The Long Good-Bye

This is a hard blog to write.  I spent the last three days with a dear friend of close to 40 years.  She is in the mid-stages of Alzheimer’s, where she is experiencing anosognosia — a deterioration of the parts of the brain that recall recent events, paired with an inability to recognize that the memory loss is happening.  Frequently, people assume it to be just denial, but it is not.

What makes this a hard blog to write is that she is in a transition period, where there is a bit of awareness left that “something is wrong”, but she is unable to process just what that is.  The person I have known, loved, and admired, is slowly but inevitably disappearing.  What remains are shared memories from a past that gets more and more distant.

Learning to Live with Loss

Loss of the “self” is an odd psychological state.  I know who I am.  I can recreate who I was through story and recall.  I can predict who I am becoming because I have a firm grip on “now”.  That is a linear trajectory.

Dementia disrupts this. It is a very cruel disease.  It robs the individual of a sense of themselves in the present, and drops them without rhyme or reason into a past that shifts from early childhood to yesterday, to high school to death of lovers or friends. It also leaves those who love the individual abandoned.  The person they knew, shared experiences with, loved or hated, no longer remains that way.

With Alzheimer’s in particular, this trajectory is more like a long causeway that has gaps in it.  You can be going along as if everything is all right, then all of a sudden there is this gap.  Getting to the other side may happen quickly, or it may take days or weeks.  It may never be bridged.  Eventually, that causeway ends, and then begins to fall apart in reverse.

Balancing the Professional and the Personal

The hardest part of my trip has been having an understanding of the disease, having worked with others who have gone through similar patterns, but having to confront my own lack of control and influence with my friend.

This is the paradox of this disease.  What is taken away leaves opportunities for seeing how a relationship is constructed, what unstated agreements drive the relationship, what unresolved resentment and regrets linger, and most of all, what possibilities for forgiveness and relationship repair are no longer available.

On a personal level, the inner dialogue pinged back and forth between ‘this is the disease not my friend’ and ‘why couldn’t I have done something about this sooner?’  I should have known better and I feel so helpless.  I am so angry.

Love the Person, Hate the Disease

What is also complicated is that the person I have known all these years can really piss me off!  Things have been said and done that have disappointed both of us with the other.  Promises have been made but not kept.  Expectations have been left at loose ends, cultivating resentments that pop up when I feel taken advantage of.

All this is true for any relationship.  The difference with Alzheimer’s is that the disease makes it an unfair fight.  My friend is losing social filters that previously would have softened harsh words, or elicited long conversations ending in hugs.  What seems obvious to me as a plan or logical next step turns into an endless loop of story-telling – the same story, told the same way, without any recognition that it is being repeated.  This is the disease.  Literally, the parts of the brain in charge of planning, emotional awareness, and understanding consequences are shrinking.

Nothing New Here

Alzheimer’s is not a new disease.  Before Dr. Alzheimer sliced his specimens of brain and put them under the newly minted microscope, people who had this kind of brain disease were hidden away in insane asylums.  Treatments were cruel and without understanding.  People suffered and died.

Since 1900, researchers have been chasing the underlying cause of the brain shrinkage.  Plaques and tangles showed up on those initial slides.  They were a likely suspect and so were studied for a century.  They still hold sway in many laboratories, with pharmaceutical companies chasing the magic pill that will slow down their proliferation and stop the deterioration. 

Turns out, there is more to this than plaques and tangles.  Sadly, people are still suffering and dying.

Fear and Shame Hold Us Hostage

The Boomer generation has the highest concentration of people with Alzheimer’s of any generation to date.  That is more a statistical anomaly than a reason to run to Google or Claude and seek out confirmation of symptoms. We have higher numbers because there are more of us.

We are afraid of losing our minds not because we understand the mechanics of it, but because we don’t understand what it will do to who we are.  The unknown can hold us hostage, fearing not what is actually happening, but fearing what we are imagining will happen to us.

We are ashamed of losing our minds because there is too much evidence that once lost, we will no longer be able to decide what we want to do.  We will no longer be able to act on that decision, and some stranger will end up caring for us.  This is the most vulnerable we will be since infancy.  There, at least most of us were able to count on a parent or primary caregiver to ensure we would be clothed and fed.

The Truth Lies Somewhere in the Middle

The facts speak for themselves.  Care for people with dementia is expensive and takes an emotional toll on primary caregivers – family members – around the world.  Very few of these people have studied neurobiology or have an understanding of the psycho-social influences on behavior that underlie what the loved one with dementia is saying or doing.

And even if we do have that information, the reality is that care for individuals with dementia is not a valued service.  If it were, there would be sufficient numbers of care givers already trained who would be earning a decent salary.  If it were, there would be sufficient numbers of facilities where people in the later stages of dementia could be cared for round the clock and not be concerned with bankrupting the family with the costs of care.  If it were, there would be sufficient resources to provide respite, knowledge, and a continuum of care during the early stages, and in the adjustment period after the person with dementia has died.

As of Today

As of today, we have none of those things.  This means that communities around the world will be problem-solving these issues for the next 20 to 30 years.  Perhaps, in that time, a breakthrough will occur and additional solutions will be found to either slow the disease or prevent it.

In the meantime, I am learning to love the person I hold dear to me and hate the disease that is interfering with my ability to stay connected with my friend. It is going to be a long good-bye.