KISS is Bliss

Sumi’s caregiver’s car engine blew up and is shopping for another inexpensive used car. She did not come most of last week but I had no problem taking care of Sumi’s morning chores.

Lately, though, Sumi has become fussy and refuses to eat her breakfast. I try to talk to her and sing songs to keep her amused but she still takes a long time to finish eating. Either she is tired of the same breakfast every day or her appetite or taste buds are changing. All that happens at some stage for people with Alzheimer’s. But it is difficult for me to pin-point Sumi’s reluctance to eat.

During Sumi’s visit with her neurologist in May 2017, he asked me, “Do you know what the toughest decision will be in regard to Sumi?”

I thought for a while. I had read about the gut-wrenching decision care partners make about when the care partner and person with the disease get separated. Care partners usually feel guilty of breaking the marriage vow of ‘till death do us part.’ I told the doctor, “It must be about putting Sumi in a nursing home at some point.”

The neurologist said, “No. In the very, very late stages of the disease food intake becomes difficult resulting in substantial weight loss. Have you thought about tube feeding her?”

I said, “I will let nature take its course.” No tube feeding.

When I got home, I checked Sumi’s medical Power of Attorney. It clearly states that if the medical treatment outweighs the expected benefits of the quality of Sumi’s life then I am authorized to direct that procedures other than manual feeding will not be instituted.

So now, when Sumi doesn’t focus on eating well my mind races back to that discussion with Sumi’s neurologist and I think, it is the beginning of that stage, where chewing and food intake are going to be difficult and will result in inevitable weight loss… But I know thinking like that only leads to frustration and suffering. I should be living in the present but in those moments I am not.

As I thought about this worry, I tried to find the root cause. I happened to talk to my son, Jasen and he told me, “Dad, you are acting like the CEO of Mom’s life.” Later, as I thought about it, I realized how extensively I am involved in Sumi’s life—24 hours a day, 7 days a week. I am always thinking about numerous things and must maintain a 360˚ view of her well-being.

On the other hand, when Sumi’s caregiver faces the same issues while feeding Sumi, she is like a line-worker on an automobile assembly line. Focusing on what needs to be assembled on the car, at that moment, to keep the line moving.

So, while knowledge is power, in this instance, it also is the cause of my worries. As Buddha has said, it causes the suffering of thoughts, resulting in negativity and thereby frustrations. Whereas mindfulness, that is the mental state achieved by focusing one’s awareness on the present moment, and simplicity is bliss. As the saying goes, KISS—keep it simple stupid. This helps Sumi’s caregiver do her job more effectively.

Although Sumi’s caregiver and I perform the same tasks, there is obviously a difference between a caregiver and a care partner. This reminds me of a question: What is the difference between eggs and bacon on a breakfast plate? For eggs, the hen is involved like a job. The hen gives eggs but stays alive. As for bacon, the pig is sacrificed in order to provide the bacon.

One can say Sumi’s caregiver is a hen and I am, at present, a pig. But we both are needed as we enhance each other and play our respective roles for effective caretaking.