... In terms of the mid stages of care the role of parent and caregiver are not that unlike, except that the process is in reverse for the caregiver.  

Childhood Development:  Ages 2 years to age 8:  (Reisberg, Figure III)

During this phase of care the parent is no longer just responsible for the basic safety and physical and nurturing needs of the child, they are now endowed with a more important function.  That function is to give the child all the skills needed to become an independent adult.  This not only involves teaching simple skills such as dressing and toileting and using table utensils, it involved forging attitudes, social mores, moral behaviors, and religious conscience. As a parent you teach by example, attitude, encouragement, and conscious effort. You have the dominant role in helping the child take those first steps, both literally and figuratively speaking. This period of development is a time of great change that spans up to 20 years and you sometimes feel as if you are held prisoner by the engrossing and encompassing need to assert your autonomy while your child becomes an adult and learns, in the process to test and develop its own.

In a sense, you walk a fine line teaching the child the meaning of autonomy while they are still living in a totalitarian environment.   Everything done during those first 12 years of life is aimed at forging their independence and your eventual relinquishment as the one in control.  

Alzheimer's Deterioration: The Mid-Stage   (Reisberg, FAST)

As the caregiver during this phase of the illness, you walk a similar tightrope.  In this case however, you aren’t teaching your family member autonomy, your are helping them give it up.   This entails acceptance and understanding of their present autonomy as an adult human being but at the same time knowing that someone has to be there to supervise, step in when needed, and ultimately take charge because they no longer can command those qualities on their own. They are in a sense moving backwards from age 7 to the age of 2.   As a caregiver during this phase of the illness you are in the process of  taking Charge of the controls and your family member is in the process of giving them up.  

The Taking Charge Stage of Care is characterized by the breakdown between conscious and the subconscious/unconscious thought process of the brain.  The lines between these functions fade.

Because the brain can no longer regulate or control conscious thought the more subtle functions that fill out our personalities and establish our reality, those elements that utilize our subconscious and unconscious thoughts are left flapping in the wind.  The family member is assailed with delusional behaviors, hallucinations, combative behaviors, perceptual deficits, and loss of motor skills as well as physical changes that occur, weight fluctuations, balance, etc.  Reasoning ability disintegrates throughout this period, rote memory becomes inaccessible, and the ability to discern reality is grossly affected.  Communication breaks down and the person experiences extreme word finding problems, difficulty constructing thoughts in words, and abstract reasoning is fragmented at best.

*Webster’s Universal Unabridged Dictionary of the English Language defines Subconscious:*  1 Occurring without conscious perception, or with only slight perception, on the part of the individual: said of mental processes and reaction.  2 Not fully conscious; imperfectly aware.     3  That portion of mental activity of which the individual has little or no conscious control.

Unconscious:* (a) not endowed with consciousness; mindless; (b) temporarily deprived of consciousness.  Not aware (of), as he was unconscious of his mistake.  Not known, realized or intended by the person himself; as, an unconscious act, an unconscious insult.  Not aware of one’s own existence; not conscious of self.  Having to do with those of one’s mental processes that one is unable to bring into his consciousness.  The Unconscious; in psychoanalysis, the sum of all thoughts, impulses, desires, feelings, etc. of which the individual is not conscious but which influence his behavior; that part of one’s psyche which comprises repressed desires and other matter excluded from, but often tending to affect, the consciousness. 

Residual memory persists but the brain is having greater difficulty distinguishing reality because of its increasing inability to process the input it receives.  Your family member’s brain is no longer experiencing the world as you see it and that has to influence how you approach them and their care.   Most of the behaviors that manifest themselves during this stage result from their progressive brain damage and how they perceive their environment. As a graphic example of how the brain’s inability to filter input affects behavior I offer this personal experience: 

My friend Barbara and I were driving to a support group meeting in Syracuse, I meeting often attend when I visit my mother who still lives in Syracuse, and she asked if Tom had ever put his feet on the dash board when I drove him around. Her husband always planted his feet on the dash board as soon as she began to drive. As a matter of fact, Tom did do just that on occasion.  He also kicked and thrashed which meant putting him in the back seat when we absolutely had to go somewhere.  Barbara and I just sat there for a few seconds wondering why this particular behavior surfaced in the car. We had just come from lunch with our friend Ellen who was leading the support group we were about to attend and had been talking about the distortions our people experience and how we consciously make ourselves stop the filter process, our brains do automatically, in order to see their world. Barbara and I, almost simultaneously came to the same answer.

Obviously, the oncoming traffic and the movement of the scenery, (telephone poles),  as the car was being driven forward must have created the impression of everything moving at them. Therefore, they put their feet on the dash board to prepare for a collision. No wonder Tom was agitated when we went for a drive. He must have been sitting in terror in the passenger seat.

I remember that I had resorted to putting wrap around dark glasses over Tom’s regular glasses every time we got in the car during that period. He was less agitated with the glasses on and perhaps the darker tint muted some of the activity he was having to process, I have no idea but it seemed to help. I offer this as an example of what I did in that situation and I hadn’t even stopped to examine why it was happening until Barbara remarked about the same behavior in her husband.  I had just accepted that taking Tom for a drive was a nightmare, a behavior that lasted for a period of about 6 months and then disappeared.  Needless to say we weren’t taking any car trips in those days. 

I urge people facing this illness, professionals included, to step back and try to put themselves inside that person and view the world through their eyes and ears. They might be less overwhelmed by the behaviors and more able to work with them once they understand that there is usually a reason for the behaviors.

By the beginning of this stage the family member now needs total supervision, whether they want it or not. 

At this point, there are only FOUR possible decisions to make regarding your family member’s care!

1. You move in with them.

2. You move them in with you.

3. You hire/find someone else to move in with them.

4. You move them into a facility that will meet their increasing needs.

Their safety and the safety of those around them has to become the primary concern and has to influence all the decisions you, the caregiver, makes on their behalf. Their confusion will not improve, it will worsen, and all the gymnastics that have worked in the early stages, that allowed them independent living can no longer be relied upon. They are not only a danger to themselves, they are a danger to others.

During this phase, every aspect of knowledge that your family member has will be affected. 

That includes every aspect of their education and training, their skills, their religious instruction, life experience, interests, and family chronology. In other words, their history, their sense of time and place, their conscious mind becomes less and less accessible and begins to meld with the sub-conscious.  At times, it is difficult to know whether they are relating a dream, a fragment of what they heard or saw on television, or something that actually happened in their lives.

• Tom could no longer tell time, glean information or relate it from a newspaper, television news show, or movie or relate what he saw to conversation. 

• He repeated conversations, asked the same questions over and over, seemed to have no concept of what ‘leaving in five minutes’ meant. 

• He talked a lot but his words had less and less meaning, his thoughts reduced to words strung together with little structure or connection. 

• Very often his speech resembled the ‘sounds of language’ more than the ‘content of language.’ 

• He could not relate to world events at all anymore and was most comfortable with stories from his early life.  

• He couldn't finish stories he had told a hundred times, often confusing one event with others.

• All of the above were further compounded by his inability to handle space, noise, lighting, and crowds. 

However, it is important for the caregiver to understand that communication is not simply about the use of words placed in the right order. 

To be fully understood is as dependent upon reading the sounds that convey feeling and the facial and body language, as much as it is about the meaning of words. And so, if you observe a toddler first learning how to talk you will notice what sounds like conversational sounds long before you will recognize actual words strung in a sentence. You will notice facial and body language that mimics things parents do.  Since this is the first learning/skill that happens after birth, this learning will be among the last things to go in someone with dementia. 

I recall vividly recognizing sounds and inflections and tone changes in Tom's voice that were so reminiscence of stories he regularly told that I recognized what he was trying to say and he couldn’t speak one word clearly at the time. And, his ‘sounds of language’, often conveyed his feelings in ways that transcended the use of words.  If he had to rely on primitive ways to express his needs, it would be foolish to feel he couldn’t rely on the same primitive methods to read the people around him.

Don’t underestimate the ability of the Alzheimer’s person to respond to your behavior, your attitudes, your manner. If you approach them angry, tired, sarcastic, sad, or fearful they will pick up on those feelings with the same intensity as a young child. If you can approach them softly, lovingly, acceptingly, they will probably respond in like manner unless they are in pain, and fearful themselves.

Most of the behaviors are the result of increasing brain damage and the way in which the brain allows our people to perceive their environment.  

The point is reached when nothing is sure to them and I often felt that even the walls and the floors ceased to exist for Tom as I saw them.  They still have the ability to know that things just aren’t right but they must be filled with fear as they try to navigate a world that is increasingly hostile and foreign to them.  Nothing is like it once was.  Their behaviors often seem insane and that can be very frightening for the caregiver. 

This is the great puzzle solving period of this disease and it is the period of the greatest adjustment for the caregiver. 

This is the time when the reality of what this disease is going to do to your family member finally sets in. This is the time that makes or breaks the caregiver. This is the time of the greatest changes and no one welcomes change.  

• Home environments need to be altered the same way one alters the environment for a toddler.  Areas that are ‘off limits’ without supervision need to be set, the kitchen and bathroom heading the list.  Access to stairs needs to be taken care of.  A general simplifying of the total environment needs to be considered.  Clutter adds to confusion.  Patterned bath towels and patterned wall paper and patterned sheets can add to perceptual problems and affect manageability.  Furniture should be re-arranged to facilitate easy access to rooms and seating, and treasures need to be removed or placed outside the normal walking area or reach of the person.  

• Locks need to be placed on doors, security maintained, ID Bracelets attached, toxic substances put under lock and key and that includes cleaning supplies, paints, tools, and anything you would not let a toddler handle. 

• Valuables need to be placed out of reach, things that are breakable or easily tipped over need to be removed.  

• In many cases, mirrors and other highly reflective surfaces such as pictures, windows, patio doors, breakfronts, need to be removed from their view or covered.  Reflective surfaces increase confusion at night.  They act like mirrors.

• Glass shower doors need to be removed and shower curtain rods need to be bolted to the wall.  Throw rugs, flimsy shower curtains and tension rods, need to be removed.  Just as a baby can get tangled in a blind cord, so can a person with Alzheimer's.

The process of 'proofing' the environment is the same for our people as for a toddler.  It is not necessary to attach loads of recriminations to an act that is about safety for the family member and self-preservation of the caregiver.  

And while we don’t think twice about ‘proofing’ our homes for toddlers, for some reason we need to attach the word 'dignity' (as in 'their dignity'), to the process with our people.  However 'Dignity' is the wrong word to use here.  What really stops us from taking charge in this situation and doing what has to be done is about an indefinable sense of grieving at yet another change in our lives.  Mourning happens as you make these changes and I refer to these events as the "Little Deaths," little deaths that will occur at each and every change you face in this long term journey and while everyone will expect your mourning to be completed when they die, I know from experience that it isn't by a long shot.  

The look of your home is something very personal and satisfying.  To make major changes in its appearance will be depressing for many reasons, all of them valid.   Just know it is part of the process and also know that you are making these changes to accommodate your family member and to make your own life easier.  The things can come back out once your person is chair bound and they are no longer in danger of falling into or breaking your treasures.   For what it is worth, I also went through a period of grieving when I replaced all the items and rearranged the furniture.  That too signaled yet another realization of saying good bye.

This is, in my opinion, the most physically and emotionally difficult time for the caregiver because their person's world is no longer the world the caregiver lives in, and making the leap of faith it takes to rethink and then enter their reality takes an enormous amount of insight, strength and a willingness to be there.  During this stage the caregiver is also at risk and all of us feel these things during this period.  

You, the caregivers will feel  helpless, resentful, tired, angry, abandoned, and trapped.  You may find yourself getting every virus that wafts through your community, your immune system is at risk, your sense of self is assailed and you may get little support from those around you.  Your anger and frustration might even drive those who can help away and you will be told it is time to institutionalize your person by just about everyone you know.

This is not what life was supposed to bring your way. But, depending on how resilient you are, you will also experience moments of tenderness and connection with your family member as evidenced by other caregivers who have been through this phase of care, and you will begin to come into your own strength as a human being if you choose to.

This is the time when caregivers must begin to feel the sanctity of their role.  

The caregiver must not only learn see their role through different eyes they must learn to see their family member through different eyes and they must learn to do it quickly.  One truly learns what "Living in the Moment," is all about during this stage of care. The care needs can change dramatically from one day to the next but, if you’re lucky, plateaus establish themselves and the care settles into an uncertain sort of routine until the next phase of deterioration hits. The only thing you can depend upon is that sooner or later changes will happen and with each change you experience another  'little death.'

It feels like a thankless job, and I am not going to kid you, at times it is!

BUT       

• There are ways to approach your family member that will defuse the situations when their frustrations and behaviors take over.

• There are ways of manipulating the environment to make their world more user friendly to them.

• There are ways to maintain you own sanity when the going gets rough.

The good news is that eventually, all of the behaviors pass.

That is the nature of this disease. One by one the behaviors will be replaced by others until the last stage begins and they become bed-ridden and chair-bound. The physical dysfunction however, will continue to increase.

What they keep during this period is the ability to read body language, respond to a warm, friendly, accepting, helping attitude from their caregivers, and an ability to feel loved and supported. In short, their emotions, their ability to feel rejection, loneliness, grieving, is as clear for them as it is for any child, any adult. That their reactions are based in a perversion of reality is besides the point.  Their emotional response is as real to them as yours is to you.  In fact, there is research to support the notion that just as emotion is the first thing a newborn child learns, that one essential immediate thing they need that is necessary for bonding and for every aspect of their lives, it is the last thing a person with Alzheimer’s still has when they die.

• This is an opportunity to learn about the rewards of unconditional love. It is the opportunity to set aside the old hurts, the old behaviors, the old ways of relating because the chances are you will never get the verbal conformation you think you need to repair the differences between you. 

• You are nearing the end of this stage of caregiving and you are already in charge of this situation.  The choices are yours, not theirs any longer, and for many it is the beginning of a new and often more satisfying relationship than might have happened without Alzheimer’s. 

Other caregivers are your best resource for information.  You need to know that you aren’t crazy, that what is happening is a part of the disease, that you have little control over what is happening to them, but you do have control over what is happening to you.  You still have options and you still have a right to a life.  You cannot get through this period without help and I mean physical help, emotional help, or spiritual help.  And most of all, you need to meet people who have already been through it.  You need to know that there is a light at the end of the tunnel and it isn’t necessarily the lights of an oncoming train. 

It is also the time to begin letting others know about the restrictions your family member now faces.  You cannot assume that anyone understands what is happening just because you have mentioned in passing that your family member has Alzheimer’s Disease.   Remember, most only think in terms of forgetting who their caregivers are and little more, and most bystanders are capable of making snap judgments about your quality of care without knowing much at all about your particular challenges.  The more the people in your immediate circle know about this disease and your needs, the more help they can be.

Caregiving is probably the finest demonstration of unconditional love that exists. It is love with no strings attached.  Even with the loss of speech and the destruction that this stage brings to the process there is still a bounty of connection, love, humor, tenderness and completion possible for those caregivers who choose to look for it. Whether the choice of care is at home or in a nursing home, for the family member facing this disease, to be loved in spite of what this disease does to them is the highest expression of love possible.

For a more detailed description of the behaviors and symptoms 

that accompany this phase of the illness and how to approach them  ...click here!

©2000