The Old Oak Tree

The other night as I was trying to fall asleep, my mind began to wander. Without warning, memories of my childhood home surged like never before. I am not sure if I had fallen asleep leaving my subconscious to have a hay-day, or rather, in my slumber something triggered me to think of days and places long ago. The next morning, the images of places and things from the 1970’s and 1980’s were both crystal clear and extremely vivid.

You see, my father was a Southern Baptist minister in the deep south. We moved quite a bit, covering almost every Southern State- going wherever a new preacher was needed (and voted in).  Being a young child, maybe 6 or 7 ,  I can recall moving to a small town in Alabama, which excited my siblings and I because the new Parsonage had more bedrooms and the church had a small jungle gym playground. It was an exciting time for us!

After we had been there for a while, my brothers discovered a huge, sky-high- tall Oak tree that had so many limbs, which made it very desirable for us kids to climb. Naturally my brothers could climb like monkeys and would swing off its branches- jumping to the ground from what I thought was “way t0o high to be doing that”. Our mother would yell from the screened in porch,” Boys stop doing that before you break your neck. Are you watching your sisters? Boys????”  They would reply, “Yes maa’m, they are here somewhere.”  ( The” somewhere” part was whispered only loud enough to be heard by God because they surely would not tell our mother the truth.)


So, to make the truth more promising, one of my brilliant minded brothers made a decision. ” Okay, since we have to watch you, you have to come up the tree with us and do what we do so mom doesn’t make us stop doing it because we have to watch you. If you are doing it too, then we are watching you do it.”              Sure, that makes all the sense in the world- maybe to a 7 year old girl.  My sister who was older and so much more mature, made her own plans to go inside and “go to her room“- which was cool back then.  Off she went while I studied the giant, bark filled, super big and round, mountain top style tree.  Could I, a small little kid climb such a tree without breaking my neck which my mother had already predicted ?    I watched the boys climb higher and higher and higher eventually losing sight of them amongst the leaves and branches.  Only one brother waited patiently for my ascension into the heavens- my twin, Michael.

“Come on Jess…..just come on. It’s just a tree. Trees are fun!” . I caved under the pressure and started my upward journey.  We climbed higher and higher, leaving the ground further behind us. Without thinking about it, I glanced down….wayyyyy down.            Without warning, my little heart skipped a beat.  Suddenly, I froze.  Like ” froze froze” in mid air, close to where God lives,……wayyyyy up there.

Then it happened. Snapping branches. The sound of something falling heavily through the rustling leaves.  Swoooosh.  It had happened j just like mom said- he was gonna break his neck.            I looked down to see my older brother Wayne, laying flat on his back.          Laughing. Hysterically.         THEN….     I heard my mother’s voice.

“Daniel Wayne!!!!!! You better get up from that ground! Those are school clothes. The rest of you get down from that tree and get to your chores.   NOW.”

My brothers, swinging like monkeys, flew past…grabbing from branch to branch, jumping to the ground.   Then silence.  Dead silence.              ” Hey! Wait for me!……hellloooooo….wait for me!!!”    Silence.    The ground was so far away. The closest branch was at least 5 miles away. I clung to the tree as if it were our wedding dance….yelling for my brothers………climb-a-tree


I can recall the event of that day like it was yesterday, even though it has been well over 45 years ago.    Memories are for the making, almost certain never to be forgotten, regardless of advanced age, or the disease process.

Dementia may cause some to forget when they had their last meal or even how to feed themselves, but some things are not forgotten.  I have sat with residents and listened to their stories… what if they think the event is happening in the present instead of 45 years ago?  Have we ever considered that when a resident is looking  for a parent, believing they are still alive, that maybe it is a memory that sparked the thought?  Have we given attention to when a resident is constantly “trying to catch the bus”, that maybe they rode the bus to work, made friends along the way  and are missing that experience?          Not every misplaced memory or life timeline is “confusion”.   

 We as health care professionals  lack the art of true listening. We consider the ramblings of the dementia patient as “agitation” and “cure” it with medication to “reduce anxiety.”   Take Betty for instance. Betty stays in my office all day long, shuffling my papers, hitting buttons on the copier and inserting herself into conversations.  If I leave my coffee unattended for a split second, she drinks it.     It can be very challenging to maintain my sense of calmness when she moves a certain document or jumbles the 50 pages that were in order when they printed on the copier.      But here’s the deal.  Betty was/is a licensed therapist; a former educator, and an ordained minister.  When guest arrive in my office, Betty is no longer a dementia patient- she is there for them; to offer her services as a counselor.   All of Betty’s memories are of the good she has done over the past 70 years.  For me to discount her who rob her of the very memories that she is bringing back to life. She may have forgotten who she is, where she lived, or may not even know that she is a dementia facility.  But she is not forgotten who she is.

We all need to listen a little closer to people and not call it “confusion”. We should listen and maybe, just maybe, we can catch a glimpse of the person- the real person who raised a family, had a career, took vacations, traveled abroad and lived their life the same we live our today.   See the person, not the disease or disorder. Listen to their stories because their stories are their memories being retold.           


How did the old Oak tree story end, you ask? Well, my dad just happened to walking from the church and heard my panic and fearful screams.   I can still see him, standing below the tree, looking up and asking…”Sweety, how did you get up there?   Hang on honey, I’m coming up to get you.  There  is nothing to be afraid of as long as you hang on” .

Once he had safely extracted me and we were safely on the ground, he knelt down and said…” Jessi, remember this day. Never follow the leader when you know you aren’t ready to follow. Don’t climb trees if you can’t get down.  Always remember that.”.

Forty five years later, I remember. Forty five years from now, if I am in a nursing home yelling out…..”Help me down”….”Get me out of this treeeeeeeeee”…. don’t medicate me, let me enjoying my memory.





Understanding When It’s When

Dementia robs people of so much….their memories,their lives and relationships. Some days it is difficult to sit behind my desk and talk with loved ones about the progression of the disease process. I listen to their words, but can clearly see the heart that has been broken……The question everyone asks is,” how will I know when it’s time?” I always have to and ask for clarification …”when what?”  This is where things become very sticky…..

” When do know when it’s time; I mean how long can a person live with dementia? When do they stop swallowing? I read that dementia causes people to forget how to eat and I guess they forget to swallow? Is that true?  If it is, when do you decide to put a feeding tube in? How long can a person live if they don’t eat?  I guess what I am asking is, when is when?

Such  loaded questions. How does anyone really know how to answer? We can recite the scientific data that we know, explain the process of death and dying and lecture for hours on dementia….but to answer when is when?   When does one decide to stop treating with antibiotics, IV fluids and or place a feeding tube?        One person defined the choice by saying ” It is a matter of quantity vs quality. ”     In some ways, I agree with the  statement, but every situation is unique to itself.          I do not think we should define ” quality of life” based on a disease process. Some dementia patients have the best time in the state of mind they are in. They laugh, sing, dance, and are content with the world dementia has created.   I have also seen a 103 year old woman perform the ” jitterbug” on the dance floor!  So, I do not think we can define life by ” quantity vs quality.”   elderly

What I do think helps to determine ” when is when” could be the individuals physical state…I would not propose placing a feeding tube or prolonging life in a person who is feeble, fragile and failing. It is not about their age, diagnosis or mental sharpness but rather, about the whole person and the state of their body. Modern technology and advances in the medical field has allowed us to ” live forever” with mechanical machines, devices and gadgets.  Ventilators, life support machines and other devices can keep any of us alive…..but where is the defining line to unplug them and allow nature to take its natural course?         In these situations we wait for a medical doctor to walk in and say ” this person is brain-dead and is only alive because of the machines.”  At that moment, all hope is gone, lost and it’s over.   That is the true determining factor….all hope is gone.

  If only it were as simple with dementia. We do not know what the patient can and does understand, nor do we know what their awareness of themselves or others really is either.    Hence the quandary.

The best advice I can give anyone is simply to always follow your heart and let the decisions made reflect what your heart feels.  Dementia has robbed so much from the victim’s family; the last thing needed  is to feel guilty about the decisions made  at the end of life.

I have a family member that tells me weekly how much money he has in the bank and how many months he can afford to continue paying for his wife’s care. His question to me is, “What if my wife out-lives the money?”   I explain the Medicaid system and other state and federal assistance programs to him to which he offers another problem .

” You see Jessi, I can’t get public assistance because I still have money in CDs, IRA’s and a few stocks. I won’t qualify for help from the agencies.  You see, I can’t spend every dime I have on Bessie because I still have to live after she is gone. I’m not talking a lot of money, maybe a little over $100,000 dollars, but too much to get Medicaid.  I’m only 73 and I am hoping I have set aside enough for myself.  Before Bessie got dementia, we have over $300,000. Now we barely have a little over $130,000.   See my problem ? “

Hmmm. I do see the problem, but I do not know the answer or how to solve it.  My standard answer is simply, “Let’s just take one day at a time and cross each bridge as we come to the crossing.”                    nc_longest_footbridge_1_sk_141001_12x5_1600 I know such a loose comment offers no comfort, but I really don’t know what else to say. Should I encourage him to continue spending what money he has so he will qualify for financial assistance ?  Should I encourage him to take his wife home so he can save money, knowing he is not able to provide the constant care she needs ?  Should I offer to have hospice evaluate his wife, or place her on palliative care which would decrease medical bills, aggressive treatments and eliminate costly medications?       I just don’t know.

There  are so many factors to the loaded question as to “when is when”.  Maybe the best answer is……”Let’s cross each bridge as we come to the crossing……..or maybe “Let’s go through the tunnel when we come to it”….at least there is hope in the light at the end of the tunnel.



This Is My “Now”

Some days dealing with dementia patients can be either challenging yet rewarding, or downright difficult. I often tell family members to “stay in the moment” with their loved one, focusing on the topic regardless of how outlandish or far-fetched as it may seem. It seems to me that most dementia residents  focus on ” going home”, when they last ate (3 days is the standard comment ), “taking care of the babies” and going to the bus stop.  I encourage staff and family to use Naomi Feil’s validation methods of reassuring the resident that all is okay, and validating what they are saying.  Arguing with a dementia patient is truly a moot point.  I highly recommend reading some of the research on the Feil Method and applying  it when dealing with dementia patients. For more information ,  go to the website :  .

I made a huge mistake last week, using the validation method…..let me explain.

Sarah is a new resident, but does not have dementia.She has terminal brain cancer. The progression of the disease process has taken from her the ability to communicate effectively; often losing the word she meant to say before it is verbalized. She may mean to say, “ I need to go to the bathroom” but it comes out ” I need red elephants.”      So to provide care to her, the staff have to use the process of elimination  : “Do you need a drink?  Do you need your pain pills? Do you need to go to the bathroom?”    Once the need has been identified, it is met …it just may take a few minutes to arrive at the right answer.    It can be a frustrating process for her and for those providing care.

Here is the thing.          Sarah at times, can speak clearly, with intent and purpose, saying exactly what she means to say. Her move to the facility was not a very happy moment for her and she had no problem expressing her dislike for being here or for those of us who helped with the process.  She had no trouble finding choice words to describe exactly how she felt about being in a place with a bunch of  “old people”. ( Sarah is only 59 years old.). She was extremely critical of every component of the facility. The building was not clean enough; the food was horrible; the staff was stupid, stupid stupid and the old people were OLD.   Her list of reasons not to stay in such a place would take days for me to transcribe or even begin explaining.   After about an hour of  listening to her and knowing that she had some neurological deficits, I contributed her complaints to the brain tumor as opposed to her true feelings.

” Sarah, I understand what you are saying and I am going to have someone come in and clean your room again and have the kitchen send you up something else to eat. I personally will see to your needs and try to make you feel comfortable as we can. It is going to be okay  Sarah, everything is going to be okay.”    

Without blinking an eye, Sarah stood up, looked me directly in the eye and said ” I call bull sh**.  How in the hell is everything okay when I am dying of brain cancer and you, YOU, don’t understand anything about me. You wrote up some papers, my family signed them and here I am in this place to die with a bunch of strangers and you tell me everything is okay? Bullsh**.  Why don’t you try living my life and see how you like it? Before this happened, I had my own life and didn’t bother anybody and now I am in this hell-hole waiting to die and you tell me  it’s okay. You know what? This is my NOW and I hate it and I hate you.   Now go get me my zebras because you have made my friggin head pound. I have brain cancer you know, so do you think I can get some relief ? Get out of my room.”                                         Talk about being put in my place.

My interaction with Sarah has made me think about how we interact with dementia patients over-all and how we respond to them.  When someone is looking for their wife of 60 years and we know she has passed away, we offer an excuse to the resident. ” Oh she is at the beauty parlor”, which in turn, calms the resident and redirects his thoughts from searching for her.  But what if, just what if he wanted to talk about his wife and grieve his loss? What if he already knows, deep inside, that she has died and is simply wanting to recount a memory about her?     Sometimes it is difficult to discern what the underlying meaning is when spoken by a person who has cognitive deficits.  Trying to figure out what is being said, is what is meant and is what is inferred and implied, is as confusing as this sentence is!

I learned a lot from Sarah during  that single interaction. I now know that everything is not going to be okay, just because I said so.    Human beings whether cognitively impaired or not, still have emotional outpourings that are real, not imagined, nor a figment of their imaginations.   Their ” now” should not dismiss who they were, how the feel or have felt, or what they are saying to us and wish to have understood.

Think about it, right now where you are. How will your ” now” moment be interpreted should you one day lose the ability to express yourself verbally?     WordOfTheYearNOW

Guarding The Front Door

Every occupation has certain expected risk associated with it. Look at how many convenience stores employees are harmed in a robbery gone bad; or how many police officers are shot in the line of duty….or how many construction workers sustain major injury while on the job.    Even the friendly mailman risks being bitten by a dog….but what risks is associated with being a long-term health care administrator?   What is the worst possible thing that could go wrong?

Well, to answer that, let me share  what happened on Monday in my building and how something very bad could have happened………

My office is located at the front door. I see  and greet every visitor, family member, guest and employee that comes and goes. Due to the volume of guests that frequent the facility, I may not always know who ” belongs” to which resident, but for the most part, I have a general idea.  I do at times, get thrown off when the” great-grandchild on Uncle Harry’s side twice removed and related by marriage” visits, but other than that, I know who’s who.

Monday. Let’s talk about what happened Monday.

While sitting at my desk, I see Bonnie  and Sandy  pass through the door. They greet me with the normal ” howdy-do” to which I exchange with a “hey ya’ll.”. Suddenly I hear a voice, coming from the doorway.

Glancing up, I see a woman…an oddly dressed, disheveled and very loud woman, standing in my doorway. A large Minnie Pearl style floppy hat, dark sunglasses, a trench coat and “jail issued slides” were the first thing that caught my attention.

Well hey! Are you interested in pornographic Bibles? I have a ton of pornographic Bibles that I am handing out. Do you like my shoes? I call them my jail slippers. I think they are nice for jail slippers. Do you like my hat? “  Before I could remotely gather my thoughts, stand up, or whip out my concealed carry sidearm…..she caught the attention of one of the male residents. .. ” Do you want to by my boyfriend? I need a boyfriend to string up. I am here to spread joy and cheer and visit”.  With that, she turned and walked with purpose toward one of the dining rooms as if she had done this a million times before.

Jennifer,the  Director of Nursing, had been in the office as all of this was taking place. I quickly whispered, “Which family does she belong to? Could it be one of the recent move in folks and we just don’t know her?   Without hesitation , she replied, ” I don’t know but she is nutty as a fruit cake. Pornographic BIBLES...really????”

Without second thoughts Jen and I sprung into action.  Well, not really.    I was still not sure if  this lady was a relative of a resident that I just hadn’t met and the last thing I wanted to do was call the police on an actual guest!  I had to be sure.          Jennifer and I ” tailed” her into the dining room, watching as she sat down with a group of ladies who had just finished lunch.    We observed from the Charge Nurse’s Desk, safely behind a glass window.

” Did you ladies just have lunch? Did you have golosh? ( I have no idea how to spell golosh, nor do I know what it is, nor do I intend on ever eating it, but hopefully you know what it is and will overlook my inability to spell it).

” I love these types of homes. I enjoy being full of cheer. Oh look, a kitty cat. What a pretty kitty cat. Nice kitty cat. Did you eat golosh today? I love golosh. My aunt Maddy made the best chicken………”

By now, I think or am fairly sure that this lady is a few french fries short of a Happy Meal. but I am not positive, so I enlist the Charge Nurse to go investigate further. ” Go introduce yourself, ask if you can help her and ask who she is here to see” I whisper .

” Hi, my name is Donna and I am the Charge Nurse. Who are you seeing today?” she asked.

The lady, engaged immediately with Donna. ” I am here to spread cheer. My aunt Maddy was in a place like this. You know what happened to her? She died. She made the most fabulous fried chicken. You know how she did it? She browned it…..”

Donna was clearly in my line of view and I could tell that she was not too happy with me for sending her into a crazy conversation. She was smiling and nodding along with  the crazy lady as she rambled on about Maddy’s fried chicken.

Jennifer is pretty no-nonsense and had heard enough. She loudly exclaimed…” Jessi, this chick is mental and I recommend you call the authorities.”.   Before I could agree, crazy lady jumped up from the dining room chair, waved goodbye…stopping briefly at the desk to say ” Goodbye my new friends” .       Off she went, back out the front door, leaving us  standing there, looking at one another as if to say, “what just happened?”

We chuckled at the insanity of the moment and quickly scattered , returning to our duties. Hours passed.  People came by and left the facility without incident. Pet therapy dogs stopped in, the Library on Wheels dropped off new books….family members came and went.

Just a few minutes after 4pm, Jennifer appeared in  the doorway announcing she  knew much more about  the “crazy-lady”.       Apparently, the Library on Wheels folks knew of and about her. She is indeed ” off her medication”, attends any AA, NA or other organized meeting that provides food, simply to enjoy the feast of donuts and coffee, and  she lives in her car.  She wears a variety of costumes/outfits including Bunny outfits, Top Hat and Trench coats and  often wears doctor’s scrubs and lab coats.      Okay, the bunny ears and floppy hats made me laugh, but there is nothing funny about wearing scrubs…or masquerading as a medical person. To me that is scary. 

Think about the size of your local hospital. When you walk in, normally, if you look like you know where you are going, no one stops you. You have the whole hospital to explore without question.  Nursing homes and assisted living facilities are no different. We are public places, yet private. Not just any Joe blow should get past the front desk….nor be able to wander through the facility. It is the obligation and duty of the person sitting at the front door, whether it be a receptionist, security guard, administrator or head nurse to insure the safety and well-being of those inside.

Let us never forget Carthage, North Carolina, March 29, 2009. A gunman walked through the nursing home opening fire on anyone he saw, killing 8 innocent people. Remember, most of those killed that day ,were elderly residents.  Granted that incident was spurred by domestic violence, the gunman was looking for his wife who was on  locked unit………but it could have happened anywhere, any time…to any one of us.

I dodged a bullet on Monday with  the crazy lady. My slow response to stopping her and the second guessing of myself as to who she was, could have  spiraled out of control.  Guarding the front door and protecting those in my care and the employees is not only my duty, but my obligation as well simply because of my title.    The lesson we can all learn from Monday, is to know who is who, and rather than second guessing, simply ask the person in question.   If she can walk into my facility, she can walk into yours……..




ICD vs DSM: More Than Codes

Times are changing in long term health care.  Typically, the average age of a resident is somewhere between 70- 100 years of age.  Their diagnosis is always along the same lines: dementia, forgetfulness related to aging, CVA, Heart disease,  lung disease, paralysis, mini-strokes….on and on the list goes.  Recently, the trend has changed to a younger , more complicated group of incoming residents : those with  Traumatic Brain Injuries (TBI), medication- managed schizophrenia, early onset dementia, ETOH induced dementia,  clinical depression and numerous psychotic disorders that are medication managed.

What I see happening now in Virginia, is  the mental health system weeding out the long term “dwellers” and finding placement  in assisted living  facilities and nursing homes across the state.  The question I pose is this ; Are such facilities prepared for a younger, more diversified group of residents with complex psychological issues?    Let’s face it.  A 92 year old dementia resident has different needs than a 32 year old schizophrenic resident.   The mechanism of action of dementia  and psychotropic  medications certainly  stand a world apart from medications meant to maintain those suffering from delusional disorders.

Let’s look at it this way. Grandma is 95 years old,  fraile, partially blind, extremely hard of hearing and wheelchair bound.  John is 37, paranoid schizophrenic, and was found not guilty by reason of insanity due to his mental health issues.  How comfortable are you with Grandma living down the hall from him?  Would you worry about her well-being and safety?

Another angle to think about: Mary is a 19 year old caregiver who has completed dementia training. She has been a CNA for only 2 years and is a great caregiver to the elderly in her care.  She sees John and becomes fearful and intimidated by his ” constant staring”. John can walk, talk, meet most of his own personal care needs….but John needs someone to insure he stays on the correct medications.   Should Mary quit her job because of her fear?

Don’t get me wrong, I personally enjoy working with psych patients. I started my career many moons ago working in psych hospitals and found it to be my “calling”.  But as a very young professional, I found myself cornered by a patient that  turned violent quickly.  The textbook learning and clinical rotations had not taught me everything I needed to know , including the part about never turning your back on a patient who is having a loud discussion with himself.  Thankfully, I was only battered and bruised and walked away from the incident.  The next day, I quit my job because I was scared it would happen again….and  the next time, it could be a lot worse.     So, I left the field of mental health and entered the world of long term health care- tada– and I’m still here!  

Now.….the two areas of practice are merging, and I have mixed feelings about it.  I understand that mental health beds are needed by those in immediate crisis and the long term patients need somewhere to live, someone to manage their care and some type of structure to insure their well-being.  But is mixing these two populations the right fit?

A unique characteristic in most dementia patients is that they are unpredictable. They may be fine and dandy one minute and aggressive and combative the next. One of the reasons for the shift in their behavior is the progressive deterioration of brain cells. Frustration or even physical pain/ailments that can not be expressed is also another reason why some turn aggressive.. The dementia patient has very little, if any, control of their behaviors.

Menalzheimer_braintal health patients have such a plethora of possible disorders, that it is difficult to judge which DSM 5 code is the one staff need to focus on. How do we as caregivers know exactly what to expect when a long term mental health patient has been admitted into a nursing home or assisted living facility?  There must be a reason the patient has not mainstreamed back into society…….Mental Health professionals consider those with inappropriate behaviors  to be manage by medications, but the patient must be willing to  comply with the treatment plan.      Hmmm. This is a wee bit different than the treatment plan of a dementia patient. 

So, what are we to do? Mix the two populations and hope the staff can adapt to the needs of both populations?    Hope the two populations can share communal living without incident?  schizophrnic

Long term care is just what it says. “Long term care” for those who can no longer care for themselves safely independently.  Hopefully the field can expand  and meet the needs of those suffering from both conditions in the ICD-10 and the DSM-5.