Looking For – and Finding Friends with Benefits

A lot of spouses and partners who are caregivers for People with Dementia (PWD) or who are chronically y ill bemoan the loss of the physical comforts that were part of the partnership. This post is an edited conversation between me and one of my acquaintances who is also a caregiver.
Her spouse is ill and sliding into dementia while still a relatively young man and she seems to be one of that proportion of healthy spouses who have taken steps to find a physical and emotional replacement for what she is missing because of this illness.

In trying to have some understanding about friend with benefits (FWB), I did some reading and, in doing so, came across this quote from Alexandra Kollontai an early Russian feminist who believed that men would never voluntarily see women as equals in either a capitalist society or marriage.
She didn’t believe in marriage but would not accept celibacy as the only alternative.  
Kollontai wrote of a ‘free’ woman: “…… when the wave of passion sweeps over her, she does not renounce the brilliant smile of life, she does not hypocritically wrap herself up in a faded cloak of female virtue. No, she holds out her hand to her chosen one and goes away for several weeks to drink from the cup of love’s joy, however deep it is, and to satisfy herself. When the cup is empty, she throws it away without regret and bitterness.
And goes back to work.”’

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Q.) Seemingly, only a small proportion of healthy spouses in a healthy spouse/ill spouse relationship people act to try and compensate for the loss of physical consortium and I’m interested in how you came to find your way to this new situation and how it affected you.
Was there something about your marriage that made your steps more likely?

I must acknowledge right now, that the marriage already was severely lacking. I attributed it first to his high stress job, then his alcoholism, maybe a mid-life crisis…. I was considering leaving the marriage at that point. But, when he got a new, more important position, I thought “I love that new city, we were happy there before, maybe it’s a NEW start”.
I was wrong.

Q) A new job, intricate planning and a move add a great deal of stress.

We had a bit of warning for the transfer, so we sold our home and my son and I moved into a temporary apartment while he took summer classes, and then his first semester of his senior year so he could graduate early with the intent of moving from our temporary apartment to the home purchased in our new city.

Q) How does the diagnosis fit in this schedule?

Before leaving our original city, my spouse had an ‘abnormal’ MRI and was told to see a neurologist as soon as he got to his new home. First week there he gets a dui ( at court appearance license gets taken away.) With all this confusion and stress five months pass until he gets in-depth neuropsych testing.
I went to see the neurologist with him and when we heard the diagnosis of “Mild Cognitive Impairment”, we were crushed. We were simply told “get your affairs in order”. We sat in the parking lot and cried. In a moment all our plans changed, no high level job, no new house, no new city; within a few hours I was back on a plane home for my son. However, it turned out that spouse was taking meds erratically and he couldn’t live alone now, so I moved him BACK to OUR temporary apartment so I could give him his meds.
I was told to go where I HAD a support system. I figured that meant to go back to my hometown where my retired parents still live. So we packed up and went.

Q) How did you get to that state where a Friend with Benefits (FWB) seemed the best step?

Having been transferred around a lot in my spouse’s career, we never seemed to stay anywhere longer then 6 years. Hard to develop and maintain lifelong good friends this way. Hubby wasn’t the best husband, texting with strippers, addicted to porn, drank way too much, golfed in all his spare time. After nine years of marriage, I’d had an affair. I had extreme guilt but after so many years of husband doing any thing he wanted, with an attractive attentive wife at home, so much fighting and verbal abuse, an affair just seemed inevitable.

Q) So you were back in your home town, did that help?

Well, I’m back in my hometown, but still NO close friends or a life. Every day a great challenge, the bizarre behaviors (that’s another complete BOOK), the arguing and our son starting college, leaving me alone with the problems.

Can you pick out one specific idea or incident that precipitated your action?

After reading that nearly 50% of caregivers actually die before the person that they are caregiving, I was amazed and shocked.   (https://www.brmmlaw.com/70-of-all-caregivers-over-the-age-of-70-die-first-is-caregiver-syndrome-a-real-medical-diagnosis/…., https://www.agingcare.com/discussions/Thirty-Percent-of-Caregivers-Die-Before-The-People-They-Care-For-Do-97626.htm That won’t be me, I thought, so I started looking up friends. There’s always something I could go to! Hiking, knitting, bar hopping,… You name it!  I started taking myself out for lunch. Getting my nails done. Doing things that made ME feel good and made me feel happy to be a woman.
I met many people, often men, when I went out on my own.
I suppose that’s not as threatening for men if I don’t have a band of other women with me as well.
I tell people my situation (spouse with early onset Alzheimer’s; a terminal brain disease, and yet still what’s considered high functioning)….. They usually agree with my choices. I have always been very concerned with what other people think but now I’m slowly gravitating toward the opposite pole. Why do I care what strangers think? I DO care  what my immediate family thinks of me.

I am discreet about my activities. I have FWB that actually try to HELP me; not hurt me, many themselves are married.
I suppose they are the ones who understand why I didn’t leave my spouse at the worst time in his life. I’m doing the right thing for him.
I’m also doing the right thing for myself.
I cannot disappear to be a home bound old woman…. No determination of how many years we all will be dealing with Early Onset Alzheimers.
I DO know it will ONLY get worst. Doctors tell me, support groups tell me, others tell me, books tell me.
I do absolutely everything for my spouse, my pets, my home, and my family.
Instead of a husband and mate, I have a roommate now whom I’m legally married to.
I NO longer have a partner (mine now behaves like a hormonal 14 year old), a confidant (WHO can I just sit and TALK to?),  spouse (financial decisions, retirement funds decisions, household decisions, parenting decisions, all life decisions basically),  father for our son ( that relationship is dwindling. He can’t find a way to respect his father anymore after the alcoholism). lover ( Completely inappropriate sexual comments to me, about me, to my parents, to our kids, to strangers anywhere).
If he isn’t considered my equal, HOW can I have 
sexual relations with him? That’s just…. Ick in my mind.

When I need my time out for an evening or away for a weekend, “I visit friends” or “I’m meeting a friend for drinks or dinner”.
My FWB needs to provide me with companionship, love, friendship, fun, meaningful adult conversations, respect, the gift of time and, most of all, no judgment.
I provide the same for him, willingly.
We ALL need that in LIFE, any LIFE.

Q)  Thanks so much for being so open and honest about this issue.

24 thoughts on “Looking For – and Finding Friends with Benefits”

  1. It is interesting that this article has garnered a good deal of comment in the various FB groups, where identities are protected, yet there are no comments here in public.

  2. I have 2 questions regarding this article. (which I found to be very interesting)
    1. How does one live with the guilt?
    2. And more importantly, how does one find the time???

          1. The author of this piece sent me an email with the following:

            Do you still feel guilty?

            I DO feel guilt but I also feel a need and longing for a normal’ish life which overrides the guilt.
            I had planned to divorce before the diagnosis due to our failing marriage. But knowing there’s no one to handle all his life issues, I just couldn’t file for divorce.
            I couldn’t live with myself if I’d left him at his greatest time of need.
            He is still fairly high functioning but its as if we are roommates and not marriage partners.

            Where do I find the time?
            I do not work outside the home yet although I’m open to in the future when I need medical insurance for myself and a college student at home.
            Since he doesn’t need 24/7 supervision, I have time still.

  3. I had a great marriage and really knew my husband. He would support me, and I would have had him continue his whole life if I was the ill one. And he knew that. No guilt. Not a secret, just private. I believe in the whole person being nourished, exploded to all tenderness and all joy. To live. To be well. For myself, for my children, and for caring for my husband.

  4. I was a working full time and a caregiver for my wife for 25+ years. Her mind was as sharp as tack until the day she died. 30+ years no sex and little physical contact from my spouse as she was a quadriplegic and lacked any sensation of touch to any part of her body below the neck. I had no time for finding a FWB and as I said she was mentally sharp. Finally in the last two years (when she was in hospice care) we went to a couples counselor and she accepted at Travelly companion for me but I think, thought she understood my needs it hurt her and was afraid I would leave her.

    I choose the wrong FWB as at first she understood but that changed and it was taking more energy to deal with her emotions than I had.

  5. Excellent post, thank you both.
    I also live with a housemate, someone I love dearly. We were lovers, too, when she came to live with me 10 years ago, but she lost interest within a year (I now understand the effect dementia can have on libido).
    If I had known then that she had young onset dementia (YOD) I would not have put my hand up for yet another round of looking after someone else. But her diagnosis didn’t happen for another 5 years.
    I went to counselling over my inability to accept that she no longer wanted me. I felt used, angry, cheated. She also went to a psychologist who diagnosed her with depression & anxiety, even though she hadn’t been able to complete a detailed cognitive battery (the Wechsler). Had I known that at the time, I would’ve sought further information (I had studied post-grad psychology). V should’ve been diagnosed with MCI then.
    It’s been 5 years now since her FTD/PPA-L diagnosis. We sleep apart generally, as she snores (though we share a bed when traveling). We are affectionate, understand the other emotionally. V has great insight.
    However, I feel imprisoned in my own home. V needs company most of the time. I now have 4 half days “off” a week, as V has a team of women care workers around her, taking her out, having fun or just watching a movie at home in bad weather. V has been able to form new relationships, has new friends as well as old.
    Me? I can no longer work. I’m financially insecure. I’m exhausted. I feel and look like a frump. I started drinking too much, alone (that’s since stopped). I’m as lonely as hell. My old friends miss me and I them. I miss what was my life.
    But I am committed to remaining V’s advocate, care partner, POA & guardian if/as needed, because I love, respect and admire her.
    There will come a time when she sleeps more, when I will be able to go out for an evening while knowing she is safely sleeping (video cam). I’m working on how to organize regular long weekends for me to get away to see my Sydney friends, as I used to, even before I met V.
    When that happens, I will certainly go with my instincts if the opportunity arises….but I will not tear my heart to shreds in the meantime.

  6. I feel everything that’s said here. My hubby was diagnosed with young onset Alzheimer’s 7 plus years ago at 49 and I was in my late 30’s. I’ve been faithful ever since. I normal ask myself many questions about this FWB issue. How it works etc

    1. I can’t imagine that there is any specific or best path.
      The two people I know who have FWB took radically different approaches, one deliberate, one almost accidental.
      You will ventually have to balance a bunch of issues and decide; it this really being ‘unfathful’? Are you willing to have some physical love or joy back in your life at the possible cost of how you might feel.
      There are no rules that you can refer to that will justify how you act.
      You must do what you think is best for you.
      On a personal note, I don’t see how I have the emotional energy or even the time for any relationship outside of the one I have with my wife.

      1. I agree. I certainly don’t have time nor energy ATM. But I realize I can’t keep on adjusting to what’s left of living once V’s needs are met.

  7. Hubby is 42 with early onset–PCA variant. Lots of issues with empathy, communication etc. we have 7 kids. Both of us have been married before and always swore we’d be honest about what we needed from the marriage rather than stray and wreck the family we worked so hard to build. Alzheimer’s doesn’t exactly make that possible–he can’t give me what he always has because it’s just not there anymore. I’m so lonely for meaningful communication, playful affection, or just a dinner out that isn’t fraught with potential pitfalls. Sigh. Thanks for opening this discussion. Is there a Tinder for caregivers? ISO partner in crime with an hour and 45 minutes free on Wednesdays (except during basketball season–then it is 37 minutes on Thursdays and an hour on Fridays)…must be able to make me laugh, take yourself to the bathroom and decide what to eat in under 20 minutes.

  8. My husband retired at age 60. Young onset Alzheimer’s. I was 53. He will be 72 this month. He has been in a VA nursing home over 2 1/2 Year’s. He can not walk, talk, or feed himself. Once in a while he may smile. I am lonely. I am only 65 and want companionship. I’m okay with having a meaningful relationship. My husband and I had talked about this before and the kids are fine with it too. However I have found some men have a problem because I am married. My opinion is do what you feel comfortable with.

  9. The author of this piece sent me an email with the following:

    Do you still feel guilty?

    I DO feel guilt but I also feel a need and longing for a normal’ish life which overrides the guilt.
    I had planned to divorce before the diagnosis due to our failing marriage. But knowing there’s no one to handle all his life issues, I just couldn’t file for divorce.
    I couldn’t live with myself if I’d left him at his greatest time of need.
    He is still fairly high functioning but its as if we are roommates and not marriage partners.

    Where do I find the time?
    I do not work outside the home yet although I’m open to in the future when I need medical insurance for myself and a college student at home.
    Since he doesn’t need 24/7 supervision, I have time still.

  10. People are as varied as all the colors in the rainbow spectrum..their outlook on life, their needs, how they cope with crisis..

    My personal opinion is that one is not required to apply traditional marriage vows to a marriage that is no longer traditional. At some point in the journey the husband-wife roles have changed to something closer to parent-child, and it’s grossly unfair to hold one spouse up to the “marriage” when the other spouse cannot hold up his or her end for whatever reason. Where in the marriage vows did one party agree to be the only one in the union to relentlessly give day in and day out taking care of the needs of the other party? Without receiving anything of a marriage in return?

    In sickness and in health? I am still by his side and will see him through to the end. I still hold his hand and tell him that all is going to be all right. There are people who bolt at diagnosis of just cancer in their spouse.

    Forsaking all others? I am still by his side and will see him through to the end.

    If the roles were reversed I’d grant him the right to go get what I can no longer provide. I’d like to believe I married a like-minded person.

    Caretakers are always told to make sure they take care of themselves – eat right, exercise, find time to do something you enjoy. I believe satiating sexual desire or intimacy, which is innate in all of us, to be part of taking care of yourself. Perhaps those who can deny themselves intrinsic desire feel it’s a strength or emotional fortitude. I believe that you need to eat when you’ve grown hungry.

    Callie

  11. I am very lucky. My husband has vascular dementia. This caused serious relationship issues for a few years before the diagnosis. He was talking about divorcing me, and I was trying to hang on, not really understanding what was going wrong.

    After a particularly horrid event, I broke down and held the hand of a friend.

    That was eight years ago. Now we all live together. One big, very odd (but happy!) family.

    My husband is convinced that we broke up. That was certainly his intention. So he’s not bent out of shape about the existence of my partner. My partner and my husband share similar taste in movies and politics, so they get along very well.

    I kind of hit the jackpot (not with the dementia, but with the partnership) and I feel ZERO guilt.

  12. Callie, I’m with you and Nony, you’ve hit the jackpot!😉
    V & I are not married, nor officially partnered, and I won’t abandon her either. However, it’s been many years since we were lovers …we’ve become affectionate housemates.
    I know I have really suffered from “enforced celibacy” for the past 9 years and I hope that one day I might find someone else to love me. But I can’t see that happening in our house, as long as V is here.
    I’ll have to go back to my friends, my life in a city 2 hours from here (which I need to do anyway for myself), and for that I need to find a way to take regular breaks from caregiving (and OMG how I need that!)

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