Caregiving, marriage, and dating

October 23, 2017

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new york in autumn

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.

Written by Adrienne Gruberg
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.

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26 Comments

  1. I really appreciate this article. I am in my 40s. For the better part of 20 years, my wife has battled lupus. Recently, she developed stage 3 congestive heart failure. The fear of causing a heart attack has pretty much ended intimacy. I now also do her bi-weekly immunoglobulin infusions for Primary Immunodeficiency. I will not leave my wife…and I miss sex. I feel so much better knowing I am not unique. I always worried when all the articles were about wives caring for sick husbands.

    Reply
    • I really love this article because my wife has been on dating sites. When I had found out she was killed by the man that she was dating.

      Reply
  2. My heart goes out to those of you who have expressed yourselves so honestly. I am 75, married 55 years and my wife has dementia. She could live 20 years but without the ability to participate in a full life, mentally, physically or sexually with me. These are things I am starved for. We love one another like most married folks, but in a very real sense we were always ‘in love’. The loss of this romantic love as I watch her disappearing is a blow. Care giving without my needs as a human being being met are not healthy. It is an interesting challenge. Fact: I have had intercourse with two different women, one I dated and one I married. I loved them both dearly. I cannot imaging having sex without essentially loving that person. I’m not a one night stand guy. I will always love my wife but I could find myself beyond companionship with another. Its a challenge.

    Reply
  3. Caring for my wife for many years. She has severe depression and anxiety and struggles with the most basic chores of self care. I know her situation is not her fault and she is trying her best. I am committed to helping her as best I can but I am increasingly depressed myself and have decided that I must find a happy friendship/relationship outside of my marriage. With covid restrictions this seems hopeless. I have made a few attempts to connect with a few women but have been reluctant due to the fact I have never thought seriously of an affair before. Trying to be patient and understanding with my wife and myself. From reading the other comments, I think this situation is more common than many realize. I wish society was not so judgemental and myopic about these situations.

    Reply
    • yes, I know what you mean. Your jugged on line if you talk about certain topics. I see there has been different ages here and not many in this topic. I care for my husband and what upsets me the most is that he dosen’t seem to care (never brings the topic up) about never holding each other, never kissing, never going places together, never having long serious conversations, never getting a hug from the opposite sex, never laughing together, never holding hands, never seeing the ocean together, never sitting close to each other on the couch together, never talking about our future together. It’s like he dosen’t care about MY life. Just take care of HIM. Do I make sense? Like alcoholics have meetings available to go to, I wish caregivers had a place on-line (or in person might be nice) to go to to talk about anything even if it is intimate feelings and not be thought of as someone who’s just looking for something else. As a cheater because your married. I could go on and on, I better get back to work, lol.

      Reply
      • Have not checked this site for a while but I understand Felicity. I think that caregivers in this type of situation should feel free to seek other companions. No guilt or judgement. Seek out what you need.

  4. We all need a support group! When you are the spouse ro a handicapped elderly partner the younger mate dies… day by day.

    Reply
    • I wish this caregiverspace.org site for caregivers would get more active. Old dates. I need to talk to other caregivers like me that don’t talk crap to you if you bring up loneliness, affection, or the S word. !

      Reply
  5. my husband has been ill for years…I love him dearly but I am so very lonely and am thinking about trying to find someone who might be in my same situation…sometimes I just need to be with someone who understands what I am going through….

    Reply
    • I’m the same.I’m 51 and my 47 Y.O. wife suffered a traumatic brain injury in 2007. She is 100% disabled. Cannot walk or speak. I love her but a need a woman in my life. Someone for friendship, companionship and enjoy outings and each other. I am a lonely person. It gets old.

      Reply
  6. I’ve been a caregiver to my husband for over 16 years now, the last 3 he’s been in a nursing home but I’m now looking after my 85-year-old mother.

    I had actually asked my husband for a divorce just one month before he had a heart attack, followed closely by 2 strokes, 2 weeks apart. At that point I couldn’t leave him and stayed thinking he would recover. The first stroke affected him physically, but the second stroke affected him mentally as it was in the frontal lobe. He was like a large child mentally, acting out, taking off for walks in the community where he would inevitably fall and 911 would have to be called. I had someone with him during the day while I worked, but eventually trying to maintain a high-end job and the constant issues I dealt with while working and then his career for the remainder of the day and weekends finally took a toll both physically and mentally. I began having panic attacks, severe depression and anxiety. I knew I had to place him in a NH. I no sooner got him settled and then had to begin caregiving first my mother. I started dating after the first seven years of caregiving to my husband. It’s not easy to be a caregiver, and married, to find a person who is willing to go into a relationship knowing that a good part of your time belongs to someone else and that you won’t always be available for spur of the moment activities. I didn’t/don’t want a hookup. Since I love, but am not in love with my husband, I don’t feel guilty for looking for companionship and more. Of course if I could find someone who is also a caregiver, then there would be an immediate understanding of the situation. I have found a few men on regular dating sites that are in similar situations, but most were just looking for a sexual partner. I want someone I connect with on all levels. And I have dated a few men and have had a few relationships that lasted for long periods of time. But they were also those that were deceitful and they were actually married or in relationships already. If there was a site for caregiver dating, I think you could be open and find someone with similar interests in relationship types.

    Reply
    • Just when I’m feeling down in the dumps I find someone who’s going though the same thing, only worse.
      I left the career of my dreams in the Technology business, was a senior engineer sought after for decades of problem solving skills and experiences – for care giving my wife.
      For 2 years now I’m home trying to make sense why my wife after a couple strokes prefers sitting in front of a TV day-in and day-out watching me try to manage ALL of her needs, her PT, our acreage and house and everything else life throws at me.
      Not sure if she’s capable of such, but feel after our lifetime of work, saving and making retirement plans, now she prefers sitting and watching me try to manage her life for her. The woman I married 37 years ago is gone, and this house is empty, even though she’s still sitting watching TV.

      I miss a intelligent conversation, when I try to contact some old friend I have left from my career I bore them to death.

      Reply
  7. I no longer feel like a wife who is loved for who I am, rather needed for my companionship and caregiving. I have checked out a few dating sites out of curiosity if I could find a male friend, but it seems the only options available are if you are divorced, or single. I still have a good 30 years to live, yet feel like I too am slipping away.

    Reply
    • My wife has m.dystrophy and she had mastectomy due to breast cancer. We haven’t had sex in years. If I try anything, she says she is in pain. Oh how I yearn for the touch of physical love again. I am faithful to her, but am getting tired of everything. I am nurse, cook,chauffeur, secretary, gopher, Butler, housewife, schedule planner, emotional support and a thousand other things just to get through a day. I am afraid that I am forgetting how to be a man. In fact I think I am losing my mind, at times. I am trapped, and I don’t know what to do or who to turn to.

      Reply
      • I am in the same situation. He has Parkinson’s and I manage everything.

      • i understand steve

  8. You MUST take care of yourself. Caregivers have needs that must be addressed.

    Reply
  9. We were consensually non-monogamous before he fell ill and only sometimes seemed like himself. The other partners I had in the decade of his illness were a blessed relief for the emotional needs I had, and he supported my spending time with them. Eventually as he began to heal, his new partners were an incredible benefit to us both. He needed to give instead of just always receive. They were also caregiver relief for me, and became part of his care team and close friends to me. I can’t say whether it would have worked like that if we hadn’t already been non-monogamous, but it was a blessing to have in the long run. It made it easier for us both to get through it.

    Reply
  10. 26 years caring for my husband. Married 36 nothing like the first 10 years but for better and For Worse:-(

    Reply
    • I see glimpses of the man I married… but as he grows older… it becomes so painful waiting to see the real him 🙁 Sometimes I worry if I will never see him again 🙁

      Reply
  11. I took care of my husband for over a year and was very hard but I did it because I loved him and now he is passed away and I miss him everyday

    Reply
  12. In a marriage,when one becomes “only” a caretaker and all the comforts that come with marriage are taken away, the caregiver’s health begins to diminish.

    Reply
    • True. When the caretaker of everyone and everything is not caretaken by anyone it does.

      Reply
  13. None of the above survived my caregiving attentions. Whether it was toward children an ill family member, pet or dying parent. It was not my lack of time for any of the partners I had. It was more about control and jealousy of anyone or thing I loved. I made not the best choices in partners, which took my Caretaking anyone but them to see I did.

    Reply

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