so the state of the house doesn't matter?"
Click to expand...

That sounds like the best solution to me.
 
FarAwayLover said:
I’m in treatment for compulsive hoarding. Clyde says that I don’t let go easily, and that this goes for people, too. [...] my college roommate [...] remembers my talking about Jacques, and finds it quite understandable that I’m sad, even though I haven’t seen him for 40 years, at this point.
Click to expand...
This is so me... but I'm not in treatment for it. For 2 years, I hadn't let anybody through my doorway, because I was ashamed of the state of my house. This year I'm going to celebrate my 60th birthday and am inviting perhaps 200 guests. They won't all show up and the party's going to be a 2-week-long camp-out by the mountain stream, but everybody who does show up is going to have a look at the house... and people with REALLY young children will be sleeping there, so this is giving me a deadline to get the place into a presentable condition.

But the bit about "that this goes for people, too" also fits me like a glove. It's so hard to let go. You don't happen to be Cancerian, do you?
FarAwayLover said:
I have a friend who’s in family practice who told me last fall that either way - whether I go to see Jacques or not, I’ll have regrets.
Click to expand...
You should consider this. I don't know who said it, and I probably won't get it word-for-word, but here goes: "We never regret the things we did half so much as we regret the things we didn't do." If you do this, you might kick yourself and say: "How could I have been so stupid as to think that this might turn out alright???" But my guess is that if you don't do it, you'll never really forgive yourself.

I'm crossing my fingers for you,
MFFR
 
Headed west

Hi MrFarFromRight,

Nope, can’t say I’m a Cancer. I’m a Scorpio.

So, Clyde isn’t feeling very comfortable about feeling responsible for Jaques’ well being if he should come to visit us. So what we’ve finally come up with is that I’m going to the West Coast by myself to visit Jacques and Artemis, while Clyde goes to visit his mother in MN. We’d already planned the MN trip, so I can get away from the big project I’m doing at work, and fortunately Clyde pays a nominal ($30) extra fee to Sun Country Airlines so we can rebook my ticket to MN for some other time.

I wasn’t sure how Artemis was going to take this suggestion - whether she was only going to feel comfortable if Clyde was along for the trip. But that seems to be OK. She asked Jacques what he thought, and when I checked with them the next day, he told me, “I’d like to see you.”

Artemis also said they’d come up with another idea. Which may or may not still be on the table. After the grandkids get out of school, Jacques could fly East with his grandson. That way they wouldn’t have to worry about making sure he got on the right plane. And then it would be OK for Jacques and his grandson to stay in our community guest room, which is in another building. I’d been concerned that he couldn’t do that by himself - that he’d get disoriented/lost. The thing is, I don’t have a handle on what exactly he can or can’t do, and I’m not sure Artemis does either. There’s just a bunch of things they haven’t tried, like having him on public transit. She did say, “Well, he’s not a blithering idiot.” It’s still unclear whether or not Clyde would be comfortable with that, but there’s time to figure that out. I think it will help for me to have actually seen Jacques and have a better handle on how he seems.

I’ve told her that I want this to be a mini-version of the respite she would get if Jacques came out here, so she should think about if she wants to go out by herself, or have the house to herself and have us get scarce, or what. She’s not up for house guests, which had never been my intention anyway. (I _hope_ that’s not why I never got any response to my requests to come out and visit! It would be really sad if we lost all this time due to a misunderstanding…) There are some Airbnb locations in the neighborhood - some even look they’re within walking distance. Plus I’m being offered some cheap hotel rates now that I’ve booked the flight. Which I finally did last night, after _way_ too much research! I’ll rent a car, and stay nearby, and we’ll see what happens…

It’s been over 40 years since I last saw Jacques. Under normal circumstances I think the chemistry would still be there, but, given the situation, I have no idea what to expect.
We’ll certainly be by ourselves some of the time - the whole idea is to give Artemis a break. Well, OK, the _main_ idea. I do really want to see Jacques, and am glad to be doing so before things get any worse. I joined an FTD support forum, and reading it is depressing.

I do really want to help, and it feels like everything I’ve tried _so_ far has fallen flat. I found a support group for FTD caregivers, but it’s on the order of an hour away. Which I thought would be OK by LA driving standards, but she says it’s too far. I still get apprehensive when I pick up the phone to call - I hope I’ll get over that. Meeting her in person and having a face to go with the name should help. Wonder if a hug is appropriate?

FAL :D

--------------------------------

M - Me - Mandelbrot - female, 60 - _trying_ to figure out if I'm poly
Clyde (previously B) - 57 - my husband for over 35 years
Jacques (previously JP) - 59 - my high school boyfriend, newly appeared in the picture fall of 2013 after 38 years; very long distance; haven't actually seen him; diagnosed with frontotemporal lobe dementia
Artemis (previously A) - 67? - Jacques' wife of over 32 years
 
I suppose you'll have to read her body language, but I would lean in the hug direction.
 
What's on the table?

So, an interesting question - is anything beyond a hug and a peck on the cheek with Jacques off the table?

I have no idea what it’ll actually be like to see him, whether there’ll be any chemistry there or not, but I’ve been contemplating the thought anyway. And it seems like I should get it out now to have any hope of getting some reactions before the trip is over.

Intellectually it seems like one of those things people talk about on this forum, where one can have thoughts, but that doesn’t mean you have to act on them. That if I want any hope of remaining friends and in Jacques’ life, it’s not even a subject I (or Jacques, really, for that matter) can broach with Artemis. Of course, one of the symptoms of the disease is lowering of inhibitions, so we’ll have to see if he has enough sense to not broach it to Artemis, if it occurs to him.

And I don’t understand the disease well enough to know if I would be taking advantage of someone who’s really in a diminished capacity, kind of like the stories you read about having sex with mentally diminished females. (I’m sure I said something politically incorrect there but I don’t know what the preferred terms are.)

Sigh.

———————

She did sound really glad to hear from me when I called today. I called from work, so I think she didn’t recognize the number. She sounded pretty tentative when she answered the phone but when I identified myself, it was a much warmer, “Oh hi!”

FAL

--------------------------------

M - Me - Mandelbrot - female, 60 - _trying_ to figure out if I'm poly
Clyde (previously B) - 57 - my husband for over 35 years
Jacques (previously JP) - 59 - my high school boyfriend, newly appeared in the picture fall of 2013 after 38 years; very long distance; haven't actually seen him; diagnosed with frontotemporal lobe dementia
Artemis (previously A) - 67? - Jacques' wife of over 32 years
 
Re:
"So, an interesting question -- is anything beyond a hug and a peck on the cheek with Jacques off the table?"
Click to expand...

That's a question for Artemis.

Re:
"We'll have to see if he has enough sense to not broach it to Artemis, if it occurs to him."
Click to expand...

I don't know how far gone he is but I am thinking the responsibility shouldn't be left with him. As people sink deeper into the depths of dementia, they become more and more like a child. If you look at it that way, maybe you conclude that nothing beyond friendly gestures would be appropriate.

Sorry there are no easy answers here.
 
kdt26417 said:
Re:


That's a question for Artemis.
Click to expand...

Yeah, except I'm afraid that even bringing it up would blow everything out of the water, and she'd never let me see him again.

kdt26417 said:
Re:
Re:


I don't know how far gone he is but I am thinking the responsibility shouldn't be left with him.
Click to expand...

I'm going to have to see how far gone he is. She said "he's not a blithering idiot," and seemed to think it would be OK to put him on a plane by himself to travel cross-country. And I wasn't thinking of leaving it up to him, so much as wondering if he would bring it up with Artemis if the thought occurred to him, even if it was a bad idea.

kdt26417 said:
Re:
As people sink deeper into the depths of dementia, they become more and more like a child. If you look at it that way, maybe you conclude that nothing beyond friendly gestures would be appropriate.

Sorry there are no easy answers here.
Click to expand...

Yeah, I know...

Thanks for the feedback.

FAL

--------------------------------

M - Me - Mandelbrot - female, 60 - _trying_ to figure out if I'm poly
Clyde (previously B) - 57 - my husband for over 35 years
Jacques (previously JP) - 59 - my high school boyfriend, newly appeared in the picture fall of 2013 after 38 years; very long distance; haven't actually seen him; diagnosed with frontotemporal lobe dementia
Artemis (previously A) - 67? - Jacques' wife of over 32 years
 
Hi, FAL!

You're wading into the waters of ethics here. If you step off the ridge into deep water (crossing established sexual boundaries) WITHOUT Artemis knowing about it, that's what is known as "cheating". I've done it in the way-distant past, but I've decided that I don't ever want to do it again. Speaking personally, I don't think that just sex is worth causing that much trouble and upset.

Let's imagine a situation here: You and Jacques find that the sexual attraction is as strong as ever...or even stronger. You jump into an "irresistible" sexual relationship. Artemis finds out. You find out that Artemis is the VERY jealous type, because she kicks Jacques out. Are you willing to become his FULL-TIME caretaker? (Possibly ONLY caretaker, if Clyde feels cheated and dumps you.) Have you the preparation for that?

Surely Artemis knows that you and Jacques were a couple in high school, that romance (and sex?) was/were an important part of your relationship with one another. I think that she could handle - might even appreciate - your being perfectly frank with her. Speak to her of your doubts, ask her how she'd feel if you got as EMOTIONALLY attached as you were. Tell her (but only if it's true) that you have no intention - or even dream - of stealing Jacques away from her. Come out with it and tell her that you're confused.

If you do, she can go one of several ways: she could become your enemy, she could become your ally, she could become your friend.

IF she screams at you to GET OUT!!!... Well, what have you lost? Contact with Jacques, perhaps. But if that contact depends on skulking about with guilty secrets, I don't think that that's healthy for ANY of you.

She obviously cares for Jacques. She's obviously a decent human being. A real shit would have dumped him as soon as his dementia started up... Or do you think that she's only hanging on to him until she can get total control of his money?

Your ongoing telling of the developments indicate that she's warming up to you. Trust her... and prove that she has every reason to trust you.
"I don't know how far gone he is but I am thinking the responsibility shouldn't be left with him."

"I'm going to have to see how far gone he is. She said 'he's not a blithering idiot,' and seemed to think it would be OK to put him on a plane by himself to travel cross-country. And I wasn't thinking of leaving it up to him, so much as wondering if he would bring it up with Artemis if the thought occurred to him, even if it was a bad idea."
Click to expand...
I see TWO points here to consider. If Jacques - because of diminished inhibitions - brings it up with Artemis, she's going to feel more trusting of you if YOU brought it up first. [NOT "This is what is going to happen." but "This is floating around in my head and I want to talk to you about it."]

And if Jacques is far enough into dementia for it to be an issue (and he obviously is: read the title of this thread), you're morally obliged to be the "responsible adult".

Let me qualify that. My mother had Alzheimer's. Some of my siblings were denying her any dignity, treating her as if she was a complete child... LONG before she reached that stage. One sister shrieked at her: "Now, MOTHER, you've become like a child and we're going to have to treat you like one."

My mother got very upset at being made to feel useless, a burden on her family. I lived on a different continent but was visiting for 5 months. I'd come to take on my share of looking after her all in one lump. I wasn't allowed to. (I'm no longer a "Christian" and was therefore deemed unfit to care for her.) While staying in her house, I fought for her right to make those decisions that she was still capable of. I fought for her right to her dignity. I lost. 2 of my brothers heavied me into moving out 5 weeks before my flight back home. I had watched both of them demeaning and blackmailing my mother emotionally. I had heard 3 people on separate occasions telling my mother to get out of her own kitchen because she was "in the way". I told people: "If you're bothered by her being slow, YOU get out of the kitchen! It's HER house."

Dementia is SCARY! It's scariest to the person with the dementia. They should be made to feel usefull, appreciated, and loved. They should be asked for whatever help they're capable of giving... and thanked for that help, even if they botch the job.

My mother's dead now. She and I have never been able to replace those lost 5 weeks. She and I - living on separate continents - used to talk on the 'phone. After my visit, she went downhill fast. I asked my siblings to ask her now and then whether she'd like to call me, to remind her that she had that possibility. We never spoke together again. (When she was moved into a nursing home, I wasn't given the number.) I assume that they never reminded her that that was an option. I have never forgiven those 2 brothers... and probably never will. (I'm no longer a "Christian".)
 
So I visited Jacques in LA

The perfectionist in me has taken forever to write this. I don’t think it’s “ready” but I should post it anyway. It’s been way too long since my visit to LA.

MrFarFromRight - your reply came after I’d come back from LA. If I’d seen it earlier I might have done things differently, but no harm done, I think. Thanks for your support. It sounds like things were tough for you.

The question about level of display of affection didn’t come up. My stomach was churning when I rang the doorbell, and Jacques answered the door. I handed him the presents that I had brought. There wasn’t really a smile on his face. I couldn’t really tell if he was glad to see me. The hug I got was perfunctory. When I saw Artemis and asked her about a hug, she was like - oh yes, we all hug in California.

My long-time friend Pasquale was around for some of the visit. More about him later. But he’s a family practice doctor that I’ve known since we were both freshmen in college. He’s the one I go to for the real low-down on medical issues. He was the one I called when my mom was in a coma and I asked, “She’s gone, isn’t she?”

Pasquale lives a couple of hours from LA, and came and stayed with me for part of my visit and came on some of the day trips with Jacques.

I asked him what he thought of Jacques, not having met him before. “Flat”, he said. So he also saw the lack of affect.

But at some point during the visit I asked Jacques the question I’d been dying to know, “When did you find out that Artemis’ first name is Mandelbrot?” I think he said it was pretty early, and then I asked how it came up. He said she showed him her birth certificate. So that was after you moved in? Yes. I guess in some ways yeah, it was pretty early. Sounds like they had a couple of dates, he invited her to join him when he had a week of vacation, and when he was back from his out of town assignment, he moved into her basement.

I bet finding out her name was kind of a shock. “Yeah, I’ve only ever loved two women, and they’ve both been named Mandelbrot.” So it’s this weird thing where it feels like he know about feeling/having felt some emotion, but doesn’t know how to express it now. I learned from a friend who specializes in early onset dementia that apathy is a hallmark of his disease, FTD (frontotemporal lobe dementia).

I asked him about his yearbooks, because he had told me back in 2013 that he had run across them when they were cleaning out the garage. He said he only kept 2 - the one from his senior year because he was in it, and the one from his junior year, because I was in it. Again, it feels like in his head he knows he’s supposed to care, but doesn’t know how to show it.

Anyway, there wasn’t any chemistry there, at least not to me. And I never brought up the subject of sex or any displays of affection with Artemis. It felt more like encountering a long lost brother, but there wasn’t any romantic feeling. The only time we put an arm around each other was for the couple of pictures that got taken, and for the occasional coming and going hug. I don’t even remember if that happened every day, or just when I left for the airport.

———————————————————————

If/when I see Artemis again, I probably will bring up the subject of sex, but I now have a different context for it. I joined an online support forum for FTD caregivers, and I’ve been reading some about the sexual behavior of people with FTD, and they can lose interest, or they can become hypersexual, losing all sense of appropriateness. So I do want to be prepared and know what she’s OK with if the topic does come up.

I still miss Jacques when I think about him, but the Jacques I miss doesn’t exist any more.

Sigh…


FAL

--------------------------------

M - Me - Mandelbrot - female, 60 - _trying_ to figure out if I'm poly
Clyde (previously B) - 58 - my husband for over 36 years
Jacques (previously JP) - 60 - my high school boyfriend, newly appeared in the picture fall of 2013 after 38 years; very long distance; diagnosed with frontotemporal lobe dementia
Artemis (previously A) - 67 - Jacques' wife of over 32 years
 
That's a shame, FAL. It sounds most of his memory and intellect are still there (for now), but most of his emotional identity has left the harbor. :(
 
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