Supplies and Things - an alzheimer journey by Sue Scoggins

Just tidbits of information for those of you who have loved ones in a facility.

I've found that when providing supplies, such as shampoo, razors, toothpaste, undergarments (diapers), it's best to send them in limited supply.  Even though everything is labeled, sometimes supplies get "moved" to another room.  Diapers disappear more quickly, for example.  Think about it.  If a resident goes through 2 diapers per shift, that makes 6 in one day.  Multiply by 7, that's 42 per week.  Times 4, that is 168 per month. 16 Depends at $20, that's $210 per month.  (on top of the $4500 that you are already spending on the facility. Yikes!) Those little things are made of gold  (not to be confused with yellow, ha.)  So, hand them out with caution.

Clothes are good to refresh every season.  Even though the temperature is constant, it's still nice to have a change of seasons...colors..and shoes from time to time.  However, too many clothes just end up being wadded up and not worn.  At Jerry's facility, the laundry is done daily.

When Jerry first went into the facility, I kept a supply of Oreos in those mini packs, a can of peanuts, and some snickers in his drawer.  We don't do that anymore.  We also had CD's of his favorite things, like: Carolina basketball, Alabama football and bluegrass music for his room.  He rarely stayed in his room, however, so eventually he didn't even need that.  I brought the TV home, because he stays in the main activity room and sits with his new friends.

Stay, Montana!  Stay!

Hmm. What else?  There are a few things that I try to do when visiting.  Since there really isn't much two way conversation, sometimes it's difficult to keep coming up with things to say.  Reading and looking at magazines is good.  When the weather is cooperating, we sit on the patio with the other residents.  Even though Jerry doesn't speak, it still feels like he is included when we all sit an rock on the front porch together...like people use to do in the good ole days.  Sometimes I bring a small speaker to plug into my iPhone and play music.  Everyone seems to like that and sometimes Jerry's foot begins to tap.  (or at least it use to.)  For Jerry, a ball use to get some reaction: football, or big rubber ball.  Last but not least.. pets always bring smiles.  Montana comes to visit at least once a month and sometimes sits in Jerry's lap whether she likes it or not.  

Hang in there, my friends.

Grace

In the grand scheme of things.......GRACE.

Have you ever felt confused?  Have you ever had a nagging pain in your neck or your back?  Or have you ever tried to keep a migraine at bay?

Most of us have experienced all of those things.  Think about it.  When you are trying to keep a migraine at bay...it's all you can do to smile.  If your back is giving you nagging pain, it's all you can do to stay upright.  When you've had a confused moment...doesn't it kind of set you back a notch or two?  Don't you question yourself?  I do.  I wonder if I'm losing it.  I tell myself to slow down, keep calm and think things through.  It's totally self absorbing.

I can imagine this is the way it is in the beginning to moderate stages of Alzheimer's Disease or dementia.  The fact that you are aware that you are "losing it"...just the awareness...must be totally mind consuming.  "No.  I'm going to beat this.  I'm NOT going to get confused.  I'm going to keep it together."  I remember Jerry saying those things.  I know he tried so hard for as long as he could.   It was so difficult....then add to it the self doubt, discouragement and depression that underlies it all knowing you're not who you once were.  AND, fighting off knowing what lies ahead.  It's unfathomably difficult.

Looking back, I regret times when my demands were too high.  I regret the times I expected him to put the chair back under the table or close the cabinet doors and drawers. How much was the disease and how much were these things just laziness?  I regret the frustrations that got the best of me when he just "didn't get it".  Why he would let the dog in, then out, then in again.  I promise I'm not beating myself up over it.  How could I have known that it was a part of the disease.  What did I know?  I didn't know a soul with Alzheimer's disease.  Every day was a new learning experience.

For all you newbies, remember the word GRACE.  GRACE,  emblazon it on the back of your hand so that you are reminded every day to give your loved one grace.  In those AWARE days, when they know they are losing it....they need grace.....they need unconditional love and mercy.  They are trying.  Even when they are grumpy and negative.  Even when they slap you on the butt in public. Even when they repeat themselves among friends and say things totally unrelated to the topic of conversation.  They are trying to keep it together.  They are trying to be normal.  Whah!

Dear caregivers, I know it's hard.  It is the hardest task you will ever have...to care for this loved one.  But, you can do it.  With God's grace and strength YOU CAN DO THIS.  Our loved ones need us.  This is our mission for now.  The rewards will be great so keep it up.  WE CAN DO THIS.

Tailgating

If you ever have to considering a facility for your loved one, remember to check out the activity director.  "Activity director?" you say..."what about the safety, staff, the cleanliness, the urine smell?"  Well, those are a given.  Of course, it's imperative that our loved ones have a safe and secure environment, with a well trained staff, that is spotless with no hint of urine smell.  That's what we want.  However....don't forget the activity director.  Our girls....I just don't know how they do it.  They truly love their job and it shows!

When I drove up into the parking lot yesterday, a pick up truck was backed up to the entrance of Jerry's facility.  Draped from it were football banners and the tailgate was loaded down with nachos and chicken wings.  We were having a tailgate party!

It was perfect football weather, clear, sunny and cold.  Every resident was dressed up in their favorite team attire.  For those who didn't have anything to wear, team shirts were provided.  Tables and chairs were circling a game of corn hole and there was lots of cheering going on.  

The great thing about where Jerry lives is the fact that the residents in the memory care unit are incorporated into the activities of the healthier assisted living folks.  Remember, since Jerry is so much younger than the rest of the "others" (the healthy elders), he is treated royally by all of them.  They are endeared to him and think of him as their own.  

When I approached the "stadium" I could see Jerry sitting at a table with his buddies.  He had no idea what was going on, but being surrounded by all that positive energy gave him a peaceful and happy countenance.  To my amazement, he saw me and began to move.  (That always amazes me that he knows me.)  I went over to lift him out of his chair and walk him into the sunshine closer to the corn hole game.  Some of those folks can really toss a bean bag!  

I've found it a bit easer when I visit Jerry during an upbeat activity.  When it's just me, we walk and I talk.  But I will admit that sometimes I'm at a loss for words..especially when there is no response.  So, it's nice to have energy and input from other people around you.  The activities provide stimulation and a chance to get out of the unit.  The spice to their day and helps avoid each day from becoming another Ground Hog Day. Last week was a Veterans day celebration.  Today..it was a tailgate party.  Tomorrow night it will be a country band.  Next week they'll have church on Monday and maybe a "mocktail" party or a field trip the next day.  

Activity directors!  Thank you for all you do!

Little Things and a Sense of Humor - an Alzheimer Journey

Today, when I drove up to see Jerry, the bus was out front.  The alzheimer residents had just returned from a “scenic tour”.  I think I mentioned in an earlier post about how cumbersome it was to carry these “tours” out.  It takes forever to load and unload.

When I approached the bus, one of the female residents was in her wheelchair on the ramp.  The activity director and a CNA were trying to figure out how to get her off the bus.  The ramp had decided not to work.   I looked up and asked, “What’s going on?”  The activity director responded with , “The ramp isn’t working.  Here.  Catch!”  The resident’s  eyes popped open!  We all laughed.  I watched as they painstakingly, picked each resident up and helped them walk...a slow shuffle...off the bus, then lift the wheelchairs down to the ground.  What patience!

It’s attitudes like this that are the little things.   The little things that are so important. In a year and a half, I’ve honestly not seen any instance where a staff member has lost their patience.  Not to say it hasn’t happened...afterall, it’s a thankless job and requires endless patience.  Last week, I witnessed a new patient acting out.  It was at the end of dinner time and the staff members were wheeling the residence out of the dining hall and into their activity room where they hang out an watch tv.  This gentleman began to get hostile.   Jerry and I managed to slink out of the way as we watched him stand up from his wheelchair, begin to yell, and push his wheelchair aside.  I witnessed as the staff calmly, but firmly  interacted with him, coaxed him back into his chair and swept him on down the hall.  They were well trained to diffuse the situation.

Anyway, today when I went to the back, I saw Jerry “sleeping” in the activity room.  That’s what they call it when he is dazed and out of it in front of the tv.  Barbara, one of the other residents, who always expects a hug, was sitting next to Jerry and began to wave.  I tiptoed over  to give her a hug and Jerry turned his head.  Up he “jumped” with his arms open.  I just love that!  Seconds later, he had no clue who I was, but he was ready to “get outta Dodge.”  I tapped in the code to the door and he opened it.  (I think he’s escaped from time to time because he knows just how to open that door.)  Our trip was to the Dairy Queen where I got him his favorite medium sized Butterfinger Blizzard.  That skinny thing ate the entire thing!  Trips to the “Queen” are good because it’s short, he doesn’t have to get out of the car, and well, .....it’s ice cream.

By the time we returned, the shift had changed.  He really didn’t want me to leave, but we used the old standby “divertion” tactic.  FOOD!  One of the CNA’s coaxed  him with some yogart.  The sweet kind.  He went right over and I slipped out without his even noticing.  Out of sight, out of mind.  He probably didn’t even realize I was gone.