A Caregiver Realizes The Subtle Things That Are Lost

Signs and symptoms, signs and symptoms. Most non-professionals use these terms as synonyms but they are really quite different. A symptom is a piece of knowledge or a feeling that only the sufferer can have access to, can only experience. A sign is an objective indication that an observer can see or know in some way. A rash we can all see, the itching only the sufferer knows. Signs and symptoms.

For any diagnosis, the healthcare provider must follow the indications given by the symptoms as expressed by the sufferer and the signs given to her/him by objective evaluations or by laboratory tests. The more subtle the signs and symptoms the more sophisticated the diagnostician must be to see and place the right emphasis and thus get to the correct understanding of what is going on. The more subtle and common the signs or symptoms, the easier it is to become sidetracked and end up at the wrong diagnosis – particularly for diseases or syndromes for which there are no really reliable or specific tests. My wife, for example, was thought for 11 years to have Systemic Lupus Erythematosis and only the eventual emergence of other signs corrected that diagnosis – or at least erased it.

Since there was no treatment, there was no harm except for the eleven years of living with the understanding of one belief only to be eventually tossed back into the unknown.

Most of us caregivers spend a great deal of time with our loved ones and, in the absence of the loved one’s ability to voice the symptoms or even be aware of them, become quite sensitive to the most subtle signs. Awareness of a sign is one thing, tying that to a specific disease process is another. We are driving along and the car engine misses a beat; is that a worn spark plug or a broken spark plug wire or a tiny bit of contaminated gas or just an oddity that occurs by chance? It is only when these tiny signs repeat and form a pattern with others that we actually understand.

With this disease, for which there is no cure or treatment, every change is a danger signal that ramps up one’s heart beat. Is this just a tiny stumble on an otherwise steady path or is it a lurching step down?

Since an unsuccessful back surgery to alleviate her pain, my wife and I have slept in separate but adjoining bedrooms, she in a special elevated bed and me in the usual bedroom. For years it has been our habit to spend the latter part of the evening in my bed, reading and watching television. Since she is a light sleeper and I wake very early, we have also gotten in the habit of keeping my bedroom door closed.

I have noticed in the last few weeks, besides a subtle increased loss in memory and understanding, she has started knocking on my door, asking if she can come in and then asking if I would like company, if she may get into bed with me.

What seems to have been lost is the memories of the years of evenings and the certainty that she has always been there and that it is her place as much as mine.

Perhaps not a big step down but surely the path is steepening.

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