The rigors of the Christmas season appeared to have been the turning point. Alberta visibly declined in the weeks following, at times not wanting to get out of bed. She still spoke with clear articulation, but the rest of her body seemed to be in revolt. Everyone around her understood that late-stage dementia was having its way with her already frail condition. It seemed clear to Jenny that her mother understood her state and was doing her best to manage it. They could still enjoy lengthy talks, but, inevitably, Alberta would lose her train of thought or bring up another subject totally unrelated to the discussion.
It was a welcome benefit that England’s winter, this year, was unseasonably warm, permitting Alberta to sit out in her garden, sometimes for hours. Her eyes darted whenever she heard a rare bird call, and she spent many of the sunny afternoons seated near her stones. She talked quietly to herself, or to someone imaginary, or she hummed tunes.
The biggest change was the need to secure a personal care assistant who could take on the heaviest responsibilities during the day – checking for bedsores, cleaning the adult diapers Alberta was required to wear, moving her into her wheelchair, and ensuring that she didn’t wander off unsupervised. It offered the added benefit of allowing Robin and his sister to get out during the day and take care of their own tasks.
Occasionally, they visited Finsbury to discuss their mother’s case, without her being around to hear. Elizabeth would bring in other professionals to bring them up to date on the latest research or some of the lessons learned in recent years.
One of these “advisors” was Malcom Guest, a specialist in diseases that have to do with the brain. “Almost inevitably, patients at your mother’s stage suffer significantly from delusions, anxiety, or agitation. It’s a stage that lasts between two and three years. But you’re saying that your mother shows little of these signs?” he asked.
“She is delusional, at times, but the only anxiety she shows is if she can’t get out to her favourite part of her garden.”
“Most unusual,” Guest replied. “Usually patients, at this stage, get downright ornery on a regular basis, even violent when forced to do what they do not wish.”
“That’s not Mom – at least, at this stage,” Robin observed. “She made a rather profound observation to us last autumn that I think serves as the kind of ‘code’ she operates by. ‘Imagine what a blessing Alzheimer’s might be to poor souls who have been miserable all their lives and now, near their end, they might actually be happy for the first time and can’t remember the difficult years. For me, I have been happy my entire life and it would be a shame to lose such a state of bliss by becoming difficult.’ It was quite moving, at the time, and I think she still tries to stick by it.”
“It is profound, as you say,” Guest said.
“And what about you, Jennifer? How are you holding up?”
Caught by surprise at the question, she took a moment to collect her thoughts before saying, “To be truthful, I was expecting the worst, and I was trying to prepare for it – reading literature, watching documentaries on television, or gaining counsel from you, Elizabeth – you’ve been wonderful. I braced myself to realize that when she struck at us – at me – that it wasn’t really her but a kind of blind reaction to constraints.”
“That’s actually an accurate way of stating it,” Guest added. “Taking things personally can be the hardest thing for caregivers.”
“I was fully prepared to accept that the anger, accidents, and uncomfortable moments were only shells that obscured the real person beneath, but such dysfunctions are rarely seen in Mom. She remains highly intelligent and compliant. And she’s teaching me that her respectful gentleness is a form of language that we can all understand – anyone can see it. And it permits me to learn more about myself in these moments, and months, because I’m not growing angry or frustrated all the time.”
There was silence for a time, as Elizabeth poured a fresh round of coffee for the four of them.
“And you, Robin? It’s been hard on you, I’m sure.”
“Yes and no,” he responded. “But it has taught me to be somewhat more cheeky about how she should be handled.”
“This will be an explanation I’d like to hear,” Dr. Guest said, with a smile.
“Well, Mom, through her wonderful character, has taught me that the most meaningful treatment is about caring more than others think might be prudent. It’s also about risking more than many believe is normally safe, accompanying her where her mind journeys, and, ultimately, expecting more than the professionals told us was possible.” He looked at Elizabeth and her colleague, and smiled a little ashamedly. “I’m sorry. I don’t mean to diminish all the wonderful counsel you and that wonderful research has given us. It’s just that Mom chose a different path, and, in so doing, she taught us a new way of looking at things. She isn’t hidden anywhere; she is still present in all that has been happening.”
“Remarkable,” Guest said, curiosity written across his face. “It is something worthy of research; few of our patients respond in such a manner.”
“Please don’t get me – us – wrong, Dr. Guest,” Robin responded. “She is different in personality, but not in any way that affects her actions – her reactions.” She gets frustrated at forgetting things, gets sad more than usual, and is, at times, weepy for reasons we can’t fathom. Those things we can handle, and it has kept our relationship with her as something special.”
Malcom Guest stood to leave and shook both their hands. “Part of what makes your mother’s case so intriguing is that you two describe it so well, almost in poetic fashion. It all translates into an exceptional recounting of the end of life, and of Alzheimer’s, especially. If you don’t mind, I would like to keep in touch with you to monitor this further? It adds an important component to our research.”
“Thank you, both of you,” Elizabeth said, once Guest was gone. “It’s strange, but in all my concentration on your mother, I believe I have overlooked just how special you two are. I’ve always known that – known you all your lives and even delivered you – but, in times of pressure, some characters are more resolute and observant. You two are wonderful, and I’m sure that’s part of the reason Alberta is holding her own.”
All three were contemplative, realizing these revelations might not have transpired had Alberta been present among them.
“I suppose one of the great gifts in all of this is that we have been able to show our love to Mom in ways we never would have because we were all just so busy. We hold her hands or kiss her and we know she senses it, even returning the kisses. All of that is love without words, but it sustains us and helps us know she hasn’t forgotten us yet.”
Robin’s insights only affirmed for all of them that they were doing the best they could in a difficult situation.
“We are all fortunate,” Elizabeth chimed in. “Most caregivers – physicians, too – have to get used to losing a loved one in stages. Sometimes they are gone early, but your mother has somehow been able to stay connected with us. It might be that we are fortunate, but it is more likely that she is disciplining herself to stay in touch as long as we journey wherever her mind takes her. You two have taught me that.”
Jennifer felt her emotions surge suddenly to the surface. “The most frustrating part of all this is that there can be no good outcome – she’ll pass from us. There is still no cure.”
“That’s true, but I’m intrigued that you two haven’t asked the one question everybody always asks in this situation: Will you, also, develop Alzheimer’s later in your lives?”
“I’m sure we’ll get to that,” Robin said, “but right now, it’s all about Mom.”
“But now that it’s out, what are the chances of us contracting it?” asked Jenny.
Elizabeth reached into a desk drawer and handed them each a test permission form. “If you both sign these, we can get you in for some blood work and other tests. Sometimes that helps to detect whether someone is vulnerable. The gene mutation that causes the disease is sometimes detectible in family members at an earlier age.”
Jenny rose and moved to Elizabeth. You have been such a good friend and physician to Mom, and surely you will be the same to us. Thank you for all you have done and are doing, Elizabeth. Right now, our full dedication is directed to Mom. We’ll get that out of the way first, and then get these tests done.”
The physician watched them walk out of her office, fully aware of how much she saw of Alberta and Sandy in both of them. She smiled in thinking that they were like Homer in TheOdyssey– observing, fighting, recording, teaching, learning. The depth to which they loved their mother made it inevitable that, as she was in them, they were quietly working their way deeper into Alberta’s heart and mind and strengthening her for this final stage. That thought filled Elizabeth with pride and dread at the same time.