Marriages inevitably take the brunt of many of the stresses that go along with Caregiving. The divorce rate among couples, wherein one of the spouses is a parental Caregiver, is alarmingly high. I’ve met many significant others who have taken on the role of Caregiver for their partner’s parent(s).
Regardless of whose parent is being cared for, the unimaginable strain that the commitment to dementia Caregiving puts on a love relationship is often devastating. Caregivers of parents are not the only ones affected by marital breakdown though. And when they are, there is often some opportunity for reconciliation. The same is not true for Caregivers of spouses.
Divorce is rarely a consideration for a husband, wife or lover Caring for his or her spouse with dementia. Many spousal Caregivers have been with their lovers for 50 or more years. But, dementia slowly destroys the intimacy, the reciprocity and, literally, the foundation on which the longtime companionship was built.
I have not experienced these losses. But, the many Caregiving friends I’ve met who have and are fielding these losses have taught me that no one, except those in their shoes, can possibly imagine the pain. I have great empathy for these friends. Some of them died before their loved ones, because of the relentless Care they gave. Many more suffer the same fate.
I’ve often pondered the differences between spousal Caregiving and parental Caregiving. Accepting that all dementia Caregivers experience incredulous losses, I see differences in the roles. With our parents, albeit it hard for some to admit, it is perfectly natural to have a Love/Hate relationship. It is something that hopefully, as adults, we find a way to balance. But, it’s there, none‑the‑less.
There were times, earlier in my teenage years, when I hated my grandmother as much as I ever loved her. Hate is a powerful emotion. It is so powerful that I believe we really can’t hate anyone unless, at some point, we didn’t love him or her very much. People throw around the `hate’ word a lot. I find it a waste of emotion for most, because they usually target people they hardly know.
I believe, if we are honest with ourselves, most of us could admit there have been times in our lives when we felt these opposing emotions for our parents. And that natural parent/child relationship endures throughout life. This presents some legitimate challenges for parental Caregivers.
Spousal Caregivers face very different challenges in this sense. It can be said that Love/Hate relations enter into some marriages, because we’re all human and we do make mistakes. However, in the 20- to 60 years‑long marriages of most spousal Caregivers, a legitimate dilemma rarely exists.
These are lovers who have spent their lives together, supporting each other, helping each other cope with the Love/Hate relationships with his or her parents and with their own children and, are looking forward to enjoying their `golden years’ in blissful retirement — only to be dealt the reality that their loved one will eventually no longer be their lover, their confidant, or even their partner.
Spouses with dementia often forget they were ever married. They respond to their wives as strangers. They may consider their wives housemaids, even prostitutes. They speak of their first husbands as the love of their lives, because that’s all they remember.
Enduring these realities and worse, the vast majority of spousal Caregivers remain loyal and loving partners. This is extraordinary to me.
Much like the dementia patient is imprisoned in his own mind, the spousal Caregiver is locked‑in to an inevitably nonexistent marriage. Many might understandably take issue with that analogy. But, it’s important to realize that no more than the patient asked to have dementia, did the Caregiver ask to lose his or her spouse to the disease.
That’s exactly what is happening and, despite the fact that most spousal Caregivers lovingly choose to throw away the key, they are prisoners. As inmates, they give up intimacy, sexual relations and companionship and there are rarely any meaningful conjugal visits.
This is an area in which spousal and parental Caregivers find common ground. Divorces among parental Caregivers and their spouses are often due directly to the strains of dementia Caregiving, while the dementia itself causes a `divorce’ between the afflicted spouse and his or her spousal Caregiver. Although the spousal Caregiver does not file the ‘divorce,’ the losses are just as great.
During my Caregiving experience, I read an interview with Richard Thomas, in TV Guide®© (Please don’t sue me TV Guide®©, I lost my reference for this article in a flood in 1994. I quote this with all due respect to TV Guide®© and in good faith, with good intentions). Most of us remember Thomas as “John Boy Walton.”
His description of how he felt when his marriage of 17 years ended reminded me very much of the loss of my 8-year partnership with Marjorie, as well as, the loss of GaSara. I’ve shared it with spousal Caregiver friends of mine and they agree, it reminds them of their feelings about their ongoing marital losses, as well. His statements are worthy of sharing here.
As his divorce was finalized, Thomas was left feeling, as he described it, “like a pea rolling around in a drum. I was unhappy. I was adrift. All my nerve endings were raw. I was separated from a very old relationship. I am a deeply connected family person, and it was just disorienting. Not knowing what was out there. Not knowing what was coming. I wasn’t looking for [someone new]. I was trying to figure out how to be alone.”
Trying to figure out how to be alone … That has been one of my strongest challenges. GaSara’s death was not the problem for me. Coping with my life, after her death, has been the problem. GaSara’s passing was not the only loss that left me alone that year. I also lost my mate of 8 years.
An insidious interdependence breeds between dementia Caregiver and patient, not unlike the codependence that often develops between lovers or husband and wife.
For five years I gave 97% of my energies to GaSara, leaving very little for myself, much less for my partner. Marjorie, in turn, gave 97% of her energies to me in support of GaSara, keeping little for her “self.” When the journey with GaSara ended, Marjorie and I were left to be together again. As much as we had both prayed for that day to come, we faced the terrible reality that our relationship was gone.
Neither of us knew what we needed and wanted for ourselves. I had no idea who I was. And although she was reticent to admit it at the time, Marjorie also struggled with her identity. We no longer knew how to have the relationship we had always cherished. Without knowing ourselves, we could not know each other. Despite the incredible love we shared, our ‘marriage’ was damaged. Marjorie moved back to Atlanta the month after GaSara died. And although we still love each other to this day, that damage has yet to be repaired.
Our partnership is only one of hundreds of thousands that could not survive the stresses brought on by dementia Caregiving. Perhaps one of the most difficult life lessons we learn is that, sometimes, love is not enough. Too often, loving couples are torn apart by extraneous circumstances beyond their control.
Marital breakdown in Caregiving: It’s not about losing love; it’s about losing a lover.