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Behaviors and Symptoms that occur in the 
'Taking Charge' Stage of Care

Motor control, eye-hand co-ordination, balance, perception, visual, sensory, and auditory response become affected. 

• Their ability to walk, balance, sit and stand without help becomes impaired. They may look at the toilet and instead of turning around to sit on it, they neglect to turn and end up on the floor facing it.  For men, using the toilet at this stage is particularly confusing because they face it on certain instances and back into it on others.  However, women 

• also experience this phenomena.  Their brain is having difficult processing visual input.  Someone needs to assist.

• They may not see the curb, or the hole in the pavement when walking down the street because of their perceptual problems and they are in danger of tripping over things.  The throw rug in the middle of the floor may appear to be a deep hole or a raised obstacle, patterns on floor coverings and carpeting, papered walls can be translated as 3 dimensional images that must, somehow be circumvented or avoided. 

• Motor skills become very fragmented. They need help with every task.  It is during this period that the constant pacing may began, along with combative episodes, night prowling, and fitful sleep patterns. 

• Feeding becomes limited to hand held food, having lost the ability to handle a knife and fork properly. 

I asked that Tom's meat be cut up in the kitchen in restaurants to save him the problem, or I simply cut his meat for him at the table.  He could eat with a spoon but mostly, he just pushed his food around the plate. He still felt the need to try however and I would experience the phenomena of feeding him while watching him make ghost moves of feeding himself. His hand and arm would mimic putting a glass or fork to his mouth, but he couldn’t hold either of those items long enough or properly enough to make self feeding realistic. 

• There were constant trips to bathroom every night.

Because I experienced my own period of denial and failed to recognize that night diapering could have saved me a lot of anguish, I was up all night, every night doing bathroom duty and changing clothes. Fortunately, he never wet the bed, but we were sleeping together and I awakened very quickly when he began to stir. I had him flipped on to his feet and headed towards the bathroom in what had to be Olympic time.  No one needs to do this to themselves, the problem isn't in using incontinence problems, the problem is in getting over our own hang ups about using them.   

• Public restrooms become impossible for them to navigate without help during this period.

After Tom got lost looking for the bathroom one time too many in public places, I began going with him, to make sure he found it, to make sure his clothes were in order when he left and to make sure he found his way back.  After he got lost in the restroom and not only missed the toilet but wet himself in the process I decided it was time to go in with him.  I took him into the ladies rooms, did what had to be done and kept a little card explaining our purpose, which I handed to anyone who looked askance at what I was doing there.  Aside from our friends thinking I was taking closeness too far and accusing me of being controlling, I was surprised at how easy that step was to take.   It certainly took the pressure off Tom.  For more about this subject click here.... 

• One wonders if the walls appears as flat to them anymore or if corners actually connect.  Hand rails and grab bars may present more of a visual problem to them than help.  In any event, their visual perceptions becomes so impaired that a throw rug in the middle of the floor may look like a hole to them.  The environment presents barriers that precipitate behaviors and you can’t do anything about it until you begin to see their world through their eyes.  

A parent won’t eat his lunch and sits staring at the plate, until the daughter realizes the pictures of birds on the place mat might be the problem.  She replaces the bird mat with a solid color mat and he resumes eating.

• Reflective images in mirrors and glass walls, and windows are distorted because of impaired perception.  The reflections of others may appear as additional people in the room because our people don’t perceive what a reflection is anymore.  Their brain no longer discerns the nuances of what their eyes see.  They may not even recognize themselves in a mirror.  They may interpret the image as being a stranger, particularly if they have lost or gained weight.  The glare from polished floors and other reflective surfaces may appear to be a mirror or possibly a body of water and may also account for an outburst or difficulties in moving them through their living space.  

I wondered why dressing Tom for bed was such a nightmare, with his pulling away and yelling and waving his arms and hands around in a very threatening manner until I realized the reflections from the windows made the room seem as if it was crowded with people.  And who knows whether those people represented friends or foes to him. At the very least it represented loss of privacy.   I removed the mirror and the pictures from his wall, and pulled the shades every night before taking him into his room and the combativeness stopped.

• Extraneous noise contributes to confusion and misinterpretations.  A phenomenon similar to the one deafened people have with hearing aides.  The hearing aid does not filter extraneous sound and the resulting noise is often more debilitating to deal with than the deafness.   Our brain filters sound for us.  We tune out the television in the background because we’ve decided to focus on the voice of the grandchild standing next to us.  People with dementia, at this stage, are unable to do that.  It is all noise to them.  Unless the room is totally quiet and your voice is well modulated they probably can’t hear or integrate much of anything you are trying to do.  Not only that but the tone of your voice and the volume probably telegraphs more to them in terms of your feelings and attitudes than anything you actually say and they will respond accordingly.  

You need to get your family member into the shower because they have messed themselves.   You find yourself faced with someone who is not only uncooperative, they are reaching combative catastrophic reactions. You are unaware of the noise the running water in the bathtub makes, the volume on the television which is blaring from the living room, the conversation being held between you and a relative in the next room, which is probably close to a shouting match considering the need to be heard above everything else.  The cold feel of the tile floor on your family member’s bare feet only adds to his reluctance to cooperate and all of it is compounded by the full scale wall mirror that makes two people seem like eight.    

You are unaware of the noise level because your own brain filters all that sound out.  You are understandably anxious and upset yourself and your feelings of frustration and embarrassment reflect in your body language and voice.  All of  this has to create fear, confusion, and anger in the person you are trying to help.   And you wonder why they are fighting getting their clothes stripped off them and their bottoms cleaned.   The problem isn't necessarily that they refuse to be bathed, the problem is all the extraneous stuff that is triggering their response.

Lower your voice and keep talking to a minimum, turn off the television, have your tools ready so you don't have to fumble for soap and wash clothes, work from behind your person, simplify the interior of the bathroom, remove or cover the mirror, use an accepting and loving manner and the problems might stop altogether.  

And stop talking about diapering them. 

And start talking about loving them.

Reasoning ability is greatly impacted by now.

You can no longer explain anything in detail to them. They are still able to participate in family life, they are still social beings and enjoy connection with others, but the visits must be short and choices must be kept simple. Don’t burden them with open ended questions, give them simple choices and keep the sentences short.

Don’t ask them to decide whether they want to go to the doctor or not, or whether they want to take their medication. That is your decision.   Whether to have peas or corn with dinner, that is theirs.

• Complex conversations will no longer be possible and you cannot rely on them to remember anything of an important matter. Their short term memory is gone and will not permit it. It is probably now too late to have them sign any legal document because their comprehension is too faulty but that decision is best left to a qualified psychologist, preferably a neuro-psychologist.

• They will be unable to follow directions or solve simple problems such as shutting off water taps, or stove burners, or using door keys, or finding the rest room in a restaurant unaided.

• Recognition of relatives and friends becomes haphazard partly because their memories are being rooted in earlier times in their lives.  They don’t recognize grandchildren because the grandchildren are a part of newer memories which are fuzzy at best.  They mistake your daughter for you because their mind remembers you the way you looked 25 years ago clearer than the way you look today.

• Displaced memories interfere with functioning because they are erroneously attached to present situations. Something you say in passing triggers an old memory that becomes as real and as new as if it just happened and they obsess about it.

• Some become docile, others become aggressive, many become depressed.

• It is when you learn to pick your arguments.  Don't sweat the small stuff.

Many develop sleeping problems which are further impacted by ritualistic behaviors, pacing and wandering compulsions during this period.

Sundowning, is increased agitation that happens as the day wears on.  They tend to function best in the mornings and can become quite difficult by nighttime.  Caregivers often note that eating dinner out becomes impossible at a point in care and as the illness progresses, lunch is lost and then breakfast.  Their world is shrinking.  Their ability to process input is greatly impaired.  Noise, shiny surfaces, waiting to be served, activity of people around them, sounds of traffic, waiting for the light to change, all of these things bombard their senses and leave them overwhelmed. Taking them out for the day may not be the kindest thing you can do for them.

At its most bizarre, pacing can go all night and much of the day. In  my case it lasted for over 2 years.  The nights of uninterrupted sleep could be counted on the fingers of my two hands during that two year period.  People asked how I could do it, live through it.  My answer is that I adapted.  

• I moved to the next bedroom 

• Bought a child monitor 

• ‘Proofed’ Tom's  room so that he could pace safely. (took out throw rugs, knick knacks, pictures off walls, and left his bed and his dresser).

• Installed a peep hole in the door that gave me a 180 degree view of the room so that I could observe him without opening the door, (thus awakening him). 

• Piped soft music into his room to blot out extraneous noise. 

• Painted the woodwork the same color as the walls to cut down on his finding and rattling the door. 

• Learned to respond to noise on a prioritized basis, (similarly to what I did with my children when they were babies).

• Removed lamps and installed overhead track lighting with dimmer switches.

• Replaced the windows with Plexiglas in case he banged into them by accident.

• Removed the blinds with their cords and put up opaque shads that blocked sunlight in case he did sleep late thus giving me some sleep time myself.

...and somehow I survived.

As an aside: My sister Sandy and her husband, Phil, adopted twin baby boys who also never slept for two years. Somehow they survived as well and no one suggested that she put the twins in a nursing home because her sleep was interrupted. She was the same age I was when I started on this journey with Tom.

Sleep deprivation is sleep deprivation.  It does terrible things to the body and mind no matter what your age.   While there are ways to get through this period it is the great leveler in terms of the caregiver’s ability to deal with this disease. 

It is alright to say, ‘I can’t do it anymore.’

Much of their compulsion to constantly move evolves out of fear and frenzy over what is happening to them and a constant need to redefine their space.  Much of what we interpret as ritualistic behavior, the constant reaching out, touching, fiddling with things is a result of this need to redefine space.  It can also be a compulsive activity resulting from brain damage, a sort of ‘nervous tic.’  They can’t touch the wall, while walking down the hall, just once and know it is stable, solid, and supportive. They need to touch it over and over because their minds won’t hold the information they gain by a single experience.  They may stroke the edge of a table while walking by it, because their brain can’t hold the dimension of that piece of furniture long enough for them to walk the length without bumping into it. The brain no longer sees or utilizes what their eyes see. They may not reach for a stair rail when they feel unsteady because their brain has ceased to inform them of its function. They are constantly in search of an environment they can trust and feel secure in.

Ritualistic behaviors such as facial grimaces, body movements and pacing patterns sometimes develop.  These movements can be very annoying to the caregiver and there is little that can be done to stop it.  

Problems with communication and understanding are chronic.  Many develop speech patterns that are repetitious and ritualistic in nature.

They might focus on a single word or phrase and repeat it for hours. They might ask the same question over and over. Language may deteriorate to the extent that foul words or swear words creep into their expression.  As one layer of language dissolves a lower level emerges. They may resort to another language, either their native one or one they learned as a second language.  

At one point, Tom made more sense in German, a second language for him, than he did in English. The explanation is that his knowledge of German lived in a part of the brain that wasn’t as traumatized and the rest.  Eventually that ability also passed.

I think this is a good place to talk about what it is means to lose language for someone with this illness, because there will be a marked loss in language skills during this period. Some will lose the skill completely, others will keep the ability to say the words but they will lose the ability to make sense.

It takes a great deal of energy to communicate in this manner.  However, understanding intent and then getting a legal verification of their wants and needs is somewhat unrealistic at this point. Even if you get a definite response a minute later you can get an entirely different answer. They will repeat questions, argue points that make little sense, and they will, at times, seem to badger you for answers to questions you can’t answer. Some of the verbiage they use will have a familiar ring to it however, and if you are around a young child in the process of developing their language skills you might see the comparison. They will lose language skills in much the same manner a toddler develops theirs.

They may hallucinate, become combative, experience paranoid ideation, depression and hyper-activity.  

While the symptoms of hallucinating, combativeness, misconceived notions, paranoid ideation, depression and hyper-activity, may seem similar to those with chronic mental illness, the process of what is going on in the brain is quite different for Alzheimer’s patients.  

Where a psychotic patient still has the ability to construct a plan and follow through with a degree of ability that is almost cunning, a person with Alzheimer’s Disease won’t be able to think out and follow through on their actions with any real degree of ability.  Psychotic patients still have their functional abilities whereas Alzheimer’s people are in the process of losing theirs.   

I once saw a chronic schizophrenic in the throes of a psychotic episode at a state mental institution in New York.  I was on the ward to pick up a file when one patient picked up a cue stick and hit another with it knocking him unconscious.  He then turned on to those nearest him, his rage so complete it took three male aides, and several frightening minutes to subdue him and several people were injured before he was subdued.   An adrenalin rush such as that one is a frightening thing to behold.  He might very well have killed someone.  I share this experience because:

There is a big difference between being combative and being dangerous.

Were there times when I got pinched, or accidentally slapped, or knocked off balance by Tom?  Did I sometimes end up with a black and blue mark, or scratch?  Yes, but I also remember getting scratches and kicked by my children when they were toddlers.  Tell me, were they dangerous or just children behaving childishly?  Was my husband dangerous or just confused and resorting to the only behaviors left to him to exercise his fear and discomfort?   By the time this level of acting out happens most Alzheimer's people are so debilitated they can't find you if you get out of their view.  Move behind them.  

You can get out of the way of a combative episode.  You cannot escape a psychotic one.  That is the difference.   Instead one has to consider what triggers the episode.  As demonstrated above, the majority of episodic behavior is the result of how they were approached during an overload of sound and other stimulus in their immediate environment.  And what do you do when they blow?  You get behind them!

By moving behind Tom, who was several inches taller than I, putting my arms around his waist and gently but firmly removing him from the area that triggered his reaction, using my body as the moving force, and placing him in a safe room where he could rant and pace without any stimulation to add to his fear and confusion, his episodes rarely lasted more than a few minutes.  I created a quiet space for my husband, similar to the time-out room my son has for my grandchildren when they act out.  It wasn't incarceration, it was a safe environment where he could wind down at his own pace without the use of drugs.   For a more complete description of this 'safe room,' click here....

There are two ways to look at the combative behaviors in this stage of care and the way you choose can make the difference in how you handle yourself as the primary caregiver.   You either see yourself as the victim or you see yourself as the one taking charge of a volatile situation.  It is difficult to separate yourself from the behaviors you face, but you would do it as a parent and you can do it as a caregiver.  It really is the same process.    

The questions are:

• Do Alzheimer’s people get angry?

• Do Alzheimer’s people get depressed?

• Do Alzheimer’s people become sad, or experience mood swings?

• Do Alzheimer’s people obsess and ruminate over things that seem inconsequential?

• Do Alzheimer’s people feel fear?

• Do Alzheimer’s people feel abandoned?

I suppose the next question should be:

• And why shouldn’t they?

Stop to think about how helpless they must feel, especially in the early and mid-stages of this disease when they still have some understanding of what is happening to them. They know things are different, they are being treated differently, and no matter how hard they try they can’t make their lives work anymore. I don’t know about you, but I’d be angry and hurt and depressed, and anxious, and difficult a good deal of the time.

While many early stage people suffer clinical depression as a result of what Alzheimer’s is doing to them, that is also true of people facing terminal cancer and other illnesses.  Medication may be helpful in elevating their mood so that they can then process their feelings.  However, I really question the value of giving anti-depressants to a later stage individual who really can’t integrate what is happening to them anymore, or follow through on harming themselves, or engage actively in the counseling process.  Drugs in and of themselves don’t make people feel happy or content and no drug is going to take away the need to grieve.

I once heard a gentleman at a seminar ask what was wrong with drugging an Alzheimer’s person. 

"Why shouldn’t they be allowed to exist in a blissful stupor?   What is wrong with that?" 

That doctor never asked this man what drugs he had in mind, and I know I wondered if he was looking back with too much fondness to a different time, a different place, a different sort of mushroom.   If that thought occurred to the doctor on the panel he let it pass.  However he did smile before he made the point that there is nothing blissful about a stupor that is drug created to an Alzheimer’s person.  There is usually a trade off in functioning when psychotropic medications are used because of the side affects.  He finally stated: "There is no magic pill."

Tom developed crying jags near the end of his life. They were terrible to behold. They seemed to come upon him for no reason and they passed as suddenly as they occurred.  His eyes would fill with a combination of fear and abject grief and he would cry only there were no tears. He had lost the ability to make tears.  Just remembering these episodes bring tears to my eyes.  My response was to hold him and comfort him and tell him I loved him until the episode passed.

A Certified Nursing Assistant, who witnessed this behavior, suggested that I ask his doctor for a prescription for him.

"For what?"

"To stop his depression."

"Why?  What would be the point? I asked.  Would the medication make him feel better?  Do you even know what he was crying about?  Have you ever seen a dying patient cry?"

That closed the subject as far as I was concerned.  I felt that if Tom still had the capacity to feel anything, I was not going to deprive him of it because it made others feel uncomfortable. 

If the behavior becomes chronic, that is cause to call your doctor.  It may be the result of sleep deprivation or a chemical imbalance that appropriate use of drugs can help.  Do not self medicate.  If you have made all the changes in the environment possible and you have made a concerted effort to curtail your anxiety during these episode, the next step is the doctor and possibly a respite break of a few days for yourself so that you get away and reconnoiter. 

* Tom and the Police     What sleep deprivation and depression can do to someone with AD

Many develop myoclones * or uncontrollable tremors.

1. Clonic spasm of muscle or of various muscles. Normal individuals not infrequently experience an isolated myoclonic jerk or two in drowsiness or light sleep.  2. Any disorder characterized by scattered, irregular, arrhythmic jerks of one or more muscles of the limbs, trunk or face, resulting from paroxysmal discharges in the central nervous system."   

 Blakiston’s Pocket Medical Dictionary 

These jerks can become quite violent and the caregiver can be swatted rather hard if in the way of one of these spasms.  They cannot be controlled without medication and even then the trade off because of side effects may not make it worth the while.  One can learn to work around them and just know they happen.  You make adjustments such as putting pads on the sides of beds so they don’t bang into the bars of their hospital bed or the walls and work from behind them instead of in front of them where you are less likely to be in the range of fire.  (It is just as easy to close zippers and snaps standing behind someone as in front of them.  It is the same principle we use in tying a man's tie).   

A home-health aide once complained to me that Tom had hit her, she would have to report this to her superiors and Tom’s suitability for continued service would have to be re-evaluated.  She implied that I would have to medicate him or she wouldn’t return.   She felt she was being abused.  I explained about the myoclones, that medication didn’t work for Tom, and showed her how to do the same tasks from behind instead of in-front of him.  For what it is worth, her attitude all around sucked.  Clearly she did not like working with an Alzheimer's population and had little interest in learning to work with them, she was hardly a helpful member of my team.   I replaced her. 

And with what is truly a profound level of loss, we still can’t be sure about what they do or don’t understand at this stage of the illness.

I am reminded of a scene in the movie "Awakenings," in which the Dr. Sayers’ character asks his mentor about his patients with Encephalitis and whether or not they had awareness of the time that passed while they were in their stupor, a stupor that lasted for decades.

"NO! Unfortunately the infection did not spare the higher functions of the brain."

And ‘Dr. Sayers" responds: "You know this as a fact?’

And his mentor replies: "I know this because the alternative is unthinkable."

Having been through this illness on the most intimate of terms, that line made the hair on my neck stand up.  We tend to write off those who have this disease because we need to believe they have no awareness of what is going on around them.  As a caregiver I have to say, I had no idea how much my Tom knew, remembered, or felt after he lost the ability to communicate effectively.  But I know he responded to affection and being treated as if he mattered until the moment he died.

We have no way of knowing if the input is clearer than the output.   One thing is certain, they become very adept at reading your body language, your tone of voice, your inflections in speech and they are acutely aware of their own emotions and their sense of comfort.   The fact that their speech is profoundly affected as is every other means of communication does not mean they have lost their basic human needs for respect, attention, nurturing, love, or dignity.   Those needs are still within their being and it is only through the attitudes of those who care for them that those needs are met.

So how unaware were these people, even at their advanced stage of illness?   How aware was Tom of the above mentioned aide's attitudes towards him.  In contrast, my regular aide had no problems with Tom, and the new aide I hired also had no difficulties, but then she was also amenable to doing things my way. 

To continue to Incontinence Care for the Mid Stages  click here

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