This is the most helpful and encouraging article I have ever read. Thank you!! I think this is an area many of us see as taboo to talk about and yet it is one of the most emotionally wrenching things I’ve experienced with my husband’s progressing dementia (as if there were any other kind). Just the encouragement, or even permission, to set and reset boundaries as the disease progresses somehow makes it a bit more bearable.

It’s probably always going to place us on the horns of a dilemma (so to speak). But knowing that I can be kind and loving and caring without subjecting myself to physical sexual abuse from a formerly gentle and caring lover is immensely freeing! Yes, he gets unhappy about it and obsesses over the fact that 2 hours after sex, he’s convinced we haven’t made love in at least 2 weeks. His boundaries are gone; mine have to become crystal clear.

So far, one thing we’re doing is keeping a calendar where each time we make love, he circles the day it is. That lets him know he’s not as deprived as his mind is telling him. He can go check the calendar. When he doesn’t remember, I can gently remind him and we can even make a different mark on the next day we plan to repeat. After damage to and rehab for my pelvic floor muscle, my doctor suggested skipping 2 days between “dates”, as my husband calls it. That has helped and when he know it’s “doctor’s orders”, it reduces the hostility. I have also had to learn to refuse him certain positions, frequently remind him to be gentler, etc.

We agree he never wants to hurt me, so we talk honestly about what does hurt me, and it’s a strong enough emotion that he often remembers for at least an hour or two. But I always have to start over each time with the “coaching”. As you can hear — not much romance in this.

But as the article pointed out, the need for affection and a feeling of safety only gets stronger. While I secretly wish (well now the secret’s out, isn’t it?) the part of his brain that creates sexual desire would shut down, I don’t see it happening. In fact, someone knowledgeable told me “that’s the last function to go”. So we’re settling in for the long term.

The negotiated truce is that he will have sex somewhat less frequently and more gently than he currently prefers and I will have sex somewhat more frequently and with more “gentleness coaching” than I currently prefer.

Side note: adding to the complexity — his body takes at least two days to “reload” but he has no awareness of this and angrily denies it when discussed. So that can mean he wears himself (and me) out, trying and trying, if we don’t get the timing right. (Another reason the calendar helps.). He has also lost almost all strength in his arms and upper body, so there’s the issue of him collapsing on top of me early on, which exacerbates some back problems I have. I say this not to violate any privacy; rather to share some of the less pleasant and often non-discussable issues so if you’re experiencing them you know you’re not alone.

Our solution is not perfect nor is it final. But the fact that we’re able to communicate has helped. It’s a journey for sure, with unwelcome surprises round many corners. It’s important that we on this site keep supporting each other by not respecting taboos that are now irrelevant to our situation.

Personally, we’re fighting to maintain some kindness and affection and enjoyment of each other for as long as possible. It’s a frustrating goal, but one I find worth fighting for.

As Tiny Tim will soon be saying as he does every year, “God bless us every one!”