Do Ya’ll Think I Need a Shrink?

Ok.  Why is it that I exercise at the gym and come home to eat 3 brownies (small ones)?  Why do I paint my fingers to the bone to pay for someone to come stay with Jerry...while I PAINT?  Why do I pay a cabana boy to be with Jerry while I get my hair cut when I could just bring him along?  Why is it that I move to the beach and hardly ever go to the beach?  Why do I move away from my adorable grandsons to have a life of my own....when I don’t have a life of my own?  Sometimes things seem so futile. Let me be honest about this nanny thing.  Yesterday, Jerry was with John all day. (6 hours)  Remember, it was a wonderful day for me to try on 3 cart loads of clothes from TJMAXX.  Really! Why do I need clothes, when I never go anywhere?  Seriously!  Anyway, when I got home, Jerry was a real grump.  His hip was bothering him and he wanted to let me know about it.  He was so frustrated that he walked over to the vacuum cleaner, picked it up, and threw it down to the ground.  HARD!  Now, let me tell you...I don’t do violence very well.  I just stood there, holding a plate of food that I had fixed for him....I held it up and said, “Do you want me to throw this at you?”  DON’T WORRY!  I DIDN’T.  Believe me, if he were not sick, and with my pent up emotions, I would have hurled that plate right towards his handsome little head!  Course, then I would have crawled on my knees begging for forgiveness.  That was IF HE WERE NOT SICK!

Anyway, today, John had him for what was suppose to be 4 hours.  At the 3 hour mark, he brought Jerry to me and said, “I’m just going to have to owe you an hour.”  He gave me the eye, meaning, Jerry reeeally wanted  home.  We were at my friend’s house and I was getting my hair cut.  Once Jerry saw me, he was relieved and happy.  I mean....what am I suppose to do?  My sweet friend just took Jerry and sat him down and began giving him is own haircut.  He loved it and felt so important.  (Besides, she’s really cute and loves him to death.)

I think I’m going to have to slowly ease into this nanny thing.  Jerry’s not going to take it lightly if I get someone every day of the week.  He really likes the people who come to see him now...but I think, until now, he’s thought they were coming to be his friend.  Now, I think he’s beginning to catch on that they are coming to relieve me.  It’s a totally different viewpoint.  Once, I had him with me today, we went to the grocery store and had a snack on our deck.  He was pretty happy with that.  Somehow, I need to finesse my way in to this.  We are still at team.  At least, that’s the way I need to make him feel. We are still an “item” and we are still best buds.  In no way can he feel that he’s being shoved aside.   This is going to be a process.

We’re having a “date” tonight to the movies.

Cabana Boys Make the Best Nannies

Several folks have been asking about the nanny progress. How I got one? Did I go through an agency? How hard was it to find a match? All of these are great questions.

It took several years. In fact, it took several years, before that, for me to even warm up the idea that I needed someone to help me. You know...I AM WOMAN. I CAN DO ANYTHING!...good ole Helen Ready. Once I realized I was losing my own mind, I slowly got help. In fact, it took a while for me to even find my mind....it had been left on the back seat of my car with all the screwdrivers, empty water bottles, calendars, and junk. (that was a joke.)

Every time I would run into a road block, I would give up and become WOMAN again. It tooks weeks of research to find out that there was no insurance and government help on payment of companion services accept Veterans Administration. The VA allotted somewhere around 30 days per year. I was so excited. Problem was that the help that they sent out was “less than motivated”. I think they were looking for someone to watch TV with. Once I realized I was going to have to find the right match myself and pay for it myself, I slowly spread the word. I interviewed several people, but I just didn’t have a good feeling about it. FINALLY, I found Robert! What a perfect match. Sharp! Very much a caregiving spirit. And Jerry bonded immediately.  They are best friends.  I’ve had Robert one day a week for about 3 years now. Robert is the one who takes Jerry to all his favorite places.  Then, came John. John was first found through a private pay senior care companion company. He was another perfect match and I claim him now to be my big brother and cabana boy.

For now, I’ve decided to stick with the cabana boy (male nanny).  John is now coming two days a week.  I’ve budgeted for 10 hours a week.  Yesterday, he stayed for 6 hours, today, he’ll stay for 4.  Yesterday, I was so excited to get out of the house for that long.  Can’t believe I did it.  Usually, when I have John come in, I have  appointments or “stuff” I need to do.  This time I had nothing.  I was going to stay and paint but I was burned out.  So, I just got in the car and drove...with no agenda.  IT WAS SO FABULOUS!

Before I knew it I was in TJMAXX.  Oh my!  What a dangerous place.  Last time I was in TJMAXX I had Jerry by my side...this time...no one.  I filled that cart up THREE times with things to try on.  It was so high I needed flashing red lights.  Course, then I got carried away and found that I had been there for 3 hours!  Can you believe that!

When I got home, CB (cabana boy) was sitting on the front porch swing with Jerry and Montana dog.  Jerry was being a grumpa lump.  He does that sometimes when I’m gone too long.  Nonetheless, John had vacuumed the upstairs, cleaned all my vents in the ceiling....WITH A TOOTHBRUSH and still had a smile on his face.

For me, it paid NOT to settle, but to find the right match.  Jerry’s comfortable and I’m SPOILED.  What more could I ask for!  A martini?

Emotional Swirls

I’ve had a lot of emotional swirls going in my head lately. A friend and I sobbed over our love for our sons. The bitter sweet moments with my Jerr-bear. Funny, yet endearing. The frustrations of his not being able to put his sweatshirt on correctly or not being able to get his arm bent enough to get it into the sleeve. The touching hugs from our church friends. The tickled moments we have when Jerry yells a “roll tide!” when they humor him with Alabama football.

All these times have taken me deep in thought. Why all his suffering in the world? Not that our suffering is anything compared to others. In the grand scheme of things, I don’t really consider our life, “suffering”.

Anyway, this morning I was reading a passage of scripture in 1 Peter 2. It’s regarding God’s favor on those who suffered unjustly. It speaks of the example of Jesus’s suffering.

21. For you have been called for this purpose, since Christ also suffered for you, leaving you an example for you to follow in His steps, 22. Who committed no sin, nor was any deceit found in His mouth; 23. and while being reviled, He did not revile in return; while suffering, He uttered no threats, but kept entrusting Himself to Him who judges righteously; 24. and He Himself bore our sins in His body on the cross, that we might die to sin and live to righteousness; for by his wounds you were healed.

How powerful are those words and what an example for me when I get in those emotional swirls! Thank you.

What’s Happened?

I just don’t get it. Jerry has had such a good week. I don’t know what has happened, but he’s actually been “with me”. Now, don’t get too excited. He’s not “normal”, he’s just “with me”. That means, he’s not on another planet somewhere. He has been calm. He has dressed himself. Well, almost. Well, actually, I was in the room handing him his clothes. But, hey! He didn’t put his underwear on backwards.

He ate his food, without me coaxing him. He took the trash downstairs. Well, it didn’t make it to the trash can, but it DID make it to the bottom floor. Hey! He’s had a positive attitude. I can hardly handle it. Could it be the routine?

But wait! MAYBE IT’S ME!

I’ve had a better attitude. We had a tropical storm and it kept us content being indoors. I had John come today. (My mail nanny.) I call him my cabin boy. It’s just a joke...really. He and Jerry hung together and John changed all my burned out lightbulbs in the carport and throughout the house. Yippi! One less thing for me to do...and now, I can actually see when I go outside at night. The tropical storm caused leaks in the living room and two bedrooms. What a mess. But, hey! Insurance will pay for the repairs. I’m excited.

I’m interviewing my female nanny tomorrow. I think she’s going to work out fine. That will be John and Sarah with one day each. Never had help like this before in my life. I could get use to this.

Drama! Drama! Drama!

I’ve not written in a few days, because I was in Raleigh taking my son to the airport. We spent a couple of days with our daughters before he left. As we hugged, with teary eyes, I gently pushed him away and said, “Don’t look back. Don't look back”. Then, I scooted Jerry into his seat in the car and drove off. The mommie in me wanted to run back and hang on. Jerry wept for most of the morning. Man! When you love so much, it hurts so bad to say goodbye. Anyway, I can’t “go there” again. Today is another day and we must move on. Besides, the drama of family is so intense. I don’t know how my son-in-laws handle it. Do you think all families are this intense? Feelings regarding a kid on the other side of the world and not being a part of the family and care. You know, realistically, we all can’t live in a live covey together. We always encouraged our kids to “fly”, “the world is their oyster” so to speak and make their way in the world. Course, that was BEFORE their dad came down with Alzheimers at an early age. AND....when they move so far away, the family becomes distant and resentful... I DON”T LIKE IT!

Moving on, we are now back in the beautiful Emerald Isle. I’m going to focus on two things. One, finding a nanny. Two, getting started on the “leap frog” paintings for the pediatric dentist office. The paintings will be a blast and I’m already envisioning tons of fun characters in the Arctic. Can’t you just see two penguins helping a walrus leap over another penguin? Can’t you just see the look on those faces. I’m still working on the singing walrus.

Bruce will be coming today. Painting will be later. For now, it’s oatmeal time. Life will be good today.

Ok...

We are on our deck, savoring the old time country music and also savoring a little wine. At first I was a little “ashamed” that I was partaking of too much “libation”. But, to tell you the truth, the treasures of these relationships are beyond measure. We are tasting the fabulous combination of spinach, avocado and garlic. We are grilling steaks for frajitas and the dog is loving the attentiion she is getting from the long strokes on her head. The snaps from Jerry’s fingers are reminders of the music from his soul. I told Mark, “this is pathetic”. he said. " Are you kidding me?” “This is what it’s all about.” Memories. Feelings. Togetherness.

He’s so right. Who cares what society says! It’s all about the fabric of the soul. Whatever! It is made up of and whatever we can savor and extend. Jerry doesn’t care about what society thinks. He’s so happy when his music is playing. We are so happy seeing him happy. It’s the bliss of the here and now. I’m watching Mark and Jerry dance in the kitchen. It’s the hear and now. It’s the Texas swing. It takes a worried man to sing a worried song. We’re all singing now. Singing together. So many people don’t have that.

It’s been a good night.

We Cried Til We Laughed

Yesterday, Mark and I did “the do”. “The do” is a term I use to cover all the undesirable things that have to be done. “The do” yesterday was touring facilities in the area. I kept saying, “We need to do this so we’ll be prepared. We need to do our do diligence and research. BUT, WE”LL NEVER PUT HIM ANYWHERE!”. The first was an assisted living facility with an alzheimer/dementia unit. As we drove up, Mark, said, “Why are we here? Why would you go so far away in the middle of nowhere? I’d never approve of this place.” But, I gently but firmly reminded him that this was just for informational purposes. The visit actually was fairly pleasant. The building was light and clean. Mark’s presence with me gave me strength and he asked questions I never would have thought of asking. When we approached the dementia unit, it was coded for entry. Once inside, all the residents were eating together. Mostly women in their 80’s or 90’s. The TV area had a little TV. It was pretty sparse, but did have a nice courtyard. ALL FENCED IN with a wooden fence. Bottom figure was around $5,000 per month.

After that we took a quick debriefing walk around the local department store and bought Jerry a shirt.

Next was an hour and a half ride out to the “finest” facility. It had fourth levels of care. Independent living, assisted living, skilled nursing, and a FENCED IN locked dementia unit. When first walking into the place it was like a resort. Beautiful living rooms, formal dining room library, screened in porches. Lots of space for families to visit. The grounds were gorgeous set among gnarled oak trees on the water. Trouble is.....the place as so dark, you couldn’t see outside. Where were the rocking chairs on the porch? The best part of this was when we came upon two old sailors drinking a beer and listening to 40’s music. They seemed as happy as can be. But when we went into the dementia unit, there again it was mostly women with one man. When the man saw me, he held my hand and said, “How do you get out of here? I need to go home to my wife.” That was not good for me to hear. This place is where you would go if you sold everything you owned and spent every last dime until you qualified for medicaid. (government assistance.)

The third facility was actually a nursing home. It was pitiful. Bleak and dreary and bare to the bone. Each bed was filled with a skeletal resemblance of a human being. This was a facility which would take medicaid people. People who couldn’t afford the “finest” next door. This is for people who had no money and depended on government assistance from the get go. Here, the dementia patients were intermingled with the other residence. The bright spot here was a a precious old woman. She saw Mark, and took his hand. Her smiling eyes twinkled as she asked him, “Hello. Are you walking for your health?” He said in a sweet childlike voice, “I am.”

On our drive home, we spoke very little. Both of us decided we needed to take the express elevator to escape over a gin and tonic. We ran the gamut of our emotions in our head. Our certain conclusion was that JERRY WAS NOT GOING ANYWHERE.

Deck time was an emotional one. We cried 'til we laughed and laughed 'til we cried. Mark immediately put on Jerry’s toe tapping music and I clung to his side in the chair. We took pictures. We danced. We cooked and we ate. We took turns going inside to cry. We’d come back out when we could laugh. It was probably the saddest time I’ve had in years.

That’s It! I Need a Nanny!

Mark’s been here for 5 days now and I think I’ve discovered the secret. It takes TWO. Two to drag Jerry along in a parking lot. Two to get him to the car. One person gets him outside and keeps him occupied while the other gathers whatever things are needed before getting in the car. You see, when Jerry and I go somewhere, normally, I get him down to the car and encourage him to go get in while I go back get the things I forgot (like my cell phone, my bank deposit slips, whatever). While I run back upstairs, he turns around and heads back up with me. Now, I know you are saying, go ahead and PUT him in the car and shut the door. Ah-ha.....I’ve already tried that. Whatever I do, if I go back upstairs, he is out of the car and headed back up too. AND if I let him get too far, he opens the gate and lets the dog out...then I have he AND the dog to round up again. Now, you’re saying...well, don’t forget anything. Yeah, right. Don’t tell me you’ve not had to run back in for something trivial from time to time.

SO, it was great yesterday, when, while I completed wedding response cards to put in the mailbox, I told Mark to go ahead and get Jerry to the car. By the time I got downstairs, they were throwing a ball in the driveway, and then Mark put the dog away and we ALL got in the car at one time. IMAGINE THAT!

Another TWO thing, is that one can clean up the house or walk the dog, while the other is making sure Jerry’s questions are answered or that he goes to the bathroom. One can cook, while the other one sets up the tray. One can clean up while the other one gets the correct channel on the TV. One can take him outside while the other makes a phone call (these would be phone calls that he doesn’t need to hear...like insurance, financial, medical, etc.) One can help him with his shoes and bring him off the sand, while one talks to a couple on the beach about assisted living facilities. The list goes on and on.

The job seems almost doable...manageable.

Course, Mark will eventually go home and I’ll be left without the other half of the team. I figured, he really doesn’t get up until 10:00. I get up at 6:00. I go to bed with Jerry at 10:00, Mark goes to bed at ....who knows. But, whatever, I figure the TWO thing needs to happen between 10:00 and 6:00. Hmmmm. A NANNY! Wonder how much nanny’s cost?

Course, a nanny needs to be a strong pioneer like moi. One who can also dig a trench in my front flower bed so that the water doesn’t settle on the carport and make things too slippery. One who can pull a weed or two. One who can fix the toilet paper holder that has fallen off the wall. Do you think nannies can do those things?

That would cost me a small fortune, but it sure wouldn’t be as expensive as assisted living.

Excedrine and Country Music

Jerry’s movements have become S-L-O-W at best. What I mean by that is that IF he gets around at all, it is slow..slow..slow. Sort of like our golf cart...just kidding...sort of like a battery running down. Believe me, as a caregiver, it takes a lot of energy to move so slow all day long. Last night, Mark wanted to do a little entertaining. He’s met some of our friends in the past and wanted to catch up with them. So we invited one couple over to cook and eat shrimp on the deck. This couple totally understands the Jerry dilemma and they don’t even flinch when Jerry slurps his ice cream. When the ice cream spills all over his mat, it just gets rolled up and we continue on.

As Mark and I mentally prepared for the evening, we thought that maybe Jerry needed some sort of caffein boost to make it through the evening. Hey. What about Excedrine? So, after nap time, I fixed Jerry a little snack and gave him some Excedrine. It worked. (Think relative.) His eyes brightened up a little! So much that he even tried to engage. A little. In fact, he even thought my friend was me, and tried to talk to her. Then, said, “Oh. Excuse me.”

After we ate, Mark turned on some fabulous old western Bob WIlls music. Jerry’s dad was a country western singer 80 years ago and Jerry grew up with guitar pickin’ in his living room for years. This was old Texas Swing music and Jerry was in his element. Once his foot started tapping, then his hands started clapping and his face began to smile. He was coming alive and then the party began. So we all danced around to the other side of the deck and rocked to old Texas swing music under the stars until midnight. The leg never did stop tapping until the barn door closed and the lights were out.

Long Time Coming

It’s been since Tuesday night that our son, from California, arrived. They haven’t seen each other in over a year. I was wondering if Jerry would remember him when we greeted him at the airport. I dressed handsome Jerry in a nice crisp light blue collared shirt with linen shorts and slip on deck shoes. On his head was his famous “Scoggins Steak and Seafood” hat. Their reunion hug was tight and teary...just as it should be.

Jerry’s decline is pretty evident now. You know how you are when you first wake up. Groggy, unresponsive...sort of like having been hit by a truck? Well, that’s how Jerry has become. Accept, Jerry never fully wakes up. When people are apart for so long, it takes a while to get past the superficial but with each passing day, I’m seeing Mark become more and more sensitive and thoughtful to his dad. It’s also evident that Jerry is enjoying having him here by the way they sit so close to each other. I’ve seen a peaceful quiet come over him.

Yesterday, we had an exciting adventure in our closet. Mark could not express enough how important it is to keep Jerry sharp looking. He’s right. But, as a caregiver, I’ve really become only sporadically energetic over these things. Mark wanted to take Jerry shopping for new clothes. So, I suggested he take an inventory of his closet before he spent my money. (I gave him a $100 budget. BIG WHOOP!) Before long, everything was out of his closet and onto the bed, where we were tossing clothes into piles. We tossed the “old dad” jeans, the thinned tee shirts, the faded golf shirts, unmatched socks, the list goes on. Luckily, he approved of his collared shirts, kaki pants and shorts. We even tossed his golf hats, accept the most prized and put those in the dishwasher for cleaning. Pretty scary what came out of that closet! What a purging! We even found his Alabama football helmet which Mark placed by theTV for football season. It was a hysterical time of laughing!! The ending evaluation came to a nice pair of sunglasses, a pair of shoes, and new jeans (which will be tabled for another day).

Mark keeps stressing the sunglasses. Remember, he’s from California. For one reason, it covers Jerry’s lost and droopy eyes. It’s hard to look into Jerry’s eyes, but also, it helps with moral when he looks good. The other reason is it makes him look like an old blind rockstar. He said, “Think of the stories you could tell, Mom.”

So..they will be off on the hunt for those two things today. Converse slip-on shoes, and those oh so important sunglasses.

It’s Raining Moths

Word to the wise. Always check the front door before going to bed at night, lest your ceiling be covered in moths. This first week of routine has been good. Jerry’s meds are going good and his routine is going good. Every afternoon, when he goes out in the morning and comes home by two, then I take him upstairs for nap time. We’re in bed by ten.

Last night, he seemed pretty alert, so I mentioned that Montana dog needed her nightly walk. Jerry got up and went downstairs. (without the dog, of course) I told Montana to “go with daddy”. She did. They actually went for a walk. Leash and all! Ahhhhh, such little delights. When they came back, we went to bed. I was pooped from about 7 hours of “on my feet” painting, so I didn’t go down and check the front door.

This morning...well....should I say, “It’s raining moths.” Montana and I walked downstairs to a well lit foyer with the front door wide open and about 30 moths camping out on our ceiling.

Accepting A Cup of Water

My sisters and I were raised to be self sufficient. I mean, we were made of pioneer stock....could have changed the wheels on our covered wagon if we had to. No sissy women in this family! When first given the dementia diagnosis, a gut wrenching pain came over me. It was fear that I wouldn’t be able to do this caregiver thing. I knew what that meant...long drawn out years in the desert of illness. The pain only lasted for a short time, however. We had a desert to cross. Let’s get started!

After about the 8th year, it was getting harder and harder to get reenergized. I HATE BEING NEEDY! Perhaps asking for help would make me feel pitied or pathetic or weak or poor or lesser than or incapable or ..who knows what our silly minds think. I was not Proud Mary...but proud SUE. I was very reluctant to admit I needed help. Thank you very much, but I can do just fine keeping up with work, medical bills, home finances, the yard, wedding planning, paying for college, new grandchildren, support groups, EMOTIONS, hysterectomies, barking dogs, leaky roofs, overflowing toilets, cooking, cleaning, administering medications, oil changes, car inspections, ...and, oh yeah, a crying husband! I’m fine. I’m fine.

The simpler lifestyle in a small beach community made it easier, somewhat, in that Jerry could walk the dog and ride a bike without getting lost or hit by a car. But would he find a friend? Who wants to be friends with someone with dementia? I became his only friend. As he declined, I became drained of my emotional and mental energy, then my physical energy. There was no ZIP in this ZIPPER. There was no more oil in my lamp..no water in my well. I made the frantic search to find respite care through medically insured means. If I could just get one day...a couple of hours... To my frustration, insurance didn’t pay for much, if anything, and what it did pay for was not very good quality. I couldn’t do it. So, I decided I’d just continue being “invincible”. NOT! It didn’t take long for me to become fatigued, day after day, and thus, CRAZY....experiencing caregiver burnout. I was dying of thirst. Where was the water! As much has I hated it, I had to cry “agua! agua!”

I put the word out among church friends, art groups, everyone I could find...that I needed help. Help didn’t come all at once, but it slowly came in with perfect timing so I would be more accepting toward it. When a friend offered her husband, I took a deep breath, held my head up, then hung it low in humility. I accepted this cup of water. Their friendship has grown precious. Then, I found my first “paid” friend for Jerry. That too has become a wonderful relationship.

Personally, it gives me joy when I show compassion for someone. My compassion is not out of pity, it’s because I care. It makes me smile. Likewise, to not accept another’s kindness robs them of that same opportunity...to be a part of a team..to be of support..to offer a cup of water. I must admit, now, when help is offered, I am too pooped to resist. Truth be told, I say “BRING IT ON!” When this is all over....do I have a lot of "paying it forward" to do! I hope they’ll let me.

What Relief!

Jerry just rode away with his new “JV”. That’s what I’m calling Jerry’s new volunteer group... the Jerry Volunteers. I can’t tell you the relief I feel. Last night the first couple called to confirm the details. He’s going to breakfast with our church “seniors” group. I’ve met a few of these “seniors”. They are a hoot and have so much fun. The “JV” couple has briefed them that Jerry is coming and she said they are anxious to meet him. The breakfast is buffet. Hope Jerry doesn’t just think the table is there for him! Let’s keep our fingers crossed. After breakfast, he’s being taken for a ride to the marine base nearby. He’ll love that.

I feel like a mom who’s getting her kid ready for his first day of school. He is full of anticipation. Jerry was sitting in the chair next to me when the JV called last night. When I hung up, I told him friends were coming to pick him up in the morning. His face was so lit up you would have thought Santa was coming! It was all I could do to keep him from getting dressed right then and there. Going with the flow of that, I suggested WE go get a shower and shave so that we wouldn’t have to do it in the morning. I couldn’t help but get a little melancholy while watching him shower. My big 6’4 handsome man all shrunken down and skinny, trying to rinse his hair. Sniff! Then, I figured he’d better get to bed early so that he would be rested for his big day. Sort of like getting your kid ready for his first day of school. Nine o’clock, all clean, jammie bottoms on and under the covers.. (Now for those of you who sleep “nudie”....his jammies don’t have feet in them.....they are just boxers.)

I set the alarm for 6:00, so I could take Montana out before getting Jerry up. Once we got home, I said, “Ok. Montana, go wake up Jerry.” Like a good cattle dog, she darted up the stairs and jumped on the bed, nudging him with his nose. Jerry covers his head with the covers, but it doesn’t stop her from doing her job. Once I arrived, I snapped my fingers and she hopped off and stood at attention by my side. She’d done her job!

When the JV arrived, I guided Jerry down the stairs and the JV greeted him with a smile. “Good morning, Jerry. I’m Bill. We’ve met at church. Would you like some breakfast?" He held out his arm and said, "You can hold on if you’d like.” He ushered Jerry to his truck and pulled out the seatbelt to assist in buckling him in. Then Bill handed me his card so I’d have his number. It read, America’s Volunteer Lifesavers across the top. United States Coast Guard, Vice Flotilla Commander.

Such a relief! The school bus door has closed and he’s off.

Spared

I just got my internet back. It’s been an exciting few days preparing for the hurricane that barely gave us a glancing blow. Our island had mandatory evacuation, but I didn’t want to move Jerry unless absolutely necessary. It looked like Earl was going to take a northerly path and wouldn’t be as bad as the weather channel was predicting. There’s a lot of preparation when a storm is approaching. Furniture has to be either brought in or tied down. Pots, garbage cans, swings have to be gathered up. Bread, water, canned goods, batteries have to be bought. Tubs have to be filled. Cars fueled. Cash retrieved. Medications filled. And most importantly, there needs to be a nice supply of Oreo cookies to last several days of no electricity. It was just about impossible for Jerry to keep up with the preparation and he slept most of the time.

Howard and his wife, came over to help. I had most of it all done, but Howard wanted to give Jerry a chance to contribute. I thought that was pretty cool. Ruth and I watched as Howard and Jerry turned over the rockers and lashed them to the banisters. Jerry really had no clue what was going on, but it was a valiant effort to build up his confidence. Jerry’s medicines were en-route via FedEx from the Duke Memory Clinic, but had not arrived. FedEx was not going to be able to deliver them because of the evacuation. So I had to find a pharmacist who would dispense us extra in case we were stranded.

SInce Earl was headed north, I decided against moving Jerry away from home. We had three other families who were staying too, so we decided to all sit it out together. I bought a big ole lasagna to feed the neighbors and we watched the surf from the house across the street. By 9:00 I was unconscious. My eyes just would not stay open. So, I gathered up my man and we went home to bed. I literally crawled in bed with my clothes on... so did Jerry, course, he does that quite often. (when I’m too tired to coerce him to put his jammies on.) You see, Jerry doesn’t understand why he needs to change into jammies. AND SOMETIMES I AM TOO TIRED TO EXPLAIN WHY AGAIN AND AGAIN.

So, we spent the night in dreamland and cared not anymore. WIth little wisps of breezy winds and Earl far off the shore. (Hey, I’m a poet.)

Get Out the Kleenex

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.

Day Two- The Calm Before the Storm

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.

So Far So Good

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.

Hoping to Stabilize

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.

Hallucinations - or a Bad Dream?

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.

Weeeeeeee!

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.