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.