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.
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.
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|
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|
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|
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|
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
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.
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.
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.
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.
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:
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.
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.
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
We all have that one resident-the one who touches the caregiver’s life in way that can not be explained. This is the case with a gentleman we nicknamed “Pop”; who moved into the facility in late October. Dementia had taken control of his thoughts causing him to need total care. One thing Pop could do very well was….talk. The man loved to talk!
Let me share a little background to help you know the man we all loved and understand the power of interaction between caregiver and patient.
Pop spent his entire life working as a Game Warden – he loved the outdoors which made his job the perfect fit for his life. His side hobby was rebuilding classic cars and tinkering with his own 97 short-bed Ford Ranger. Pop believed in stretching his dollar as far as it could be stretched and then some, so much so, people would say “he is so tight, he squeaks when he walks” If a new fuel pump was $69.99 at one store, he would travel 25 miles to save eight cents!
As Pop aged, he needed a little help with pulling transmissions, starters and other such big jobs . When seeking someone to help him out, he would call around and ask ” Hey Buddy, how much would you charge to help me for about two hours today?” If Pop thought the price was too high, he would reply,” Let me think on it get back to you.” He would then proceed down his list, calling each- “Hey Buddy, how much would you charge to help me for about two hours today?”. He would then say, “Let me get back to you……”.
Sadly, Pop began to show signs of dementia shortly after his retirement. He and his wife , Sarah, lived alone in a very rural area, with their sons living in a distant city. Sarah did the best she could, managing the house, finances, grocery shopping, lawn care and every other task associated with every-day life. The day finally came for her to reach out to her children for assistance; describing herself as ‘worn out, worn down and exhausted”. Within hours, Sarah and Pop were in the car, headed to the city to stay with their oldest son, Jerry.
Once everyone was settled in, Jerry saw a side of his father he had never seen before -a man who was aggressive when Sarah tried to help him shower and “get him cleaned up” as she called it. Jerry realized that the family was not equipped to handle Pop, for fear of him hurting Sarah due to the progression of the disease process. It was at that point, Pop moved into the facility and a new chapter for everyone involved would be written.
Oh how the staff loved Pop! He would call out, “Hey Buddy, come here. How much would you charge to put this started in? ” “Hey Buddy, come here, let me talk to you for a minute. How much are we looking at for the muffler and the tailpipe?” The staff, including myself would name our price which varied greatly- some would say $200 cash, others would say $15.00,- whatever the price was Pop would reply: “I have to think on it. When do I have to let you know?
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
Twenty minutes would pass, Pop would call out again- repeating the same as before. Again the staff would reply with their prices, leaving Pop to think on it each and every time. Like clockwork, every day, every 15-20 minutes or so ( unless he was napping), Pop was always bidding out his labor needs. The days he wanted to go in great detail about his automotive concerns, the staff would sit down with him and talk “car parts” with him, until he dozed off.
Then came Thursday. As I walked past Pop, he called out…“Hey Buddy, come here, I want to ask you something. How much would you charge to put a starter in a pickup truck? ” Without hesitation, I gave him a price of $650 to which he replied, “Let me think about that. Is that for parts and everything? I just have to think on it..” The rest of the day, Pop dozed on and off, didn’t eat much for dinner and just seemed “not right”. The nurses assessed him finding his overall vitals being within normal limits, no issues noted. As the evening wore on, Pop declined further causing the nurses to send him out to the hospital.
Friday morning, Jerry came to my office. I could tell by his facial expression, this was not going to be good. “ Dad’s not going to make it. He is in heart failure, kidney failure and a whole list of other things that the doc says aren’t good. We will be lucky if he makes it through the weekend. I appreciate everything you and your staff have done to give his life meaning and purpose.” We talked about the great life Pop had lived, about his cars and farm…….we just talked. I asked hos Sarah was holding up under the present circumstance and of course the answer was not good.
Later that day, I stopped by the hospital to check in on the family and on Pop. Sarah was beyond devastation; but there she sat, holding Pop’s hand as the tears rolled down her cheeks. Pop laid perfectly still in the bed, eyes closed. When the time came for me to slip out, I leaned over to Pop, and said….” Hey Pop, I am going to drop that price I gave you on the starter job. Going to drop it down to $5, everything included.” His eyes opened and he softly mumbled something……… The family was in shock at his reaction as was I. Just as quickly as he opened his eyes, he closed them again. Saturday morning, Pop passed away.
The reason I chose to write about Pop was this: Those working in health care field need to know that those under their care, responsive or not, confused or not- every encounter matters. The nursing assistant that sat with Pop and rebuilt the engine for $50 dollars didn’t know how to change oil in her own car, but carried the conversation with him and gave him a sense of purpose. The nurse who would seek Pop out to make conversation about cars- gave Pop and opportunity to be the man he was.
Health care workers have hard jobs. Yet, be it known that the work they do matters. If I could say one thing to any health care provider regardless of rank or file, it would be : What you do and say to every patient MATTERS. Your kindness and compassion may go unnoticed, but as evidenced by Pop, it is remembered by the patient. Dementia, Alzheimer’s, strokes- whatever the diagnosis a patient may have- you touch their life when you take the time just to listen and have a conversation. Many people would have thought Pop was just a confused man who was stuck in the past- but he wasn’t. The diagnosis is not the identity of any person- the time spent with the resident will reveal who they really are. Find the time to know your patient and be present in their lives.
Pop, my staff and I will never forget you. You mattered to us and thank you for allowing us to matter to you. I have to go for now Pop, but I will carry your memory always.
Hey buddy, come here………………….
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………
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…..so 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.