Of all the issues facing me during the 10 years I cared for my husband, Tom, at home, that was the most asked question. It was asked by professionals, family, friends and uninvited strangers, sometimes in parking lots and supermarkets, often with Tom standing next to me. It was like being tormented by a flock of pecking birds at times. And when Tom died they still felt the uncontrollable need to ask, even in the circumstance of my mourning…

"Did he know who you were when he died?"

Those words will be branded on my brain until the day I, die.

The problem is that there was always a hidden agenda behind that question. That question had more to do with whether Tom should be institutionalized than it ever had to do with where he was in this disease process. More than anything else it demonstrated the bias that surrounds this disease, a bias that equates the ability to communicate and produce with human worth and need. And unspoken was the ever present, innuendo…

• "Why are you still taking care of him when he doesn’t even know who you are?"
• "Why would it matter if he was in a nursing home?"
• "What are you trying to prove?"

• Tom’s inability to identify me marked the end of my being expected to care about him.
• Tom became this ‘thing,’ this appendage unnecessarily attached to me, a ‘thing’ unable to feel happiness, fear, rejection, loneliness or grieving for his own losses. Only, he felt those things all too keenly.
• Memory loss was the only symptom anyone knew about and in fact, it was the only symptom the majority of people did know about.

Make no mistake about this: Alzheimer’s is not about memory loss! It is about progressive, permanent, brain damage that affects every function of the brain until it dies. And when the brain dies we die.

If this disease was presented to the public in its entire spectrum of horror there would be a hue and cry to have it eradicated, and people might stop asking that stupid question.

• When Tom died he was emaciated because his brain had stopped telling his digestive system to glean nutrients from the food he ate. You could see the bone structure in his face and his skin was so drawn it was shiny.
• His body had curled into the fetal position because his brain had stopped telling muscles that pull in opposition to muscles that push to work, and lack of activity resulted in atrophy.
• He was unable to smile because the muscles in his face stopped working. The only way I knew he was sad was when his eyes filled with tears and in the end even that stopped.
• He couldn’t feed himself, walk, stand, bend, sit or lay down without being physically moved and was bed ridden for over 4 years.
• He was in incontinence products for over 7 years.
• He couldn’t scratch an itch, wipe his nose or let me know the tag on the back of his shirt rubbed his neck.
• He lost the ability to spit when having his teeth brushed and then the ability to swallow.

But

He responded to love, acceptance, respect and consideration. In spite of his increasing deficits, his dignity was never compromised because I refused to let it be compromised.

Non-Caregivers Often Misunderstand Dementia

Did I ever receive encouragement or empowerment, or endorsement for my efforts? No! Instead I frequently heard:

• "Get on with your life."
• "He wouldn’t want you to do that for him."
• "No one should sacrifice their lives this way."

In other words, they offered an "Out of Sight, Out of Mind" approach to Tom’s care needs.

• While my friend was encouraged to keep her husband, who died of Lou Gehrig’s Disease, at home I was not. Home care was never encouraged for Tom, even though he would benefit from the continuity of being in his home, among his things and with his family the same way my friend’s husband benefited from those things. In the end the care tasks weren’t any different.
• My own personal enrichment or spiritual growth as a result of my caregiving was undervalued. When I spoke of the love and joy we shared in spite of his deficits, I was met too often with condescension and sometimes-outright ridicule. After all, ‘"H didn’t even know who I was," people would say.
• And no one ever talked about Tom as if his wants mattered anymore. Tom became a non-entity as a human and too many felt comfortable in saying so in as many words.

In defense of our people, I’d like to make this point: "Forgetting who we are," is a misconception.

• Alzheimer’s Disease is probably the only illness that can be described as being the opposite of birth. Our brain houses everything we learn and experience from the moment of birth until we get Alzheimer’s Disease and then the process begins to reverse itself. The top layers of learning/memory will be the first to go and we will recede through our abilities one by one until we need the same level of care as a newborn infant. In the process long-term, ‘old’ memory is compromised, rote memory fails, the loss of unconscious functions that regulate respiration, digestion, blood pressure, etc., follows, the immune system is compromised and the person dies. (see note 1)
• The first thing a baby develops is the instinct to bond and to feel. They don’t need to attach words to those feelings for those feelings to be valid. Understanding is probably equal to that of a young child even though our people can’t communicate verbally.
• Memory is dependent upon the brain’s ability to organize, retrieve and relate all the information it receives. That function of the brain is among the first assailed by this disease. Once compromised, our people are unable to find the information that is still in there or utilize it effectively.
• "The brain shrinks as the disease progresses and at death it actually resembles that of a newborn infant." (see note 2)
• The fact that our family members lose the ability to communicate should not diminish their inherent rights as human beings for basic regard. Their inability to identify us is a result of brain damage and not personal rejection of the people around them.
• In terms of recognizing us, most of us get past that aspect rather quickly because it happens to coincide with other more pressing matters such as incontinence, wandering, pacing, sun-downing and all the other behaviors that occur in the mid stages of this disease, all of which results from brain damage. In comparison, your family member’s ability to name you almost seems inconsequential.

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

Understanding Alzheimer’s Disease as Brain Damage

Oliver Sacks, relates the following case study in his book, "The Man Who Mistook His Wife For A Hat."

Jimmie is a 49 year old man with Korsakov’s Syndrome, an organic brain condition which erased part of his memory but otherwise left the rest of his thinking process intact. His memories are cut off at 1945 when he was 19. His amnesia of the present is so complete he is unable to reconstruct his history since 1945 or retain any events that happen daily and he is literally frozen in time. He has no recognition of his doctors even though he sees them every day. He is constantly perplexed by the changes he is constantly faced with. He recognizes his brother but can’t understand why he looks so ‘old.’ Recognition is facilitated by familiar facial features, voice patterns and body language, and in a sense he ‘jogs’ his memory before he can accept the person standing before him as his brother, a process he repeats on every visit.

Comparing this form of brain damage with Alzheimer’s Disease might raise some eyebrows. However, in my mind, brain damage is brain damage regardless of the cause and this case study helped me see my husband’s problems in a different light.

The separation of our people from their present in the early stages of dementia is similar in that their clearer memories of people and places will be as they existed in their past. Their present is fading from memory, and like Jimmie’s affliction, it cannot be reconstructed.

• A wife can’t ‘find’ the bathroom on her own because the space is unfamiliar to her.
• She can’t operate the tub fixtures safely any more, or get in or out of her clothes because her rote memory is impaired.
• 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 her response is colored by vague imprints from her subconscious memory of her own early toilet training, 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. 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 happening themselves? They don’t even understand why he still has her home. As many caregivers have found out, casual observers can easily misinterpret the whole scene as one that is abusive. And once that label has been levied many get to experience another sort of hell in their lives.

Wanting to Go Home

We hear our people obsessing about wanting to go home when we’ve taken the trouble to move them in with us, often at great personal family sacrifice. We need to look at their world through their eyes and learn to recognize the symbolic language being spoken. Something as simple as "I want to go home" takes on different meanings as time with this illness passes and maybe all of the following choices are valid.

• 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?
• Is 'home' a metaphysical space that describes their need to feel safe, nurtured, loved?
• And who is to know if 'home' is the penultimate home, the home from where we came as new souls entering this plane of awareness when we were born.

A Different Reality

This disease alters their reality 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 of someone with this disease have to change. To walk up to your person ‘cold,’ drop your name and then feel rejected by their lack of response is really little more than arrogant. It is also a little cruel. It is a test that sets the Alzheimer’s Disease person up to fail and it inflicts a great deal of stress on them. So what if they can’t rattle off your history in their lives at the drop of a hat!

• 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 and it isn't necessary to inflict it on those with Alzheimer’s Disease. 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 caregiver is, is really a very small part of this greater picture.