To Wake Up or Not to Wake Up-an alzheimer journey by Sue Scoggins

This is so random.

I want to preface this by saying two things.

1. Currently Jerry is holding his own.  

2. if Jerry is hungry.....I'm all for giving him what he wants.  In no way, should he be denied.

3. I could not ask for better care that what he gets at his place of residence.

The home where Jerry resides is on a well planned set schedule.  Each resident is woken up around 7:00 and being served breakfast about 8:00.  Some of the residents are actually out of their PJ's and dressed before breakfast.  The others are cleaned up after they eat.  Their first activity is at 10:00.  Lunch is at 11:30 or 12:00.  Then rest time until 1:30.  Then another activity (many times with the more independent residents) at 2:00.  Dinner at 4:30 or 5:00.  Then, sometimes a visiting band comes to play at night.  They have a full day.

Other residential facilities, I've heard, allow their residents to sleep in.  So if a resident sleeps in until 10:30 or so....is that a good thing or not so good?  Is it ok that they miss breakfast?  I suppose if the resident was in that routine before they were in a facility and that is how they lived.....why shouldn't they be allowed to continue?  This is their home.  Right?  

I've been thinking about all of that lately.  If Jerry were not woken up, he would sleep...who knows....all day, maybe.  RIght now he naps most of some days anyway.  However, since he is on a routine and woken up...this means that he does not skip mealtime and does not skip an activity (unless he is in one of his "unresponsive" zones).  This means he gets more stimulation.  This means his days are not as mundane.  So that's a good thing.  Actually, Jerry probably does not know what happens from day to day, nor from minute to minute either.  He is not aware of anything after the "moment" but I do believe that being surrounded with upbeat activity sets the tone for a more happy day.

Understandably a staff needs a schedule and structure.  What if the one who is allowed to sleep becomes hungry and wants breakfast?  The staff can't exactly have an open kitchen.  It would be like the woman in the shoe, who had so many kids she didn't know what to do.  Sort of like my daughter's kitchen.  Never closed!  Chaos! 

Do the residents actually recognize hunger?  Or is it the routine of mealtime that makes them pick up that chicken sandwich? So what happens if they skip a meal and sleep instead?   Is that so bad? I skip a meal sometimes and, trust me, I'm not wasting away.  Do they need to eat for nutrition, considering they are not ever going to get better anyway?  Or should they be offered an opportunity to eat simply to satisfy their desire...I mean if Jerry wants ice cream...let him have it...if he doesn't care about eating....why force him?  Questions!  Questions!    If Jerry is sleeping at the table does he need to be woken up to eat?  Seriously.  What would happen if he skipped a meal?  Would he die?  I hardly think so.  And isn't he in the process of a terminal disease anyway?  What would happen if he slept through the afternoon snack? Do we wake a sleeping baby to give him a cookie?  Jerry was never a snacker anyway.  Never ate goldfish.  And if he actually DID snack...it was a bag of peanuts that he shelled while watching football.  I'm so confused!

Recently, Jerry was peacefully sleeping on my shoulder and we were enjoying a nice quiet moment together.   A staff member courteously came by and tried to wake him to offer him a cookie. "Jerry! Jerry!  Wanna a cookie?"  After several attempts and a bit of a "kind scowl" from me....she shrugged her shoulders, gave up and walked away....ate the cookie herself instead.

Sometimes, I just don't understand these things.  

Out for Pizza

Kudos are in order for a great  little pizza place, named Paula’s Pizza in New Bern, North Carolina.  The reason I mention them is that they are so accommodating to the Alzheimer residents at Jerry’s home. Once a month, the activity director and her assistant take those who are able on a little outing for lunch.   The residents are patiently lined up in the back hallway, rolled out a few at a time to the bus and taken to their seats.  Those who can walk, sometimes help with the others who are in wheel chairs.  Each resident is loaded with care, wheelchairs, walkers and all.  It's at least a 45 minute procedure.  Once everyone is seat belted in,  they truck on over  to Paula's Pizza for  lunch.

Paula’s Pizza has tables all lined up, ready for the crew to arrive.  The unloading is quite a spectacle, but the restaurant is very accommodating.  Each resident is treated with respect and dignity as their order is patiently taken.  With the help of the staff, it's mind reading at it's best!   Mini pizzas or spaghetti dishes arrive piping hot with little side salads.  While everyone needs their food cut, but most of them can feed themselves with only a little prompting.  Some dementia patients, like Jerry, are able to feed themselves physically.  Jerry can hold a fork but just needs reminding of  what to do with it.  If the food is good, he'll eat it.  (If it's meat and vegetables, he'll ignore it.  Go figure!)

Outings really can't last for much more than an hour and a half.  Scheduling is essential because of routine, bathroom needs, etc.   Once pizza time is over, the activity director pays the bill, while the other staff members begin loading the bus again and off they go, back to their home.

These outings are a welcome change to the daily routine.  It would be easy just to let the residents roam around the halls, day in and day out.  Each new activity brings a little energy to their day.  WORK best  describes the efforts of lining them up, loading them, unloading them, ordering, feeding, loading and unloading again, but it is worth it.  It's important to givie an alzheimer patient as much "normalcy" as possible in their journey.