I want to start out by saying that I could argue either way—when it comes to this very sensitive issue—which is the not-so-small matter of whether or not it’s right to have a relationship with another person while you are married to someone who is no longer “available,” (for lack of a better word).
Now that can mean a lot of different things; so let’s understand emotional availability, verbal availability and physical availability don’t necessarily indicate sexual availability. I’m referring to marriages ands other long-term relationships where mutual respect and concern are keystones, and a deep abiding love persists.
Just as much as one might need friends and family around to support her or himself while caregiving, there might be a need for companions—totally outside the circle of friends known to you and your spouse/significant other as a couple. This kind of relationship helps many remember who and what they are outside caregiving.
In reality, as a couple, illness will prevent you from being as available to your friends than you had been. That’s certainly easy enough to grasp.
I know that before my husband and I began down the nasty road of cancer treatments (which is sort of like the chutes and ladders game) we talked about what we’d want the other to do “in case” the other were “unavailable” (to which we added or our personal stipulations). In our case, we were speaking of sexual availability. There was never a question that we would be there for each other in any respect we could.
It was clear that neither Steve nor myself wanted to keep the other from having a full and fulfilling life if one or the other of us should die. Steve stipulated three man-friends he told me were off limits. “Anybody but Jay” he’d say, knowing I’d poo-poo him or let him know I knew the three people he didn’t ever want me to date were the three likeliest suspects to be knocking on my door. I wouldn’t have been interested anyway.
For my part, no such stipulations were made. My friends were either happily married or not his type. This of course didn’t mean that should my friend’s spouse suddenly pass, that he wouldn’t have been free to date her.
I hope all of this makes sense to you because it’s important stuff.
So now we’ll take it a step further. As Steve became more and more ill, our conversations got deeper and deeper and sometimes overly complicated with caveats. He was now the partner who was ill. The one who was dying. The one whose future we couldn’t predict at all. We, as a couple, were not in denial. There was no timeline. No exact prognosis. No indication at all about how our lives would look in a few months or a few years. How would we deal with that reality down the line?
Well, down the line never came. Steve remained emotionally, verbally and sexually available throughout his illness. His doctors marveled at this—at least the sexual part. All of that made constantly caring for him easier. He never felt emasculated. He was still an active partner in our marriage. But if he hadn’t been, I feel that I would have needed someone in my life—not necessarily a lover—who was emotionally available, at the very least. Caregiving took so much out of me that I required positive input to keep going. I was fortunate to have had my husband give me what I needed. I was lucky. When Steve died, our marriage was as strong as it had ever been and I could go on with positive memories of love and mutual respect.
But Steve always knew who I was. He never lost mental clarity. When I was with him, he was with me. We still shared the same bed. His body had not been ravaged by his illness. We were lucky.
Had the roles been reversed, I knew Steve would have hired someone to care for me, though he would have always been present. He wasn’t the caregiving type. Deep concern, yes, but hands-on, no. But I always felt secure and knew he would have seen to it that I got the best care. That’s who he was and I never held it against him. At least he was aware of it.
When the doctors told me that his cancer had gone to his brain, I began to worry. Everything had been manageable up to this point. Now I had to question, would he continue to know me? Would he become violent? How would his behavior change? Would he be a danger to himself? Well, he became totally obsessive. He checked, double checked and triple checked his medication charts. He imagined intruders from Vietnam walking around the house with cats. He saw a spacecraft outside our bedroom window and needed to get out of the house—we were in danger.
He died three weeks into this dementia. Our conversations about what would happen “if” were no longer relevant, except I knew he wanted me to have a life after he was gone.
I had always saved my close friends to be my “normal” when Steve was ill. We would talk about everything except Steve. It never got to the point where I needed to find companionship outside my friends and family.
My gut feeling, though (and I can only speak for myself) is, had it ever reached the point where it was months turning into years of a Steve who’d become unavailable in every way, it would not have been out of the question for me to seek companionship. I know I would have continued to care for him as I had, but I would have needed some normalcy in my life. That kind of normalcy would have to have come from someone outside the situation.
When I went on JDate.com and Match.com and OurTime.com, there were many (and I do mean many) men who were very upfront about what they were looking for. Their wives were still alive but totally unavailable to them. They were seeking companionship. Some were open about the fact that they sought sexual partners who had no qualms about this kind of infidelity. Some were looking for women to accompany them to theatre, dinner or an occasional movie. There were no promises about what the future might hold, but they were looking to have a relationship with someone. They wanted to connect. If it became sexual down the line, that was not what they were looking for to start off, necessarily.
No one in my immediate family has ever had Alzheimer’s or dementia. No one ever needed to be placed in an assisted living or long-term care facility. I was a long-distance caregiver to my parents who were smart enough and had the foresight to purchase long- term care insurance, so when my father died my mother was able to remain at home with a professional caregiver for three years. So I have been fortunate to never have experienced someone close to me not knowing who I was, or being difficult all the time, or having to do everything for them.
I have a dear friend who was a trophy wife. When her husband passed away at 98, she was eighty—granted, no spring chicken, but her spirit is very youthful and she is a very social creature. She’d cared for him for many, many years and she and we had discussed the topic of extramarital relationships on several occasions. Maintaining a normal lifestyle for herself and her husband was her main concern and she ultimately decided that she didn’t care to change her situation as long as she was able to attend the opera, go to theatre and lunch with friends. She is financially secure and was able to afford respite care when she wanted to get out.
For my friend, that was enough. She still practiced extreme self-care and could live with whatever amount of freedom she bargained for. At 98, her husband was still sharp as a tack and was emotionally and cognitively available.
I have another friend, a man, married to a woman who is 17 years his senior. He recently had to put her in a residence because she is suffering from severe dementia, to the point being physically violent. He visits her daily. He loves her dearly. But he’s finally coming to terms that he’s living alone and wants a life outside his marriage. He’s testing the waters, so I can’t go into how it’s working for him, but he cared for his wife for years before he could no longer do it and is experiencing no guilt in looking for love elsewhere.
I’m in a relationship myself now, and my boyfriend and I have discussed what we would do “if” one of us no longer recognized the other. We’re not married, nor likely to be, but I’ve made it clear that I wouldn’t expect him to be celibate if I became one of those people fading in and out of who they are and who they remember. He says now, he’s in it for the long haul. That’s now. We’re both healthy and vital. We share a lot of interests. There are many things we do together. I believe he’ll be there if I need him, but I know neither of us are fortune tellers and can’t say what the future might really hold.
Obviously, I can only speak for myself. I would love to hear from anyone who cares to address this issue and how they’re dealing with it or with whatever questions or reservations they might have. In the end, I appreciate the fact that this is a very personal issue and the decision—one that can only be made by the caregiver.
Adrienne Gruberg is a former family caregiver and founder of The Caregiver Space. After six years of caring for her late husband and mother-in-law she conceived of an online support space all caregivers could come to. Adrienne holds a BFA from Boston University. She founded AYA Creative in 1982, an award winning graphic design, marketing and advertising company. Her design training has helped shape the website and her personal and professional experience continues to inform and influence the caregiver centric support experience she has created at The Caregiver Space.