WHAT AM I? WE NEED A WORD FOR IT!

Progressive dementing brain disorders like Alzheimer’s disease are marked by increasing impairment of the ability to think, perform in the world, care for oneself, and eventually to walk, talk, and eat.  The journey from onset to death often takes a decade.

Every day brings the death of another tiny sliver of the victim’s personality.  Over years, the patient’s unique and recognizable personality inexorably erodes from view.  The victim dies as a person, a result often called “a death without a funeral.”  Victims increasingly lose the ability to participate meaningfully as a marital partner.  Joint marital activities are no longer reciprocal; rather, they are one-way.  The healthy spouse’ role gradually shifts from friend, lover, and partner, to caregiver, caregiver, and caregiver.  

It is well documented that families of dementia sufferers perform heroically, lovingly providing enormous amounts of care at great emotional, financial, and physical sacrifice.  Recent research has documented that the vast majority of care for dementia sufferers is provided by their families and in their homes, not in facilities.  However, whether the dementia sufferer is living at home or in a facility, many spouses report increasing feelings of loneliness.

What exactly is the emotional status of a spouse of a moderately to severely demented adult?  What is their social status?  In my many years of practicing adult and geriatric psychology, I have counseled hundreds of these spouses.  They are overwhelmingly fine people, who have been loving spouses in happy, healthy marriages.  Coping now with a significantly demented spouse, they remain committed to ensuring their spouse receives proper care.  But what should their heart be feeling?  Emotionally, their “marriage” is now a very different experience than during the previous decades.  Cynthia Ramnarace wrote for AARP in 2010 (see), “When the marriage dies long before your spouse does, the result is an avalanche of emotion that can leave a caregiver depressed, depleted and isolated.” 

In my experience, a common emotion caregiving spouses face, second only to grief over the tragic losses involved, is confusion about their role and status.  Recently, the wife of a demented husband was in my office for psychotherapy.  She had just placed her husband in a memory care facility.   She had the insight that one reason this stage is hard for the healthy spouse is the lack of a word to describe their status.  They feel not exactly married and not exactly widowed.  We agreed, “We need a word for it!”

After some cogitating, I want to suggest some possible acronyms.  (I know these don’t exactly roll off the tongue, but neither did NIMBY or DYI at first.)  These spouses remain, of course, husbands and wives.  But what if they could also explain that they are also MISLIFs (“My Impaired Spouse Lives In a Facility”)? Or maybe MISHADs (My Impaired Spouse Has Advanced Dementia”)?   Or maybe, SADMADs (“Spouse has Alzheimer’s Disease; Married And Devoted”)?

These acronyms communicate that the healthy spouse is legally fully married and will lovingly fulfill all associated responsibilities, but is also living without the many pleasures and gratifications that marriage is designed to provide both partners.  One hand can carry, but it cannot clap.  Likewise, a marriage is fundamentally changed if one partner is severely mentally incapacitated.

Let me know what you think about this difficult topic.