The Long Goodbye: living with dementia can be much more

In this post, I would like to explore the not-uncommon perspective that dementia is “The Long Goodbye”—a relentless journey of sorrow endured by those living with the disease and their friends and family.

Someone once shared with me her belief that dementia is frequently regarded as The Long Goodbye and that living with it is often harder on the families than on the person with the disease. This is not an uncommon observation, yet the comment flew in the face of my experience, while still holding an undeniable ring of truth.

Tina and I were fortunate, as for us, dementia became a goodbye that took a long time to arrive. We had six years of a modified normal life, one year of a passable new normal, and one year of unrelenting decline. Probably a better option than my mother’s, who, at a similar age, suffered a stroke and passed away within an hour.

There was a paradox—simultaneously true and false—that I want to explore further in this post.

For each of us, the challenges of caregiving are compounded by the constant ambiguity and uncertainty surrounding dementia, by communication difficulties that progressively worsen, and by episodes of stark contrast that can take us by surprise—frustrating or even worrying us. With this heightened level of stress, we are inevitably subjected to emotional variability that overrides our steadier viewpoints, creating a more despondent outlook and potentially leading to The Long Goodbye syndrome.

In my experience, sheer exhaustion—whatever the cause—inevitably leads to a sense of desperation and, ultimately, a desire for the source of that exhaustion to end. In the case of dementia, exhaustion is a constant companion, and it could easily be this that manifests as the feeling of The Long Goodbye.

Alternatively, could it be that the impression of The Long Goodbye does not persist throughout the entire dementia journey but instead emerges more strongly in the later stages of decline? As dementia progresses, the gradual loss of the person as they once were becomes more apparent, amplifying the sense of a prolonged farewell—often triggered by rapid, irrefutable deterioration. The emotional impact of this may become part of the grieving process, which is complex even under the best of circumstances but especially challenging when accompanied by the anticipation of loss—a feeling I found was never far from the surface.

What makes an ordeal feel like a painful, drawn-out farewell for some, while others can acknowledge its inevitability and appreciate the intervening time?

Perhaps the paradox lies simply in differing perspectives. My experience of living with my wife’s dementia every day for years is different from that of someone supporting a relative in a care home—and your experiences and challenges will be different yet again. How we perceive something greatly influences how we feel about it, so our perspectives play a crucial role in shaping our emotional state.

What was it that made the difference for me? It was not because I am any different—I, too, was tested to my breaking point—but I was lucky. I was lucky to discover ways to learn and adapt to the constant stream of difficulties. I luckily stumbled upon a perspective that worked for me, and I clung to it. And when all else failed, I was lucky enough to still have my wife to hug, and she still had me to hold her hand and guide her.

With hindsight, I believe the difference is also based on four influences that interact and transform as the dynamic world of dementia progresses. These are your perceived role and goals, how you stay grounded, how you engage, and luck. You determine the first three, but you must adapt to the fourth.

Even in situations diametrically opposed to mine, where the dynamics of the caregiving relationship differ, I have witnessed the same influences—personalised and adapted to fit the different circumstances—at play in caregiving relationships that show no signs of strain.

When I reflected on my role as Tina’s caregiver and set myself objectives—which I did frequently—I was, in fact, achieving two critical things. First, I was engaging in a deliberate evaluation of Tina’s practical needs—both her current needs and those likely to emerge in the future. This helped me to be better prepared and less likely to feel overwhelmed. Second, I was clarifying my understanding of how Tina would want to be cared for, ensuring that my decisions and actions remained aligned with her preferences and dignity.

In practice, there is a lot of detail buried in that statement, but most importantly, it was a promise I had defined for myself, to the most important person in my life. I told myself that my role was to take full responsibility for Tina’s well-being and to protect her from all unnecessary distress. My goals were equally simple: to keep a smile on her face and to walk every step with her. This seemingly simple and perhaps clichéd statement became the bedrock of my resolve and a powerful motivator

Staying grounded was something I stumbled upon almost by accident. As news of Tina’s diagnosis spread, more and more people offered their sympathies and expressed concern for both Tina and me. When everyone around you is focused on your struggles, your world can start to shrink, and soon, everything you do, talk about, or think about seems related only to your own situation.

Then, over the course of just a few days, I learned about four other situations, practically on my doorstep, where others were dealing with challenges equal to or even greater than mine. This was a healthy wake-up call—one I could draw on when times got tough—helping me regain energy by knowing that others were managing similar or even greater hardships.

It also deepened my appreciation for what I had. Even as I was losing my wife, I realised that what we shared could never truly be lost and that our relationship was something many people could only dream of. Somehow, I developed the ability to use gratitude to silence the ‘black dog’ of despair when it tried to come calling. It wasn’t easy, but it was achievable. In my experience, staying grounded was what enabled me to endure the long wait before the goodbye came.

Engaging with dementia is what made the long wait something to appreciate rather than something to endure. The key factors for achieving this are easy to define and are well known by those specializing in this area of care. Simply put, and perhaps heavily understated: when in the company of anyone with dementia, try to incorporate these five guidelines into your interactions with them.

Leave your world at the door: Nothing else matters at that time. Just be in the moment and give them your full attention. It can even be a welcomed break from your own anxieties.
Embrace their dementia: Don’t fight it or rail against the injustice of it. Approach it as if it were an alternative reality that you have been privileged to visit. This perspective certainly helped me maintain the right frame of mind throughout.
Walk their path, not yours, or a hybrid of the two: There is only one reality, and it is the one they perceive. Don’t correct or criticize—just play along as you would with a small child.
Treat them as adults: What still functions in their brain is part of the mind of an adult, not the child they sometimes resemble. Just because they struggle to remember or communicate doesn’t diminish the adult still inside.
Manage your expectations: What you see and hear will not always align with your sensitivities. Does it really matter if they stop conforming to our social standards? Most times, no—but it is still hard to witness.

Oh, and if you are fortunate enough to witness accomplished caregivers at work, as I was, then watch and learn. What they can achieve, and how they achieve it, was a real education for me.

Finally, is walking the path of dementia worse for the families than for the individual? I’m not sure any of us would entertain this thought if the person affected by a terminal condition were fully aware of their fate, even if the impact on the caregivers were equivalent.

I suspect we often assume that the person living with dementia is completely unaware of their world and, therefore, not experiencing any fear of mortality. This may be true, but I urge caution in drawing this conclusion, as they are confused yet still aware of their surroundings to some degree. We can never truly know how much awareness remains in their world of confusion.

Personally, I never experienced unequivocal, complete unawareness with Tina. Even when she seemed totally lost in her own world, she would still ask me if she was going to die or if we were okay (meaning our relationship) whenever she sensed uncertainty. Even in her final weeks, while on high doses of antipsychotic medication, she still had moments of recognising me or responding with a smile to her caregivers—both of which I interpreted as signs of limited awareness.

You might consider the difference between ‘The Long Goodbye’ and ‘A goodbye a long time coming’ as mere semantics, but to me, one evokes an image of a painful, drawn-out farewell, while the other acknowledges inevitability and an appreciation of the time in between.

The path of dementia is a continuous loss of the ability to live, but it is not just about death, nor is it solely about suffering. Tina and I made it our journey, and I hope you can, too. Try to remember that, even though our perspectives might initially be shaped by forces beyond our control, we can still challenge and reshape them.

I was fortunate; being retired and having no other responsibilities meant being Tina’s caregiver was my sole focus. Your caregiving journey will differ, but however the reality of the situation appears to you, it is justified, understandable, and as valid as anyone else’s. If you feel you are living through ‘The Long Goodbye,’ it’s no wonder. If you feel that life is tougher for you than for your loved one, who could possibly be in a position to disagree? It’s a challenging journey that only those who have been there and walked that path can truly understand. You have survived—or are surviving—an unbelievably testing ordeal. You are here, and you are undefeated, so you must be doing it right.

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