Sue Scoggins

Kids,
You how hard things are getting with your dad’s decline, and everything in the world falling apart. …air conditioners to golf carts to beach chairs to wine glasses. (funny)

I’ve got to tell you about the compassion we experienced today.

Over the weekend, the golf cart died. Dave, you left it parked in the driveway and today we waited for Paul, our golf cart guy to show up. We’ve used Paul for 10 years. At 9:00 my friend, called and said, “can I come and see you and Jerry. If its not a good time, just tell me…..but I’m on my way over.” I laughed and said, “I always love when you come. Hurry up.” She had just finished a palates class, so I offered her a glass of water. We sat at the kitchen table and she gently conversed with your dad. He tried so hard to talk to her. It was so sweet. A few minutes later, the dog started barking and I saw Paul walking up our driveway. She said, “I’m going to let you go. You’ve got to stick to your schedule.” So we all walked down together. Paul had her blocked in. So we all talked to him about the cart. The fuse had completely melted because of a bad charger. (He had replaced the switch in the old charger in July.) Anyway, he said, he’d take the cart to his shop, put in a new fuse, and try out a new charger to make sure that was the problem. A new charger would be $$$ and a new fuse would be $$$. Or, I could just trade it in. Melting, myself, I could envision the $$$ signs. We would just live without a cart.

So, Paul left and would be back to pick it up. Immediately my friend, took my hand and your dad’s. She said, “Lord, thank you for your provision. We love you and we thank you.” Then we hugged and she left.

After dad and I ran our errands, I could see he was completely exhausted. I took him upstairs to bed. Then I heard the dog again. There was Paul, driving up with “Bessie” on his truck. Then he came to the door. He said, “It’s all been taken care of”. “You are so loved.” That’s all he would say. We now have new batteries, a brand new shiny top of the line charger, new fuses, a completely tuned up golf cart. I can’t get over, obviously, my friend’s generosity. I’m overwhelmed and, of course, crying.

Mom

This was the note that I sent my kids today after I experienced the most undeserving and generous act of kindness. Our old golf cart carries Jerry and our grandchildren to watch the deer and has become a part of our family. I know it’s an indulgence, but it was just one more thing to go wrong. I am overwhelmed at the goodness of so many people and if I were not going through this experience with Jerry, I may not have seen this kind of outpouring of love. I really can’t write anymore, because I get too choked up. I wanted you all to know.

Earl, a category 3 storm, is approaching, but today is more perfect than ever. When we first moved here 3 years ago, I ROUTINELY walked the beach in the mornings before Jerry woke up. It was my time alone. My worship time. My get my head together time. My appreciation for the beauty of this earth time.

As “life on the island” has gotten busier and Jerry has declined, my free time has become precious. I’ve felt that I needed to be very selective and very efficient with each time slot. Especially since Jerry doesn’t sleep as long anymore. So, my morning time had begun to be sort of rushed. I’d bike with Montana so she’d get more exercise in a shorter time, I’d quickly read emails, write blog stuff, pull a weed or two, water plants, maybe even brush a paint stroke, all before 8:00. My own exercise has gone kaput!

So, today, I’m back to the original routine. No more cramming. As the sun rose, Montana and I rode the bike out to the beach. Unbelievable beauty. There were only a couple of walkers far away, so it was pretty much a beach all to ourselves. I use to find shells galore, but always seemed to be on the search for that perfect conch shell. Most of the shells I’d find were tiny and assorted, but great for filling my pockets. I’ve gleaned many spiritual lessons from them. One day I came upon pristine perfect clam shells that looked like they had been magically placed there by our Devine creator. There were dozens and dozens of them stretching for, what seemed about 500 feet. The next day, I saw nothing but broken and twisted discolored shells in the same spot. Of course I had to come home and write about the broken shells and God’s restoration of our souls. These walks were over a year ago.

This morning, as I reigned myself back in from my self imposed chaos, and while Montana was chasing the sand pipers, I seemed to be purged of all the worries of alzheimers. I was fully immersed in the systematic roll of the waves against the clear blue horizon. I saw about a mile long ribbon of white sand stretched to its perfect point. Then, as I began to approach that same spot from a few years ago, I saw silhouettes of large humps on the sand. The closer I got, the more curious I became. Then, I saw them! Conch shells were strone out along the shore line. Large ones, small ones, white ones, black ones. It was as if, a wave had scooped them up from the ocean floor and gently laid them out before me.

Look what I’ve missed in my chaos. Now, let me prepare for this upcoming storm as routinely as possible.

Today was the first day of my “no spontenaity” fast. It’s been good. Routine isn’t so bad. Course, this was the first day.

I gave Jerry is exact meds, fed him some breakfast, then took him upstairs to get dressed. Robert was coming so he was happy.
At 10:00, he and Robert planned their outing, and then they were on their way. They were to find a lithium batter for our sprinkler system, and find a movie that Jerry would like. Robert is a gifted caregiver and is so good at getting Jerry out of his teary state.

While they were out, I got some research done. Called our insurance people, collected power of attorney stuff to send to them, contacted the Alzheimer association about day care possibilities in a nearby town in New Bern, contacted a shop that carries my art about a fundraiser for MS, and got about an hour of painting in for a doggie named Wilson.

When Robert and Jerry came back, Jerry immediately showed me his new movie…The Complete History or WWII. Collectors Edition. In his way…he was thrilled. Robert fixed my sprinkler, then headed off. I stuck with the schedule and took Jerry upstairs for a nap. He thanked me for tucking him in. This guy slept until 4:00, at which time I put my brushes away, had Jerry carry my finished paintings outside so I could varnish them, then closed the door to the artful things for the day. He stuck with me like glue. That was ok though because I had my time earlier.

As soon as Jerry came down from his nap, he found his movie. It’s sitting right here beside me for us to play later. We’re watching the news now…..next to each other. All is good. We’re going out for mexican with our funny girlfriend, KK, who makes Jerry laugh beyond imagination. She’ll be here in a few minutes.

So, the schedule and routine….well, I survived. Jerry survived. Things were accomplished. Now, on to day two.

PS. Jerry was pretty unresponsive at dinner, but KK did her best to make him laugh. When we got home, all power on the island was out. It was pitch black accept for the galaxy above us. Deck time was amazing.

Haven’t written in several days. Thanks for your patience. My precious daughter and baby Charlie came to visit for the weekend.

Jerry’s inconsistency and irrational behaviors have really played a number on me. He is only happy if he and I have our Velcro strip stuck together. One night, I’ll say “That’s it, I can’t do this anymore.” Then in the morning, I say, “I can’t send him away.” I’ve had so many well meaning and wonderful people wanting to help me and wanting to do what’s best for Jerry. Some want to help so he can stay home. Others say he’s lost touch with reality and I need to put him in a facility. All I can say, is that I don’t want to have any regrets. I don’t want to “put” him somewhere, just so I can go on with my life. He IS my life! “til death do us part.” Remember?

Ok. Now, that I’ve decided that, “I’ve got to figure out how to do this task that’s been set before me.”

In a panic, I emailed his doctor last night and we set up a phone chat this morning. We went over his meds and routine with a fine toothed comb. She gently reminded me of how even the slightest variation in his routine can wreak havoc in his mind. If I miss or double his Aricept by accident, it could cause intestinal problems. Intestinal problems or any health variation at all can create confusion. I must be religious about his medicines. We are also, giving his anti-anxiety drug, half in the morning and half at night. Hopefully this way he can sleep. She said sleep depravation just causes continual confusion and exhaustion. (for both of us.)

She also suggested a poster, with dates, schedules, pictures or reminders to help him remember what’s next. I wanted to do this over a year ago…but Ms. Procrastinator wanted to paint instead. Remember having a preschooler? Breakfast. Preschool. Naptime. (“go back to bed”.) Play time. Dinner time. TV time. Bedtime. (“go back to bed.”)

We will be very strict for two weeks without any altering to see if we can get him stable. Sort of like a “no spontaneity” fast! Yikes!
THIS WILL BE HARD FOR ME….THE SPONTANEITY QUEEN! You know, artists are not known for rigidity and routine. I can already tell this will be hard, because I just talked to a friend who wanted to go somewhere tomorrow. Said, we can bring Jerry. There goes that routine! And, there’s a CAT 4 hurricane, Earl, sitting off our coast. Hmmm, let’s just keep sticking to that routine, ok?

No really, I’m going to do my best to see if we can get him stabilized. Off to get my poster board now.

Last night, Jerry woke up and sat up on the side of the bed. My sleep deprived eyes popped open. I watched him as he walked to the bathroom, turned around and headed to the bedroom door. I rose up and said, “Jerry, honey. Come back to bed.” He wandered around the room then sat on the side of the bed, and started saying completely irrational things, as if it were a bad dream. I asked if he had to go to the bathroom, but he continued to just slip back into the bed.

I think he was actually hallucinating. The strained and grimaced look on his face was of pain. He was very intense, and said, “Lord, help me.” I just kept quiet to see what was happening. Then, he abruptly threw back the covers and pounded his fists on the sheets, “No one told me.” I placed my arm around him and tried to calm him down. He continued on, babbling irrational thoughts as if he were dreaming. But, I couldn’t wake him. He was intrenched in whatever confusion he was in. He said, “I’m, ready to go.” For at least 15 minutes this activity continued and I felt helpless that I couldn’t take his fear and pain away.

Eventually, I got him to roll over and place his arms around me, then he seemed to calm down.

This morning, I checked on him the minute I woke up. He was still grimaced and his face looked so confused and pained. His body looked so frail. I tried to comfort him and get him to go back to sleep, which he finally did. What a night!

This was the second of such occasions. Occasions of hallucination. Pretty scary. It hasn’t happened in the daytime yet. Was it a bad dream? Or was it a hallucination? I don’t know. But it’s a new challenge to overcome.

I remember when my son was little and loved to ride his skateboard. We lived in California at the time, and he was on a swim team. Every afternoon, I’d ride my bike towing him on his skate board, all the way to swim practice. Ahhhhh! Such fond memories!

This morning, Montana and I took a bike ride. Being the conscientious dog that she is, she normally sticks by the side of the bike and keeps pace. If I see a deer or wild animal, as we approach, I calmly say….”now, stay with me.” She does. Today, however we came up on a teen age deer grazing on the side of the road. She was keeping a keen eye on us. Montana caught sight of her, but not wanting to send me flying, she slowly began to pick up speed; sort of like a plane ramping up on a runway. I barely put pressure on my breaks, pulled back on the reins, but before I knew it she was whizzing me down the street like a I was on that skateboard.

It was a great way to start the day.

This alzheimer life is so erratic. Why, yesterday I had a temper tantrum with myself and God. I was so bitter and infuriated with this situation! I kept yelling that my life has been on hold for twelve years! (Don’t worry. Jerry was in the shower and couldn’t hear me.) I definitely needed a break from alzheimer world. Today, I got my break. Some co-workers from my old job in Raleigh, needed a last minute get away and they chose HERE….WITH ME! What a treat!!!! The whole day worked out perfectly. I had John, Jerry’s companion come at 10:00 and bring him back at 3:00. Sixty dollars well spent. While they were out, we girls packed up our stuff and went to the beach. Man! Four gabbing women for 5 hours. No kids, no mother-in-laws, no children, no husbands, no painting! Imagine it! NO MEN! ( sorry you male readers.) One of the gals is a fabulous artist. She gave me all sorts of tips and the other girl wants to be my agent. How cool is that? We laughed and said we wanted to form an artist colony. Trouble is…one says she doesn’t have any talent. We’ve decided she can be the administrator and organizer so she can be a part of the colony. Artists are not organized! The seasoned professional, whom I greatly admire, said I’m ready for the next step. Oh gee! The other one wants to be my agent so that she can get experience in her new career in life. I’ll take that!

When we came home, everyone showered up just in time for Jerry and John to walk in the door. Timing couldn’t have been better.
Man!! All this “happiness” is getting to me. Don’t know if I can handle it. I’m exhausted.

Couldn’t sleep last night. Kept counting the wonderful saints who had come to a Jerry information meeting.

Last night we had invited all who were interested in volunteering time with Jerry to come to a brief question and answer meeting.
As I walked around the corner of the hallway and stuck my head in the door, the room was lined with people. I’ll call them saints. There were about 18. Plus, two were at home keeping Jerry company while the meeting went on. Just think about that. 20 people had Jerry on their mind last night. How blessed we are!

I brought my dear friends, Bruce and Nancy, who have spent countless hours with Jerry. I knew that Bruce would have a wealth of insight. I wish my kids could have heard the kind words said about their dad. “so kind.” “wonderful person”. “gentle heart”. Sniff! They are so right. He is a wonderful man.

The saints will be coordinating 2 days a week, where Jerry gets a visitor. They will rotate so that no one person is overcommitted. After all, they have lives of their own, ya know. I’m so thankful for even 30 minutes. It makes Jerry smile and that “smile” lingers for days. There are two team captains who have volunteered to do the scheduling. Wow! I have two male administrative assistants. Women’s lib….ride on! (Totally kidding.) Actually, they are taking care of the widows and orphans which are commanded in the Bible. However one wants to view it…..I AM SO APPRECIATIVE!

Today is pouring down rain. I love the rain. It’ll keep things a little cooler, since our air conditioner is broken. Jerry’s resting on the sofa. Rainy days do that. He’s watching a golf tournament. I’m sitting right next to him. However, I’m about to break the news to him that I’m going to “work” downstairs. The rain has had a calming effect on him, so I hope that keeps him watching golf for a while.
In the meantime, I’m ready to PAINT.

I found my old zumba CD, which I haven’t done in several months. I think I’m going to play it, bring out some dancing photos from my daughter’s wedding and paint dancers. I may even dance a little myself.

Spent the day painting, today. I’m into flowers these days. Jerry went with Bruce, his best bud.

I read so much info on Alzheimers, tips for caregiving, yada yada yada….I forget more than I take in. Today, I tried the coin trick.

So, I emptied the glass of coins on the kitchen table and not only did coins fall out, but so did a bunch of golf tees. As everything rolled out on the table, Jerry automatically started stacking the coins. Pretty cool. He didn’t even need tutoring. It kept him busy for about 45 minutes. I’ll keep the coins on the table as permanent fixtures now. In addition, I noticed colored golf tees neatly standing in a row. How ’bout that? Golf tees. Next, I’m bringing in the 5 pound bucket of golf balls from down in the storeroom. I think they need sorting.

It’s been a good day. Jerry woke up with a glazed look and kept it for over an hour. However, once we got the breakfast and shower in, he began to clear up. After his shower, I told him that it was just the two of us again. “Ohhhhh ” You know…I’m just not enough….he wants a visitor every day. Humph!

Anyway, I told him I needed to “make some money” and that I needed to paint for just a little while, but that I had a project for him. I collected the coins that he had in a jar on his dresser and put them on the kitchen table. “It’s like a puzzle.” I said. “What I’d like for you to do is stack them.” He seemed to like the idea. So, I put the timer on one hour and went down stairs. (I turned on the history channel, too.) He actually let me paint for almost an hour! Yippi!

After that, we went to have lunch, then grocery shopping. He was actually pretty alert at lunch. In fact, he even said a complete sentence and ate his entire grouper sandwich. WIth both hands! Once lunch was over, we headed to the grocery store. Here’s what was funny. The bagger bagged his chicken pot pies and handed them to Jerry to put in the cart. Jerry held on to them. Then as the bagger began to fill the cart with bags of groceries, Jerry would take them out and put them on the counter. I had to chuckle. Smiling, the bagger said, “Somedays, I do that too when I’m not paying attention.” Then, Jerry drove the cart right through the checkout line.

A good morning is more than I could ask for. Warm fuzzies abound. Time for his nap.
Talk to you tomorrow.

Last night, I braved it and had a little dinner party. For 8. At first, I was hestitant because I am basically lazy and also hate rejection. I mean, what if I finally get up the energy and invite people and then they don’t want to come? Whahhhhh! Knowing it’s good for us to be around people, I took the plunge.

Somehow, it began by my timidly asking a friend what they were doing this weekend. Then, it went to, “well, why don’t you guys come over.” Then, “we can maybe go out.” Then, “well, you guys can come over here.” Then, “we can invite so and so…and so and so….”
Before I knew I was having company!

Hmmm. What should “we” fix? Jerry and I went to the grocery store. He saw corn on the cob…and pointed to it. Ok, “we’ll have corn on the cob.” Shrimp! Steaks! All we cared about was getting together. In fact, one person changed their plans in order to come. Yippi!

As my excitement started ramping up….I fixed up the house, got out some cool Italian pottery, and had Jerry take a nap. I made sure the grill (barbee) was working fine, put some things in the oven, and poured some nuts in a bowl. Then, I poured a little wine and went up stairs to get ready.

Jerry had to look “hot” so I dressed my handsome (but emaciated) dude in some navy blue shorts and a cool long sleeve button down shirt….no socks…and some deck shoes. Feeling feisty, I decided to put on the sexiest black top that I had. Hey! I’m 58. It’s either now or never.

One by one the guests arrived…and so did the rain! Of the men, one was a boat builder, one was a pool builder, one was a retired United Airline pilot, and one then, there’s Jerry, a “retired” corporate guy. Even though Jerry doesn’t speak, the guys did their best to keep him included. Of the girls, three are artists, two play tennis. The United Airline pilot cared for his wife’s mother for three years. She passed away with Alzheimer disease. I’ll call him the gentle soul. Besides, my being retired from American AIrlines, practically makes us kin after our 911 experience. When the rains came, I played the poor wife routine and offered to hold the umbrella for whichever brave soul volunteered to cook the steaks. So I dangled a raw steak in front of them and looked to see who would come running. Joe…..ahhh, my good ole, Joe, who cooked them to perfection. (I had to say that just in case he reads this blog,)

The girls made sure I was seated away from Jerry and put him right in the middle of the guys. Nice. At one time, I even saw out of the corner of my eye, the “gentle soul” cutting Jerry’s steak. How cool was that! No one made any big deal of it. Good job, everyone. The chatter never stopped until about 11pm, when Jerry said, “It’s time to go.” Funny. Everyone jumped up. I’m not sure if he thought they should leave or if he though he should leave.

Anyway, the night as good and well worth the effort. Neither rain, nor fear, nor Alzheimers could keep us from having a good time.