Why the Stress?

A question (taken out of context in a more detailed e-mail) from our friend Pat: What is the reason you get so distressed? Besides just the bother of it all, the getting up and down, the senselessness of someone staring at something and not knowing what it is? 


The beginning of an answer in the return e-mail: This is a good question in that there are many reasons why Gregory's Alzheimer's causes me stress but by now most of the reasons have been so internalized that it is hard for me to explain. I will make this a topic of my next ALZ BLOG to see if I can make sense of it again for myself and therefore you. I will send you the link when completed.


I promise, this won't be an easy read!


From Wikipedia: Stress is a term that is commonly used today but has become increasingly difficult to define. It shares, to some extent, common meanings in both the biological and psychological sciences. Stress typically describes a negative concept that can have an impact on one’s mental and physical well-being, but it is unclear what exactly defines stress and whether or not stress is a cause, an effect, or the process connecting the two. With organisms as complex as humans, stress can take on entirely concrete or abstract meanings with highly subjective qualities, satisfying definitions of both cause and effect in ways that can be both tangible and intangible. 


So let me in phrase form, try to explain why being a caregiving partner to Gregory is so stressful. 


It is dealing with someone whose take on life makes no sense to you and therefore you do not know how to respond, to deal with it, to help. 


It is like playing the game of survival but not knowing what the rules are.


It is knowing that when you think you are getting the hang of it, the rules change, get shuffles or rearranged or deleted. And then the next day things look good and then maybe not the next.


It is watching the disintegration of the essence of someone you have come to love over the last 35+ years.


It is experiencing the disintegration of a relationship that you have built over a long period of time which has been based on communication, respect, trust, loyalty, etc. Loyalty and trust still exist but communication and knowing how to respect are no longer clear.


It is trying to understand that he can no longer make connections or associations between sounds, words, meanings, experiences, actions, decisions, etc. Yet he tries to live like nothing is wrong.


It is walking the line between understanding that he can no longer function in the way he used to, being supportive of his needs, and yet continuing to respect him and not insult his intelligence.


It is being involved in interactions in which you have no frame of reference on how to react. I.E. You feel like you are the disoriented one!


It is trying to keep the emotions under control and not react with anger or panic giving the intellect time to process the craziness of an interaction and come up with a reasonable solution. 


Often what is reasonable to you may or may not be reasonable to him.


When something goes wrong, it is the inability to intelligently discuss the event.


It is having known how to relate to a person you love, or any person for that matter, and all of a sudden finding that the rules you have been playing by not only change but fluctuate constantly. Come and go without warning, sometimes never to return.


It is thinking that a person understands what you have asked or said and then having that person respond in a way that does not relate to your understanding or doing something entirely different.


It is having to function on a day to day basis anyway with no guidelines on how to function.


It is the constant monitoring 24/7 of another person's behavior for the purpose of keeping him safe.


It is juggling your reactions to a man who often behaves or thinks like a little boy, especially when that man was one of the most intelligent, thoughtful people you had ever met.


It is not having a life partner with which to make decisions and/or talk things through. It is having to live your life, and his life, unilaterally without support.


It is not being able to cry on his shoulder when you are distraught because he, inadvertently, is the one who caused your sorrow, through no fault of his own.


It is the fear of the future and your ability to continue coping as the situation goes from dismal to more dismal. It is fear of the future ability to financially meet his care needs.


It is the inability to measure the progress of the disease when "better or worse" has no relative beginning or ending (except yesterday and death.)


It is realizing that you are growing old alone, without anyone to be there or support you. If you get ill there is no one to call for help or to take care of you.


It is not knowing how to describe to others how difficult the day to day interactions are especially when you have to deal with comments like: "Oh I loose my keys now and then too." or "I never was good at remembering names."


It is not being able to trust that he knows how to toilet himself, clean up after an accident, and or recognize that what he thought was passing gas was really moving his bowels in his pants. 


It is wondering where the mail went when he decided that he thought he should clear the table after dinner. 


It is finding the sink strainer in the garbage pail. It is finding socks in the refrigerator.


It is having to shop, put away the groceries, plan and cook, set the table, and serve dinner, and then clean up afterwards. And now it begins to be the same for breakfast and lunch.


It is finding him staring at the kitchen counter instead of making his lunch when he usually makes his lunch every day.


It is getting on the elevator and his not knowing which button to push. It is his inability to walk up one floor to deliver something to Apartment 501.


It is watching him get frustrated when there are too many items on his diner plate so you have to cut the food, point out the fork, and remind him to eat the potatoes. 


It is not minding when he begins to use his fingers to eat, to push a piece of food onto the spoon, or to scoop a mouth full of rice onto his fork.


It is not being able to carry on a conversation at the dinner table unless you take full responsibility for all sides of the conversation.


It is telling your stories as well as his in social situations and then wondering if everyone thinks you talk too much. It is having to tell him what to do and then wondering if everyone thinks you are quite bossy.


It is having to watch three people (and once five people) giving him help at the same time and seeing him get more and more frustrated and/or confused until you are able to speak up on his behalf.


It is listening to him tell stories about his life or family that never happened while not correcting him. 


It is not knowing how to help with an ailment when he cannot describe what is troubling him, even if you ask specifics to help narrow it down like: Is is a sharp pain or an ache? How long have you had the pain? Did you injure yourself?


It is being asked the same question over and over again.


It is his not knowing the day or the time.


It is having to "talk him down" after his waking up in the middle of the night from a bad dream and not knowing what is real and what was dream. 


It is having him protect you in the middle of the night while you are fast asleep as he knocks something horribly scary (in his mind) off your shoulder.


It is waking up at 3:00 am and finding him fully dressed and ready to start his day.


It is telling him to get his wallet and sunglasses as you leave the apartment, and realizing that he didn't follow through once you are on the street.


It is having him loose yet another pair of gloves, hat, scarf, sun glasses etc even when you are closely trying to monitor the items.


It is your teacher-self feeling like a failure when your "student" is not able to understand something even when you have used every skill available to you to help.


It is about him trying to make decisions but based on poor judgement or none and then trying to explain to him why his decision isn't a good one.


It is about him not seeing something that is right there in front of him. He looks around but doesn't see it. You try to point it out but he doesn't know how to follow your pointing.


It is about learning that you need to give him only one piece of a direction to do something at a time while at the same hime he is waiting for the full story which if given would only confuse him more.


It is like your son pleading with you to teach him how to ride a bicycle like the other boys in the neighborhood. I mean really pleading and wanting so much for you to teach him how to ride. But the son doesn't have legs and can barely sit up in a wheel chair.


It is about him doing something for hours and then asking a question about it that shows he doesn't have any idea about what it is that he should have been doing. An example is sitting in front of a jig saw puzzle for hours then asking what is the purpose of little bumps and holes on a puzzle piece.


It is about having to decide for him what he is going to eat at a restaurant as well as what you want to eat.


It is all of these things, and more. It is some that have not yet happened which will throw you for a loop, pull the rug out from under, freak you out, make you cry, terrify you, cause you to fear for the future ... and I could go on.