My Alzheimer's Journey

Part 45 - "Living With Alzheimer's" - an essay by Darren Keith

Darren Keith is a screenwriter, actor, musician, and producer (among other things). After losing his father to Alzheimer’s in 2022, he wrote an essay titled “Living With Alzheimer’s” The essay is probably the best overall description of Alzheimer’s I have ever read. Using his father as the subject, Darren talks about the behavioral changes Alzheimer’s causes and the impact AD has on family and caregivers. It is a great essay.

With Darren’s permission, I am republishing “Living With Alzheimer’s”.

INTRODUCTION

As close as we were throughout our lives, my father has no idea who I am now.

I am not suggesting that my father and I have grown apart or that he doesn’t “get” me. I literally mean that my father could not pick his own son out of a lineup. For a man whose family was, without exaggeration, the only thing that mattered to him, he no longer recognizes any of us. It is absolutely gut-wrenching. And this is what Alzheimer’s disease does. My father cannot do anything on his own, from decision-making to dressing himself, and he has been under my mother’s full-time care for years. As of right now, there is no cure for Alzheimer’s; the best they can do is slow the progression of the disease. Researchers are hard at work trying to change that.

In writing this, I aim to raise awareness, provide insight and resources, and offer a glimpse into how Alzheimer’s can affect not only those afflicted with the disease, but — almost more importantly — their loved ones, because it is they who bear the deepest burden and suffering. I myself am in the creative arts and not a doctor or professional in any related field. I am just someone whose life was affected by Alzheimer’s and wants to tell their story to help others facing the same journey.

Everyone’s situation is different, of course, and this is solely my personal perspective and thoughts from the experiences with my father, family, and peripherally through others I have observed in similar situations. I have conducted no research, read next to no literature, and will not be citing statistics or talking about the science behind the disease, other than to tell the uninitiated that Alzheimer’s is a degenerative brain disease that destroys memory and other cognitive brain functions. It is the most common form of dementia with more than 6 million Americans over 65 living with the disease, a number that is expected to more than double by 2050.

Living with Alzheimer’s is an incredibly harsh reality and what happens to someone with the disease, as well as their loved ones, is profoundly heartbreaking. Above all, I hope this helps anyone that has been affected by it.

THE DISEASE UPON THE AFFLICTED

All diseases are horrible, and Alzheimer’s is particularly evil and insidious, destroying cognitive functions such as attention, language, problem-solving, and most tragically, memory. Consequently, those with the disease are not only robbed of their present and future, but of their past as well.

The long and currently unstoppable procession of Alzheimer’s may begin with a loved one occasionally misplacing their keys or repeating things in conversation, and end up years later with them constantly confused and unable to communicate, recognize those closest to them, or perform the most common of daily rituals like bathing, dressing, or eating. In the later stages of the disease, a loved one with Alzheimer’s (LOWA) will require around-the-clock care due to the cumulative loss of their mental and physical faculties.

Behavioral changes due to Alzheimer’s may include frequent wandering, incessant repetition, mistrust, aggression, and even violence. Less well known is the wide range of physical manifestations, such as tics and incontinence.

As cruel as many aspects of the disease are, the most heartbreaking has to be the loss of memory and the individual’s identity or “self”. As someone with Alzheimer’s transitions through the stages of the disease, the individual’s cognitive functions and identity are corrupted, then totally erased. To extend the computer metaphor, for someone in the later stages of the disease, Alzheimer’s has essentially performed a “hard reset” on the LOWA…their hardware is the same and remains profoundly familiar, but the software has been deleted, thus gone forever and completely unretrievable. The psychological impact on those witnessing the LOWA’s “self” detach from the “shell” is profoundly traumatic, and understandably so.

I assume that losing someone in a swifter manner would be no less tragic, but at least you would be left with the gift of having the loved one’s “self” — their unique mental, emotional, and spiritual fingerprint — infinitely more well-preserved, as opposed to how Alzheimer’s takes a blow torch to that fingerprint and disfigures it to the point that it’s completely unrecognizable.

The life that one lives in the advanced stages of Alzheimer’s is no life at all, and I say that with both profound empathy and intimate first-hand knowledge. In the end, a LOWA can succumb to any number of complications associated with the disease or, given the age group most commonly affected, through natural causes.

THE PRE-DIAGNOSIS PERIOD: RED FLAGS AND WARNING SIGNS

One of the most critical and potentially dangerous times is before a diagnosis has been made, when someone can be experiencing early effects of Alzheimer’s, yet not display signs pronounced enough to reveal the disease to others. It is during this pre-diagnosis period that they would likely be unsupervised and vulnerable to a multitude of harmful scenarios.

It may be hard to believe that someone can have Alzheimer’s for years before it’s detected or diagnosed, but unless you’re specifically looking for the signs and early symptoms of the disease, you may not see the disease. This was particularly true in our case…I wasn’t even sure what Alzheimer’s was before my father’s diagnosis, so how could I be looking for it? Unless there was a family history or prior awareness, one would likely not be. Further complicating matters, many red flags that are visible by family and friends may often be attributed to other seemingly reasonable explanations, such as advancing age and even poor sleeping habits.

Here is a list of important warning signs, according to the Alzheimer’s Association (www.ALZ.org):

1. Memory Loss That Disrupts Daily Life

2. Challenges in Planning or Solving Problems

3. Difficulty Completing Familiar Tasks

4. Confusion with Time or Place

5. Trouble Understanding Visual Images and Spatial Relationships

6. New Problems with Words in Speaking or Writing

7. Misplacing Things and Losing the Ability to Retrace Steps

8. Decreased or Poor Judgment

9. Withdrawal from Work or Social Activities

10. Changes in Mood or Personality

Being unfamiliar with Alzheimer’s, we missed countless red flags, like my father forgetting my birthday and his missing steps of a cute, four-part routine he had done countless times for the kids over the years. Eventually, we witnessed cognitive failure so obvious that we took him for an evaluation, after which they informed us that he had fairly advanced Alzheimer’s. I’ll never forget my mother’s absolute shock at seeing how poorly my father performed on those cognitive tests, which contained some extremely basic questions, such as identifying the year and recognizing a pen. My father could do neither. Even being with him day in and day out, she still could not see the severity of his condition. It’s just incredible. That is not a criticism of my mother at all, but illustrates how deceptive this disease can be.

I cannot stress enough how crucial the earlier stages are and why they require special attention and awareness. Ideally, you would recognize any red flags, consult a physician, and have your loved one undergo a cognitive evaluation. At least then, you may have a chance for intervention at the earliest possible stage.

POTENTIAL DANGERS AND DAMAGE

While not a comprehensive list, here are some of the potentially damaging and even deadly ways that Alzheimer’s can manifest, in the hopes of avoiding them:

1) Physical Harm.

Besides the physical harm someone with impaired faculties can do to themselves, the harm they can do to others is even more terrifying. Dangerous scenarios include supervising a child, operating a vehicle, and using a stove. Prior to his diagnosis, my father was driving my brother and me and, as we approached a cyclist, I noticed him begin to dangerously veer towards the biker. I immediately yelled at my father and grabbed the steering wheel, thankfully avoiding the man. My father was completely oblivious and I’m certain he would have hit that cyclist if I hadn’t been there. Of course, had we known of his Alzheimer’s, he would not have been allowed to drive.

It hurts to say this, but once he was diagnosed, we wouldn’t even leave my child alone with him…his own grandchild. We always kept a close and watchful eye when they were together because of the potential threat of harm or accident. Incredibly sad.

2) Financial Impact.

A new study has found that problems managing finances and paying bills can become evident years before a person is diagnosed with dementia. This has yet to make the Alzheimer’s Association’s list of warning signs, but should be another red flag. My father was self-employed and I’m sure the disease had a significant adverse effect on both his business and my parents’ financial well-being. Had we recognized the depths of his cognitive impairment, we would have never allowed him to continue working or managing any financial matters. Quite tragically, it’s possible that a family can end up in financial ruins before realizing that the loved one in charge of their fiscal affairs should not have been performing that task.

3) Relationships.

Alzheimer’s can manifest emotionally and behaviorally in many negative ways that can strain or damage even the closest of relationships with a LOWA. This can be particularly damaging pre-diagnosis, when loved ones are unaware that a disease is responsible for any uncharacteristic and hurtful behaviors. Once diagnosed, loved ones can be more understanding and forgiving, but in the absence of that knowledge, irreparable damage can be done, and this very thing happened with my father and me.

It wasn’t until my father was in the late stages of the disease when I learned that you can have Alzheimer’s for years before showing it. This resulted in a seismic shift of perspective for me and led to reexamining painful episodes he and I had prior to his diagnosis. It was a profound process which included not only forgiving my father for his unintentional actions, but also forgiving myself for any ill feelings I may have harbored toward him. Sadly, it was too late to reconcile with my father by then, since he was already well past the point where he could comprehend or participate in that healing. So, in my case, I’ve had to make peace with it.

BEHAVIORS

The wide spectrum of challenging Alzheimer’s behaviors may differ from person-to-person, but all significantly contribute to the mental and emotional pressure put upon those living with and caring for a LOWA.

The relentless and repetitious behaviors alone are enough to push a caregiver over the edge. My father developed an incessant urge to roam and would repeatedly walk to their door, wanting to go outside, even if he had just been outside, and would occasionally get belligerent when he couldn’t. Being stationary became difficult and he would often get up in the middle of any situation and want to leave or walk around. He also managed to wander off and get lost on multiple occasions. When found, he would have no idea where he was, or was going, but fortunately we always found him before something terrible happened. Those moments are absolutely terrifying and you constantly live with those threats looming over you. These particular behaviors are also incredibly exhausting to the caregiver and affect all areas of daily life, from running errands and travel-planning to simply sleeping.

One far less severe behavior, but taxing for my mother nonetheless, was the repeated changing of clothes. She would dress my father for the day and he would leave the room and return moments later dressed in a completely different outfit, or missing his socks and wearing three sweaters. When living with someone with Alzheimer’s, there is always something that requires one’s attention or supervision.

Another sad reality for those in the advanced stages is the inability to communicate and/or nonsensical ramblings. Surprisingly, my father was socially quite functional for a relatively long time, and if you weren’t paying attention to the conversation or aware of his diagnosis, you may not even have noticed. Many didn’t. Generally, later in the disease’s timeline, the LOWA’s loss of expression and communication becomes glaringly obvious to everyone and soul-crushing to loved ones. Given that we are social creatures, I cannot overstate the devastating impact that the loss of communication can have upon a partner or family member.

Two of the most unfortunate behaviors associated with Alzheimer’s are aggression and violent behavior. My father was a gentle giant to all who knew him, yet in the later stages had numerous episodes of both. As in my father’s case, the behavior is so uncharacteristic that it’s all the more unsettling when it does happen. Luckily, no one was ever hurt. Regardless, these situations are incredibly disturbing, even for professionals working with your LOWA, who may be trained to deal with these behaviors. Now imagine loved ones and friends experiencing that same behavior while being ill-equipped to handle such episodes.

At one family dinner, my father’s demeanor suddenly changed in a very dark and alarming way. I remember thinking how surreal it was to be looking at my own loving father in that moment as a potential physical threat and what I might be forced to do if it came to protecting anyone, especially my child, from him.

There were other episodes and some were violent, usually with unfamiliar aides, but those behaviors were not my father, they were the disease, even though they were now inextricably bound. With a LOWA who may be capable of aggression or violence, you must always be vigilant about everyone’s safety.

THE BURDEN OF CARE

The burden of care that can fall on those already suffering through the profound trauma of watching a LOWA in the throes of a crippling disease can be completely overwhelming. Consider the endless responsibilities that must be met for someone who, through the various stages of the disease, loses the ability to work, drive, cook, dress, eat, or even communicate. The demands may include assisting or performing virtually all of the LOWA’s daily needs, from dressing and feeding them to bathing and toileting. Managing the incontinence alone can be a harsh and sobering reality for anyone. Now imagine dealing with these countless responsibilities as well as the many aforementioned Alzheimer’s-associated behaviors. Every day. Around the clock. Completely overwhelming.

Under these circumstances, caregivers can understandably end up fatigued and emotionally distressed. Some may even develop resentment and anger toward their LOWA. Caregivers can also forget the cognitive realities of the situation — that the challenging behaviors are unintentional and the LOWA doesn’t even realize what they’re doing. Still, the lack of intent does not change the significant impact it has upon the caregiver.

Tragically, in extreme cases, the collective stress can lead to the emotional and/or physical abuse of a LOWA. Of course, abuse in any form is unacceptable, but one can see how these combustible elements can lead to it and why it’s so important for assistance to be sought and preventative measures taken.

The role of loved-one-turned-caregiver can be unsustainable without outside help, which may not be feasible or readily available in normal times, let alone during this COVID pandemic. My mother, who was an inspiration to everyone through her incredible display of love, devotion, strength, and fortitude in taking care of my father with essentially no help well into her late 70s, ended up not only physically suffering from the demands, but came frighteningly close to an emotional breakdown. She did her best to shoulder the burden herself but it proved to be too much, as it would have been for most of us.

Some people are reluctant to ask family members for help out of pride, embarrassment, or not wanting to burden others, but not reaching out for help that is so desperately needed can make matters infinitely worse and allow things to spiral out of control.

I cannot say this emphatically enough: the relentless and all-consuming care of someone with Alzheimer’s, especially in the advanced stages, can be devastating to the physical and emotional stability of anyone attempting to meet those demands. Outside help is often not only needed, but absolutely necessary. Anyone in this unfortunate situation should seek assistance and use any available support systems before the situation becomes dire.

Outside options may include in-home care, day care programs, emergency respite care, or placement in a long-term facility equipped to provide dementia care.

GUILT AND THE RELINQUISHING OF CARE

When relinquishing care of a loved one into the hands of others, especially a full-time facility, many wrestle with guilt and feelings of abandoning or betraying their LOWA. Please know that these emotions are completely understandable when making such difficult decisions, but they must be made, as your mental and physical welfare could be at stake.

You have to know when it’s time to let go, which is especially difficult when faced with so many existential obstacles such as situational denial, guilt, a deep inclination for “holding on” to a loved one, and fear of separation. To allow a transition into the final stage, it is essential to have both objective clarity of the situation and acceptance of it. I personally know how hard this is…once we found out how desperate my mother’s circumstances were, we had to intervene and make those difficult decisions.

In short, do what you can for your LOWA, but avoid doing anything at the expense of your own well-being.

GHOSTS AND MIND GAMES

The gradual erosion of cognitive functions such as comprehension and memory can cause much confusion, frustration, and heartbreak for those surrounding a LOWA. One day you may watch a LOWA fail to process the rules of a simple game yet correctly recall details of an earlier conversation. They may then forget how to put their gloves on, yet put on their coat without assistance. For another example, my father would occasionally perform his four-step routine correctly for the kids, before reverting back to forgetting a step again.

You will sadly get accustomed to these inconsistencies and contradictory signs of cognitive ability, which are just some of the many mind games the disease plays on the afflicted’s loved ones. They also make it more difficult to assess where a LOWA stands cognitively in the early-to-mid stages. That ambiguity disappears in the advanced stages however, given how obvious the cognitive impairment will be.

In the later stages, you may even witness the disorienting scene of a LOWA, having long forgotten a loved one, randomly say “I love you” or show a fleeting glimpse of the person they once were through an old and familiar gesture or term of affection. It seems to happen quite randomly and then it’s gone, a remnant of something already lost, like the light from a distant star we can view from Earth long after its death. I also liken these experiences to seeing ghosts…what you are briefly witnessing no longer exists in this realm. More mind games.

One of the most confounding phenomenons of Alzheimer’s, and something that has taunted me personally, is how people with extremely advanced Alzheimer’s can remember such things as song lyrics or dance movements while simultaneously being incapable of even recognizing their own precious loved ones standing before them.

How is this possible? I can only assume they are recalling the lyrics or movements out of some subconscious and deeply-embedded cognitive-muscle-memory reflex. And here it gets more bewildering to me…even if they had sung that song or performed those dance movements hundreds or thousands of times during their life, what could possibly be more deeply ingrained and inextricably etched into someone’s deepest cognitive recesses than a loved one’s face and name, which they’ve looked at and said millions of times over the course of their lifetime? It’s utterly baffling…and trying to make sense of it all is a human instinct, but ultimately an exercise in futility. In the end, I found it was healthier to just accept it.

Interestingly enough, my father still seemed to retain a very general and comforting familiarity with those of us closest to him, even though he didn’t know who we were or what our connection was. However faint or ambiguous it is, in some mystifying way he still appears to sense a connection or relationship with us nonetheless.

THE DISTRIBUTION OF PAIN. FINALITY.

While writing this piece, my father passed away. He had been living in a memory-care facility for a few months and, due to COVID restrictions, we hadn’t seen him in about a month. Despite the bleak and undeniable trajectory he was on and years spent in the severe stages of the disease, his death still came as a shock. It’s so interesting how that happens.

With a disease such as Alzheimer’s that someone can have for 5, 10, even 15 or 20 years, the distribution of pain and loss that you experience as a loved one is spread out over a very prolonged period of time. Within that time, you can develop a numbness to the pain and anguish — an overall desensitization to the entire situation. Again, these feelings are completely understandable.

Considering the countless times I had been put through the emotional ringer over the course of my father’s life with the disease, as well as experiencing that numbness and fatigue, I was surprised by how emotional I was when faced with the finality of his passing. On a rare positive note, it triggered a recall of so many memories I had forgotten and those memories reunited me with the man I knew and dearly loved before the disease took him from us. It allowed me to reclaim some of my father back from the disease, letting him live on within me, more preserved in his better days.

THE REALIZATION

This is extremely important. Profoundly important.

A few years ago, while thinking about my father’s condition, which was well into the advanced stages of the disease, I had a stark realization. My father…the man whom I had been so close to before the disease took hold, the man that had shaped and filled the hearts of my brother and me with a limitless amount of love and affection that we would in turn pass onto our children, the man who had supported us and accepted us unconditionally and who had imparted us with his sense of humor and love of food…that man had already passed away. Other than his physical shell, we would never see him again. The human being that now existed in his place, who barely recognized us, who no longer possessed the shared memories of our lives together, the man who could no longer even converse with us…was not our father, because our father was already gone.

It was a heartbreaking reality, but the realization enabled a profound moment of clarity, acceptance, and in some capacity, closure. It was a pivot of perspective. And that is not just helpful in this tragic situation, it is essential. Unfortunately, some come around to it much too late, or sadly, never at all.

It was during a long drive with my mother a few months before my father died when I first told her about the realization…that dad had already passed away and the man that we had known and loved was no longer here with us. Since he had just been placed in respite care and wounds were still tender, I didn’t press the subject and was unsure if anything I said had resonated. The night he passed, she told me that it wasn’t until our talk in the car that she could finally see the true reality of the situation. Up until then, she had been in denial and desperately clinging to the man my father was prior to the loss of his “self” to the disease. A completely natural and understandable instinct, but it’s not reality and it’s emotionally unhealthy. Considering how long my father had been in that advanced state and under her full-time care, it’s astonishing that she still hadn’t had that realization until I told her about it a few months before his passing. Another illustration of how deceptive this disease can be.

Having the realization finally allowed her to have the acceptance she so desperately needed to move forward and begin the healing process. And to be clear, it by no means suggests abandoning a loved one…it just allows you to move forward.

PARTING THOUGHTS

I did not write this for catharsis…only to help others, especially if I can spare anyone the suffering my family has endured. My heart breaks every time I see someone in this situation, so if this helps even one person, it will have been well worth it.

The day my father was diagnosed, we left the hospital with almost no guidance on how to proceed or navigate the treacherous waters into which we were thrown, nor were we made aware of the countless ways in which our lives were about to change. I consider it a great failing of the healthcare system. In that most crucial, vulnerable, and desperate of moments, we were sent home completely in the dark about what to expect, prepare for, how to care for and protect my father and those around him, and where to seek help. It was disgraceful and I never want anyone to find themselves in that same helpless position. Please see the Resources section below and seek out as much information and help as possible.

It is a horrible situation from beginning to end. If and when the time comes that your loved one arrives at those final stages of the disease, I would hope that everyone would do their best to ensure that their LOWA is as safe, comfortable, and cared for as possible. And above all…take care of yourself, just as they would have wanted you to do.

I lost a father that meant the world to me in the most tragic of manners. And if everything we’ve been through wasn’t bad enough, I now have to worry that what happened to my father will happen to me…that it will be my “self” detaching from my “shell”…that all the unquantifiable love I have for my incredible family and the precious bond and moments we have will one day be taken away and replaced by the pain, frustration, and burden of caring for me. That all of my precious past, present, and future will be claimed by this hideous disease and forever lost to the devastation it leaves in its wake. And not just myself, of course; I worry about my loved ones getting the disease as well. There are tears on this keyboard right now just thinking about it. But as we all know, these realities are an innate part of life. All we can do is continue forward, cherish what we have while we have it, be grateful for all the good in our lives, and surround ourselves with as much love, meaning, and laughter as humanly possible.

To anyone personally impacted by this horrific disease in any capacity, please know that my heart goes out to you and that you are in my thoughts.

And I am so very sorry…

HELP AND RESOURCES

The Alzheimer’s journey is overwhelming and many will have no idea where to begin. Please reach out to the countless wonderful people and organizations working in this field and consult health care professionals, social workers and advocates.

THE ALZHEIMER’S ASSOCIATION:

https://www.alz.org

THE ALZHEIMER’S FOUNDATION OF AMERICA:

https://alzfdn.org

NATIONAL INSTITUTE ON AGING: https://www.nia.nih.gov/health/alzheimers-disease-fact-sheet

- For anyone feeling desperate, overwhelmed or isolated, Alzheimer’s Support Groups offer opportunities to connect with others in similar situations. This article https://www.docpanel.com/blog/post/alzheimers-support-groups offers resources, including links to groups. Facebook also has many Alzheimer’s support groups.

- Regarding financial matters, https://www.thesimpledollar.com/financial-wellness/how-to-pay-for-a-loved-ones-memory-care-and-manage-their-finances/ is one helpful guide.

- Veterans organizations offer help to those who qualify. Federal and state-run organizations also provide different types of assistance, so exhaust the possibilities if your loved one has served.

- In situations where temporary or full-time care of a LOWA is urgently needed, look for facilities that offer Respite Care.

- Whether for respite or long-term care, placement may depend on their functional level. Those in advanced stages will most likely require Memory Care capabilities. This designation will help ensure the LOWA is prevented from wandering and/or hurting themselves or others.

- Anytime your loved one will be under the care of others in your absence, either in your home or elsewhere, you may have concerns about their safety. A LOWA can easily be taken advantage of, neglected, or even abused. Researching numerous sources and reviews, soliciting personal recommendations, and talking to social workers/advocates with personal experience with facilities can minimize these risks. Due diligence is crucial.

- Explore all possibilities. Investigate long-term care insurance options, as finding yourself in this situation without it can be devastating. If you are already having financial concerns, see if your loved one can qualify for Medicaid or other federal and/or state assistance.