“You must understand, Mr. Peck, this is nothing at all like diagnosing a heart condition or a broken bone. There are few organic signals to tell us what we’re dealing with. For the most part we must rely on behavioral clues.”
Dr. Bruce Flescher had sent Leona Peck down the hall with a nurse on the pretense of yet another phase of his examination. Meanwhile in his private office, with Aaron Peck seated across the desk, the doctor was ready to render his verdict.
“As you suspected,” the specialist continued. “I believe we are dealing with Alzheimer’s Disease, or some other closely related form of dementia.” Aaron’s expression remained stoic and unchanged.
“We may never know the exact diagnosis, which in one sense doesn’t matter, because there is so little we can do to limit or alter the process.”
"There's nothing at all?” Aaron asked. “No way to help her?”
“There are things we can do that may minimize some of the symptoms....especially the anxiety and agitation episodes. Perhaps we can help her deal with the withdrawal tendencies.
"As for her memory loss and disorientation, there are new medications being tested. But so far their impact is rather limited and not at all uniform. We’ll be looking into those possibilities, but there’s no need for me to get your hopes up too high. In most of these cases there’s not much we can do.”
“And you know for sure that’s what it is?”
“We’ve conducted tests to rule out other, more treatable causes. We’ve found nothing else that would account for her condition.”
Aaron stared blankly into his folded hands. “She’s gone downhill so fast this last year. Will it be that way from now on?”
“That’s impossible to say,” the doctor answered. “These are incredibly variable diseases. The fact that it came on so rapidly may mean it will continue at an accelerated rate. Sometimes, however, a patient will stabilize at a particular level for months at a time. There’s just no way of knowing.”
“No way of knowing.” Why did that seem to be the standard medical disclaimer for Leona Peck’s decline? Beyond that, Aaron remembered again how deflating the words “We don’t know” could be when spoken by a physician.
“So what do we do now?," he asked. "How can we deal with this?”
Those had become Aaron’s operative questions. He had relied on the steady wisdom of that spirited woman for more than half a century. In the face of this new trial, he must find the proper way to repay her trust. “How can I help her get through this?”
Dr. Flescher looked over the top of his glasses into Aaron's worn and aging face. It had happened so often he reminded himself....a dejected husband or wife asking for more than he or any physician could offer. By then he was wondering if Mr. Peck was up to dealing with what lay ahead.
Finally the doctor cleared his throat to explain, “This will be a test for both of you. The two of you, Mrs. Peck and you, will have to ‘get through this’ together. There’s no denying, however, that most of what has to be done will fall on your shoulders. You’ll be carrying more of the load, along with whatever help you receive from family, friends, and other care givers.”
“How will I know if I can do that? What will it take?”
Rubbing his chin Dr. Flescher returned to the words he had recited so often before to anxious spouses and children. Never once, in the course of dozens of such explanations, had he been satisfied with how he had made his point.
“Mr. Peck, the only way I can be fair to you is to be completely honest.” Aaron nodded his silent assent.
“There is only so much you can do. There may come a time when you won’t be able to provide the care she needs, the kind that is best offered by professionals. At some point in the future I will probably have to recommend that your wife be placed in a care facility. Do you understand?”
“I guess so.”
“I’ve known people, men and women, husbands and wives....who could not accept that fact. Instead they chose to keep their loved one at home, right to the end. When it was over....and it only ends one way....every one of them understood that what they had done was for their own benefit, not the patient’s.”
“What does that mean?”
“It means that their wife or husband, their father or mother, was never aware of their sacrifice or their extraordinary love. The care-giver took on that burden for themselves, for their own reasons. I’m not saying that’s wrong. But you ought to understand the difference, so you won’t be fooling yourself.”
“How will I know that it’s time?”
“We’ll be here to help you know that. But the final decision will be yours.”
“And what about the time between now until then?”
In the minutes that followed Aaron received, in a condensed form, his first lessons in CAP....the Care of Alzheimer’s Patients. He listened to the doctor’s advice and accepted a small stack of pamphlets that described in detail the future he could expect to face.
The basic instructions were remarkably simple. Within the walls of their own home Leona Peck should be encouraged to remain as self sufficient as possible. But she must never again be out of the house alone. And all the while Aaron must be vigilant, confirming that she was making good choices. If she was not, he must be prepared to help.
It remained to be seen how long Leona would be able to take care of herself. The doctor had stressed that the more stable and predictable her surroundings the better. Stress, aggravation, and upsetting surprises were to be avoided. But in even the best of circumstances her feeding, hygiene, and health concerns would more and more become Aaron’s responsibilities.
Finally the doctor ended his overview of Leona’s situation by addressing a final set of issues that Aaron had never stopped to consider....his own mental and physical health.
The doctor's advice was clear. It was important that Aaron have occasional breaks from his role as Leona’s primary companion. A weary and reluctant care giver, who could not take an occasional break from those consuming duties, would surely come to resent his role, putting the patient at even greater risk.
Dr. Flescher had made his point. His description of Leona’s probable future, and its impact on the lives of those who cared for her, was intended to get Aaron’s attention. It had certainly accomplished that.
Though it was nothing at all like the future he would have chosen, it was where his long-standing promise to Leona was taking him. That unhappy realization led naturally to a new concern. How would he introduce the girls to their mother’s new reality?
The next Saturday, after a light lunch, while Leona retired to the back bedroom for her nap, Aaron gathered their guests....daughters Mindy and Carol, their husbands Don and Hal....in the living room of the Peck home for a family council.
“We have to talk,” he began reluctantly. “About Mom and what’s happening to her.”
Again he wondered if he could find the words to explain their dilemma. Across the room the four of them exchanged anxious glances, seeming to ask what they should expect to hear.
After a few quiet seconds it was Mindy who spoke up. “What is happening to her, Dad? Is she sick or what?” She glanced over at her sister. “What is it?”
“Your mother is sick,” Aaron nodded. “The last few weeks we’ve visited with a couple doctors. She’s had quite a few tests and exams, trying to find out what's wrong. As you’ve probably guessed by now the problem is apparently Alzheimer’s or something like that.”
He was having trouble looking them in the eye. In fact his disclosure seemed easier with his eyes closed. “Whatever it is, it’s still in a fairly early stage. But she won’t be getting better. They can’t tell us how fast it will happen, but they’re sure she’ll only be getting worse.”
'Only be getting worse.' His frightening proclamation was enough to create a momentary pause in their dialogue. Down the hall the girls’ mother lay sleeping peacefully, while they were gathered to discuss the painful truth of her future.
“There’s nothing they can do?” Carol finally asked, already on the verge of tears she could not hold back.
“Probably not. It’s mainly a matter of seeing that she’s comfortable. That she doesn’t get stressed or upset, or hurt herself.”
“She’ll be able to stay here at home. Won’t she?”
“She will for now. For how long depends on how fast her condition changes.”
“So what are you going to do?” Mindy was reading the undisguised concern in her father’s eyes. “How can we help?”
For the first time the hint of a smile crossed Aaron's lips and the hard lines around his eyes relaxed a bit.
“Thank you for asking, Sweetheart. The thing is, the doctor told me that I can’t do this alone. He made a big deal of that. I didn’t want to believe him, but I’m sure he’s right.”
“So, how can we help?” Mindy repeated.
“There are two main things. The first one sounds selfish. I know that. But Dr. Flescher says I need to have a break once in a while. To relax and unwind a bit. I’m sure some of the ladies at the church will be willing to stay with Mom. But I’m hoping one of you can do that sometimes. I know she would like that better.”
“Dad, you know we can,” Carol offered. “We can both do that. You just need to let us know when.”
“It’s not that easy, honey. You two have lots of things going on in your own lives.”
Aaron nodded toward Don and Hal. “Your families need you to be there for them. I just wanted you to know what the doctor said.” He shifted in his chair and for a moment looked like he might be done.
“What about the second thing?” Hal asked. “You said there were two.”
Aaron got to his feet....crossing the room to the front window, staring out into the street. In all his years he had never faced such a moment. On his own he would have left the subject for later, for another day. But this was not about him. It was Leona who needed, and deserved, the best he could do. He had promised her that much on their wedding day.
Finally he turned back to face the wondering couples. “It’s about money. About the cost of the care your mother may need. If it gets to that point that will probably mean something for you two.”
“You know we’ll do what we can,” Carol said. “We don’t want you worrying about money. We can afford to help out.”
Aaron was grinning at that. “Before you get the wrong idea, let me explain. I don’t need your money. I can manage just fine as long as Mom is here at home. And I hope that’s for a long time. But if there comes a time when she has to go to a care facility that will get pretty spendy.”
“Thousands a month.” He watched Mindy’s mouth drop. “Our health insurance doesn’t cover that. Social Security doesn’t either. Medicaid can help, but only after we’ve used up most of our retirement account.
"So if that time comes what will probably happen is this....I’ll sell the house and use the money to pay for Mom’s care. If she’s not here with me I won’t need more than a small apartment. I’ll have enough for that, and selling the house will cover her care.”
“Are you sure?,” Mindy asked timidly. The girls had never been in that uncomfortable space before, discussing their parents’ finances. Was their father willing to be completely honest with them? “We could help out, you know.”
“In a way you would be. That’s the downside of having to do that. You see, your mother and I have always planned on leaving the house to you two. It’s the one thing we have to pass on. It was supposed to be your inheritance.”
His voice had turned to a shaky whisper as he looked from one daughter to the other. “I’m not sure we’ll be able to do that now.”
“Dad, you mustn’t worry about that. If it ever comes to that, the money has to be for Mom," Carol insisted. Standing, she walked across the room to wrap an arm around her father’s shoulder. “You wouldn’t be taking anything from us. It’s yours. And it should be for Mom.”
“Let’s hope we don’t have to worry about that for a long while.”
A moment later Mindy joined them at the window with a suggestion of her own. “The doctor says you need a break. Why not do that this afternoon, while we’re here? You could get away for a while. Go to a movie or something. We can watch Mom.”
“That would be nice,” Aaron nodded. “I’m sure I could find something to do for a couple hours.”
In fact a possibility was taking shape as he spoke. “I just might give Johnny a call.”
Minutes later he walked through the dining room to the quiet of the kitchen. There he took out his cell phone and punched in Johnny Blanton’s number.
Surprisingly, Johnny answered after a single ring. “What the hell are you doing home on such a nice day?,” Aaron asked with the grumpy gruffness he reserved for his best friend.
“Just watching an old Bogart movie,” Johnny replied. “Though it’s more static and snow than picture. I’m too damn broke to go anywhere. The Social Security check won’t be in the bank until the middle of the week.”
“Mind if I come by? I’ve got some time on my hands. Thought I’d catch up on your latest lies.”
“I’ll be right here. You know the price of admission.”
Half an hour later Aaron climbed the stairs to the second-floor landing of the Senior Housing apartments. Halfway down the dimly lit hallway he stopped to knock on the door. When it opened he thrust a six pack of Coors into Johnny Blanton’s hands.
“Hello there. Here’s my ticket.”
“Always good to see you. Even better to see your ticket. Come on in.”
Johnny paused to push the unruly pile of newspapers off the sofa. “I probably told you before, Mrs. Perkins gives me her day-old papers. They keep me up to date on the news. At least I’ll know if we go to war....a day after the fact. Besides, it keeps me current on the funny papers.”
Twisting the cap off a beer he handed it to Aaron. “So what brings you around today.”
“Just needed to get out of the house for a while. The girls are with Leona, so I thought I’d stop by.”
Aaron had come knowing that he would be sharing his news of Leona’s situation with Johnny. Other than the girls, who else could he talk to about things like that? But how to introduce such a depressing dilemma?
“I’ve been kind of cooped up lately. That’s why you haven’t seen much of me. Haven’t had a chance to get away. Been busy looking after Leona.”
It took a moment for Johnny to pick up on his friend’s not-so-subtle hint. “What do you mean, ‘looking after her.’ Hell, for as long as I can remember she’s been ‘looking after’ you.”
“You’re right about that,” Aaron nodded. There was no humor in his reply. “But things have changed.”
By then Johnny was leaning forward in his wooden rocker. “Okay, Peck. Let’s have it. What the hell is this about? I can tell it's more than a sociable beer call.”
“It’s about Leona....and her memory. The doctors say it’s probably Alzheimer’s. Anyway, someone has to be with her all the time. ”
For the next fifteen minutes, and another round of beers, Aaron did his best to explain away the anxiety that had grown unabated for weeks. As they visited Johnny probed for more details, determined to understand his friend’s plight. As always his questions were blunt and often socially incorrect, but filled with caring.
Finally Johnny looked over to his friend. “Damn, this is altogether terrible.”
Then came the silence, as each of them sipped his beer and drifted off into his own mind world. It had been that way for nearly sixty years. Even in the most sociable of times, when there was nothing more to say they said nothing.
“Tell you what,” Johnny finally offered. “I need to get over and see her. Do you suppose she’ll remember me?”
“I think she probably will. She still knows the girls. She’s known you for fifty-some years. I suppose she’s got ‘Johnny Blanton’ imprinted somewhere in her brain.”
“I want to see her while she’s still at home,” Johnny explained. “I hope you won’t take it personally if I don’t come visiting at a nursing home, if it comes to that. Those places are against my religion.”