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.  

Re-energized for Year Fourteen - An Alzheimer Journey by Susan Scoggins

As a caregiver, consistency in routine seems to keeps things working at their best.  VIsits twice a week, once during the week and one weekend day, keep the time with Jerry pretty positive.  We used to have lunch dates, but because of his declining state, I now go just after lunch, around 1:00.  If the weather is nice, I still put him in the car and we drive around town to see his favorite waterfront, the birds and the boats.  If the weather's too cold, we head to the facility dining room, which is white table cloth, and have a coke or coffee and a cookie.  (I'm always prepared with cookies or peanuts.) After months on end, my mental energy tank begins to run low, so I've found that I HAVE to get out of dodge for a couple of weeks a year to refuel. I can feel myself sinking, my paintings lose their energy and so do I.  Luckily for me, my son lives in California, so it's the perfect escape.  In our 41 years of marriage, Jerry and I rarely left each other (accept for his business travels.)  I wasn't one for girls weekends and he wasn't one for guys golf trips.  I suppose you could say that we were stuck to each other like amyloid plaque and brain cells (not funny).  The first time I ever left Jerry for over one night, was a year and a half ago.  He was at the facility and I went to a two week art school in the mountains.  We both survived.  Then, last spring, I went to Santa Barbara for a week of intense painting.  It was wonderful.

Capitola By the Sea

20x24 oil on canvas

January and February are overcast and dreary in the Carolinas.  That type of weather in Alzheimer world is a recipe for depression.  So over the last few weeks, I went back to California.  With my paints neatly packed, a rented car, and US 1, I drove through Carmel and Big Sur, then ended up in Pasadena with my "old same", my son, Mark.  He's good for reenergizing me.  We worked on a new website, created a new art video, played great music, laughed and celebrated being together. It was a beautifully crazy fun time.  And even though I felt the need to call Jerry almost every day, just like in the old days, each day, his nurses who are well versed in knowing how to make the families feel good, would say, "He's fine.  He danced with me today."  This trip was the perfect thing to refuel my emotional and mental energy tank so that I could go back to him.

Refreshed after two weeks, I walked into the facility curious if Jerry would know who I was.   The aide had him back in his room, bathing and dressing him, shaving and putting all his "smell good" on.  When he walked out, I melted as usual.  He put his arms out, but he did not know who I was.  (He gets lots of hugs from everyone who sees him).  I wrapped my arms around him, pulled away and told him it was me.  Hugged him again and laid my head on his chest.  As we walked down the hall, I could tell he had a happy countenance. His eyes had a brightness to them.  Even though he didn't know who I was, he knew he was with someone who made him happy.  We wandered down the hall to the living room but he wasn't content staying at the facility.  WIthout words, I could see he wanted to go.  This is our routine...go, get in the car, and drive around.  He knew.  He knew who I was.

If you have any opportunity to enable a caregiver to get away and have a re-energizing retreat.  Please do so.  It will help them go the distance.  Thank you all for encouraging me.

Memories of Ocrakoke - Getting There, An Alzheimer Journey

This is an excerpt from some journaling I did this past weekend.  A lot of reflection and healing took place. "The last time I was here, the only time, was about two years ago. It was somethng I had wanted to do with Jerry..discover the outer banks.

The wind is kicking up and the weather forecast says possible thunder storms, yet the brightness of the sun is peaking through the holes in the clouds, as if to say, “Come on.”  Two dogs are determined to take each other to task.  We board the ferry in about a half hour.  The cars are lining up one by one.

Everytime I close my eyes I see a vision of a tall, thin man with a white knit shirt and ragged khaki shorts.  He’s standing straight and watching me as I  walk away from him along a white- duned sandy beach. I recognize the beach.  It’s Ocrakoke. The man has dark hair.  The only thing dark on him.

I remember that day two years ago.  I remember it with yearning, but not.  A walk along the sand was all I could do while I expressed my frustration.  I didn’t understand why he wouldn’t move with me.  I thought it was stubbornness.  The memory seems cloudy now.  I can’t quite grasp it.

There’s something telling me to turn around.  I’m trying, little by little, to move forward on my own.  Somehow, I think by revisiting places we’ve been, I‘ll be able to process his not being with me.  I want to turn around and go find him, but I know he won’t be there.  The soul that was my mate has, or is, leaving his body.  His body is now bones, but his essence exists.

The cars are beginning to be loaded.  The gray green water looks fairly smooth but the clouds are gray too and darker gray and moving fast.  Their shadows leave racing spots of sun across the pavement.

There will be lots of people on Ocrakoke Island.  This ferry holds 60 cars, plus there are bikers, the peddling kind.  Now that I am on board, I’m getting anxious to see what lies ahead.  The desire to turn back is all but gone.  The sun is coming out. There’s the horn.  We’re moving out of port."

There are lots of couples on this boat.  The younger couples have water bottles and dogs.  They seem more playful.  The older couples are wrapped up with the wife leaning on the edge and the man’s arms around her...like Jerry use to do with me.  More seasoned with a need to touch.  I see a young girl standing near the side, up on a piece of anchor where the ropes tie up.  She’ s leaning against the edge.  She just let go of the side and held her arms out, like Rose on the Titanic.  Her arms didn’t stay out for long, but for a moment, I bet she thought she was Rose."

“There’s been a bird that has followed us the entire way.  It catches a gust of wind and floats on it just ahead of the boat.  He tosses up and down, back and forth but seems to be in complete control.  The sky s beginning to clear up.  The heavy clouds are behind us.  You can see the banks of rain in the far distance.  Up ahead, there is a glistening.  I think it’s an island. "

Never Enough-An Alzheimer Journey

Yesterday, my youngest daughter and I went to see Jerry.  When we opened the door to the memory unit, there he was.  It was as if he had been anxiously waiting for us.  All neatly dressed in his red Alabama t-shirt, he came with stretched out arms and wrapped them around Katie.  Yet, he was looking over her shoulder at me.  Puzzled, he knew this person he was holding was someone he loved.  “Hi Daddy” she said as she rubbed his arm;  eyes swelling up and turning red.  Mine do the same, now, when I envision them.  TIme with our loved one with Alzheimer is never enough.  The thirst is never quenched.

We turned and walked down the hall, arm in arm, Katie on one side and I was  on the other.  I wanted Katie to have as much time with him as possible, so I sat in the back seat of the car while we did our Dairy Queen run.  She drove to the dock, where we could eat our ice cream and watch the boats.  The country music was turned up and I could see Katie’s sweet hand, tenderly, stroking his hand to the fingertips.  He was sort of oblivious to it yet enjoying it.  The most important thing was eating his ice cream.  The most important thing to her was touching his skin.  I could see it in her eyes, weeping, but trying to be upbeat and strong. She was doing all humanly possible to communicate.  Jerry even eluded to her husband, “How’s....”   She told her how he was a dentist and would be so proud of him.  Her eyes began to well up again.  She told him of her baby boys.  She talked about how she use to swim and how he was at every meet cheering her on.

Katie is a daddy’s girl.  Their bond was strengthened through their competitive spirit.  He would constantly remind her of the “fire in her belly” mental state before a race.  She would give her all until he had to pull her out of the water.

In a way, Jerry’s competitive spirit has brought him this far.  It’s been thirteen years and he is still going.  The beginning diagnosis suggested 10 years.  He was, I’d say, able to “live” for the first 10 years and we altered our lifestyle to take in as much as we could. He had fire in his belly.  I believe he is still fighting this disease, but the fire is beginning to die down.  Alzheimer’s Disease  is definitely winning and will win physically.

Jerry’s spirit will continue, however.  Alzheimer’s disease will NOT destroy his spirit; not now, not  even after death.

For now, we’ll keep spending as much time with him as we possibly can.   Our love for him never ends.

New Start Up - Book II - an Alzheimer Journey

My daughter and I were talking the other day  about how we felt all by ourselves when Jerry was first diagnosed.  I suppose we were since he was only 50. The picture in this post was taken about 3 years into the journey, when he was 53.  We had barely heard of Alzheimer disease, much less known anyone with it.  Now, 13 years later, it seems there is hardly anyone who has not been affected by this disease or know of someone has it.  People come to me in the early stages wracked with concern, overwhelming sadness and a sense of helplessness.

So, I’ve decided to start this blog up again.  It has taken me a little over a year to feel healthy enough to continue to writing.  Now, since I’ve been walking the road for so long, I feel it’s my duty to share what I know.  This time it will begin with what I see on an every day basis with Jerry in his memory care facility.  I’ll call it his home.  That’s just what it is....his home, where he has lived for 15 months.

Let’s start with today, April 12, 2012.  I went to see Jerry on my way up to Raleigh.  I arrived around 11:00.  Whenever I walk down the hall, on the way to the memory unit, I am greeted with energetic  smiles from the staff and residents in the assisted living section.  The feeling is of a warm, comfy home.  There is a button I press that unlocks the door to the memory unit.  A soft “ding” goes off when I open it.  Once inside, Jerry happened to be coming around the corner.  He had just been bathed and was dressed in a soft yellow henley and a pair of jeans.  The minute he saw me, he stretched out his arms and came toward me.  We must have held tight for atleast 10 minutes without moving.  Behind him was a beautiful woman who’s arms were loaded with towels and his toiletries.  I introduced myself and asked her name.  “Haddie", she said.  I thanked her for doing such a good job getting him bathed...that he felt so good and looked so good.  She smiled and said, “Thank you. I came late today.”  Jerry, then,  reached over and gave her a tap on the shoulder as if to say, “She’s good.”

Haddie  looked at him and said, “Jerry.  Who’s this?  Is this your wife?”  His eyes looked past her in the opposite direction of where I was standing.  She guided them back over to me and said again, “Jerry.  This is your wife.  This is your wife.”  He was delighted to see me.  (again) Then the three of us continued down the hall.

It turns out that Haddie is the hospice CNA that comes twice a week. She told me she usually comes around 5am, bathes him, then lays him back down and that he is always willing.  No doubt her soft and compassionate demeanor enables him to be a willing participant.  I cherish these hospice people and anyone who works with dementia patients.  I hold them in such high regard.  This is a thankless job and not very glamorous.  Yet, there is no more important work than to help those who cannot help themselves.  The fact that I know Jerry is well cared for has saved my life and provided blessed assurance.