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The Assisting and Supervision Stage of Care ©

Stages 1-4 on the Reisberg (FAST)          Duration: 2-4 years on the Gwyther Scale

... In terms of the early 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: Age 12 and up:   (Reisberg, Figure III)
Between the ages of 8 and 12+ years, your role as a parent has changed several times.  If you have done your job, your child already has the basics to care for himself and you have to learn to trust their instincts, their need to test the waters of life and their right to develop into the adults they will become.  It isn’t easy to give up those controls, after all, we do know what’s best and they don’t.  We are the ones who learned from experience they haven’t yet had.  It would all be so simple if they would only listen to us, but they rarely do.  However, pulling away from your authority is essential for their development if they are to become responsible for their learning process for the rest of their lives.  Your role becomes one of supporting, suggesting, advising, accepting and being there when needed without overt judgment or false pride.  If you can’t make that transition, you very often stand the risk of losing them altogether. You are the mother duck who has taught her ducklings to fly and now must let them.

Dementia Deterioration: The Early Stage, Stages 1 – 4 on the Reisberg Scale:  
As the caregiver during this phase of Alzheimer’s your role is startlingly similar except it is in reverse.  You are faced with the beginning of changing roles with your family member and you are also experiencing reluctance in the process. You are obligated to step into areas where your person has been autonomous since the age of 5 and you need to be there to fill in the gaps and provide an environment that encourages and supports remaining abilities instead of developing ones. They still have conscious memory of who they have been and who they are, and it is therefore important to step carefully and respectfully into their private space so as not to demean or infantalize them. But stepping in is inevitable and it cannot be avoided.

As vigorously as my son grasped at gaining independence, Tom grasped at hanging on to it. As the significant other in both these people’s lives it took patience, experience, an ability to be firm when necessary and soft when required. I learned to pick my arguments carefully, and I realize now that my son who is in his 30’s, and my husband who has long since passed through this phase, that what allowed any degree of success on my part was how each of these people interpreted my resolve. Just as a child senses indecision Tom sensed it. Doing what had to be done with a degree of confidence and determination not only helped me through the difficult transitions, it helped my son and my husband respectively. And in both cases I relied on common sense as much as any skills I might have picked up along the way.

Conscious:* [L. conscious, knowing, aware, from conscire, to know with, be congnizant of, from com-, with, and scir, to know.  1. Having a feeling or knowledge (of one’s sensations, feelings, etc., or external things); knowing or feeling (that something is or was happening or existing); aware; cognizant.  2. able to feel or think; awake.  3. aware of oneself as a thinking being; knowing what one is doing and why.  4. Painfully aware of oneself; self-conscious; embarrassed. 5. Accompanied by an awareness of what one is thinking, feeling and doing; intentional; as, conscious humor.  6. Known to or felt by oneself.     *Webster’s Universal Unabridged Dictionary of the English Language

This stage of the disease seems to be manifested by the deterioration of conscious brain function.  

The brain’s ability to access the data that has been stored there throughout the lifetime and integrate new learning becomes more and more compromised as this stage unfolds.  We function because we are able to store information and retrieve it at will.  Once our ability to organize, store, find, and use the information we need to manifest our thoughts becomes impaired, we are in deep trouble.  And by the time this event becomes noticeable we are well into the early stage of this disease and an enormous amount of brain damage, damage that cannot be repaired, has happened.

The symptoms begin with simple word finding problems, (aphasia) memory lapses, forgotten appointments. The most recent learning will be the first to go.  We speak initially in terms of ‘Short-Term Memory being affected,’  but, ‘Long-Term Memory is also being whittled away in the process.

Short-Term Memory is the key factor in learning. It not only allows information into the brain, it holds, organizes, and retrieves that information for immediate use. Eventually it converts the recent memory into Long-Term Memory.

Long-Term Memory stores, organizes, and recovers learning for indefinite periods of time. Long-Term Memory houses our history, everything of which we are made.

This early loss colors so much of how we function that it is truly devastating to daily functioning and it occurs while most Alzheimer’s patients still have awareness of these losses.  How do we apply yesterday’s events to our conversations today if we can’t find or utilize the necessary information?

Ironically, it is often the family members who are the last to notice changes because of denial, the amount of time spent with the person, and the social aspect of family life as opposed to the task oriented aspect of work.  The Significant Other who lives with the person very often becomes a cohort in crime, covering up the problems from other family members.  This person will often continue to deny problems exist even when the behaviors become obvious to even a casual observer, because their denial is that complete. 

Also, throughout this period, social skills remain fairly intact so short term contact is fairly routine.  There are entire family units running around with their heads in the sand trying to call on every defense mechanism they have to deny what is obviously happening.  The reason is that the nature of these relationships are anything but superficial.  They run deep and they run complicated.

A daughter is deeply hurt and feels her father shows no concern for his grandson because he fails to ask how his grandson is, ‘knowing,’ (because she told him the previous week) he had just broken his leg and needed emergency surgery. "I can’t stand his lack of concern any more." she is heard to say. "He’s like he’s always been, he’ll never change, I don’t know why I even bother."

How ready is she to examine what are really major changes in her father’s abilities, given their relationship and the predisposition she has regarding their relationship? And how much time will pass before she even begins to question his behaviors as having significance?

While the beginning of this stage is demonstrated in simple lapses of memory, that just scratches the surface of what is actually transpiring.

What begins as forgetting appointments is then manifested in behaviors such as turning on the stove burners and not being able to turn them off, or worst yet, being unaware that they are on.  Their brain has stopped holding important information long enough for them to act on it, and they have also lost the ability to organize the steps to follow through even if they become aware of the problem.

• They lose their train of thought while talking because each new thought takes precedence, and they are losing the ability to relate past thoughts to the new ones.

• Their brain has great difficulty prioritizing pertinent information and that relates directly to the functions of short-term memory.

• They have trouble writing basic reports, or taking care of mail because of word finding problems, impaired concentration and problems with the abstract nature of transferring thoughts to the physical act of typing or hand writing a note. The parts of the brain that connect thought to action are being severed.

Short term memory is reduced to moments by the end of this stage of this disease and ceases to exist at all as the mid stage unfolds. While this is happening long term memory also begins to deteriorate.

Long-term memory holds our history, everything we have learned from birth. Time and space becomes affected and is manifested in the chronology of the events of their lives becoming muddled. They can no longer recall the details in proper order and they sometimes confuse old events with similar, but new events that are happening.

Rote Memory is also beginning to be affected.  Because of this all the tasks we learned to do by rote as children such as dressing, using table utensils, brushing teeth, using the toilet, all those tasks we do so well we don’t even think about them while we do them, begin to deteriorate.

Tying a shoe, hooking a bra, getting into panty-hose, tying a tie are in the process of being lost. They can no longer dress unaided because they can’t work the zippers, snaps, Velcro, or buttons or figure out the order in which clothes go on, or whether they are inside out or not.  Shoes go on the wrong feet.  How do we do any of these things when the brain can no longer find our arms, hands and fingers or tell any part of our anatomy how to move?  Much of what is happening with physical ability is because the brain is losing the means to communicate with the body.

Think of the complexities involved in the combination of muscles, and sinews, and joints needed to allow us to simply lift an arm with purpose and you have some conception of the role the brain plays in everything we do.  We can’t even envision the order in which everything has to work to enable us to do that simple task.

Try to describe how to tie a man’s tie without demonstrating it and you get some idea of how complex even the simplest of tasks are.  You also get an idea of how pointless it would be to expect them to follow directions or learn bladder control exercises when urine incontinence begins to happen.

• Operating a remote control, the radio, television, telephone or answering machine or fax, or the washing machine, the tub, the stove, the locks on the door, all begin to disintegrate.   

• While we can dress ourselves, while listening to the radio, while holding a conversation with someone, they can barely do one thing at a time.  Each step of every task needs to be focused on individually, but the sad reality is that they can no longer organize the order in which tasks need to be completed.

• And with the loss of rote memory goes the ability to bathe unattended, use the toilet, brush teeth or hair, clip nails or attend to the logistics of uncapping bottles, toothpaste, and deodorants. I could list every task we need to accomplish in order to be independent human beings, but I think I’ve made the point.

However, and this is very important: In spite of increasing word finding problems and speech problems and problems with syntax and sentence structure, which all begin to deteriorate at this time, they still have awareness on levels that aren't easily defined.  They still can figure ways to circumnavigate the things they can no longer do by asking others to do them for them.   Depending on the length of contact, they will seem normal. …..whatever that definition happens to be.

I had no idea Tom could no longer read handwritten material for months.  I would come home, he would hand me letters and cards, I would comment about the content, and he would glean what he needed that way.  His handwriting deteriorated to an unreadable scrawl during this period and by the time he entered the mid-stage his signature was unrecognizable even though he knew full well what a signature was.  He could still read printed material although he couldn’t hold much of the information for any great period of time or utilize it in conversation unless those around him made the effort to jog his memory during the conversation.

The sociability skills, as stated before, are still working. However, our people also feel extremely vulnerable, and they are vulnerable.  Try to imagine the panic they must experience, the vague sense of losing control, of not being able to find anything, not in their physical lives, not in their mental lives.  Imagine the unmitigated need to cover up and appear normal to everyone around them, and then imagine how draining, frustrating, and sad that effort becomes.

As this stage progresses, the distance between immediate and old memory will widen until only the events of the distant past will remain accessible and eventually, the ability to express even those memories will be taken away, and I emphasize the word ‘express’ because their communication skills become so affected that it is difficult to differentiate between loss of knowledge/memory and loss of communication skills at this time.

This is the time when the caregiver begins to enter the space of their person.

1. In the best of circumstances it can be a time of renewal, a continuation of a positive relationship already established and the building blocks to a deeper connection.

2. It can also be the beginning of establishing a relationship gone sour, a time to bond and to put aside the old memories and begin anew. It can become a time that is rewarding and fulfilling for both of you.

3. It can become a time to widen the gap even more so. Family history is often too debilitating to cope with. This illness does more to drive families apart than almost any other.

Whatever the dynamics that existed in the family unit prior to the onset of this disease, one thing is now certain; regardless of the quality of the existing relationship be it good, bad or indifferent, for whoever it is who becomes the primary caregiver this is the beginning of  The ‘Commitment.’

• From this point on, someone must be there to help them. Once the symptoms become obvious they are no longer able to do it entirely on their own any more and their dependence will only increase as this illness progresses.

• It is a difficult time that is characterized by the beginning of changing roles, and the careful creating of an atmosphere that will allow your family member to function at their highest level of achievement for as long as possible with as little anxiety and stress as possible.

• This is a heart wrenching period for all parties because the caregiver is trying to preserve the independence of their person knowing their person is still aware that they used to be able to do the things you now must help them with.

• And they will not go quietly. Dylan Thomas said it all when he wrote:

"Rage rage against the dying of the light."

It takes patience, creativity, energy, an ability to deal with loss and grief, and it takes a willingness to do it.

My friend Debi described it as dealing with an unplanned pregnancy.  Since she was unable to have children, she said she found her caregiving as an opportunity to learn about nurturing, an opportunity that enriched her life in incalculable ways.  There are others of us who would describe the taking on of this challenge as preparing for war. And make no mistake, it often feels like war, but, even in the midst of unbelievable situations, humor, love, honor, strength, resolve, warmth, and peace surface almost of their own accord to sustain and nurture the human spirit.  And like our youth who face the uncertainty of battle with little more than guts, it takes guts to face the uncertainty of this long-term battle called ‘caregiving.’

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