3rd October, 2013

The Long Walk Home

October 3, 2013

I’ve been struggling about what I should include in this blog, and what I shouldn’t. This story isn’t funny. It isn’t light. It isn’t even about sailing. But then there are many aspects to cruising, and to not include something because it is difficult or unpleasant would be wrong. So I have made the decision to share some intimate moments, because life continues despite the choices we make.

I sometimes think many people assume that since we are cruising we are off having the time of our life and that “living the dream” €means it is all “fun and games.”

Not true. It has its sunny days and its rainy days. And as I sit here contemplating the last few days, I am reminded of a saying from the Tao Te Ching that goes something like this, “Sometimes breathing is hard and sometimes breathing comes easily.” Today, breathing has been hard.

Basically, life, while cruising, is like any other life. For instance, weather is a constant issue. One that we have to be aware of and vigilant with regarding our anchorages, as well as our passages. Things break and we have to fix them. There are daily chores. Just provisioning can be a challenge, especially without a car and in foreign ports. Everything, including the language, is unfamiliar. There are disagreements. We still get depressed and get sick, and need to rest. We continue to watch our children grow,albeit from a distance. We share in their accomplishments and lament over their heartaches. And we watch our parent age. Some go quickly, like my father, who died of a heart attack at the young age of 66. And then there are those who, like my mother, take the long walk home.

Mom has Dementia. She lives in a two-bedroom cottage on my brother’s property. He built this home for her when we realized she could no longer take care of herself. This has allowed my mother her privacy and the comfort of her own home while still being watched over by someone who loves her deeply, her son.

Jim does everything for her. He feeds her, cleans her house, monitors her medicine, takes her shopping, keeps her company, etc. Mom depends on him for everything and for that she is truly grateful and says so on a daily basis. (That is, when she is cognizant of her surroundings.)

As the Dementia has progressed, we have hired a woman caretaker who bathes her, washes and curls her hair and gives her a manicure. She is great company for Mom and she enjoys Nichole’s visits.

Jay and I visit three to four times a year, both to help Jim by giving him a break and to spend time with Mom. We miss her.

With each visit there is some sort of noticeable decline. Jim warned me that Mom was “€œfalling into the hole” more often. (This is when she seems lost, not quite sure of her surroundings. It’s almost as if she is half in this world and half way in another.) Jim had to take her phone away as they discovered she had been calling some lady at all times of the day and night for over a year. I am guessing she tried to say something, but not being able to put her words together, in addition to hearing an unfamiliar voice, it threw her, and ultimately she hung up. The lady on the other end, not knowing the source of these calls was, understandably, upset.

That is another problem for Mom. She can’t collect her thoughts and present them verbally, making communication difficult. We often wonder – how much does she understand what is happening to her? One time, recently, she told Jim, “Something is wrong with me. I lost my memory.” It surprised him, first, that she could actually say these two sentences in sequence, and second, it saddened him that, on some level, she might actually know what was happening to her mind. It turns out, he took comfort in the idea that she was aging in a child-like way, innocent and unaware. That she was seemingly in a happy state, despite her condition. I agreed.

But now, I question whether or not she continues to reside in that “€œhappy state.” She is incredibly frail. Her bones are weak and have trouble holding her upright. She complains she doesn’t feel well. And not unlike a child, she is unable to communicate what, exactly, is the cause of her discomfort. We guess and give her medicine and lie her down to rest.

A few hours later, she seems bright again. She says she feels better and that is hopeful. Not long after, she complains again she isn’t feeling well and that her body, well, she tells me,”I am dying.”

What does one say to that?

I am witnessing her body shutting down. Do we take her to the doctor and subject her to a battery of tests and procedures to keep her alive when her quality of life is so diminished? Or do we allow her the grace to accept her destiny and let nature take it’s course? Can we find peace in the inevitable and finally surrender, letting God hold her hand on this long walk home?

I don’t have the answer. I just sit with Mom and comb her hair. I talk to her and let her know she is loved and not alone.

So, yes, sometimes breathing is hard and sometimes it comes easily.

Today it was difficult to breathe.