Pearls for Caregivers

PEARLS FOR CAREGIVERS

H. E. LOGUE, M.D.

PEARLS FOR CAREGIVERS

H. E. LOGUE, M.D.

Website: www.heloguemd.com

E-mail: heloguemd@amhsinc.net

Reproduction permission is granted for personal use

where proper credit is given

To reproduce en masse or for profit contact H.E. Logue, M.D.

PEARLS FOR CAREGIVERS

DEDICATED TO

Caregivers Everywhere

AND ESPECIALLY TO MY DAUGHTER

TAPLEY MARCELLE LOGUE-LOPEZ, C.N.A.

PEARLS FOR CAREGIVERS

Invitation

This is a work in progress. It is offered as it progresses.

Anyone with a pearl may e-mail, snail mail or fax it to me. If in my judgment it is complimentary to this work, I will add it and give the author credit unless you ask it to be anonymous.

All Pearls are welcome.

You may also reach me by e-mailing to pholly@amhsinc.net

Title Page

Invitation to Readers

Contents:

i. Acknowledgements

ii. Introduction

iii. Instruction to Reader or Facility

iv. Four A’s of Alzheimer’ Disease

v. Caregiver Legacy

vi. a. Expectations of Early Dementia

b. Expectations of Moderate Dementia

c. Expectations of Advanced Dementia

Pearls:

1. Touch

2. Talk to me

3. Laugh

4. I’m Cold

5. I am Hungry

6. Motion

7. Love me as I am

8. The ADL tango

9. She stole my watch

10. Caregivers beware

11. Encourage me

12. I am a veteran

13. Refrain from Destructo therapy

14. Observations

15. Hallucinations and Delusions

16. This is not my dad

17. Am I a different person?

18. Sing to me

19. I want to go home

20. The futility of arguing

Winner PCA (Patient Care Assistant)

Attestation page

About the Author

Acknowledgements

I extend my grateful appreciation to Peggy Holly, my office administrator, who mercifully accepted this added task of transcribing all the dictation for this project and acting as my human dictionary as well. Thank you for accomplishing this task and for many in the past where you have always been there for me.

You are the exceptional, most loyal and enduring Administrative Care Assistant.

My thankful appreciation goes to Dianne Moore, MHT (Mental Health Technician) who has been unsurpassed in aiding me in my professional caregiving to thousands of patients.

To my colleagues and associates who have given me the honor and privilege to be a fellow caregiver.

INTRODUCTION:

An important part of being a good caregiver is to be a good teacher. When any of us have good and useful knowledge and/or skills we must pass them on to students. All who will listen are students.

When we help someone in need it is a blessing to that person and to ourselves as well. When in the act of helping that person in the presence of a student or in relating the event to a student who learns, then we are passing along our knowledge and skills on an ever expanding roster of caregivers.

This collection of pearls that I have found useful is to do my part in passing them on.

You are invited to join in and participate. Send me your pearl(s) at the web site above or the e-mail.

If your pearl is selected to be included please understand that by sending it in you automatically give permission for it to be included with or without editing. When we add your pearl it becomes part of this copyright You must indicate whether or not you would like to be given credit so that your name can be attached. If you do not specify that your name can be used, it will be left as anonymous.

Instruction to reader or facility:

If you are reading this on-line simply enjoy. If you are reading this as a part of a staff education then behind each Pearl you will find a sign-in attestation page to acknowledge that you have read that Pearl and on what date. This serves two purposes for your supervisor. One is to know that you have read it and the other is to hold you accountable that you know this about caregiving.

The facility may alternately ask you to sign one page that you have read them all.

Four A’s of Alzheimer Disease

A good patient care assistant for dementia will know the four A’s of Alzheimer disease, pretty much the same for all dementias.

1) Amnesia – I have trouble with my memory. It starts subtly with “senior moments”. It starts as a slow progressive loss, but the farther we go into dementia the faster it gets. The final stage is often frighteningly rapid.

2) Agnosia – I can’t remember the names of things and that is embarrassing. For example, even my children’s names. I have trouble naming things such as a knife or fork, or a wallet or shoe or a car or watch. Help me with names please. Don’t make me flounder and become frustrated. Help me.

3) Aphasia – I have trouble expressing myself. Expressive aphasia. Sometimes I get really agitated and it irritates me when I can’t tell you what I want to say. Please tell me “it is all right”. Comfort me. Work with me to help me get across my message. I might be trying a crude pantomime. In the beginning this can be mild language problems but can deteriorate to gibberish, sometimes called “word salad”. Sometimes I can’t process or comprehend what others say to me. Comprehension aphasia. This is maddingly frustrating to both of us. Each of us try and try, but the harder we try the more frustrated we both become.

4) Apraxia – I forget how to do things such as walk, brush my teeth, feed myself or dress myself. Please assist me. Sometimes when you do, it will trigger the memory for me of how to do the activity. This also is very frustrating for me. Please be patient with me. Help me with the things I can’t remember how to do.

To help remember these think of amnesia being in the head, agnosia not remembering the name of the nose, aphasia not being able to speak and apraxia not being able to use your hands. Hint – head, nose, mouth and hands.

Caregiver Legacy

Our caregiver training begins with children. Sometimes they are our own and sometimes the children of others. We nurture them and help them write on the memory of their brain their progression through the first several chapters of their life and eventually into mature independence.

The caregivers, perhaps nannies, etc. who did this for a profession may years later be a caregiver to the parent of those same children. At the behest of those grown children the caregiver may be called upon to be a caregiver to their parents as they write their final few chapters.

At first there are lapses and mistakes. The affected person will try to hide or cover or laugh away the mistake. We laugh with them, but the mistakes progress until eventually it is tantamount to hitting the proverbial brick wall of no return. The final chapter begins after they have lost sound judgment, proper etiquette, social grace and have lost a great deal of memory including who family members and friends are. We can see but they do not, the removing of bits and pieces of their life including people, life events, accomplishments, aspirations, thrills and disappointments as they move backward deleting as those go, finally reaching their infancy of wanting only food and comfort. Even significant segments of their life may be cut out or dropped completely including such things as places lived, major events, travels and other important functions. They want to be warm and to not hurt.

At this stage they need to feel love, but they are unable to express it, any more than the unwanted, unloved infant who develops marasmus (infant depression) and will die from it, if not recognized and treated by a caregiver.

The end stage dementia person needs the same understanding patient care assistant as the infant with marasmus. When they feel unwanted, unloved, insignificant and uncared for they become depressed and prefer the comfort of death.

So be kind, comforting and loving to them. It is our privilege and calling to be good caregivers, the raising up of the next generation and on the easing down of the fading generation.

Remember to ease me down gently and lovingly and say a prayer that when your time comes your caregiver will be like you.

vi.a Expectations Early Dementia

As a loved one, or a caregiver, there are things you should reasonably expect from someone with dementia. Knowing this and expecting this will help prepare you to not be so surprised or hurt.

If you live with someone or have family members in the senior age group expect senior moments. When you see senior moments acknowledge for yourself, ‘this could be the beginning of dementia’. Possibly it is not, but keep an expectant attitude.

In the early stages of dementia expect it to develop slowly, maybe even imperceptibly. This is even more likely if the person is in a fixed routine. This stage might last a year or two, or even three. When they are in this stage and when you notice they are having difficulty with non routine things such as balancing a checkbook, making plans or basically any type of problem solving and also difficulty understanding or following directions expect this to be some form of dementia. Be careful with this because it is easy to give them a pass, such as, they were just not thinking or everybody does that. Expect them to be hurt if you use the word dementia. Suggest to them that you have noticed a couple of memory slips and you want them to see their doctor and get some memory pills. Make sure your doctor is sensitive to these issues in how he deals with early dementia patients. If he is not, then I suggest that you see a geriatrician or a psychiatrist familiar with dementia treatment. Medications started early, particularly some combinations of medicines can give early dementia patients another couple of decent years. Furthermore, medicines are getting better and better. Research is progressing.

This is the stage, if not accomplished earlier, that you should get a DPOA, Durable Power of Attorney.

vi.b Expectations Moderate Dementia

When the person is routinely forgetting appointments, forgetting that they have something in the microwave or on the stove, or to take their medication, or to bathe, they have reached the moderate stage of dementia. This stage will appear to be developing more rapidly than the early stages. Look at it this way, if someone loses a few points off l00 it may not be that obvious. But, if they lose a few points of 70 or 60 it becomes quite noticeable. Expect them to be more defensive, demanding. They may demand “I can do it myself” (much as a child might) and yet they frequently require help with something. It is a very awkward stage of dementia.

Try not to be confrontational or argumentative but rather understanding, diplomatically helpful and reassuring. Expect angry outbursts at you and others, at least in the latter part of the moderate stage. Expect hurtful comments. Expect to be called by a sibling’s name, or even a friend’s name. Expect to believe they are doing this intentionally because at times they will unexpectedly sound brilliant. Expect ethnic or racial slurs and to be accused of stealing from them. Expect to be confused as to what to do. Do you let them stay in their home, living independently? How will you handle their mistakes when they are scammed or give inordinate amounts of money to their newfound friends, or favorite charity? When do you step in and get a Durable Power of Attorney and put controls on their finances, or even get a conservatorship. Expect to not know what to do and to feel guilty about doing anything. Expect to feel the need for help, seek help from your treating physician, a psychiatrist, a social worker specializing in geriatric issues and attorneys who specialize in elder law.

Expect to bite your tongue. Expect to lose your cool and say things you wish you had not said. Expect to be tired and frustrated. Expect to feel unsupported by family and friends.

Most of all expect the need to pat yourself on the back and survive this. You must believe in yourself and that you will get through this. You may need to be stronger and more firm than you are accustomed, but it must be done for your sake and theirs. Trust me on this.

vi.c Expectations Advanced Dementia

Eventually dementia will rob the person of all adult normalcy, social grace, judgment, how to eat, when to eat, what to eat. They may not eat food and try to eat the napkin or styrofoam cup or in some cases even excrement. Expect the need for professional help, sitters, or nursing home, or even hospitalization.

Expect episodes of psychosis/delirium which can be precipitated by any additional stress such as an upper respiratory infection and especially a UTI (urinary tract infection). Just these added stresses will be enough to “blow the fuse” and cause them to lose what control they had and to become psychotic. When the stressor has been removed they return to their premorbid state most of the time. Occasionally they remain psychotic.

Often they will be combative when you try to bathe them, or shave them, or dress them. They may not understand or may not want to be bathed or dressed. Without warning they could do serious damage by hitting you in the eye. Expect the unexpected, be cautious, and be self-protective while being mindful of their needs as well.

Expect these final stages to go rapidly. When they are not eating properly or taking fluids properly, their organs begin to fail. Their kidneys shut down. Their lungs get pneumonia. Instead of swallowing they may aspirate.

Expect their demise to be earlier than you want and to feel that you have not done all you should have. Expect to be asked about “code status”. As their mind is ravaged it will deteriorate to the point that they become unaware of themselves, their surroundings, their family and their life. They may not have prepared a Living Will. They may no longer be capable of making informed decisions for themselves. You must consider what you would want for yourself and to make the decisions as to the best course for them. This can and does cause family dissention. Be wise, discuss and plan ahead.

And, one final thing, expect them to hear you even when they are unresponsive. Hearing was developed in the womb and is the last sense to go. Be gentle and kind with the words you and the others in the room use. Speak words of love and appreciation for all the good that you had with the person. Thank them for the good and joy they brought to you. Express knowledge of the fatigue and struggle they are in and give them permission to let go whenever they need to, that you are at peace with them and you hope and believe that are at peace with you.

Pearls

1) Touch: Touch me please; gently I hope.

From the moment of conception we were touched and nurtured by our mother. For the majority of us, infancy provided ongoing touching that showed love and caring. It could be hugs, kisses, snuggling, diaper changes, bathing, assistance with eating, walking or oral and body hygiene. It could even be discipline but that is tricky and a separate subject.

Notice how similar these needs are to our demented patients, for that matter, even our severely disabled patients.

Please know and remember that when I am demented I am de-educated by illness and my mental capacity is equal to my un-educated infant brain.

I still feel and need someone as I did in my infant days; and some days so might you as well.

So touch me gently please as if you care. I will greatly appreciate your caring kindness. I know my mom would smile and yours would be proud.

If in my dementia I attempt inappropriate touching I hope you will understand my impaired judgment and be diplomatic as you redirect me.

2) Talk to me. I hear you even if I do not respond.

Soothing encouraging words are most helpful. It is disheartening to hear words in your conversation that pronounce or declare me “incurable” or “at the end, why drag it out”. You really don’t have any way of knowing. Be honest. How many times have you been wrong?

On rounds recently an RN told me at the bedside of a sick/sleeping patient; “oh he is a no code. The family can’t take care of him. I think they just want hospice for him.”

Often patients in a coma or under deep anesthesia not only hear conversation but record the comments word for work in their subconscious.

A study was conducted on people who had high regard for their surgeons but after successful surgery kept making excuses to not return for followup visits. However, they continue to say wonderful things about their surgeon.

Under hypnosis several of these patients revealed being embarrassed by comments about them by the surgeon during surgery. However, the patients had no conscious memory of the comments, but the hurt had registered profoundly on the emotion. In each case the surgeon and the operating room team confirmed the accuracy of the patient’s comments.

Your words have consequences so do keep them therapeutic.

On an even more profound note, consider this recorded incident at an air show. A plane crashed on the runway in front of spectators. The pilot was unconscious and was presumed by many to be dead. He “woke up”. He then looked at the spectators and immediately walked directly to a lady in the crowd and lectured her for saying he was a stupid pilot and should not have put them in danger. She had in fact said those things to the nearby spectators. She fainted. The pilot claimed that he had had an out of body experience and that his spirit was floating above the crowd and he was able to hear what people were saying. We have many similar experiences where people during surgery have out of body experiences where they describe things as if they were on the ceiling looking down at the scene.

As caregivers, it behooves us to be thoughtful and careful what we say.

3) Laugh:

Laughing is not just for fun. It is for good health as well. Laughing releases endorphins, the body’s own narcotic equivalent; it makes us feel good. Endorphins boost our mood and reduce our pain and depression.

Years ago a study was conducted to test the therapeutic effect of treating depression with laughter. I was told that it was done at UAB but I am not sure.

Treatment consisted of having patients watch movies of comedy that would produce laughter, mostly slapstick type comedy. I do not have the statistics or graphs to show you the results. I only have related information that those who were consistently aroused to laughter overcame their depression as well as those treated with medical antidepressants.

You and I don’t walk around with a movie in our pocket; however, our patients have a storehouse of laughable moments in their life. Understanding that principle, we will have the opportunities to reach out to their past, to their humorous moments. In fact laughter that is personal to us is even more powerful than laughter coming from a movie screen or TV. Demented patients particularly enjoy reminiscing about the past times because those memories are still clearer than their more recent experiences. Ask them about their youth, their teenage and young adult years; what kind of things did they do? Did they grow up on a farm, or in the city? From those answers you can retrieve some funny things and or stories from their memories. Perhaps you should ask about their first car, their school, and their classmates. Did they have a class clown? Were they the class clown?

You might start a drive to have CD’s of comedy donated to the unit.

Laughter is infectious. It breeds more laughter within the person but also from the people around them including ourselves and other patients.

Remember the old adage “Laugh and the world laughs with you. Cry and you cry alone.”

PS: Don’t forget that the more we laugh the more exercise our facial muscles get. That makes us feel and look younger to some extent, but every little bit helps, right?

4) I’m cold.

I need a warm blanket. I wish I could tell you. I try but with my word salad language you can’t understand me.

You are my caregiver, I depend on you. I have to. I have no choice. Look at me. My skin is sort of blanched. I am not at all pink and rosy. I am trying to curl up in a ball to conserve heat. Don’t you see me fidgeting with my cover? I just can’t figure out how to wrap myself up. I think I am shivering. My muscles will be tired but I will still be cold.

I need a warm blanket. Look at me. When you glance at me between text messages or chit chatting with associates, I know and so do you a glance is a far cry from really looking at me. I am crying inside even if I can’t verbalize it.

My metabolism (my internal heater) is not as good as when in my youth like yours is now.

I need a warm blanket, please.

5) I am hungry.

My food tray is here but I can’t feed myself. I see you go by and barely look at me. Because dementia has robbed my speech I can’t tell you how that makes me feel. I really wish I could because it’s a terribly bad feeling. Like I am a bother to you, a job task you might be able to ignore without it being noticed by your supervisor. For the record, I am noticing and by the way I am spoken of in the Bible as “one of the least of these”. You might want to remember that ultimately we are all watched twenty four seven.

Be patient with me and feed me please. Your day will end not with shame, but an earned sense of pride in a realistic lifted self-esteem.

Being a good soldier, worker or caregiver doesn’t mean having the badges and the paycheck to show, it simply means actually having earned them by your service.

You have both talent and ability. Don’t let them wither away like wasted muscles gone from disuse atrophy.

Your conscience also keeps a record of your deeds, both positive and negative.

6) Motion – Living people are people in motion.

People who are dead can’t and don’t move. People that don’t move tend to feel dead. Their room, or even their body, may feel like their prison. They might even say, “I’m dead”. They may be that much out of touch with life.

Help them! Move their limbs, turn their body, get them up. If a wheelchair is necessary use it. Roll them around; engage them in any and all activities possible. Introduce them to others. If available and feasible, use a rocking chair.

From conception to birth while in the womb we are essentially constantly in motion and experiencing motion. Motion is natural to us. Motion should be continued after birth. When infants and small children are not continued in motion such as swinging, bouncing, riding in kiddy cars, and other motion activities, then motion becomes less a part of them, less desirable and can and does lead to motion sickness or even anxiety and insecurity because of motion not being familiar to them.

Some people with dementia actually revert to, or develop, anxiety about motion or even motion sickness. While we need to be aware of that we also need to remember that for most people motion is essential to feel alive.

If I say “I’m dead” and I am not very mobile please keep me moving. I am not dead yet. Help me feel alive.

7) Love me as I am.

You should love me or care for me lovingly. Throughout life this is especially true during infancy, preschool years and in dementia. During the in between years, I can be taught and you can reason with me. During infancy and dementia there is no intellectual basis for reason. While teaching and learning is the key in infancy, dementia takes away that which was previously learned and it becomes the caregiver who has to do the learning of the needs of those who have dementia. As the dementia progresses the need becomes more infantile, emotional and to the patient paramount.

Someone with dementia might for example see you and for some reason think you “could be” or “might be” the cause or reason of their unhappy state. Just remember if you understand this and treat me lovingly you will have a much better chance that I respond pleasantly or even happily.

8) The ADL tango.

As a seasoned patient caregiver you either know about the ADL tango or you are about to find out if you try to bathe me, brush my teeth, groom and dress me. I did not like it as an infant when my resistance was limited to crying and yelling. Now I don’t have to cry. I can still yell but I can do more. Oh yeah! We are definitely about to tango. I have all kinds of moves. I will teach you some of them. I can hit, right or left, kick, sit, fall, run, head butt or I might even spit at you. You will need to be pretty good to out tango me.

The more you come at me in uniform looking like Mr. or Ms. Authority with arm full of would-be weapons or torture instruments, the quicker and more fierce our unhappy dance will start. It can be even worse if I am gender or race sensitive.

I suggest you try some pleasant good morning uplifting conversation with me before announcing that you are here to assist me to get ready for breakfast. If I refuse maybe you could invite me for a stroll or to the TV room, of course, it is a bribe to get me to finish my ADL’s.

Keep me in calm pleasant conversation and we might just waltz through this dance.

9) She stole my watch.

Because I am forgetful and absent minded I often forget where I put things. It is embarrassing to say I lost something or I can’t remember where I put something. So, to save face, my subconscious mind, teaming up with my unconscious mind will shift the blame to someone else. That is how she or he or whoever is the most convenient will get the blame and the finger pointed at them as the thief.

You tried to persuade me that she has been a loyal family helper for decades and there has never been anything missing. Well, let me tell you, my watch is missing. You see my arm don’t you? There is always a first time you know. I am really irritated that you don’t believe me.

A good caregiver knows to keep looking and likely the object has been hidden from a would be robber but that memory including where the object was hidden is one of my lost memories. Though I have many of those I don’t want to admit it. Let’s say you found the watch in the vegetable bin of the refrigerator. The caregiver tells the adult child.

The result plays out similar to this. Hey, pop, good news. Othello found your watch. It was in the refrigerator. I answer; did you get it fingerprinted to see who put it there? They knew I was about to catch them so they brought it back. These type things happen in the late early stages and in the middle stages, occasionally even in the latter stages. So, discuss with your psychiatrist. Sometimes antipsychotics are used with good efficacy, but poor at other times. These medicines have risks of their own. The risk has to be measured against the possible benefits.

10) Caregivers beware.

Some of you forgot to care for yourself. If you are employed, you likely have days off. If you are a caregiver for someone in your home it is unlikely that others are lining up to offer you a day off, or rushing to give you relief. Sadly, it is not infrequent that as a psychiatrist I see caregivers in families where there are 2 or more siblings, sometimes even several, but one will get designated as the caregiver. Many reasons (read excuses) will be used, such as, you don’t work. You are the only one with the time. We all work. I am sick myself. Mom/dad always listens to you better than us. You were always his/her favorite. You are the only one who can prevent her/him from having to go to the nursing home; you know he/she doesn’t want that. Believe me, the list is exhaustive.

How to protect yourself: don’t buy even one nickel’s worth of that hogwash. Even if everything they say is true it should not mean “therefore you have been sentenced to sacrifice yourself to unilaterally discharge a caregiver obligation that collectively and equally belong to each of them and you. No one except a caregiver knows or understands the physical and mental challenges, strain and effort required to make it through a 24 hour day so aptly called the 36-hour day in the excellent book by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H.

If they truly cared as much about you or your health or your needs as they do about themselves, they would find a way to help. So, it is up to you to care as much about yourself as they do about themselves. You have to demand relief by getting quality private recharging time. Perhaps they could take turns for a week or at least take weekend turns to leave you that freedom. Alternately, you could have them pitch in and help to have the patient stay at a respite facility for several days.

And don’t even think of letting them get away with not sharing the expenses. That does mean all expenses.

Remember, if soft talk does not work, speak up for yourself forcefully. It is highly unlikely that anyone else will. If necessary get an eldercare attorney but get help for yourself.

Don’t be a pushover. Don’t get run over. Don’t take on unrealistic guilt.

Be rational and reasonable in how much of yourself you can afford to spend to be a caregiver.

11) Encourage me

For what I can still do.

A person with advanced dementia may have some special talent such as a solid musical background. They might have been an accomplished piano player. They are likely, even in dementia, to play tunes flawlessly from memory. This is particularly true if these tunes are from their youth and their prime. Encouraging them to play for themselves as well as for those around them, usually gives them great pleasure and satisfaction. Others may be gifted artists. They might paint a chaotic picture which might be analogous to the chaos of their mind. They also might paint great pictures from yesteryear from earlier impressions or memories.

A mid octogenarian that I know can’t balance the monthly checkbook and calls the bank 2 to 3 times per month to argue with them that they keep getting her bank statement messed up. However, she joined a bridge club and routinely wins. It is a carryover passion from her young adult life. It was done so much and practiced so much that even if some of the memory is damaged a great deal of it is still there, just as with the piano player.

Even those with severe dementia can respond to memories of the past such as picking cotton, or playing baseball or basketball, etc. They might remember hiking, fishing, or whatever they did, whether ministering or flying or trucking or being a service person, or military person. Get them to talk about what they did. Of course, don’t frustrate those with aphasia who can’t really express themselves.

If I am the patient help me find the still glowing embers in my struggling brain. You can build a brief fire in me that will warm both our hearts.

12) I am a veteran

Please don’t startle me.

Did you know that when you rap on my door it sounds to me like close range firearms? Then you open the door and come into my room. It feels like I have been overrun by the enemy. When you then begin to touch me or pull at me it feels like I am being captured. I don’t know by whom or where you are taking me. I don’t know my fate but I am pretty sure it is not good. Remember I was taught to resist so don’t be surprised if I fight.

Please pardon me but you see a large part of my adult brain is not working so well these days. I frequently rely on that part of my brain that is more intact which was when I was younger and in The War. Remember too that what we learn with intensity of training and especially with intense emotion is programmed to stay in place longer and to stay at the forefront of my protective nature. Some of this is so emotional that it turns out to be Posttraumatic Stress Disorder. We are very apt to “go off” at you. Some natural things will rattle me pretty bad. One thing that will make me jump out of bed is a woodpecker pecking on a gutter drain. Please monitor the TV and don’t allow war movies or other violent movies. Instead, try comedy or something heartwarming.

When you combine the knowledge of the level of my dementia and my history it helps you to predict my behavior. If I have regressed to young adulthood and I had a violent difficult period during that time I am likely to be in a pretty defensive mode. I could very quickly become aggressive. If so, please gently talk me down. We don’t need to fight. And oh, don’t forget to thank me for my service to our country. It is important to me.

13) Refrain from destructo therapy.

This is a new craze that is catching on in some places but it is wrong and dangerous. Don’t buy into it. Don’t be misguided. People claim that it is therapy; they are teaching people to get rid of their frustration by violently getting it out of their system as they destroy things. Destructo therapy. It works like this.

A person is frustrated with various things in their life, maybe their boss; maybe their spouse and they feel constrained that they can’t get their feelings out. They pay to go into a place and use hammers or other objects or their fist or their shoes to kick and destroy such things as cell phones, TV’s, computers, and flower arrangements, whatever. That is not therapy. It is simply venting of anger. Emotion is where the power is. The more powerful the emotion, the more powerful the anger. Power/emotion fuels memory so when one uses destructive activity such as this to focus their anger and violence as a response to their emotion of hurt or rejection they become more empowered to respond violently, perhaps even at a family member or friend from whom they perceive pain or hurt. It is tantamount to teaching people to be violent. In this scenario destruction and violence becomes ones go to solution. This definitely should not be taught. It is incredible that people are paying to be taught to legitimize violence. I believe it is dangerous activity or worse masquerading as therapy.

We need strong characterological inhibitions and judgment in place to combat teachings such as these. It is bad enough for anyone, but with a person who has dementia and is beginning to lose their characterological inhibitions and controls, being exposed to seeing something like this could be catastrophic. It might prompt one to be violent toward their spouse.

14) Observations.

You will be able to learn quite a bit by observing me. This is particularly true after I won’t be able to talk to you any more. Consider me one poor excuse for pantomime.

If I am constantly in motion getting out of the chair, walking, getting back in the chair, never satisfied where I am, you might consider that I am restless. Why? It could be because I have EPS (extrapyramidal symptoms), a side effect of some of the medications I am being given that possibly could be changed or balanced with other medicines. It could be simply that I am very anxious or that I have an agitated depression. Do I look sad and dejected?

These observations can be very helpful to the family or the doctor who might not notice these symptoms during a rounding session.

Have you noticed me eating? Do I use my utensils properly? Can I even use utensils? Do I need finger food instead? Can I swallow my food? Does it need to be mechanically softened or even pureed? What about my likes? If I am in your presence long and continue to resist for example a routine breakfast, maybe I don’t like that. Maybe I would like a different type of breakfast. You can help me a great deal if you notice these things.

Is my gait steady? Has it changed any? Has my balance gotten worse? The doctor needs to know. The family needs to know. The staff needs to make sure the person is kept in close proximity and doesn’t fall.

Am I trying to tell you something? Perhaps if you can’t understand me someone else could. For example, male to male or female to female. A particular dialect might need to be matched as much as possible.

Body language is a form of communication. Do I appear to be favoring a certain limb or area? Do I appear to be in pain? If you notice something about a resident please pass it along to the nurse or the doctor. Write it down.

I may be dehydrated if:

1) Am I not eating enough, or drinking enough fluids? If my output is not adequate or regular?

2) Do I appear to be hot or cold? If so I might have an infection, flu, cold, genitourinary, etc. My skin turgor is sluggish, more like dough than rubber.

3) I have unexplained headaches especially in the early morning.

15) Hallucinations and delusions.

My hallucinations and delusions are more tricky and problematic for you than for me. Don’t tell me I don’t see bugs, or children and especially my deceased parents, because I certainly do. I may not be seeing them with my eyes but I most clearly see them with my remote memory in a deeper part of my brain and the image is as clear as with my eyes. These memories are housed in the deepest more protected part of my brain. They are very important to me now that I have lost much of my recent intellectual knowledge and ability. That remote part of my brain constructs these images for me and others like me. The brain fashions these images for us simply from the signals received from the eye. The brain also produces images just as clearly from thoughts during dreams and so it draws images from the neurons of stored memory from the past. Close your eyes. You can and do visualize your surroundings and retained images or you may consciously create images. Certainly dreams prove that. You see people and faces with changing images, expressions and affect along with changing landscape. Notice also that it might include the present, or the past, or even the future. People even create and invent things during their dreams.

I thought if you knew all of this it might help you to understand me when I am delirious or psychotic. Please don’t challenge me on what I see or don’t see or hear, or don’t hear. Take my word for it, or actions, as evidence. I promise you they are reality to my brain at the time. Perhaps if you can understand it you be able to help me deal with it. You don’t see my hallucinations or believe my delusions so don’t go along with them or pretend that you do. That will only encourage them. Spending time or giving emotion to bad things or wrong things is tantamount to putting fertilizer on weeds.

Be kind to me; gently bring me back to reality. Give me some unchallenging comment such as ‘that’s okay’ or ‘that’s nice’ and then quickly move to a different subject, you need to eat more of your breakfast. Here try this. Or, have a little more juice, or why don’t we take a walk or watch a TV program, or listen to music, or, etc. You get the idea.

The last thing a damaged brain needs is to be overtaxed or over challenged. Remember, you are here to help me, nor harshly grade me or embarrass me.

16) This is not my dad.

I have known my dad all my life, of course, and I never heard him curse, or saw him hit anyone or be seductive, impolite, rude, or unmanageable. Why is he doing this? Is he possessed?

I want my dad back. Can you fix him?

Your frustration is understandable. Let’s explore the logical answers to your questions. Your dad has dementia. By definition his brain function is impaired. Despite the impairment and memory loss there remains a great deal of knowledge, memories, unsatisfied urges, needs or wants now exposable Because inhibitions, laws, morals, rules, social grace, etiquette, etc. are among the earliest things lost with dementia. In his past he may have witnessed such behavior or, read about them, or even preached against them. These abhorrent acts can be activated or stimulated by something someone says or does, or even seen on TV, or heard on radio. It may even happen because the mind or brain is in the on position and in a roaming mode rambling around through the neurons of recorded past and may accidentally trigger these memories therefore consequent actions. It is analogous to him roaming or rambling through the halls looking for something, not knowing what, or just anything he happens to stumble upon.

No, I can’t fix him, but redirecting him and using medication may be beneficial in controlling some of the unwanted behavior. Helping to educate you about his dementia may in fact help you more than him. For example, it is wonderful to know that his brain had knowledge of this kind of behavior that some have acted upon, but not him because of his great strong character until the uncontrollable dementia destroyed some of his controls and inhibitions and therefore part of the person and the dad that you have known.

Don’t be embarrassed by his actions. Your dad’s damaged brain is using your dad’s body to mimic behaviors known to him years ago but that have previously remained controlled and in the past. He is non compos mentis. He cannot be held accountable for his actions.

Lighten up, try every trick you can think of to make him laugh and keep his mind focused on more civil or acceptable behavior.

17) Am I a different person?

You have never seen me be anything but a gentleman/or lady. Lately, however, you have seen me act differently. You saw me hit another person who reached over and took a biscuit off my plate, or you saw me make a sexually inappropriate comment or make a pass at a staff member or visitor or even a family member. Perhaps you witnessed me make an ethnic slur. I might even invite someone to my room, or bed, that I previously offended with a racial comment.

As a family member or caregiver you have personally never witnessed or known of any such behavior on my part. How can this be? You think; is he crazy, is he possessed, has he changed, or worse has he always been this way and we just never knew? I know it must be confusing to you.

It is imperative that you understand that all you have read above is a natural biophysical process. I plead with you to read this thoughtfully and understand because it will help you have peace and calm while caring for me. If you are really at peace with yourself you can even appreciate humor with me.

All my life my brain has been a sponge gathering gigabytes of information and knowledge about our society, our interactions, our biases, belief systems, values, politics, etc. Many of these information bits were filed away, never used or believed and maybe even abhorred. But, my brain is a just a powerful sponge and storehouse. The longer I keep this information the more crystallized it becomes and the more it is layered over and protected.

As my brain deteriorates it progressively does trigger bizarre actions. It misfires like a badly damaged computer. You will see me try to eat soup with a knife, or jelly with my fingers. That can be funny but at the same time sad. It is from my basic memories or attempts at feeding myself. My brain is desperately trying to help me function.

It is simply the same process while I am trying to communicate my brain is reaching into the deep past and the well protected and previously banished phases now unprotected sneak out. I am probably trying to say I appreciate you, or, I need your help, or, I need your human closeness, touch and sound just as a baby would, or even that I don’t like the way I am being treated. My failing brain misfires terribly at times as I try to communicate with you. Please understand me and laugh as you might when I try to eat soup with a knife.

18) Sing to Me

Don’t forget that my mind is going back to the past. The thing most recognized and therefore enjoyed are the good things from my adolescence and young adult life. Popular music of the era are favorites. When you sing or even hum a few lines that were popular in my youth you will spark dormant pleasure cells deep inside my brain. I may even smile at you or say a few words or even try to sing with you.

Sing to me, sing with me; you will have made my day. You will experience gratification that is above and beyond your paycheck.

The most popular songs and tunes will be from forty, fifty or sixty years ago and if you don’t know them, you should ask or research some of the popular tunes of those eras. Become familiar with a few of these. Be proactive. You should study it. It is part of the tools of your trade.

19) I want to go home.

As my caregiver, you need to know which home it is that I seek. I have many as you will see. In early and middle dementia I may get confused in my own home. Often just walking me to a familiar room or bed will satisfy my need. In middle and late dementia it can be very different. As our most recent layers of memory are confused, damaged or destroyed please realize that the home in these memory segments are damaged or have disappeared. Therefore, look for homes closer to the more stable memory of yesteryear, maybe decades ago. Often this memory will recede back to “the home place”. We may also be asking or looking for mama and sometimes daddy. Reassurance and redirection are useful techniques in times like this. Do not, repeat, do not fib and say “mama will be back soon” or things of that nature. You could say something similar to “we are going to stay here for a few days. It’s a nice place and the people are really great or wonderful. I think we are going to like it.” When mama asks “when is Daddy coming home?” I have even said “I guess it will just have to be a surprise.”

Don’t forget that when a person is truly miserable in pain or severely depressed a comment that they want to go home may be code for “I want to go to Heaven”. If that appears to be the case, you may try, “we have to wait until we are called”. Then add some redirection such as “since we won’t know the day or the hour we need to take care of ourselves in the meantime”. Immediately then change the subject, ask them if they want something to eat or drink or take a walk. In other words, change the subject.

20) The futility of arguing.

So you want to argue with me. You need to understand that it is futile to argue with me. I suggest you don’t try. You will attempt to use logic. I can’t use logic because that part of my brain is damaged. I use emotion; that is where my power is. It comes from feelings. I still have those in abundance, for example embarrassment, ridicule, neglect, disdain, contempt, condescension and being deliberately ignored.

All of those things make me angry or at the least will fuel any anger already present. The anger with emotion is the power in my quasi logic. It makes me feel as if I am winning the argument. It proves to me that I am right and you are wrong. The more we argue, the more energized I will become in my position. Since I can’t argue with you with logic I can only argue with anger. If I can get you angry I can win the argument. I have no other weapon and I have no inhibition. It is no problem for me to become loud and unmanageable. I don’t foresee consequences. I only want to win. I might get an injection but if you engage in the argument you possibly will lose your job. Think about it, that’s not unfair. You see my brain is broken and yours is not and besides that, you have professional training.

So let’s not both of us become unhappy and angry. Instead, help me avoid arguments. Don’t challenge my erroneous beliefs. Try telling me you will talk about it later, or you will look into it. In the meantime there is something we need to do now. Take me for a walk, offer me some ice cream, and turn on my favorite TV program. Do anything to distract me from arguing.

I am calling on you for the art of caregiving versus being my sitter, guard or warden.

100 Century Park South, Suite 206; Birmingham, AL 35226