The Caregiver's Handbook

Caring for a loved one—and yourself

Affairs are Self-Indulgent

True for spousal caregivers?

Today’s news is rife with high profile affairs. We almost expect them of our movie and rock stars. Our presidents as far back as Thomas Jefferson were engaging in them. The most disappointing to me was Eisenhower’s with his chauffeur/secretary. As a 3rd grader relishing the “I like Ike” enthusiasm, it was disconcerting to learn he wasn’t perfect. Should I still “like Ike”? I grew up and learned about our less-than-perfect senators, congressmen, governors, mayors - and most recently, the top level of our military and country’s security.

The military sets standards regarding adultery, and many – myself included - would contend that our public officials should also be held to a high standard of conduct. Are these people simply enjoying the fruits of their very public or lofty positions - the advantages of their power or notoriety? Certainly one of the perks of their status is the ready supply of groupies and hangers-on. As we look at these high-profile people, the term “self-indulgent” comes to mind.

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Low-profile affairs are common in the general population. Experts report that in the general population about 60% of men and 40-50% of women have affairs. More self-indulgence? Perhaps. Whether we condemn or condone this behavior, it’s interesting to explore what prompts the affairs and what the benefits and risks are that accompany them. Within these percentages lies a particularly noteworthy group I call “forgotten spousal caregivers”.

What is a “forgotten spousal caregiver”? The term “caregiver” brings to mind someone like Mary. She worked tirelessly for two years caring for her husband before he succumbed to cancer. Because of the relatively short, albeit painful time, people remained acutely aware of her caregiving struggles – deeply sympathetic and ready to provide assistance. However, as years and decades roll by for long-term caregivers, friends and relatives become tired of, lose interest in, take for granted, never know about or simply forget what these caregivers face - year after year after year. Having worked with and interviewed many caregivers, and having been an 11 ½-year caregiver myself, I know that long-term spousal caregivers are eventually “forgotten”. When that happens, they lose the support, emotional and otherwise, typically offered on the short term.

Meet Alicia, Marco, Elizabeth, Fred and Ben.

  • Alicia’s husband contracted a rare blood disease in his early 50s, leaving him completely dependent on her – for the last 17 years. He has trouble with all motor skills and has difficulty speaking. Sex is out of the question, as is meaningful conversation.
  • Marco’s wife developed MS in her thirties. She is very appreciative of Marco’s care, but after 20 years of caregiving, he feels more like a father than a husband – particularly when he cleans her after she uses the toilet.
  • Elizabeth’s husband has Alzheimer’s and has gradually declined for 10 years. He no longer recognizes her, and has new friends, including a girlfriend, at his care facility.
  • Fred’s wife fell and hit her head when she was 53. He has been caring for her for 18 years. While she still looks normal, she isn’t there anymore, and finds it painful, emotionally and physically, to be touched.
  • Ben’s wife was a tri-athlete. At the age of 32, she was struck by a hit-and-run driver while riding her bike. Severely physically disabled, Ben has cared for her for over 30 years. Unable to exercise and frustrated by her condition, she has doubled in size and lashes out angrily at Ben.

Tens of millions of caregivers live similar scenarios, experiencing what I call a “roller coaster ride from hell”. Generally a painful and thankless job, caregiving certainly does not attract groupies or power seekers. Yet, affairs are not atypical for this group.

Three types of affairs, common among this group, trend differently for men and women.

  • Hooking up, a non-emotional connection for the purpose of having sex, is chosen by more men than women. Men seem to have easier access to this.
  • Traditional affairs are preferred by more women than men. These are longer lasting, with an emotional as well as physical component.
  • Emotional affairs are the most common for both sexes. The caregiver becomes emotionally connected with a partner but never crosses that physical line. Many online affairs fall into this category.

Which caregivers have affairs and with whom? More men divorce their sick wives than the reverse, so fewer of them are in for the long haul; and some caregivers were having affairs before their spouse became ill, so I exclude them from this group. Of those who stay married and have affairs, most say they never considered an affair before their infirm spouse changed drastically – either becoming spiteful or incapacitated. In fact, many of these caregivers surprise themselves by having affairs. Women commonly remark that they wish they had the energy to have one!

Some caregivers prefer affairs with other caregivers. Being with someone who understands, without having to say a word, is a godsend. They can freely discuss concerns and complaints without feeling guilty, and their lover understands when medical emergencies preclude together time. Other caregivers prefer to be with somebody totally unrelated to caregiving. When they take breaks from their duties, the last thing they want to think or talk about is caregiving.

When do affairs start? It seems that if a marriage was solid before the illness, and the ill person treats their spouse with respect, an affair may never happen. Or, it may be delayed many years depending on how incapacitated the spouse is and whether or not their condition is terminal. Not magic numbers, three to five years seems to be the start of permanently-changed marital dynamics. Most likely, there is more hooking-up at these early stages. But when spouses count their caregiving time in decades, their lives have changed so completely that they create a new survival identity for themselves. An affair may be central to that survival.

What do affairs provide?

  • Physical needs are met without emotional entanglement in hook-ups. Forgotten spousal caregivers are deeply enmeshed in caregiving and have more than enough complications in their lives. Most have no emotional energy to spare in order to get their physical needs met.
  • Nurturing is provided in the traditional affair to those caregivers longing for the emotional connection they lost with their spouse. Rather than sex per se, often it is the hand holding, hugging, cuddling, gentle conversation and laughter, and a sense of feeling safe that most seem drawn to.
  • Feeling desired and appreciated comes from the affairs. Both men and women enjoy having attention focused on them for a change – and being desired for other than their nurse-maid skills.
  • Affairs provide a lifeline for many. It is the one seemingly sane and beautiful thing they have in their lives – a time when they can feel like a man or a woman again –that there is something other than sickness in their world.
  • A sense of normalcy is provided. This can come from participating in fun activities they can no longer do with their spouse, like dancing or other “couple” pursuits,
  • Affairs revitalize caregivers. Rather than resenting their spouse for “ruining their life”, the time with their lover renews them so they can go home and be a better caregiver. Having someone to talk to, to share all their worries and concerns, drops stress levels.

What do affairs cost? (Find out on page 2.)

  • Guilt, whether religious or otherwise, is a constant with all affairs. It’s greatly intensified if caregivers are with their lover when their spouse is rushed to the hospital - or dies.
  • Dignity, self-respect and pride are lost. Surprisingly, some feel they also gain these from the affair, so juggle this dichotomy.
  • Free time is lost attending to a lover, and unexpected emotional complications may arise – particularly if the lover wants more than the caregiver can offer.
  • Trust is lost when the affair is discovered. Like all affairs, along with retribution from family members, legal action may be taken and assets lost – particularly devastating when decades of caregiving have already depleted assets.
  • Affairs usually end, so hurt is almost inevitable. Caregivers may end an affair, hurting their lover, because their spouse is still their number one commitment, and number one love. If a caregiver is the rejected lover, it’s devastating because they’ve lost their lifeline. They may fall into a double depression facing both the death of the affair and now having to live with their spouse’s illness 24/7. There may be nobody to talk to about this since their lover was their only confidant.

Whether to condemn or condone affairs, or to feel they are self-indulgent or critical to survival, are deeply personal considerations. Forgotten spousal caregivers may explore alternative forms of self care in The Caregiving Wife’s Handbook. Check back monthly for further articles containing valuable tips and tools on caregiving.

Diana B. Denholm, Ph.D., L.M.H.C., is a medical psychotherapist and the author of The Caregiving Wife's Handbook.

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