Comparing the care of AD family members with childhood development is not a new concept and I am hardly the first to make it.  

Those of us who face this disease generally make these comparisons ourselves, particularly while we fight the impulse to view our people’s behavior as childlike. How many times have I heard caregivers, myself included refer to those mid-stage behaviors as 'having a six foot toddler on our hands'?  There are those who feel the term 'parenting' is demeaning and infantalizes those with this disease.  I feel they are bogged down in semantics and in danger of joining the Politically Correct Police.  I also have to wonder just how much actual hands-on experience they have had with this disease.  No, our people aren't childish or children, but they are, in a very real sense, becoming like children again and those of us in the driver's seat need something tangible to grasp on to if we are to affect the changing roles we face with this disease. 

As Tom’s wife and my sons’ mother I did many things on their behalf.

• Evaluated their abilities and encouraged them to do as much as they could do within their capabilities.

• Adapted our home environment to meet their physical and cognitive needs.

• Found and learned to use the tools necessary to their care.

• Championed their successes and supported them in their failures and learned to accept change.

• Developed coping mechanisms that enabled me to meet the increasing demands they imposed on me.

• Worked at developing positive attitudes about my role, the absolute essential ingredient for success.

• Most of all, I protected them as best I could from situations that were dangerous to them and from people who would harm them or hurt their feelings.

The similarities are there, one just has to recognize them.  However, while becoming a mother for the first time was also fearful, there was also an expectation of potential joy and success in the experience.   Becoming Tom’s caregiver did not have that built into the equation.  Where family, friends, and various professionals rallied to help me develop the confidence I needed to raise my kids, the opposite was true when I took on the challenge of Tom's care.  

The key to my success in keeping Tom home was in learning to step back and look at this disease through my husband’s eyes.  The more I understood why behaviors were happening, the more my common sense kicked in, and much of the fear and uncertainty I experienced was dissipated by options and action.  I realized his behaviors were largely rooted in how his environment affected his impaired perception of the world around him.  Since I couldn't fix his perceptions, I could do something about the environment and most of what I did to navigate those years grew out of the same common sense I used when raising my children.  

• If they were in danger of wandering out of the house and on to the street as toddlers I made sure the doors were locked.  

• When Tom began to plot escapes from the house I installed dead bolts and kept the key on me at all times.

We all have common sense, the problem is that we haven’t been told to apply the techniques used in raising children to the techniques needed to help those facing this disease. This may not be the entire answer, but it is a beginning.

• Just as you wouldn’t allow a 5-year-old to use the stove unsupervised, you can’t allow someone with impaired reasoning ability to cook unsupervised.

• Just as you wouldn’t allow an 8-year-old to drive a car, you can’t allow someone with impaired reasoning ability and perceptual distortions drive.

• Just as you wouldn’t let an 8-year-old stay unsupervised in the house, you can’t leave someone with impaired reasoning ability at home alone.

• Just as you wouldn’t allow a 2 year old to go without diapers, you can’t allow an adult who is unable to toilet themselves soil themselves unnecessarily.

However, because our people are adults and not children we tend to get very hung up on stepping in and taking charge of the situation because of some convoluted definition of what constitutes their dignity.  

We don't bog ourselves down in these hang-ups in dealing with children.  Their dignity is a given and we are just doing our jobs.  It really isn't any different with our elders.  It is a shift in attitude and that is all it is.  Unfortunately, instead of taking charge with our elders, the tendency is to forgo action in favor of avoidance.   Common sense goes out the window and we are left flapping in the wind while our people pee in the potted plants and go un-bathed.  We don’t think in terms of jeopardizing a child’s dignity by setting restrictions that are necessary for their safety and the safety of others and we must not attach the word dignity to someone with impaired reasoning for the same reason.  

Their dignity has no place in the decision making process because their dignity isn’t what is at stake.  

Their safety, their comfort, their physical health is what is at stake. The role we must take on as symptoms become noticeable is one that is unwelcomed by all the participants in this drama, but you have no choice in the matter.   Someone must begin the process of taking charge and that begins with the diagnosis and it begins with your decision to just do it.

Alzheimer’s Disease is probably the only illness which can be described as being the opposite of birth.

As the disease progresses the layers of learning are stripped away in much the same order as they were laid on from birth.  In other words, the person with Alzheimer’s Disease will lose their abilities in much the same way a child develops theirs.

According to Dr. Paul Raia, Director of Patient Care and Family Support in the Eastern Massachusetts Chapter of the Alzheimer’s Association, who lectured at the 1997 Alzheimer’s Disease Education Conference in Chicago: 

"At death, the brain resembles that of a newborn infant."

Dr. Barry Reisberg has provided the means to compare AD functional loss in the mid and late stages with the development of children as seen in Figure III.  FUNCTIONAL STAGES IN NORMAL HUMAN DEVELOPMENT AND ALZHEIMER’S DISEASE,© He graphically demonstrates the similarities between the first 12 years of childhood development and what are the last 12 years of life with someone with Alzheimer's disease.  

Dr. Reisberg adds:  

"While our people don’t go through the crawling stage, or the sucking stage, the pattern of development in a child during the first 12 years of life and the pattern of deterioration in an Alzheimer’s person during the mid to late stage of the disease hold startling similarities."

If you have the opportunity to watch children develop from infancy you will observe that their brain is still developing after birth.  No one is born as an independent being and it is years before we can feed ourselves, toilet ourselves, bathe ourselves, dress ourselves and develop the motor skills that allow us to become independent adults. 

As a further example:  The child's vocabulary begins with a single word, usually ‘ma,’ which grows into a simple 3 word sentence and then blossoms into more complex sentences and concepts.  They then develop the ability to reason, learn, remember, relate, and think about all the information that passes by them.  By the time they are 6 you can have a fairly complete conversation and from that point you witness the rampant development of curiosity, abstract reasoning and humor.  I watched my grandson develop verbal skills in exactly the same order than Tom lost his.  One by one the layers reversed themselves until he was reduced to one word.  In his case, however, that one word wasn't 'Ma Ma,' it was ‘No.’   Even at that level of verbal communication his innate need to have control of his life was apparent.

As yet another example:   Think about the learning process that goes into teaching a child how to use the bathroom independently.  Each child has to develop levels of eye-hand coordination, gross manual dexterity, thought process and literally learn and integrate thousands of things before the acts of toileting and bathing become second nature.  And considering that this process involves being able to dress and undress as well as use the bathroom facilities properly, it is no overnight event.  In fact it is approximately 5 - 6 years of development and constant reinforcement before the child completes this phase of independence and even then there are few parents who would trust a 6 year old to regulate the hot and cold faucets and take a bath unsupervised.  Nor would we berate them for not being able to do so.

It is the same learning process for a person with Alzheimer’s Disease, but, it is happening in reverse. The layering of learning that was carefully built up as the infant became a toddler and the toddler a child, and the child an adult, is now being striped away.  Rather than insist your family member should still do these tasks, or feel you have failed because you now have to help them, or rue the tasks that have now befallen you because you shouldn’t have to do these things, it is time to accept the fact that they need your help and encouragement the same way a child needs those things.  Going to the bathroom unassisted will no longer be within your family member’s reality. They are going to need help and if you are the primary caregiver they are going to need your help.

In the most graphic of ways, our people  enter Alzheimer's with the same needs our newborns have entering life. 

They respond to love, nurturing, acceptance, touch, body language, inflection in voices, noise, the same way a small child responds to those things.  A child develops best through encouragement and assurance.  Because our people are moving back through this process does not mean they are less in need of the same things.  If you have ever held and coddled a new born child you know the gratification you receive from doing that act.  You also believe that that coddling and touching is essential to that child’s development.  In fact we know it is essential.  There has been sufficient research to prove that babies die from lack of nurturing.

Are our Alzheimer’s people less needy or less deserving?  And is it possible to feel the same sense of contentment towards your aging parent or spouse as you feel towards your grandchild?  The answer is: Of Course!  But you have to expect to feel that and you often have to put aside an entire lifetime of conditioned response to that person in order to do so.   It is possible to wipe the slate clean and begin anew.

Their dignity, their history of who they are, their identity is totally dependent on how others see them.   The fact that they can’t communicate should have no bearing on that very basic right we all are endowed with as human beings.   

As a consequence, and in a very real sense, your task as a caregiver is to help your family member regress back into infancy and through their final journey of life with the same unquestioned awe and affection we afford the rearing of our children.

How do caregivers recognize the ramifications of this role?

How do they face this challenge if the only message they get is: "You can’t do it," and more important: "You are crazy to try!"

Your task is a daunting one and it is to afford your family member love and regard without judgment while you deal with a lifetime of unresolved issues and navigate a system of providers and services who are, too often, ill informed about this disease, and a public that devalues them and their needs because of the loss of cognitive function.  

You will be facing life changing decisions and tasks that not only affect your family member but which also affect every person involved in your life. 

You will often feel abandoned, isolated, trapped and taken advantage of. But you can also feel empowered, strengthened, satisfied and loved.  And this is as much a possibility for the home-caregiver as it is for the caregiver who had to make the nursing home choice.  Love and affection don’t stop because the address has been changed to a facility.  In either setting, much of what you focus on will be the result of your attitudes and your ability to challenge the attitudes of others.

Caregiving, like Parenting,  is the highest expression of unconditional love that exists.

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