Back In the Day

This week one of the residents in the facility, Mr. Irwin, caught a news segment about the violence taking place across the world, following by a blurb about an ebola patient in Texas. Even though his dementia, he recognized how the world has changed, for the worse.
“Back in my day, you didn’t see all those kinds of things. I am glad I am old and no longer out there.”
Wow, what a profound truth. The world has become a much more scary place than the Roaring Twenties, or even the Fabulous Fifties ……instead we migrated to Terrifying Two-Thousands. We have reached a place in our society where we live with drive by shootings instead of rival fist fights. We no longer walk away from a job, angry at our employer; but rather we whip out a Uzi and shoot them. We no longer simply divorce a spouse,; we hire a hit man to eliminate them. Our worst nightmares have become the reality in which we live.
As I walk through the facility, I see residents who have lived through so much. They battled some of the greatest wars ever fought, and came home heroes. They fought for our freedom, defending the Nation that once was “Under God.” Today, I am not sure what we are ” under”. It is my belief that the day the President proclaimed that we were ” no longer a Christian nation…”, we were doomed. Back in the 20s, Islam may have existed, but it was not the faith of our Founding Fathers. Back in the 30’s, I am sure no one could define “Muslim”. I don’t think there was ever a “school massacre” in the 50’s. Even in the 60’s and 70’s, the psychedelic generations, no one knew what a ” terrorist attack”, was all about………. In the 80’s, we did not fear for our lives every time we stepped out of our front door. We didn’t worry about being beheaded or catching a disease that has no cure…..
Last weekend, I was at Washington Dulles Airport. I was caught off guard what I saw the police officers patrolling with dogs and machine guns. Machine guns. I looked around to see what was going on; assessing to see if we were under attack…hoping they would get the bad guy …but no, rather, this is the new normal.
I do not like the new normal. It was bad enough living in the Washington DC area when the Beltway Sniper roamed about shooting at, and killing people for sport. The entire Tri- State area was on full alert. Gas stations placed tarps around the gas pumps so we could hide behind them as we filled up our cars. People ran for safety as they parked in grocery store parking lots; hoping to not be shot by the snipers. We truly lived in fear during that time. We all hoped and prayed that law enforcement would “catch the guy” who was terrorizing us. Once they captured the pair of shooters, all of DC went back to normal. The tarps came down; playgrounds were filled with kids playing and laughing and parks became overcrowded……we had returned to our normal lives.
Now with the possibility of random killings, beheadings, drive by shootings, flag burnings and “cell groups” laying in wait for their prey……I guess the police do need to carry machine guns….. I think the days of feeling safe anywhere….are over.
I remember starting the school day with the Lord’s Prayer and the Pledge of Allegiance. I attended Sunday School and memorized the Ten Commandments, the Beatitudes and Psalm 23. I was taught to say ” please, thank you, no ma’am and no sir.” I bowed my head and said “grace” before every meal. Before I went to bed, I knelt on my knees and prayed… ” Now I lay me down to sleep, I pray the Lord my soul to keep. If I die, before I wake, I pray the Lord my soul to take, amen”.
Now, the Ten Commandments are no longer allowed in Government buildings because they are “offensive and violate the freedom of religion”. Whose religion?????? Not mine. Children can not stand and say the Lord’s Prayer because ” it violates the rights of others”. Whose rights? Not mine. We live in world that is now more worried about the rights of others that we no longer have rights. We worry about violating other’s freedoms to the point where we have no freedom. We are no longer a ” Nation Under God”. We replaced our Fearless attitude with that of being fearful…..

Mr. Irwin forgot what the news anchor reported and the images he saw shortly after seeing them. He shuffled on down the hall to bingo without a care in the world…………oh how I wish I could do the same.

The Toolbelt

Administrators in long term health care settings wear many hats. You may find us writing zero based budgets, drafting care plans, resolving conflicts, overseeing daily operations, hiring, firing, plunging toilets, changing light bulbs- on and on the list goes. They truly are “jacks of all trades”! If they wore a toolbelt- it would house so many things, the load would be too heavy to bear.

I personally do not mind doing the oddball or mundane things, even though some administrators do. I find that being present and tending to things others cannot do, or aren’t there to handle, shows everyone under your leadership that “not my job” are words not in our vocabulary. The task is there, it needs to be handled, so we do it. Pretty simple.

However, there are some tasks that are emotionally taxing. It is the hardest of hard duties. It is the part of my job that is not required of me by Home Office, Regional Operations Officers or anyone else. Rather it is mandated by no one other than me. Let me share with you a recent occurrence and maybe you can identify what it is that drives me insane and is the most challenging for me.

Pete was one of my most favorite residents- simply because he was a challenge to care for. He had lived with his wife until he became “too much to care for her”. He would become aggressive during care-making for an unsafe environment for them both. She brought him to the facility, dropped him off and never returned to visit. She would call occasionally, only to ask me if I thought he would die in the near future. Ummmmm, he was perfectly healthy aside from having dementia, so how could I possibly answer that???? I would tell her that he was doing well and seemed outwardly healthy- thinking she would be pleased. Rather she would reply ” Well, he cannot outlive his money”.         Look, I get it. I understand that dementia is a slow, silent goodbye that seems to drag on and on. People question quality vs quantity of life- but those are not my decisions to make or my judgement to pass. All I can offer is …” I understand” or ” I will keep you informed of any changes.” What else I can offer?

Two years passed. Pete continued to thrive. Then came COVID-19. It struck out of nowhere and he was hit fast and hard. I called the wife, explained how sick Pete was and explained the care we were providing. She told me to let her know “when he was close” so she could have the children looped in. He had children???? For 2 1/2 years, this guy had not had the first visitor and now we are talking about “looping the children in?” Alrightly then.

The phone rings……I answer it. It is Pete’s daughter who lives in Texas. She cries, I listen. She tells stories of her childhood and how great of a Father Pete was. I listen. She explains how she would come visit, but she has a demanding job, two kids and 4 dogs and it is a long drive. I listen. She continues with her childhood reminiscence of her dad teaching her to ride a bike, taking her to his office to work, teaching her to drive a stick shift and walking her down the aisle at her wedding. I listen.

After she hangs up, I return to Pete’s room, where he remains in critical condition and unresponsive. I sit with him, knowing he could draw his last breath at any second. His eyes are closed, his respirations are high, and he is struggling to hang on. I tell him I talked to his daughter, and that she loved him and missed him and “wished she was here” with him. I tell him his wife called as well. Then I sit in the silence, listening to the oxygen concentrator drone on.

The phone rings, I answer it. It is Pete’s son. He wants an update on his dad. He tells me he got his love of classical music from his dad. He owns over 300 vinyl records that his dad had collected over the years- some of worth a lot of money today, he explains. He tells me about the composers, the melody, the rhythm of the orchestra- things I do not even understand. I listen. He cries, I listen. He explains that he lives in the next town over, but “can’t deal” with his dad not “being in his right mind”. I listen. He tells me he will call back later and see how dad is doing.

I return to Pete’s room. I tell him his son called. I tell him he said he loves him and misses him. I sit in the silence not wanting him to die alone. I tell him his wife called, and said she loved him. I tell him his daughter called again. I tell him how much he is loved and that everything is going to be okay…….

Days go by. The calls stop. I sit and repeat myself ” Your wife called, your son called, your daughter called. They all love you”. “Everything is going to be okay.” I sit. I wait.

Nowhere in my job description does it say that I have to do this. Nowhere does it give me the right to pass judgement on the family. No one has empowered me to “understand” how difficult it is to “deal with dementia”. Nowhere is it written that I must sit with a dying patient, so he does not die alone. No one in my chain of command can make me understand why those who “love him so much” cannot be the ones at bedside with the man who did so much for them- not because I don’t want to do it, but rather because they want to do it and be there.

So, which part do you think was the hardest for me? Listening to the family, sitting with Pete or not having the ability to understand the dynamics of his family?         The answer?     The family dynamics and my inability to understand why they never came to see him, nor wanted to at least come say “goodbye”.   Is it empathy for not understanding their position and not wanting to see Pete “that way’, that I am lacking?    Is it compassion for the family I am lacking?    

There will always be another Pete situation. Another family with reasons for not being there.   My question is…. what am I am missing from my toolbelt that can better equip me for the next time?

The Yellow Bus

One of the most difficult decisions one can face is deciding to place a loved one in a nursing home, assisted living or memory care facility.  The are numerous components that must be studied, considered and finalized before moving forward with the plan.  The cost, location, services provided and care levels are always the first considerations when beginning the process.

However, one thing that is often overlooked, is the emotional upheaval caused for the loved one doing the “leg work” and finally making “the decision’ to place mom or dad in a “home”.  Sadness and guilt prevail, often causing the loved one to “hold on a little longer” and “make it work.”       I understand the difficulty of the facing the challenge of moving mom/dad into a facility, and I know the feelings that come with such a decision. Let’s look at it this way:

Do you remember when your first-born child was ready to go to kindergarten? I think most of us experienced it the same way; walking to the end of the driveway and waiting for the big yellow bus.   Once the bus was in sight, our heart rate sped up, anxiety set in and  tears began to roll down our cheeks.

first-day-of-school-hug-school-bus-1290 As the doors open, I think every parent’s heart stops for a brief moment.  Our brains go into over drive with “what- if” scenarios.  ” What if she needs me? What if he gets hurt ? What if he gets lost? What if  she doesn’t make friends?  What if she loses her lunch? What if the other kids make fun of her?…..”    On and on the “what- if list ” goes…..

Watching the little one board the bus and take a seat, every parent feels their first true heartbreak.  Waving goodbye while hiding the anguish is an incredible feat alone in itself.     It seems as time stands still, the clock hands barely moving as the day lingers……..tick-tock, tick…..tock……..tick………tock……..C’mon 1:30……….it’s almost time for the bus!!

The bright blue sky and rolling green grass make the perfect backdrop for the bright yellow bus as it chugs up over the hilltop. Parent’s wait eagerly for their stop….hearts pounding but full of joy. Finally, there the bus is!    The little ones hop off, full of stories of new friends, new teachers, new experiences…they are just FULL of things to talk about.

After a few weeks, the walk to the morning bus stop, is not quite as emotional. Parents start to make plans during the day; things they could not do as easily with  children; meeting an old friend for coffee, playing a short game of golf or simply cleaning the house.  Each parent realizes that “leaving home” and starting school is just the beginning in the cycle of life.     As time progresses, each parent is more relaxed and the separation anxiety subsides.

We can study the emotional aspects of placing our parent in a nursing home, assisted living or memory care unit, and determine it is the same roller coaster ride we experienced with our child starting school.  The feelings of fear, anxiousness, and loss are super magnified during the first few days of placement; all of which are anticipated and perfectly normal.    When the child leaves home on that first day of school, the parent is forced to trust so many people, all of which are unknown to the parent, with their most beloved child.  We know the school employs good people and each is scrutinized before hire to insure the well-being of each child, but still……the parent doesn’t know them.  

The same is true with placing an aged parent in a facility.  The same level of trust is required – Who are these people who will provide care to mom? What are their credentials? What if they hurt my dad? Are they patient, kind and considerate? Will they treat my mom like I treated her? 

All of the worry in the world will not change the needs of mom or dad. Once dementia has tackled the brain, constant supervision and assistance will be needed.  The decision must be made……trust must be entertained and established in the care-giving team.           Am I saying every caregiver and every facility is an upstanding, outstanding beacon in the night? Absolutely not.  Just as there are bad apples in every bushel, no profession is exempt from the having that one employee who needs to peel potatoes for a living.  We must remember that for every “bad caregiver” there are countless thousands of outstanding, loving and committed individuals who are beyond dedicated to the profession.

Just as the cycle of life begins with that big yellow school bus, the cycle winds around to the big building full of nurses, caregivers and a whole host of other dedicated people waiting to care for mom or dad. The same level of trust is required for both groups and the same emotional upheaval will occur over and over again, until………….a little time elapses and you realize that it really is okay.  It really is okay.   The anxious feelings will always be there; (who doesn’t worry about their child, even when they are an adult?), but you will understand the emotions are normal.

The decision will always be a struggle, but understanding the aging process and the variables that go with it will ease the anxiety and allow for comfort.    I think Roslyn Carter says it best in defining the cycle of life:

There are only four kinds of people in the world.
Those who have been caregivers.Those who are currently caregivers.
Those who will be caregivers, and those who will need a caregiver.
― Rosalyn Carter

 

 

May we all find and be the best of the four kinds of people and enjoy the cycle of life and realize hat big yellow bus was not so scary after all.

Stages of Dementia

Seven Stages of Dementia | Symptoms & Progression

Health professionals sometimes discuss dementia in “stages,” which refers to how far a person’s dementia has progressed. Defining a person’s disease stage helps physicians determine the best treatment approach and aids communication between health providers and caregivers. Sometimes the stage is simply referred to as “early stage”, “middle stage” or “late-stage” dementia, but often a more exact stage is assigned, based on a person’s symptoms.  This article discusses three scales that use stages.

 

1) Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS)

The most common scale is often referred to simply as GDS or by its more formal name the Reisberg Scale. The GDS divides the disease process into seven stages based on the amount of cognitive decline. This test is most relevant for people who have Alzheimer’s disease, since some other types of dementia (i.e. frontotemporal dementia) do not always include memory loss.

Diagnosis Stage Signs and Symptoms
No Dementia Stage 1:
No Cognitive Decline
In this stage the person functions normally, has no memory loss, and is mentally healthy. People with NO dementia would be considered to be in Stage 1.
No Dementia Stage 2:
Very Mild Cognitive Decline
This stage is used to describe normal forgetfulness associated with aging; for example, forgetfulness of names and where familiar objects were left. Symptoms are not evident to loved ones or the physician.
No Dementia Stage 3:
Mild Cognitive Decline
This stage includes increased forgetfulness, slight difficulty concentrating, decreased work performance. People may get lost more often or have difficulty finding the right words. At this stage, a person’s loved ones will begin to notice a cognitive decline. Average duration: 7 years before onset of dementia
Early-stage Stage 4:
Moderate Cognitive Decline
This stage includes difficulty concentrating, decreased memory of recent events, and difficulties managing finances or traveling alone to new locations. People have trouble completing complex tasks efficiently or accurately and may be in denial about their symptoms. They may also start withdrawing from family or friends, because socialization becomes difficult. At this stage a physician can detect clear cognitive problems during a patient interview and exam. Average duration: 2 years
Mid-Stage Stage 5:
Moderately Severe Cognitive Decline
People in this stage have major memory deficiencies and need some assistance to complete their daily activities (dressing, bathing, preparing meals). Memory loss is more prominent and may include major relevant aspects of current lives; for example, people may not remember their address or phone number and may not know the time or day or where they are. Average duration: 1.5 years
Mid-Stage Stage 6:
Severe Cognitive Decline (Middle Dementia)
People in Stage 6 require extensive assistance to carry out daily activities. They start to forget names of close family members and have little memory of recent events. Many people can remember only some details of earlier life. They also have difficulty counting down from 10 and finishing tasks. Incontinence (loss of bladder or bowel control) is a problem in this stage. Ability to speak declines. Personality changes, such as delusions (believing something to be true that is not), compulsions (repeating a simple behavior, such as cleaning), or anxiety and agitation may occur. Average duration: 2.5 years
Late-Stage Stage 7:
Very Severe Cognitive Decline (Late Dementia)
People in this stage have essentially no ability to speak or communicate. They require assistance with most activities (e.g., using the toilet, eating). They often lose psychomotor skills, for example, the ability to walk. Average duration: 2.5 years

(Reisberg, et al., 1982; DeLeon and Reisberg, 1999)

 

2) Functional Assessment Staging (FAST)

The second scale is called the Functional Assessment Staging Test or by the acronym FAST. FAST also employs a seven-stage system based on level of functioning and daily activities.  However, FAST focuses more on an individual’s level of functioning and activities of daily living versus cognitive decline. Note: A person may be at a different stage cognitively (GDS stage) and functionally (FAST stage).

Functional Assessment Staging (FAST)
Stage 1 — Normal adult
No functional decline
Stage 2 — Normal older adult
Personal awareness of some functional decline.
Stage 3 — Early Alzheimer’s disease
Noticeable deficits in demanding job situations.
Stage 4 — Mild Alzheimer’s
Requires assistance in complicated tasks such as handling finances, planning parties, etc.
Stage 5 — Moderate Alzheimer’s
Requires assistance in choosing proper attire.
Stage 6 — Moderately severe Alzheimer’s
Requires assistance dressing, bathing, and toileting. Experiences urinary and fecal incontinence.
Stage 7 — Severe Alzheimer’s
Speech ability declines to about a half-dozen intelligible words. Progressive loss of abilities to walk, sit up, smile, and hold head up. (Reisberg, et al., 1988)

 

3) Clinical Dementia Rating (CDR)

The Clinical Dementia Rating (CDR) scale uses a five-stage system based on cognitive (thinking) abilities and the individual’s ability to function. This scale is more commonly used in dementia research and less so as a communication tool between medical professionals and patients and their families. This is the most widely used staging system in dementia research. Here, the person with suspected dementia is evaluated by a health professional in six areas: memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care and one of five possible stages is assigned.

Clinical Dementia Rating (CDR) Scale
CDR-0 — No dementia
CDR-0.5 — Mild
Memory problems are slight but consistent; some difficulties with time and problem solving; daily life slightly impaired
CDR-1 Mild
Memory loss moderate, especially for recent events, and interferes with daily activities. Moderate difficulty with solving problems; cannot function independently at community affairs; difficulty with daily activities and hobbies, especially complex ones.
CDR-2 — Moderate
More profound memory loss, only retaining highly learned material; disoriented with respect to time and place; lacking good judgment and difficulty handling problems; little or no independent function at home; can only do simple chores and has few interests.
CDR-3 — Severe
Severe memory loss; not oriented with respect to time or place; no judgment or problem solving abilities; cannot participate in community affairs outside the home; requires help with all tasks of daily living and requires help with most personal care. Often incontinent.

View References

de Leon MJ and Reisberg B. An Atlas of Alzheimer’s Disease. The Encyclopedia of Visual Medicine Series. Parthenon Publishing, Carnforth, 1999. Available at: http://www.alzinfo.org/clinical-stages-of-alzheimers

Reisberg B et al. The Global Deterioration Scale for Assessment of Primary Degenerative Dementia. American Journal of Psychiatry. 1982;139(9):1136-1139.

 

In the Know….

Assisted living is one of the fastest growing areas of health care, as many who are in need of long-term care are seeking out the aesthetically pleasing, homelike environment of assisted living rather than the institutional skilled nursing environment.

The problem

There are a number of people who are living in assisted living facilities (ALFs) who have some degree of dementia—and too often, the difficult problem is that these residents are not identified or treated appropriately.

According to the 2016 Alzheimer’s Facts & Figures [PDF] report by the Alzheimer’s Association, 42% of residents in assisted living have some form of dementia or cognitive impairment, and that number is increasing every day.

Yet only 58% of those facilities provide a memory care program.

The solutions

These facts and our own experience and observations indicate that environments are often ill-prepared to care for this population. We believe that the root of the care management problem is in the resident admission and ongoing assessment process.

In many ALFs, the resident assessment performed by the facility is very lean and is often more like a questionnaire of needs than a professional assessment of needs. A physician assessment is usually performed prior to admission, but often this does not adequately identify the cognitive status and the specific associated functional limitations or abilities of the client. Many people move to an ALF in Allen level 4, and we know that in Allen level 4, persons will have IADL and then ADL needs. However, we also know that these individuals are not good self-reporters of needs.

In our experience, a facility may have half of its residents performing in Allen level 4, and this is the level in which we have witnessed the greatest discrepancy in what is delivered versus what is actually needed. We know the problem is associated with the often relatively intact verbal skills fooling the assessor. It will then take time for the facility to realize that Mrs. Smith is having some problems, and by then the problems may have led to a serious issue such as a fall or depression leading to hospitalization.

The key for success is rooted in enhancing the facility assessment process. This should be done in two ways:

  1. Improved resident assessment performed by the facility. The facility must identify a team member within the environment who can perform a comprehensive evaluation of needs. The evaluation is usually performed by the Director of Nursing or other lead nurse. The evaluation should include a cognitive assessment such as the FAST, GDS, MMSE, and/or SLUMS. In addition, the assessment should look at other areas that impact function such as physical limitations and sensory loss. The assessor will then make a determination of the level of assist the resident may require. This will help eliminate the trial-and-error getting-to-know-you process that typically ensues after admission.
  2. A professional therapy assessment. Many ALFs use home health as the only source of therapy involvement. Most often, the delivery of service involves coming in AFTER the resident has had a medical issue and/or hospitalization. This doesn’t solve our need for a proactive therapy assessment to help identify the care needs and necessary approaches for a complex client. We recommend an ALF partner with a therapy organization who can bill Medicare Part B and is trained in the Allen theory. We suggest the therapy team be on site five days per week and truly become a part of the ALF team. When a resident is admitted who has an Alzheimer’s or related dementia diagnosis, the therapist can perform an evaluation, including the Allen cognitive assessment, identify the person’s best ability to function, and create a plan to maximize and maintain the person’s function and safety.

Another essential element for success is dementia care training for all facility staff. Over 30 states in the US now require some amount of specialized dementia training for facility staff of an ALF that markets caring for persons with dementia. We believe it is absolutely essential that staff are prepared with a quality dementia training program to help them understand the complexities of the disease and approaches that work.

 

Summary

In our opinion, many assisted living facilities do not know the complexity of the clients that they’re serving. Many are oblivious to the pervasiveness of dementia and the relationship of dementia to poor outcomes and high liability. This is a golden environment for therapists to be a part of as we infuse a high degree of sophisticated medical and dementia assessment/care knowledge that will help the residents and the facility succeed. We believe that ALFs can be a wonderful alternative to skilled nursing facilities or to remaining at home. However, these environments must begin to provide the expertise needed to serve persons with dementia.

Fun Facts

Have A Happy Thanksgiving!

Did You Know… 

Although Thanksgiving was celebrated by the early settlers to the country in 1621, it wasn’t an official holiday until 200 years later. When Abe Lincoln declared Thanksgiving a national holiday in 1863, it was thanks to the tireless efforts of a magazine editor named Sarah Josepha Hale. Her other claim to fame? She also wrote the nursery rhyme, “Mary had a Little Lamb.”

91% of Americans eat turkey on Thanksgiving. Californians consume the most turkey in the U.S. on Thanksgiving Day!

The First Thanksgiving lasted for three days.

20% of cranberries eaten are eaten on Thanksgiving.

Pumpkin pie didn’t become a staple until the second Thanksgiving.

According to the American Pie Council (yes, there is one), the flavor of pie you like will describe your personality.

If you love…………………………………. You are likely to describe yourself as…
Apple Pie:                                    Independent, realistic and compassionate
Pecan Pie:                                    Thoughtful and analytical
Chocolate Pie:                              Loving
Pumpkin Pie:                              Funny and independent

Happy Thanksgiving!!!!!!!