Going Up The Down Escalator!
As time has passed, it has become harder and harder to communicate with Hubby. His hearing has declined equally in both ears (apparently as a result of Chemotherapy ten years ago). His cognition is severely reduced. For quite a long time, I have wondered if it might be possible to separate the two. Is it Hubby’s hearing that is defective or would he still be confused if he could hear clearly?
This week communication has reached a crisis point. Whatever I say, regardless of how loud I speak, is met with confusion. He repeats words that I never said and everything spirals out of control. This evening I could bear it no longer. Not one word that I spoke was understood and I was exhausted from trying to defend that which I never said in the first place.
Seeing the problem increase in recent days, I made a private appointment with an ear specialist at the hospital to have his ears professionally cleaned. I know that taking Hubby to a hospital during this continuing Corona crisis has its risks, but we have had three injections each, and the appointment is in the evening when the halls will be quite empty of patients, staff and visitors. Once his ears are clear perhaps there will be an improvement. In the meanwhile, it was time for a creative approach.
I asked Hubby to sit with me in front of my computer, as I typed my answers to his questions in a size 24 font, all in capital letters. I had to explain that a replacement caregiver would be working for the next 24 hours, and that Violet would be away on her day off. Hubby was able to read my explanations, even though he could not hear them when I spoke. It worked well, or so I thought.
Both the questions and the answers were in large, bold type for Hubby to read. He asked his question, which I wrote on the screen along with my answers:
“WHERE IS VIOLET?”
VIOLET IS NOT WORKING ON FRIDAY NIGHT AND SATURDAY. SHE WILL RETURN TOMORROW NIGHT ABOUT 9:30 P.M. SHE WORKS FOR US SIX DAYS A WEEK EVERY WEEK. SHE HAS MONDAY, WEDNESDAY AND FRIDAY EVENINGS OFF FROM 5:30 PM. (too much information… I should know better!)
“WHO IS COMING TONIGHT?”
VIOLET HAS BROUGHT IN RUTH TO HELP US. RUTH WILL COME TONIGHT AT 9 PM. RUTH WILL STAY WITH US FOR 24 HOURS.
“WHY ARE SO MANY PEOPLE COMING AND GOING?”
THESE WOMEN ALL HAVE FULL TIME JOBS. WE ARE AN EXTRA JOB FOR THEM. THEY CANNOT WORK EVERY TIME WE NEED THEM. THEY ARE TIRED FROM THEIR REGULAR JOBS. THEY TAKE CARE OF OTHER OLDER PEOPLE IN THEIR HOMES SIX DAYS A WEEK. WE ARE EXTRA. THEY WORK FOR US ON THEIR DAY OFF TO EARN MORE MONEY. WE DO THIS EVERY WEEKEND WITH A PERSON WHO WORKS SOMEWHERE ELSE DURING THE WEEK.
“WHEN WILL SHE COME HERE TONIGHT?”
RUTH WILL COME AFTER DINNER. SHE WILL EAT IN HER OWN HOME.
“HOW OLD IS SHE?”
RUTH IS 62 YEARS OLD.
“I LIKE THEM YOUNGER. THAT SOUNDS VERY OLD! ”
(NO RESPONSE COULD BE APPRORIATE.)
“WHAT IS FOR DINNER TONIGHT?”
WHAT WOULD YOU LIKE? I HAVE A ROASTED CHICKEN WITH MASHED POTATOES. OR PANCAKES WITH CARAMELIZED APPLES, OR PITA WITH CREAM CHEESE AND GRAVLAX? (again… three choices is two too many!)
“IT IS TOO EARLY FOR DINNER!”
WE ATE LUNCH AT 2 P.M. IT IS NOW 7:30 P.M. WE USUALY EAT AT 8 PM. WE CAN WAIT A HALF HOUR IF YOU WISH. YOU GO TO SLEEP BY 9:30 P.M.
“I WANT TO EAT AT 10:00 P.M.”
NO, THAT WILL BE TOO LATE. YOU WILL NOT HAVE TIME TO DIGEST YOUR FOOD. WE WILL EAT AT 8:30!
I tried offering the choices in writing. Hubby can be quite difficult and it was easier to give him three choices than to plop a massive meal on the table, only to be told he will not eat it. When we discuss it without writing the choices down, he cannot make a decision and cannot remember the options. The truth is, that I should have only given him two choices, three is too many for him to process. I do know better, shame on me!
This evening, with my new approach, his choice was to have Pita bread with cream-cheese and my home cured Gravlax. Still, he insisted that he could not eat before 9 PM. He threatens that if he eats earlier, he “will be sick.” This is his charming automatic response for absolutely everything he does not want to do! It is indeed reminiscent of a four-year old’s reaction. With no energy to have this debate again, I went with the flow.
To facilitate answering the same questions over and over again, I printed his questions and my answers on two pages for him to keep and re-read.
The next time he looked at the pages, he said:
“So, I am going to have chicken and mashed potatoes?”
“No,” I answered, “Please read the choices.” I pointed to the paragraph which he re-read.
“Oh, I want the pancakes with caramelized apples for dinner!” Okay, no problem for me as I had not yet prepared the meal. Three is a charm. He enjoyed the pancakes in spite of his inclination to complain about almost everything.
After the meal, he began asking the same questions about who would be caring for him, when they would arrive and leave, and how much they should be paid. Did I have enough money to pay them? Did I spend all our money? Please could I give him an accounting of our finances? And on and on. I redirected him to the two printed pages with some of the answers, but not the financial ones. There is no way on this earth that Hubby would be able to keep any of that straight any longer.
Using the computer served many purposes. I was able to write his question, so that he would not forget what he had asked. Then I was able to write the answer, which he would never have heard. We stopped fighting about what he thought I had said instead of what I actually had emoted, and he could read and re-read the papers to his heart’s content.
Once he had become bored with the two printed pages, he asked me to “hide them.” He did not want our substitute care giver to see them.
“We are entitled to our privacy” he said.
There was nothing secret or clandestine on the pages which required secreting them. He decided to hide them in a book of photographs. He felt that they were safe there, which was of critical importance to him. Of course, he now has no clue where he put the pages for “safekeeping.” Neither do I, but then again, I have no desire to ever see them again and he has no memory of having hidden anything!
The old saying that “necessity is the mother of invention” applied tonight. I could no longer scream into his ear, only to evoke anger and misunderstanding. My experiment worked with limited success. Still, it became clear that even when Hubby does understand the words, he cannot process their meaning or retain the information for more than a minute. He can no longer deduce meanings or come to conclusions having been given the information needed to do so.
Perhaps this exercise was more about me than about Hubby. My frustrations levels needed to be reduced. Putting the questions and answers on the computer screen as a form of communication was superior to my screaming like a lunatic. My headache receded and it gave hubby something to read over and over and over….
It feels like I am swimming against the tide, walking up the down escalator provides a visual image of how little progress was actually made, but unless the ear-doctor’s appointment yields great results, we will be communicating on the computer screen until the end of our days together. Communicating with Hubby feels a bit like trying to build a sand castle on the beach, only to have a wave overwhelm it and wash it all away.
