Joseph H Cooper
Pauses and Moments
When Mom Isn’t Mom Anymore
What’s to be done when cognition and recognition begin to evaporate?
Posted May 10, 2018
He wants to remember her as she was – as she was in his youth, as she was when he ambled into maturity, as she was when he ascended into his middle years.
He wants to remember her as she was prior to her descent into dementia and Alzheimer’s.
Long-term Memories as Forewarnings?
Though he suppresses the memories of her agitated disconnectedness, those thoughts still intrude as he walks past a “home” for those who can no longer be left in their homes.
No, he’s not haunted to distraction by how she looked and sounded and acted at the end, but the images come to him. They revisit when his eyes take in the needlework she did pre-glaucoma, pre-arthritis; when he opens a cedar chest to the stack of sweaters she had knitted for him, when she had a good fix on which stitch and which row and which needles were to be summoned in yarn artistry. The end-of-days images revisit, invariably, during the commercial run-up to the second Sunday of May.
No, he’s not overcome with mortal fear of what may be a blueprint or harbinger for him as he enters his eighth decade. Still, there is the possibility. There are those “negatives” – those black-and-white film transparencies tucked in his memory, which are as sharp and delineated as any of the Kodachromes in his more recent mental albums.
Memories and Forgettings as Forewarnings
When Mother’s Day reminders fill the airwaves, genetic possibilities insinuate, though they never overtake so many fond recollections. Those fond memories hold. When the media briefly turns attention away from political scandal, indignities and outrage, the descendant portendings descend. For now, happily, they are no match against the many good memories of her. He wants to archive those good memories for keeps.
And while he works at preserving those archives, the portendings come to him when, occasionally, he has trouble coming up with a word he knows that he knows very well. The first consonant or even the first syllable is on the tip of his tongue. Yet the rest of syllables are just out of mental reach as he works at reuniting the first consonant with the rest of its syllables. He can’t land them at that precise moment, though he eventually reels them in.
He is registering more cognition of his own memory lapses, and because of that awareness, he has become motivated to do whatever he can to forestall further loss.
What he hasn’t lost is the regret of not having done more – not being able to do more – for his mother as she was losing more and more of herself.
Memories of his mother’s decline continue to supply him with the impetus and determination to search for any and all theories about dementia prevention. His research will be methodical and well-considered – for as long as he can remember how to turn on his computer, and recall his log-in ID and his password.
And while he still remembers those log-ins, he is recording recollections of what he did say and what he did try to do.
A record of “precedings” and residential proceedings
He wanted to make sure he wasn’t imagining things, so he scribbled notes on whatever pads and sheets of paper were handy as he left her congregate living center. In hieroglyphics of semi-decipherable shorthand, he logged his mother’s anxieties and exasperations – and his attending observations and trepidations.
He wanted to make sure there was just cause for his concern – even as the considerate congregate-living staff were gently conveying their concerns. He wanted to make sure that he wouldn’t be overreacting in proposing a move that would be all the more upsetting to his mother – even as any move was surely going to be disorienting and upsetting to her.
He revisits the notes he made three decades ago, and offers this transcription, which is a distillation and melding of what he saw and said to his mother back then, during a series of visits. It’s as faithful a recreation as his memory and regrets allow:
What a son recalls when semi-independence was no longer viable for his mother
[Slowly, uncertainly, she was pacing back and forth, tracing and retracing the length of her obstacle-free private room in a congregate living facility. Nine yards in one direction, and then nine yards in return. It was as if he was separated from her by a wall of frosted glass.
In soft syllables, delivered as if with a demitasse spoon, he hoped his mission would not alarm or agitate.
He hoped that the delicately delivered syllables would beckon her to come out of what was akin to a trance. He had to get her attention, even as he hoped the import of the undertaking would not fully register.]
Mom, there are things we have to talk about.
There are things we should talk about, this afternoon."
[He held up his left hand in the hope that even with glaucoma, she would find it, and view the signal as a friendly attention-getting gesture. The gesture seemed to have the desired effect: it steadied her and slowed her back-and-forth pacing. She looked at him as if she hadn’t noticed him, let alone heard him, up until that point.
There were several double-pocket presentation folders on his lap. Each folder was stuffed with brochures, promotional materials, medical history and disclosure forms, application forms and the like required by “homes” that would provide more attention and a higher level of care.
He opened the top presentation-folder and withdrew a multi-page questionnaire. In his right hand, a pen was poised over the first set of forms. He looked up at his mother and began asking questions in a gentle tone of voice.
He worked at keeping his voice calm; he didn’t want to convey any sense of urgency; he hoped he could get through at least one set of questionnaires and applications without causing her alarm and distress.]
"Okay Mom, here we go."
[In a moment he recalls as amusing, he said] "This can be fun.
So, we start – full name and address. Birthdate."
[He made entries, then looked up, gestured to the brocade-upholstered chair he had brought from her apartment. He moved the footstool closer to the chair; it was one of several that was covered in needlepoint she had done pre-glaucoma, pre-arthritis; done well before the holes in a needlepoint scrim would confound her, and a needle would be problematic.]
"Mom, wouldn’t you be more comfortable sitting?"
[As his mother maneuvered into the chair, he resumed with the questions and entries.]
"Okay. Age. Birthplace."
[He was about to read the lines headed by the word “Sex” but decided to merely check “Female” and draw a line through the rest of that line of inquiry.]
"Moving along, let’s see – height and weight. We’ll approximate, for now."
[He reached down for his briefcase to retrieve a small notebook; consulted it and then resumed writing entries onto the application form.]
"Primary-care physician. Podiatrist. Eye doctor.
Medical history. Hospitalizations. Current health and medical conditions. Current health and medical issues."
[He continued to consult his notebook and make entries, briefly looking up to glance at his mother – who occasionally smiled the sweet smile he wanted to hold onto, and hoped would stay with him, even as he wished against faint hope that the smile would always stay with her.]
Present condition and diagnosis."
[With increasing pace, he recited and wrote.]
"Ambulatory – well, yes, you are.
Mental status –"
[He sighed and mumbled to himself]
"in and out.
Sensory status –"
[He mumbled to himself]
"hard to say."
[With increasing pace, he recited and wrote.]
"Dietary issues and/or concerns.
Condition of skin.
Special treatments or therapies."
Proceeding so as not to alarm – tone of voice
[With a hint of hesitation and a bit of uncertainty in his voice.]
"Needs assistance: Transfer."
[With another sigh, and only a moment’s hesitation, then another, he resumed with these entries, checking the boxes that would indicate her oncoming need for more and more assistance. There would be more and more dependence and indignity.]
"Dressing – check.
Feeding – check.
Bathing – check.
Toileting – check."
[He again consulted his notebook, and then with care entered information in response to several more pages of the questionnaire and application. He recited the items in the hope that she might be engaged enough to register what they were undertaking – but not so very aware that the exercise would cause alarm. He wanted to make it through at least one application. Then he would be “free” to deal with the consequences when he could look at her and hold her hand, and comfort her in any way that might have a soothing effect.]
Proceeding so as not to alarm – word-choice worries
"Insurance plan and member number.
Method of payment."
[He paused there, looked up, for he knew she was always concerned – worried – about money. He wondered if words such as “payment” and “bank” might bring to mind Depression-era woes that cling and can bring on shudders of remembrance.]
[His father, who had passed two years previously, had left sufficient FDIC-insured accounts that would cover all the initial fees and expenses, and then some. But at the congregate living facility she had often asked, “Do we have money for all these hotels and dining rooms, and the maids?” She had never been waited on, never been cooked for, never had cleaning services and housekeeping help. And yet, she would often ask when they were going home. She missed what she recalled of home. He was also sure that she was worried about the money the “hotel” was costing.]
"Hmm. Bold letters."
"It is the resident’s responsibility for assuring that the financial obligations of his/her health care are fulfilled as promptly as possible.
Name of responsible party. Relationship to applicant. Address, phone number, email."
[He tried to introduce some levity in reading the following.]
"Ahhh hah, still more in bold letters.
It is the responsibility of the next of kin or responsible party to notify the facility immediately of any change of address and/or phone number, and of any time that the next of kin or responsible party will be away from their given address and/or phone number for more than 24 hours."
[He looked up at his mother, took a deep breath, and then another, before reading the following.]
"Person to notify in case of emergency.
Relationship to applicant – and contact information."
Her dependence on the independence and health of her only child
[Done with the contact entries, he turned back to a section he had skipped not quite inadvertently. Actually, he had skipped the section intentionally so as not to dwell on the disclosures about her physical predicaments, her medical situations, and her mental circumstances.]
[He paused and then resumed.]
Using the descriptions pertaining to the scale one to ten, signify degree of independence and dependence."
[Without fanfare, he inserted the questionnaires back into a presentation folder. His respiration issues and elimination complications were not severe. Might they ever impede his ability to be her 24/7 in-case-of-emergency go-to responsible party?
He set down his pen, and looked up at his mother.]
Mom, there are things we have to talk about.
There are things we should talk about, this afternoon – but maybe…."
[He deposited all the folders back into his briefcase. He had had a moment of clarity.]
"Ice cream. I think we have earned at least two scoops. Wha’dya say."
[She smiled – not the indulgent, forgiving, just-go-along smile, but one of anticipation and delight. Still, worry followed.]
"Can we afford it?
I have some money."
[She began fumbling for a pocket in her “house coat.”]
"Mom, we have plenty of money."
"Really? Plenty? You wouldn’t kid me, would you?"
"No, Mom. I mean, yes, we have plenty of money."
[With a relief that was still on the fringes of worry, she said] "Well, maybe."
[Shyly, with a cautious smile, she quizzed him in hope and anticipation.]
"Two scoops? Vanilla and chocolate?"