My first experience with caregiving came at a relatively young age, 25. The man I loved was diagnosed with ALS, also known as Lou Gehrig’s disease. As his disease progressed, he required round-the-clock assistance with virtually everything, as creeping nerve deterioration and paralysis eventually made him unable to breathe, speak, or eat unassisted. Someone (often me) had to stay up all night with him and move him at periodic intervals, as his inability to move even slightly risked cutting off his circulation completely. Finally, he died of pneumonia.
If you believe in such things, you might say I was fated for such an experience. I am an astrologer, and in my own chart I see such symbols as Pluto in the 5th house (sometimes the symbol of a death of a lover) Venus in Pisces the 12th house (sometimes a symbol of compassionate sacrifice and caregiving for a lover), and Neptune in Scorpio on the 7th/8th house cusp (sometimes a symbol of wasting disease in an intimate partner). My own personal belief is that such things are not necessarily fated, but that the components of our souls (which are often represented in our birth charts) indicate how we will respond to life’s opportunities and challenges.
Many people vigorously advised me not to waste my young life on someone disabled, someone who would inevitably die of the disease with which he was diagnosed. But I never hesitated to do so, for I was confident in my love—and love as I understood it does not hesitate. As befits my natal Venus, I received a lot of support for my decision from those who knew us, and we both continued to receive a great deal of support from family, friends, nursing providers, and support groups throughout his illness. On the day he died, transiting Saturn in my 8th house (of death) was squaring Uranus (surprise) in my 5th house (of love).
I was both shocked and emotionally unprepared for his death; I had believed that with proper management we would be able to continue caring for him for many years to come. Coping with the death proved to be far more difficult than coping with the caregiving had ever been.
I recall that several people asked me, some with great intensity, how I had been able to cope with the caregiving so well. I don’t know myself that I coped with it ‘well,’ but I do recall that I told people that it was easier for me than for some in our support group because I followed the rule of always putting myself first.
It was possible for me to put myself first for a number of reasons. First, we had adequate resources to get assistance from others, including home nursing visits. Second, Ken (the one with ALS) was a remarkable person, and his charismatic personality naturally attracted support and friendship from a wide variety of people. Third, I was young and strong and in love.
The in love part was particularly important because it was the basis of the intense emotional intimacy Ken and I shared throughout his illness. We did not lock ourselves into the roles of ‘saint’ and ‘victim’ or ‘caregiver’ and ‘sick person.’ Sometimes he adopted the role of ‘pain in the ass’ and I adopted the role of ‘tired of trying to cook for you and not willing to try any more.’ We ran through the full gamut of emotions with each other, from anger to wonderment to detachment to confession, including some I don’t have names for. We didn’t try to be perfect; we were just ourselves as we always had been.
Since he wasn’t the victim and I wasn’t the rescuer, I didn’t feel guilty about getting my hair done or taking a nap or even not wanting to listen to his complaints for awhile. And he didn’t feel guilty for whining or making dirty jokes or trying to explain how he felt about death. Because we were always so honest in our communication with each other, we were in some ways in the middle of our ‘normal’ lives when he suddenly succumbed.
It isn’t always so easy. A couple of years after Ken died, I worked with a woman whose mother had Alzheimer’s. The strain of caregiving was wearing her down to an angry, resentful nub. The emotional intimacy between mother and daughter had never been there, and my friend was unable to express her daily irritations without a mixture of horrible guilt and anguished rage.
By the time my friend was due for Pluto square Pluto (a transit that occurs in early mid-life for everyone and is often one of the first crises of mid-life), something had to give. My friend was forced to put her mother in a nursing facility, for she had been diagnosed with ovarian cancer and could no longer provide care. You could say that at the moment of diagnosis, my friend’s entrenched habits of sacrifice and emotional repression turned around, that she began to put herself first after years of self-denial in the face of the demands of her mother’s illness. In truth, the path was not so smooth, and as is typical with these mid-life crisis transits, it took about a year and a half for her to gain her footing on a new path.
But she did gain footing. She battled the ovarian cancer heroically and successfully for a decade, at a time when treatment options were few and the prognosis was so grim that her doctor all but told her she wouldn’t survive a year. In the process of her battle, she accessed the beauty and healing power of anger and determination and yes, even selfishness. Although her mother’s Alzheimer’s disease had progressed so far that it would be misleading to say the two achieved emotional intimacy through honest communication, it wouldn’t be unfair to say that my friend did achieve a different kind of emotional intimacy.
With the help of Pluto square Pluto and a terribly difficult crisis, she achieved emotional intimacy with her friends, her siblings, and even herself. She achieved it by allowing herself the full range of her own emotions and tending to those emotions first. Although it may seem unrealistic at times, if I could give anyone in a caregiving situation advice, it would be to put yourself first by honoring your natural emotions.Last Modified May 28, 2009 @ 12:51 am