Helpful advice for the journey ahead…
Sticks and Stones
As young children we are taught the saying “sticks and stones may break my bones, but words can never hurt me.” It isn’t far into our adult life, maybe the first scuffle with our best friend or our first break-up, that we realize words are the harshest weapon on the planet. They hurt more than any stick, stone, knife or bullet and the worst part of all…you cannot ever take them back once they are spoken.
Caregiving is a difficult job. You often find yourself over-worked, exhausted and in someone else’s personal space on a regular basis. Exhaustion and lack of personal space can very quickly lead to a lack of patience or becoming hot tempered. To make matters worse, the person you are caring for is obviously ill or suffering from some sort of disability or disorder. They are probably uncomfortable, possibly on medication, and “no longer themselves.” It is their personal space that is being invaded by you; they are no longer independent and quite possibly not thrilled about the situation.
Disorders and illnesses such as dementia, Alzheimer’s and amnesia (TBI or stroke), can be difficult because the patient may not remember who they are, or who you are. It is certainly not the patient’s intentions to hurt your feelings, however, feelings may be hurt. It is important in a scenario such as this to be prepared.
In instances such as dealing with a cancer patient or someone who has suffered a debilitating injury, the pain and pain medication may lead these patients to say hurtful things that they may not have spoken otherwise. “Chemo-brain” is another horrific side effect of certain medications that leave the patient at a loss for words, loss of memories and downright aggravated.
It is important as the caregiver not to react to these situations. Our natural human reaction is to become defensive. Once we become defensive, chances are we may say something we will regret. Once the words are spoken, they cannot be taken back.
I am not suggesting that being sick or disabled is an excuse to say hurtful things and get away with them. Take a good long look at your particular situation and determine what is and is not worth becoming worked up over and what is forgivable. If you cannot handle that your own father does not recognize you, but he is in the progressive stages of Alzheimer’s, you may not be the best person for the caregiving role. On the other hand, if you are in a situation like mine, where most of the arguments were strictly mother-daughter spats, think twice before you lash out.
Towards the end of my mother’s illness, she became very loopy. As a child, I remember her drinking too much wine and becoming tipsy. The characteristics of her illness progression where very similar to who she would become when she had too much to drink. It was a negative trigger for me, and would in turn make me a much less patient caretaker. Her symptoms made me anxious and uncomfortable. I was convinced her cancer had either metastasized to her frontal lobe, or she was drinking when I was not around. Either way, I was not happy.
I convinced the physicians my mom was losing her mind and that something must have been terribly wrong. After several tests and scans, it was determined that her illness was not progressing at all, and that I may be the lunatic, not her. It eventually got to the point that we could not be together longer than a few hours without wanting to rip each other’s hair out. No answer I gave her for her questions was correct, and every word that came out of her mouth made my skin crawl.
In late November of 2008, World War III broke out in the Zellick household. We told each other exactly what we thought of each other…and it was not pretty. After my dad calmed me down and reminded me that one day I was going to regret everything I had just said and that I better stop while I was ahead, it was determined a break was in order. I was going to run away to the coast with my boyfriend for a week, and Dad was going to take Mom to Mexico the day before I made it home from the coast. This would give us exactly two weeks and sixteen hundred-twenty four miles apart from one another.
Unfortunately for me, “my mom” never made it back from Mexico. Her physical body returned on the plane, but her cognitive mind was gone. She had been secretly suffering from hypercalcemia, and it was later determined the hypercalcemia was why she was “loopy”. A urinary tract infection she had contracted on her trip along with the low-grade hypercalcemia had been too much for her kidneys to handle. Thirteen days later she passed away. Gone; no opportunity to say “I’m sorry.” I was, however, lucky enough to get an “I love you.”
I hope this wasn’t as hard to read as it has been to write. I suppose it drives the point home; sticks and stones may break bones, but words break hearts. Choose your words wisely.