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Does  he  know  who  you  are?     

"It's been lovely...         but I have to go and scream now!" 

"Does he still know you?"  That was the most asked question of me during my tenure as Tom’s wife, nurse, mentor, valet, confident, spiritual leader, and case manager.  

It was as if my husband’s ability to identify me properly was the only explanation for my doing something as odd as continuing to take care of him. That question became the demarcation between, what I perceived as being allowed to keep him home and being expected to institutionalize him. Because so many of our friends and family fled before the real care needs of Alzheimer’s manifested themselves, they had in essence escaped the opportunity to witness the real disease in action as well as the humanity and essence that remained a part of my husband until he died. Because it wasn’t witnessed, it wasn’t believed to be possible.

Over the 10 years I cared for Tom I tried, humor, anger, sarcasm, and outright rudeness. That question never went away.  It seemed impossible to make people understand that Tom’s memory of me was not up for public evaluation or discussion. Tom’s hygiene problems and care needs were challenges I chose to meet for as long as I could meet them, and his value as a human being wasn’t altered by a mere disease process because, I refused to let it. The fact that I continued to care for my husband even though he couldn’t rattle off his name rank and serial number, or mine for that matter, was a conundrum that set us both apart from the rest of the so called ‘normal’ world.  While I know full well why the question was asked I also know how it made me feel.  

• It made me feel inadequate, as if my sanity was questioned.

• It made me feel as if I was being judged.

• It made me feel angry at the insensitivity I had to deal with on top of losing my husband to this disease.

• It made my job that much harder because it tended to isolate me.

• I really got tired of answering that stupid question.

It was like being tormented by a flock of pecking birds at times. Those words came to epitomize the bias towards my husband’s disease more than any others spoken to me during the last 10 years of his life.  And when he died and people discovered I had managed to maintain him in his home with me throughout his entire illness, they still felt the uncontrollable need to ask, even in the circumstance of his death and my mourning….

Even in my grieving I had to defend his right to die at home.  Those words will be branded on my brain until the day I die.  Did I ever receive encouragement or empowerment, or endorsement of my efforts?  The answer to that is, "Hardly ever!"  Everyone outside our rarified existence anticipated nothing but doom and gloom about Tom’s care and when I didn’t assume the position of victim I made people feel uneasy because I was expected to give Tom's care up to others.  

Over the course of Tom’s illness, I heard in great depth how horrible Alzheimer’s was, and how impossible the care was, and how hideous it was to not be recognized anymore, and that Tom would never want me to have to deal with his incontinence problems. The last statement was true but then he never would have wanted to get Alzheimer’s either.  What was screamingly absent from the rhetoric was this:

No one, ever talked about the beneficial reasons to keep Tom home and that continuity of care and familiarity with his environment would help his orientation and perhaps give him a better sense of security and comfort. 

No one, ever talked about the intrinsic values I would experience such as empowerment, spiritual growth, and personal enrichment, or of the love we would still share and the joy I would feel in the smallest moments of connection. 

No one, with the exception of hospice, and some family members ever spoke of the primeval need for me to share in Tom’s last days. To assist in the rituals of death and tend to the body is highly under-rated in our collective culture and possibly a missing but necessary part of our own development as human beings. 

No one, except for those who had been through Alzheimer’s, understood how debilitating it was for Tom to be written off, and how demoralizing that was for me.   When I spoke of Tom’s ability to communicate his feelings in spite of severe language problems and loss of thinking process, the response ranged from one of condescension, to benign neglect, to outright ridicule.

and – last but not least:

No one, once his communication skills slipped, ever talked about my husband as if his wants mattered anymore. It was certainly obvious, that he didn’t matter anymore.

So, does reinforcing all the negative aspects of this care help us caregivers much?  I don’t think so. The only purpose those negative attitudes served was to encourage me to ignore Tom’s wants, needs, desires, and the history we shared. I was made to feel as if I wasn’t a team player because I was trying to keep Tom home. And why? Why is institutionalization encouraged with this illness? It all comes back to unexplored bias about this disease. After all; "Why would it matter who took care of Tom since he didn’t even know who I was?"

And again, the attitude evolves out of bias, an equation that states:  

Loss of Thinking Process = Loss of Worth.

And everyone sits around wasting time and energy talking about the ‘guilt issues’ instead of dealing with the ’real issues’ of care imposed by this disease, real issues faced by over 80% of the caregiving population with this disease.  What concerns me is that the new crop of caregivers are just as unsuspecting of what they will face from the public as was I. We caregivers get little if any respect for our efforts and that is a hard pill to swallow after years of providing what is truly an unconditional act of love.

Its almost as if a determination is made over who deserves care and who doesn't and hidden in all the unsolicited advice is the belief that our people don't benefit from our efforts because they don't know what's gong on anyway.

We must be allowed to grow into the job of caregiving the same way we grow into the job of parenting and like new parents we need expectations of success if we are to succeed.  And while becoming a new parent carries a sense of joyous expectation with it, taking on the challenges of our elderly and most specifically family members with Alzheimer's brings sadness along with the built in fears...

...of change

...of the future

...of our ability to do the job

None of us expect to come out of this experience strengthened, but that is what seems to happen.  We face our demons and we prevail if we are insightful enough to view this experience as a continuum of life, as preparation for our own parting, and not as some mindless form of retribution hurled at us from an uncaring God.  

Those of us who actually face this aspect of the illness find, ‘forgetting who we are,’ is a misconception. The immediate recognition of family and friends simply does not shut off that dramatically. It, like every other aspect of this disease is whittled away by time and its initial impact heightened by loss of communication skills.  Long after they are unable to identify you by name, they still know who you are the same way a baby knows who its mother is. That bond is established through instinct, and it is imprinted through voice, smell, sound, body language and the attitude of the mother as she comes in contact with that child. It is the same instinct for those with Dementia/Alzheimer’s Disease. Those survival instincts are there at birth and they will remain until the last breath is taken. Alzheimer’s does not alter that one path of communication.

First:  The fact that our family members can no longer communicate the proper words to express recognition of us should not diminish their inherent rights as human beings for basic regard.  That aspect of this disease is a result of brain damage, it is not a last personal rejection of the people around them based on any known or imagined slight suffered prior to the onset of this disease. 

Second:  This phenomena is, in reality, a small part of the total picture of this disease.  Most of us get past that aspect rather quickly because it happens to coincide with other more pressing aspects, mainly those of incontinence, wandering, pacing, sun-downing and any combination of other behaviors that also occur in the mid stages of this disease.  When you are in the throes of dealing with the combination of things this disease can toss in your direction, your family member’s ability to name you almost seems inconsequential by comparison.

Third:  Our people know us in ways that are less tangible than ordinary conversation.  They know us by smell, body language, voice, verbal inflections, and by a genuine expression of love.  They know us the way a newborn knows who its parents are.

Oliver Sacks, (the author of "Awakenings") relates the story of "The Lost Mariner" in his book, "The Man Who Mistook His Wife For A Hat." He describes a man with Korsakov’s Syndrome, his long-term alcoholism precipitating an organic brain condition which erased part of his memory but otherwise left the rest of his brain perfectly preserved. On the surface, comparing this form of brain damage with Alzheimer’s disease might raise some eyebrows, but I take the opinion that brain damage is brain damage regardless of the cause. That this phenomena can exist in any brain led me to believe that it can also exist as part of the random process that is called Alzheimer’s. The case study of Korsakov’s syndrome, offered by Dr. Sacks, gave me a clearer understanding of my husband’s recognition problems than almost anything else I read that was specifically written about Alzheimer’s Disease. 

Jimmie is "The Lost Mariner," in the case study Dr. Sacks uses to describe this syndrome.   Jimmie is a 49 year old man who has no recollection of the years that have passed since he was 19.  He is literally frozen in 1945.  His amnesia of the present is so complete that he is unable to reconstruct his history or retain any events that happen daily.  He cannot relearn, store, or retrieve anything that has happened since 1945.  Although he recalls, in vivid detail, his life prior to 1945, it is a memory that ends abruptly at that point in time.  This is graphically demonstrated by his constantly being perplexed at how dramatically things change from moment to moment.  For example, his doctors are new to him at each and every visit they make to him, and he greets them each time with the same good cheer he always used when meeting new people.  In spite of this phenomena he has come to recognize his brother, who visits him from Oregon.

Presumably this recognition is facilitated by familiar facial features, voice patterns and body language, all of which reside in his ‘old’ memory, and which haven’t changed a great deal.  I would also guess that this recognition involves a process Jimmy must go through on each and every visit his brother makes.  In other words he ‘jogs’ his own memory of his brother before he can accept the person standing before him, a person who looks ‘different than remembered,’ as his brother.

Sacks writes this about Jimmie, "The Lost Mariner," and his visits with his brother:

The separation of our people from their present, in the early stages of dementia, is a similar phenomena.  In a sense our people suffer a similar fate to that of ‘Jimmie,’ the difference being that their ‘amnesia’ is progressive.  Their memory will be whittled away until even the long-term, old memory is compromised.  Initially, they are also faced with a present that is being lost and one that cannot be reconstructed.  Their clearer memories are of people and places as they existed in their past, and we wonder why they have trouble recognizing us and finding things in the place they now live, a place that may hold little if any familiarity in their recent memory.

As an example, our people talk about wanting to go home, when they are home. Instead of arguing the point, an argument you cannot win I might add, those of us who can still reason need to see what’s transpiring through different eyes. 

Something as simple as "I want to go home," takes on different meanings as time with this illness passes, and the caregiver has to learn to hear the symbolic language being spoken and ignore the actual words.

• Is 'home' the last place they last lived?

• Is 'home' the first home they shared with their growing family, a time of hope and expectation?  A time when they were in control?

• Is 'home' the house in which they grew up as a child, a place where they felt nurtured and loved?  Perhaps that is why they talk of a parent in the present tense when that parent died 20 years ago.

• Is 'home' a metaphysical space that describes their need to feel safe, nurtured, loved?

• And who is to know if 'home' is the ultimate home, the home from where we came as new souls entering this plane of awareness when we were born.

And so, the new move to an adult child’s home or newly adapted apartment, or nursing home, leaves the Alzheimer’s person with the task of navigating a truly strange and unfamiliar environment.  A wife not only can’t ‘find’ the bathroom on her own or operate the tub fixtures safely any more, she also has trouble getting in and out of her clothes and figuring out shampoo bottles and soap.  She is reluctant to bathe in front of her husband, and more reluctant to use the toilet in front of him because her mind no longer holds him as the 75-year-old man she’s been married to all those years.  Instead, her real image of him is as the 25-year-old she married and she has trouble reconciling the difference in his appearance.  He may not be perceived as a stranger, per se, but he may indeed seem strange. 

She fluctuates back and forth between recognition and fear depending on the level of stress she is feeling, much of those feelings colored by vague imprints from her unconscious memory of what her own early toilet training experience was like and the accompanying taboos.  Add to that the embarrassment of having ‘messed’ herself, and being faced with a man, who resembles her husband, but who doesn’t exactly look like her husband, who has invaded her private space, and who is trying to take her clothes off, and you have a situation ripe for a catastrophic episode.  

How the husband approaches her at any given moment of the day or night has to influence her behavior, and how can he exhibit any sensitivity to this situation if he has no understanding of what she is going through?  Better yet, how does a service provider help this man understand the ramifications of what is transpiring, when they don’t understand the ramifications of what is transpiring themselves?  As many have found out, casual observers can easily misinterpret the whole scene as one that is abusive.  And once that label has been levied, well, many caregivers get to experience another sort of hell in their lives.

Reality is being altered by this disease once the mid-stages occur and it cannot be fixed.   The only option is to enter their world and accept their reality.  And so, instead of explaining to them that they are indeed home, or that you are their husband, or son, or wife, perhaps what you need to do is express love and acceptance to them and acknowledge that life is different now. 

Your expectations as a caregiver, or friend to a person with this disease have to change.  To walk up to an Alzheimer’s person ‘cold,’ expect instant recognition and then feel rejected by their lack of response is really little more than arrogant.  It is a test that sets the Alzheimer’s person up to fail and it inflicts a great deal of stress on them.  How much simpler to identify yourself in order to help ‘jog’ their memory and if the response is still less than gratifying, so what?

• Does the visit or the task you are performing carry less meaning?

• Does treating them with kindness and understanding carry fewer goody points?

• Is it necessary to walk away from the encounter with less of a sense of yourself because you weren’t identified properly?

We don't lug this sort of baggage around in our relationships with infants and toddlers.  It isn't necessary to inflict it on our Alzheimer people.  This is indeed a sad thing to witness in a friend or relative, but it is a milestone in the deterioration that will happen if your person has this disease, and it doesn’t have to portend the end of your relationship with that person. 

Our family members, like our infants, will be dependent upon others providing cues, the use of familiar phrases, body language, tone of voice, facial expression, and a warm intent to trigger response.  Even when language has failed them completely, they will find a way to be a part of their surroundings, if they are allowed that luxury by those around them.  Take it from one who knows.   

Forgetting who the caregivers are

 is really a very short putt on this particular golf course.

©2000

For a very poignant caregiver story...    John and Dorothy and the Restaurant

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