Grief in Process

A casual observer might not yet notice my husband’s dementia, at least most of the time. He seems alert and conversational. As always, he is a punster, full of the most groan-worthy dad jokes. Friends comment that he certainly hasn’t lost his sense of humor. I find that sometimes he uses humor to cover a lack of understanding. Not everyone would see that.

Recently, our five-year-old grandson told his mother, “I’m funny, and you’re funnier, but Papa is the funniest.” It is good that he can still laugh and make others laugh as well, even if it is humor that appeals mostly to kindergarteners.

However, sometimes, his jokes now are incomprehensible. We were at a favorite pizza place. My daughter and I were going to share a margharita pizza. Miklos smiled at the server and said, I knew a Margharita once and she lied to me.” The server didn’t know quite what to do or say to that. He turned to us for validation, but not even the five-year-old could figure out what the joke was. It was simply bizarre. We should expect more bizarre jokes in the future.

My daughter said to me later in the evening, when she was looking over my last post about the bad teeth. “You’re worried about him starting to look foolish. He looked foolish at the restaurant.” He not only looked foolish, he was foolish. I will need to get over being embarrassed by it. He will continue to say more and more bizarre things. But I still want people to be able to see the brilliant person he has been, not just a foolish old man.

Is there anyway to communicate to friends, let alone casual acquaintances or brief, impersonal contacts like a server or check out person at the grocery store, that the person in front of them is more than a doddering old man. He is a scholar, a philosopher, a thinker? I don’t think there is. And I think this is my problem. Miklos seems unfazed by how others respond to him.

Even though the medical professionals urge me to provide Miklos with a nutritious diet, his daughters urge me to leave him alone. And as I said in the previous post, I have no intention of constantly nagging him. But there are consequences to a diet so heavy in sugar. Although Miklos has always had sound oral hygiene, his high sugar intake has left him with rotting teeth.

He has always had a sweet tooth, but it was exacerbated by the pandemic. The shortages on the grocery shelves reminded him too much of the shortages he experienced as a child during WW in Budapest — shortages that left him severely malnourished, if not actually starving. He had no treats of any kind, no cookies, candy, cakes, or even jam for years. It seems as if he is desperate to make up for his deprivation as a child.

The rather devastating news we received from his dentist was that he has four teeth that are completely beyond any repair, and four others that would cost more than $1000 each to fix. One of the options Dr. Moore offered was what he calls the life-boat approach. It means do nothing until a tooth breaks or causes unbearable pain. It was the option we took. One by one, Miklos will lose most of his teeth. Dr. Moore also says that bridges would not be a good option, because as with any prosthetic device, they require time and a bit of rewiring in the brain to be used effectively. It is unlikely that he would have the memory/learning capability to learn the new skill. As a result, he will slowly become toothless.

Already, he has a broken tooth at the front of his mouth that leaves a gap between teeth. I worry that as he loses more teeth, he will look more and more like a doddering old fool or the village idiot. What would that do to his sense of dignity and self-esteem? How would other people react to him?

Then I reign myself in and ask whether I am really grieving for how he will feel about himself, or am I more concerned with embarrassment that his appearance might cause me? I am sure it is a mix of the two.

Being limited to soft food, like pap, can be a socially isolating condition. His near deafness already creates barriers enough to social interaction. Just as dentures require some re-learning, so does a cochlear implant. After a cochlear implant, the recipient has months of therapy, learning new routes in the brain and new ways to hear. If dentures are beyond him, imagine how much worse learning to hear again would be. I am quite sure that he would never put in the work. He might not even be capable of doing it.

I can only hope that the process of losing his teeth is a vey slow one, and that I find the grace to accept the changes as they occur. I hope that his hearing doesn’t deteriorate to the degree that he can’t communicate at all.

Miklos is now sleeping fourteen, fifteen hours a day. Sometimes even more. Is this just a sign of his system beginning to shut down or is it a form of depression that I could help lift him from? I have made an appointment with our primary care physician to check for possible other causes, like anemia. Until the last month or two, he never took a nap in bed, only in his recliner, fully dressed for the day. On most days now, he goes back to bed after breakfast, putting on pajamas if he had already dressed earlier. Then he stays in his pajamas until after noon. He may then take another nap after lunch

He recently joked that when you are young, you want to eat all the time and never sleep. But when you are old, you want to sleep all the time and never eat. Eating has also become a problem. Last year, Miklos lost ten pounds and he continues to be on a losing pattern.

Both Dr. Freitag and Dr. Hanft have told me that Miklos will benefit from a nutritious diet, good exercise, and social connections. I set good meals on the table. He nibbles at them, and then eats buttered toast we jam, dark chocolate, pita chips, M & Ms and pretzels, alternating between sweet and salty all evening while he watches T. V. I ask him to walk with me. Sometimes he does, sometimes he doesn’t.

He is eighty-six years old, and in reasonably good physical health. He is not going to change his habits of long-standing now. I could spend hours a day prodding, urging, nudging, and in general just nagging. That is not how I want to spend my last years with my husband. I want to find what joy we can. I want to share whatever adventures we still can. I want to have the best possible memories of our life together.

The one of those three that I can actually do something about is social connection. I make sure to have friends coming to our home for dinner once or twice a month. I arrange casual social connections, such as we have at the grocery store or going out to dinner. He also usually still goes to a discussion group that he started over twenty years ago, with several of the original members still participating. When he says he doesn’t feel like going, I do nag a little bit then. The group stimulates the best part of his brain. And the group members still benefit from his wisdom. He may have difficulty remembering what day it is, at least for now, he can share profound insights about the nature of God and the universe.

I have felt a little bit anxious about my own odds of having Alzheimer’s disease. I have an abundance of risk factors: a family history of dementia, being a care-giver for a person with dementia, and having a hearing loss. Those are all contributing factors for Alzheimer’s, and that doesn’t bode well for me.

My hopes were lifted when I read an article entitled “The Secrets of ‘Cognitive Super-Agers,’” by Jane E. Brody, Personal Health columnist for the New York Times. Here’s the best part: “new data from the Netherlands indicate that those who achieve that milestone (age 100) with their mental facilities intact are likely to remain so for their remaining years, even if their brains are riddled with the plaques and tangles that are the hallmark of Alzheimer’s disease.” (italics, hers)

Some people have resistance to Alzheimer’s, which, according to Dr. Thomas T. Peris, may be the result of genetics, lifestyle, or “protective biological mechanisms that slow brain aging and prevent clinical illness.”

Others have resilience. Those people may have normal cognitive abilities “even though their brains may have damage typical of Alzheimer’s disease.” According the to Dutch study, people with cognitive resilience are “able to accumulate higher levels of brain damage before clinical symptoms appear.”

According to Yaakov Stern, director of cognitive neuroscience at Columbia University College of Physicians and Surgeons, resilient individuals have “what researchers call a cognitive reserve that enables them to cope better with pathological brain changes.” Super-agers share in common higher and higher quality of education. They choose careers that deal with complex facts and data, consume a Mediterranean-style diet, engage in leisure activities, socialize with other people , and exercise regularly.

It may be too late for me to start a career other than teaching college English, which may not count as complex. Even so, there are things that I can do to mitigate my risk factors. Wearing hearing-aids mitigates the effects of hearing loss, keeping me more grounded in and aware of my environment. I have challenged myself by taking up painting on a more regular basis. It assists my eye-sight, making me look at things more carefully. I have started regular practice of piano, something that I hadn’t done for at least 30 years. I walk most mornings and evenings. I also have an active social life and strong friendships.

I know the toll care-giving can take on the care-giver. I have a friend who has only recently placed her husband into a dementia care facility. She has ruined her own health in the process of caring for him, and is only now beginning to give herself the care that she needs. I hope that I am doing enough for my health to continue to be strong and well while I continue to take care of my husband. We are not nearly to the point of considering institutionalized care. We may never reach that stage. If we do, I want to be strong enough to continue to live well.

There is an old joke that at least when you have Alzheimer’s disease, you don’t know it. I have heard of a few people for whom that is true, but I haven’t ever met them. I have already witnessed it first hand before with my Aunt Madge. She once said that she felt as though a dark curtain was falling across her brain. I am already witnessing it again with Miklos. I sometimes hear him saying, under his breath, “I am really losing it.” Even more worrying is when I hear him saying, “I should be dead,” or “I don’t deserve to live.”

Fortunately, he is still in very early stages. He usually looks forward to coming events with great anticipation. He enjoys social contacts, and probably many of the people he interacts with have no idea what his condition is. That will change.

Again, I am reminded of my Aunt Madge. In the last few years of her life, after my mother had died and she lost her mooring to reality, she would still have rare moments of clarity. Then she would look at me through clear, intelligent eyes and ask, “Why can’t I just die?” Then her gaze would grow cloudy again and she would fade back into her silent self and emptying mind. I had no answer. Her body was too strong to give up. I have no answer for Miklos.

Even before his neuropsych assessment, I already knew that, with our current science, dementia is progressive and most types of dementia are irreversible. I knew I needed to prepare myself for many challenges ahead. It was still early days for Miklos, even though he would sometimes forget our zip code or even the name of the street we have lived on for almost twenty years. He was still cogent and funny. It was early days for me, as I began to imagine what my life would look like in five years.

We made an appointment with our primary care physician, Rachelle Hanft, for a preliminary assessment. I had already started to accompany Miklos to all his medical appointments, because his hearing is so very bad, that even with the strongest hearing aids available, he strains to hear. He can understand my voice better than others, so I go as his interpreter. For this appointment, I also wanted to be sure to hear everything Dr. Hanft said.

It was in the late summer of 2020, the first year of the great pandemic. He could answer many of the twenty or so questions, but he stumbled on many others. He said the year was 2002. When I told him later what he had said, he assured my that he knew the year and that it had been a slip of the tongue. The short assessment did show decline from a baseline test he had taken some years ago. Dr. Hanft gave us a referral to a neuropsychologist, Dr. Freitag.

Dr. Freitag did a thorough assessment. He also had a copy of a brain scan that had been performed some years earlier. Even at that earlier time, the brain scan already showed dead and dying cells in the area of the brain consistent with Alzheimer’s disease.

The assessment revealed many areas of cognitive deficit, and together with the brain scan, it was conclusive that Miklos was suffering from Alzheimer’s disease. Dr. Freitag offered us some encouragement. Several factors in Miklos’ case were predictive of a slow progression of the disease. His relatively advanced age at the onset of symptoms, his high level of education, his good nutrition, and his exercise habits all were very good signs.

Dr. Freitag recommended Aricept, a drug that slows the progression for many patients. Fortunately, Miklos has shown none of the negative side effects that some have. Is it working? How would we ever know that it wouldn’t have been the same without the drug? It’s not hurting and the co-pay is affordable. We might as well.

Dr. Freitag also recommended some resources: The Alzheimer’s Association, an elder law attorney, and the book The 36 Hour Day, by Nancy L. Mace and Peter V. Rabins.

I promptly joined the Alzheimer’s Association and ordered three copies of The 36 Hour Day so that each of our daughters could have one. That was overkill. My daughters want to be supportive but had no time for and little interest in reading the book.

As I read, I started praying that Dr. Freitag was correct in his disease would progress slowly and that he might die from old age before he reached the highest stages of the disease. I really don’t know whether I would be able to handle spoon feeding my husband or diapering him.

I remember a scene in a restaurant years earlier when Miklos (my husband) had seen an older man with a walker struggling to get to the restroom. He said that he would rather die than have his quality of life so diminished. My daughter, who was with us at the time, pointed out that the man seemed to have greatly enjoyed his meal and conversations with his dinner companions. I am not sure Miklos was convinced that life could be worthwhile if he was at all disabled. He has always had general fear of aging. That night, he commented on this man’s limited mobility as something he would not tolerate. Nevertheless, his greatest fear has always been of losing his mind.

The incident in the restaurant, and his insistence that he would rather be dead, led me to tease him for several years. He had a requirement to wear prescription glasses added to his driver’s license. I said, “That’s a disability. Shall I shoot you now?” He added hearing aids. Again, I asked if I should shoot him now. He knew I was being facetious because I have always held conservative views about suicide.

When we first made advanced directives for health care, Miklos said he wanted our daughters to be the ones to make decisions for him because he feared that I would want to keep him alive after he was ready to die. Although I am not an advocate for suicide, I see no reason for prolonging death. Unfortunately all too many people do just that. I hate the fact the majority of health care dollars spent in the US go for people in the last year of their lives, often on useless procedures.

We are entitled to die with as much dignity as we can maintain. Miklos is already 86 and he doesn’t have a long life in front of him, in any case. There is no reason to apply heroic, extraordinary interventions that would only prolong suffering. The terrible problem with assisted suicide is that by the time a person with dementia has reached the state where suicide might be the best option, they are no longer of sound mind to make the decision. I have his power of attorney for health care, and in the advance directive, we have listed palliative care as the only option in each scenario: do not resuscitate, do not provide artificial feeding, etc.

It still creates a cognitive conflict for me and adds to my grief. Do I really want to go so far as to withhold a flu shot or the next Covid booster? When do I say no to the next cystoscopy? Is it better to die of bladder cancer than Alzheimer’s disease? There is no clear line between routine health maintenance and extraordinary measures.

“But who’s Chico?” he asked with a blank look on his face. That was the first really telling sign. Of course, he was forgetting things, but we all do that. However, there is a difference between having too many things on your mind and having dementia or Alzheimer’s disease. But here was a clear sign. We had watched Marx brothers films for years. At first, we would quote to one another in various situations, “Chico would say, ‘That’s a no good.’” Then we shortened it to, “You know what Chico would say.” It had been one of the private codes we had developed over decades of marriage, a bonding phrase. So when he couldn’t remember who Chico was, I knew it was not just average, busy-minded forgetfulness. It was time for a diagnosis and to see what kind of help we could get. For me, that was also the beginning of grief.

I would be losing my partner. He would become, bit by bit, a stranger to me. Not for many years, I hoped. I grieved for my loss. But I also grieved for him. He was always more of a thinker than a doer. A philosopher, a theologian, a talker. Dementia had always been his greatest fear. As English was his fourth language, he didn’t always immediately understand every conversation. He sometimes needed to have something rephrased to clarify. Nevertheless, he was a deep and profound thinker.

On the ALZconnected forum for spouses of people with dementia, I read a post about seeking anticipatory grief counseling. Initially, that sounded like an excellent thing to pursue. In a book about grief I had picked up from a table of free books, I found two titles on anticipatory grief in the appendix. Eagerly, I checked them out from the library. I discovered that both were memoirs written by fairly young people dying of cancer. They were moving, but irrelevant to my needs. I needed something written from the perspective of the surviving spouse. I decided to write my own.

As I began writing, I realized that anticipatory grief is a misnomer. I am not anticipating. I am already grieving. I grieve a lifetime of regrets for things I could have done better. I grieve seeing bits of my husband dying, day by day, and I grieve each successive loss. So here is my journal of daily loss and grief, not at the beginning, but a discrete moment that we shall call the beginning. Grief in process.