Saturday, December 27, 2014

Reality Check: Time & Clocks in a Dementia Driven Person's World

In our individually busy and hectic worlds, we look forward to being somewhere there are few or no clocks, no reminders of the passage of time. We long for a place where there's "nothing to do". 

ENTER A LONG TERM CARE FACILITY AS A RESIDENT and you're in this place where time often stands still but I doubt you'll really want to stay for very long.

Let's set the stage for the Long Term Care/Skilled Nursing Facility:  Residents are primarily in wheelchairs or use self driven mobility "vehicles". A few use walkers. It's rare to find some residents walking on their own or using canes. Many have visual challenges and anything at a distance or of "average" size is often not visible or able to be "seen" by most residents.

Remember, there are many residents with some form of Dementia and they're in various stages of ability to recognize and interpret visual information.

Contrary to current belief by many, Dementia isn't relegated in LTC/SNC's to specific "Alzheimer's Units" or other "segregated areas". 

In Mom's most recent facility, it was obvious there were fewer than 10% on any floor without some form/stage of Dementia and each floor accommodated about 50 or more people on two "wings" while the "Alzheimer's Unit" or "Special Neighborhood" only accommodates around 20 residents.

How well would you get through daily life without a clock nearby?

CLOCKS: How many clocks are there? Where are they located?
               What type are they?

Residents can have a clock of their choice in their room and can wear a watch or use a timepiece. The challenge is keeping them due to "disappearances" that can even include the resident or roommate who has Dementia "borrowing" or even throwing the item away.

Finding and purchasing a watch/clock that's easy to read is also a major challenge. We know. We searched high and low. Clocks with traditional circular faces became impossible to read; the brain no longer understood this abstract layout and the eyes/brain had difficulty comprehending the number "4" meant twenty minutes past an hour and not four minutes past; the 8 was difficult to read as twenty minutes to the hour or forty minutes past. These more advanced reasoning skillsets diminished and disappeared.

Clocks with arabic numbers and arranged linearly worked best. We opted for an alarm clock because Mom could hold it in her hands and place it closer or farther from her eyes as she wanted.

Mom wanted an alarm clock always in her room until about four months before she passed. In the last year of her life, we were replacing them about every three weeks. 

We searched until we found one that had lighted numerals thinking the color and the large size would help. That worked for a while, except as Mom's Dementia progressed, she didn't realize if she placed the clock right side up or upside down.This digital clock wasn't everywhere; clocks are becoming scarcer and scarcer to find. We couldn't afford to buy more than one at a time so we would constantly pray the one place, the only place, we'd found this timepiece would continue to carry them and have at least one in stock.

Mom was functioning with the clock out of retained habit; remaining ability and remaining desire. 

Mom went from resetting her alarm (through random pushing of buttons as her ability to retain this skill apparently left sometime during her first year at this facility) to closing it in the drawer of her nightstand, knocking it off the side where it hung until we noticed it or somehow disconnecting it from the wall plug and putting it anywhere she thought about at the time. 

However, Mom was still in the stage of recognizing items from her life and "needing" them to be there even when she couldn't use it.

We went through this with less safe items: iron/ironing board, pots and pans on stoves, sewing kit with needles. It was a progression -- the lessening of her mental and physical abilities to accurately and safely use every day items.

The challenge for us was understanding when she'd arrived at a stage where it was less safe for her to have access to certain things. It was the reversal of building certain skillsets -- as you would do with a young person.

No one gave us any advice; no warnings. And, care givers cannot always go to a meeting because someone has to stay with the person needing care giving. This is another of my "advocacy" for understanding and recognition of agencies and organizations to provide connectivity. Our connectivity with organizations gave us such little help, so small an amount of information and often incorrect information because it was all geared towards Alzheimers and Lewy Body Dementia is "a horse of a different color".

We constantly played "hide and seek" trying to put the clock back for her because she "had to have it" and "needed it to ring at 5 AM so she could get things done". The alarm clock became a fixation perhaps because it was one remaining constant of her previous life that helped her hang on-- to a life she didn't want to leave and wanted to return to--a life where she was in control of what she did, when she did it. 

I didn't see that then; I do now.

At the time, we didn't recognize or draw inference or conclusion from finding the clock on the floor, upside down or broken. And, no one counseled us, no Social Worker, no Doctor, no Director of Nursing, no Administrator. 

No one guided us, no one cared enough to have any kind of "information meetings". The facility and its entire organization joined with The Alzheimer's Association and co-sponsored some "talks" held in large facilities with large groups of people but NEVER offered any on site group meetings or any education from their "MEDICAL STAFF".  

It was as though Mom's Dementia progression was seen but not heard, not discussed and certainly not recognized especially for its specific type, Lewy Body Dementia.

We believe the reason for not acknowledging Mom's decreasing abilities and growing Dementia, Lewy Body Dementia, was the requirements for more personalized care necessitated by Medicare guidelines. That would increase cost to the facility and cost cutting was evident everywhere.

Because this type of behavior (the clock being somewhere else like under her nightstand or broken) wasn't typical for Mom, her brain, we believe "invented" a little boy who came in and did these types of things -- dropped, threw and even moved things around. 

I WONDER:  An active, involved mind, capable and creative.......
Are Delusions really "made up stories" or are they a means the brain is using to cope with a situation it knows should be different, has always been different, and so "invents" a scenerio that upon general analysis (little boys have always been characterized as "mischevious" and more so during Mom's early years) is seen as "delusional" yet makes good sense if we use analytical thinking and understanding the life of the individual?

PERSONAL NOTE:  The Lewy Body Dementia brain for us seemed to be a never ending source of adaptation for as long as it could resist the building of the blockages. We would marvel at how Mom adapted and adopted to changes, much as she had all her life when challenges in work and in her marriage necessitated her being resourceful and creative.


In the Reception area in Mom's facility is a traditional clock located on a side wall of the Receptionist's desk area. It's the type that has the numbers arranged from right to left around a circle. Another clock, small in size, a table decoration with roman numerals sits in the "living room" area on a side table. More visual for visitors than for residents and certainly more capable of being read.

CHALLENGES:  Locations. The clocks cannot be read easily by anyone in a wheelchair unless they're positioned at an angle that allows visibility. Many Dementia patients lose the ability to read this type of clock and need the type that displays the numbers as a time, e.g.: 5:15 PM. 

Anyone who wants to know what time it is in the reception area has to stand at the reception desk and look to the right or with good eyesight can see it from a few other select locations. But you have to be standing. Only in one small area, the entry into the receptionists desk, can anyone seated really see the time on the clock that hangs on the wall.

TICK TOCK TICK TOCK  Time passes and how do residents "know" when it's time for breakfast, lunch or dinner or shower or whatever?

Simple. Most are told. An Aide lets them know when it's "their time" to eat. Notations on who eats where determines when the resident is "told" and of course, general status of the day determines if they're told or "let to figure it out" on their own. Usually that happens, especially with advancing Dementia by someone saying, "Why, "Mary", aren't you going to breakfast/lunch/dinner?"

However, in this usually understaffed, underserved facility (as so many are), sometimes Aides forget who they've told and who they haven't and only when they notice it's too late to go down, offer to sit them in the floor dining room or bring a tray.

That's complicated because often the food served upstairs isn't the same as what's available down and the only alternative at this "late time" is finding a sandwich inside the floor's refrigerator. A practice that was discontinued; food on the floor became a rarity -- a violation of State Law, not to have food readily available but no one really cared. Again, reports and outcries fall on deaf ears because there's no ability to enforce any standards without specific standards in place.

Aides know the routine: tell a resident it's time for breakfast and they need assistance (many of them) to go to the bathroom.

You see, only the most capable can use the bathrooms on the first floor. The seats aren't high enough and there is no one to assist you -- they're typical public restrooms with one stall as "handicap" with side rails and one stall regular and little room to move around in if you have a wheelchair.

SUMMARY COMMENT ON CLOCKS:  Seniors with advancing mental and physical challenges need easily read clocks placed in several locations highly visible and with numbers and letters displayed in a format easily comprehended: Example: 5:30 P M and displayed in a color or colors promoting easier "reading".

CALENDARS.  Try to find one displayed in Mom's facility. Residents were given a calendar every year but it was their "right" to display it or not and for those who couldn't get this flexible and flimsy paper calendar affixed to their wall (or a family member didn't do it for them), the calendar often "got lost" either misplaced in a drawer, thrown into the trash (presumably by mistake) or "carried away" by another resident who's state of mind didn't realize it wasn't "their room, their things" and no one noticed, was supervising or cared to see items in the room were missing or there were "extras" that belonged somewhere else.

HOW DO RESIDENTS KNOW WHAT DAY IT IS?  Well, if they don't have their own calendar, or it's not displayed on a "calendar" type clock in their room, or they don't have a TV or other means of "hearing" the day, date, time, weather, who the President is or any other information on the current world.... THEY DON'T. Yet they're asked in the MDS test mandated to be given if they know what day of the week it is, the month, the day and the year.

OH! My mistake, someone usually writes it on a blackboard (writes usually, not prints, so it's difficult to read) that's in the hall and supposed to list activities for the day. WHAT SHOULD THERE BE?  A large monthly calendar with large numbers and a ring that can be moved from one day to the next; a resident could even be "asked" if they'd like to move the ring. A WEATHER INDICATOR -- What the weather's like today and what's forecast for the rest of the week. 

ASK YOURSELF:  Without your cell phone, without a computer in front of you, without any means to check the date, would you always know what day it was? 

Do you sometimes get confused as to what day of the week it is? 

If you're inside a building often with no windows in areas where you are or/and curtains are drawn by a roommate who controls that part of the room -- how do you know what the weather's like outside?

MY BELIEF:  Residents in facilities age quicker and become demented due to the conditions under which they must live. Little exercise, little access to information and lack of interest in them as individuals.

They may lose track and eventually lose interest seeming to be even more "incapacitated" than they really are OR to have "lost interest" or even worse, "be depressed".

QUESTION:  How do facilities make accurate records of the capabiltieis of residents and their mental capacity when most are kept unaware of these basic everyday facts?

CONSIDER:  You go on vacation and you have no access to cell phone, phone, internet, books, magazines, newspapers, radio or any form of "world information".  You have no clock or calendar.


AH.....PROVIDING INFORMATION TO RESIDENTS.... another topic to consider:  How Residents Are Kept Complacent and Focused through Information Deprivation and Select Sharing of Topics

BLOG ENTRY TAKE AWAY:  Sensory deprivation and information limitation or selective provision can be a factor of the advancement of Dementia not being considered and should be addressed.

Thanks for reading and sharing. Please add your comments. Discussion and open consideration of Dementia in all its forms will lead to a better quality of life for millions.

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