Take care of your mother

When I found out that I was to give a talk on the growing male caregiver role, the first thought that came to mind was- why me? I asked Pat Sasaki that question, why me? I told her “I’m sure there other males around who are expert on the subject.” She looked at me with mock disbelief. She said “Charles, caring has always been something women did. There are no male experts! Just talk about how you bungled taking care of your father.”

At least I gained from her that I don’t have to talk about husbands’ giving care to their wives. In spousal caregiving it usually is the wife who is the caregiver. When males are the caregivers, usually they are caring for a surviving parent, as in my case, rarely to frail wives because husbands usually become frail first.  

Likewise, it is almost always the daughter, not the son, who ends up caring for their aged parents. The elderly live longer than ever before, reaching their 80’s before becoming dependent.   This means that that their adult children are elderly themselves, in their 60’s. And, as we know, it’s usually the son that becomes frail first, not the daughter.

Thus, caregiving is not only a medical and social issue, but a women’s issue, as well. Women have always been expected to carry the burden for caring for elderly parents, whether or not they are prepared for the responsibility.   The growth in the number of women entering the labor, however, is changing all this.  Now men may have to assume part of the responsibility.

 The informal support system, still largely unheralded and invisible to most people, accounts for about 80% of all caregiving to the elderly. There is a tremendous implication here for Medicaid. For example, in 1986, 95% of the State’s Medicaid budget for long-term care paid for the cost of institutionalization.   Imagine what would happen if the informal system should break down!

I took care of my father for three years. He was 83 and a double amputee, right below the knees.   My wife, who is an RN working the 3:00 p.m. to 11:00 p.m. shift, did the caregiving during the day, despite suffering from an ailment called EBV, or chronic mononucleosis (now known as "chronic fatigue syndrome"), which limits her activities.  My 13-year old son and my 10-year old daughter helped her after school and took over when she went to work until I got home from work around 6:00 p.m.   

Every night, before bedtime, while my father sat in his wheel chair, I’d give him a cloth bath. Afterwards, I’d gingerly clean his dentures and rinse his mouth. Then I’d shave him carefully, occasionally following up with a massage on his shoulders and neck. Then, while he lifted himself up on the arms of the wheelchair, balancing precariously, his emaciated body quivering, hardly able to hang on, I’d quickly slip his pajamas on him- always fresh ones. On Saturday mornings, almost like a ritual at 8:00 a.m., I’d lift him into the bathtub- he wasn’t very heavy without his legs- and let him soak for a while before getting a good scrubbing from me. On Sundays after church, I’d take him for a stroll in his wheelchair around Mililani Town. I made it a point not to deviate from this routine. 

But the caregiving was mechanical- I had resented my father for no good reason.

It began with my immaturity and irresponsibility as an adolescent. We had communicated only when necessary. And when we did, the talk was short and curt- “yes”, “no”, “I don’t know.” And whenever I had sensed that he was trying to reach me- to penetrate the barrier I had built around me just for him- I would have a scornful look on my face.   I remember the puzzled expression on his face when he first had noticed the change in my attitude. I also remember how his subsequent efforts to get me to snap out of it became feeble. At first he was demanding, later he was apologetic- until he just finally stopped trying altogether.

When I became an adult, I hated myself for treating him that way; but it was too late- I could not face up to a close relationship with my father. Such was the state of our affairs when I became his caregiver.  Consequently, my caregiving to him was mechanical, as though I were a paid home health aide.

There were times, however, I would sit and stare at my father behind his back, remembering how close we once had been when I was a young child. In those silent moments I would mentally say to him “you’re ok, Pa, which translated, meant “I do care for you,” or telling it without hedging- “I love you, Pa, even if I never told you.”

What was most painful to him, from my silent observation, was not anything I did or didn’t do, or said or didn’t say, but was something more devastating- my mother’s abandonment of him.  About once or twice a week he would call her on the phone.   Then, as the months went by, I noticed that he had to make up reasons to call. He would start out by saying “I called because…..” The conversation would last only a minute or two.   Then he would devise ways to prolong them. He would feign excitement; he would feign contentment; he would even pretend to be nonchalant. Still, the conversation would end after one or two minutes. After hanging up, he would remain by the phone, dejected, in his wheelchair, staring straight ahead at nothing in particular. I would know when he was crying quietly, even in the darkened room, because the slightest light from the sunset stealing through the curtains would cause his eyes to sparkle the way eyes do when they’re moist with tears. Those were the moments I wish I had been emotionally an adult, strong enough to have gone up to him to hug him from behind the wheelchair and to have said “don’t feel bad, Pa. You still have me.”

I often wondered what this poor man could possibly be thinking about. What enjoyment, what comforts could he possibly have! His mind was not old- only his body was.

One day, after two months in the hospital, during which time he had resigned to his inner world- no longer showing interest in his wife, nor in his surroundings, nor in his children, nor in his grandchildren- he became alert for a brief moment. He turned his head to me, his glassy eyes focused on my face, and in a weak, high-pitched, raspy voice said: “Take care of your mother.”

He died the next day.

His last words “take care of your mother” was his way of making amends with me, of reaching out to me for the last time; it was his way of telling me “Son, you’re okay.”

I could have told him that he was okay, too. But it was too late.