I am the most ADD thing. For example. This morning at 7:00, I sat down at my kitchen table to read my emails and update the blog. I came across a friend who had some prayer requests. Her phone number was at the bottom. So, I looked over into the living room and retrieved my phone off the end table to see if her number was in my contact list. While I was over getting my phone, I noticed my empty cup of coffee and decided to pour a refill which somehow brought me to a jar that I had in the trash. I pulled the jar out, thinking, hmmmm, this would be a good jar to keep my brushes in. Then I saw a bigger jar under the sink that had bacon grease in it. Yuck! I thought..."no, this would a better jar". So, I put the smaller jar away for recycling, and washed the larger jar. For some reason, the locket around my neck swung into my view. This is the locket that my dad gave my mom in WWII. So, I thought, while I'm up, I'll grab the old photo album to find teeny weeny pictures of my parents to put in the locket. I went over to get the album, brought it back to the table, picked up my coffee and my phone and sat down to finish the emails. Now, let's see if her number is in my phone. No wonder Jerry's confused. Thank heavens he's not awake yet.
Keep on Dreaming
Today, I had the privilege of attending a fundraiser luncheon for our local Hospice organization. The Hospice board is trying to build a Hospice house here on the crystal coast. The speaker was Nicholas Sparks, the famed author of The Notebook, Message in a Bottle, A Walk to Remember, The Choice, Night in Rodanthe, and many more popular books. (turned movies).
Not only did I learn so much about the hospice program, but I was motivated to keep on dreaming.
Jerry actually qualifies for hospice care even though his death is not impending. I sat next to a hospice nurse who briefed me on numerous Alzheimer patients who had specialized care plans written up for them, including social workers, volunteers, nurses aides, clergy, and a nurse. We interviewed last summer for the program, but I decided against it. Now, I think it's time. Jerry is needing more and more assistance, but mainly, needs more and more companionship.
Here's the trick. How does a caregiver keep on dreaming when they are caring for someone in decline? At what point do people lose their passion? I have a passion to paint and neither Jerry nor I would want that passion to wane. There must be purpose in it. As women, and primary caregivers of our families, how do we find balance between caring for others and becoming whole ourselves? It actually takes a healthy and whole person to be a good caregiver, wife, partner, friend, etc.
I believe it takes discipline and determination not to let "life" get you down. It takes a positive attitude of gratitude. It takes tenacity and energy. It takes problem solving and scheduling. It means accepting God's provision and allowing him to work through you. I believe God wants our highest for His highest. Otherwise, he wants us to be the best of what he created us to be...not to glorify us but to glorify Him.
I'm syked. Jerry wants to see me grow (and that's not at the waistline.) He loves it when people buy my paintings. Besides, when I thank Jerry for being such a good provider...he responds, "It's your turn now." (in his own Alzheimer lingo)
"For I know the plans I have for you, says the Lord. They are plans for good and not for evil, to give you a future and a hope. In those days when you pray, I will listen. You will find me when you seek me, if you look for me in earnest." Jeremiah 29:11,12,13.
So, caregivers....DREAM ON!
Women Never Cease to Amaze Me
You know, when I was a young girl, I didn't really have many girlfriends. Guess I was a little "Pollyanna", in that I didn't get it when girls were caddy and hurt each other. I remember introducing a new girl to the junior high crowd. Before I knew it, she was in the popular crowd and wouldn't even speak to me anymore. I remember that to this day. From that experience, I learned that boys were better! Anyway, in my adult years, I've discovered how valuable women friends are. I believe God has revealed that to me as I've come to appreciate the wonderful "sisters" in my life. Like I said in a previous post, we can laugh, cry, pray, sing, and dance all in one sitting! My girlfriends can tell, without my saying a word, when I am down. They can tell when Jerry has gotten the best of me. They can listen to me whine, then make me laugh. It priceless! Even my Montana Rose doggie can tell when I need a hug. She's such a good girl!
We can be encouragers, supporters, nurturers, mentors.
Today, as Jerry and I sat on our deck, he could overhear my conversation with my dear "sister", Rose. She makes me laugh. Thus, Jerry laughs. Even though he has no idea what we are talking about...he hears me laugh and that makes him laugh. Hey! It works!
My "sisters" hug Jerry whenever they see him. They make him feel loved and adored. He LOVES that. He has a harem of women friends. More than he would have dreamed of in his healthy days. He's a lucky man! In fact, when they come over and sit at my kitchen table....he sits with us. (oh brother) Anyway, it's all good. Really good in the big picture.
Funny
I'm sorry, but I thought this was so funny. I mean, in the real world, it's not funny. But in Alzheimer world, it's funny. I was painting this afternoon and Jerry came home from an outing with John. They had gone for a bike ride, and then spent a little time at the driving range. Now, before you think he's perfectly fine...you have to understand that Jerry doesn't just hit one ball....he hits three at a time. He doesn't quite get the fact that it works better if you hit ONE ball off the tee...instead of hitting three off the ground. Whatever! He's happy.
Anyway, I wasn't quite finished painting when he got home, so he went up stairs. I asked him to give me just 15 more minutes to clean my brushes. Then, I'd be through. He responded...."Whatever you want.", then headed up. A little while later he showed up again at my door and stroked his chin. That's the signal for shaving. I said, "It's late. No worries. We can shave tomorrow." He kept stroking his chin. Then, I noticed that his mustache was a little fuzzy looking. Since I never wear my glasses, I thought...."how cute. His mustache is greying." Then, later, we were sitting on the sofa watching the news. He kept stroking his chin. Then, I sniffed. "Oh. You smell good." You must have used shaving cream. Come sit by me. " I gave him a big smackeroo. (kiss.)
Like I said in an earlier post...I'm a slow learner. After dinner, I noticed that "grey" mustache really was white. ...as in toothpaste white. Got the que? He had tried to shave with toothpaste. Isn't that cute?
It Helps When the Caregiver Gets It
Ok, yesterday, I really blew it! We had a wonderful day to begin with. As we sat in church, the first hymn was, Breathe On Me, Breath On Me, Holy Spirit, Breathe on Me. It was a precious time together as I saw Jerry caught up in emotion, weeping as he attempted to sing. We held each other tight, as we sang. God was with us.
After church, I ran into the local grocery store and picked up two plate lunches and we went home to eat. It was nice...just the two of us. Then, we took our nap. (After all, isn't that what you're suppose to do on Sundays?) All was good!
When 4:00 rolled around, I was in the mood to get a little painting done. I thought everything was ok so I put on an old tape of Andy Griffith and he seemed happy. Then, I went down to get started on this new commission. Within 15 minutes, I heard the footsteps. Step. Step. Step. I could hear him coming. For some reason, I was grrrrrrd. After all, I had slept with him, woke with him, dressed with him, had breakfast with him, went to church with him, had lunch with him, napped with him.....I really wanted to have a little "ME" time. When I saw Jerry, I asked him if he wanted to watch tv. I attempted to reason with him, told him I needed a little alone time and set up his favorite tv show so he would be happy. ' Please relax and watch your show." OOOOOOOh...that was not a good idea. The more I tried to convince him and drill some sense in him.....the more it DIDN"T make sense to him. NEVER TRY TO REASON WITH AN ALZHEIMER PERSON! Before I knew it......he was back and forth, anxious, a little weepy, absolutely would not settle down. SO.....I did my best to make him comfortable. I took he and Montana dog to the rocker on the porch so that THEY could watch me paint. NO DEAL! IT DIDN"T WORK! Finally, I gave up. Frustrated I cleaned my brushes, went upstairs and sat with JERRY. He knew he had upset me. I showed my frustration. MY BAD! Then, it dawned on me....it was that time again. SUNDOWN!
DUH!! I felt so guilty. I think I got it!
Today, I was prepared. I had John take Jerry for a couple of hours so I could get some work done. Jerry was so happy. They rode bikes and hit golf balls. I painted on this new piece. ...the town of Swansboro, the nearby historic town. When he and John come home, I could see that they were hot and tired, and satisfied. I felt like I had gotten a lot accomplished. When 4:00 rolled around, I put my brushes away. From now on....4:00 is quitting time. Sundown time. All work is done time. I was happy. Jerry was happy. We sat and watched the news. All was good. 
Lemons and Salsa
Yesterday, Jerry and I headed into New Bern to this little art supply store. New Bern is this cool little historic seaport town with lots of old homes and art galleries. Jerry loves to be a part of the business and I tell him I need a MAN to carry my canvases. We were both excited to have a new commission, so I needed a large one for over a fireplace, plus a couple of huge ones for a job I'm doing in about a month. Watch out shoppers, here we come with our canvases blowing in the wind taking up all the sidewalk. There's no control. (no pun intended.) Since it was our "date" to the big city, we visited a couple of art galleries, then had lunch at this cool local dive, known for their crab cake sandwiches. Jerry's favorite. It was blistering hot, so sitting in that cool little booth was such a fresh relief. Anyway, I asked Jerry if he wanted a crab cake sandwich, shrimp basket, or hamburger. Don't know why I asked. He never can tell me. Questions don't work well for Jerry. Sandwiches don't work well either, because it takes the use of both hands. SO, a shrimp basket was my choice for him. I ordered the crab cake sandwich for myself, which I would happily share, since I didn't need the bread. (Man. What goes into making a decision!!!)
A few minutes later the runner placed a beautiful hot plate of shrimp in front of Jerry. Taking a slow gander, he reached for the lemon, picked it up and ate it. The whole thing! In one puckered bite! No reaction at all! You would have thought it was an orange. Maybe it was an orange to him. Who knows? We eat seafood probably 4 times a week and he eats the lemons, first and foremost, every time. What's up with that?
Last night, once the day was done, I fixed us a light snack for dinner. Just some quesedillas and avocado. We hunkered down on the sofa, turned on a movie, then proceeded to snack away. Then, I looked over and saw Jerry pick up the little cup of salsa off of his plate and drink it down. OH NO! I guess that means, if something is in a cup.....you drink it?
You'd think after 12 years, I would figured this thing out. A friend recommended a new book to me about the language of alzheimers. I've got so much to learn.
Made It from the Brink
Yesterday was a really good day. Whew! I didn't think I'd make it through the last few days. Since we're back in paradise now, we able to get back in the routine. Jerry really likes going out with his "man sitters", Robert and John. Both of them have such a good relationship with Jerry and he definitely feels a kinship to them. Honestly, would you want to be around ME all the time? When he returns from a day with them, I know he's had a good time because his spirits seem lifted. Now, he cannot tell me a thing about what they did, nor do I even know if he remembers, but that's now what matters anymore. What matters is that he's happy and secure. When we change our routine, he is constantly reminded of how he is not able to do things. From brushing his teeth in a new sink, sleeping in a new bed, to finding a new place to sit....everything is a new thought process....like a final exam. Do you remember how you felt after a final exam? Mentally exhausted! That's how it is in Alzheimer world. Once the "done" or "toasted" limit has been reached, he's a goner. AND SO AM I. I mean, I couldn't even get Jerry to put his head under the shower to rinse the soap out of his hair. His body was so stiff, it wouldn't bend. (He's 6'4") In our own world, on a good day, he can actually step back under the shower and rinse it himself.
Yesterday, while Jerry was out, I decided to do some personal painting. I've been moved lately at the wonderful ways women help each other, so I began painting a little series of women paintings. Two, in particular, were personal in that women friends can listen, relate, cry, pray, sing, dance and laugh together. What's even more cool is that ALL of that can be done in one sitting. It's a wonderful thing. It takes a while to let your guard down and be vulnerable, but I believe in the long run it's better to be real than to pretend.
So, with that said, I hear Jerry outside my glass door. That's not pretend. He's really there. Tata for now.
Back Home in Paradise
We're back home now and I just saw a beautiful red cardinal fly by. It's been a couple of weeks of emotion. Jerry has changed. Montana has changed. I am having to change. Jerry is definitely in a new stage and I think it's here to stay. At least until the next decline. He's down to 169 pounds, is wandering a lot inside the house, is mumbling sentences that I can barely hear and do not understand. I definitely need a new plan of action and need to find new ways to communicate.
Yesterday he did a something new. He had been with John, his companion friend, for a couple of hours and when I got back they were in the living room. Earlier when they were leaving, Jerry held my hands, as if saying goodbye. When I returned, he did not acknowledge me. This was a first! Usually, we have a huge hug, but this time, he sort of stood by, walked and looked out the window, and had his back to me.
Once, John left, I sat down with him and we watched the history channel for a few minutes. Then, I went down to our downstairs "veranda" and hung some outdoor curtains. This deck looks into my studio and Jerry likes to rock there with the dog, so THEY can see me in the window. I thought it would be cool to make it like and outdoor living room. Once I was finished, I brought Jerry down and sat him in the rocking chair. He was all smiles. Thought it was really nice. We rocked for a while. The three of us.
Today is a painting day for me. I got a really nice commission; a large 30x40 street scene of our local historic town. That will be a fun project and should get my brain cranking again. Jerry will probably be doing a lot of rocking on that porch today. Tomorrow I'm going to a fundraiser for a new Hospice Home and will be hearing Nicholas Sparks speak. I'm excited about that. Besides, I figured I better become familiar with these folks who run this home.
On a bright note.....thought I'd leave you with something funny. You know how Jerry can't live without his socks? Well, the other day we were at the mall and went into a Clarks store. He needed socks BADLY. So, I bought him a couple of "lifetime warranty" socks. Just think, we'll never have to buy socks again! And besides, when we walked the dog last night, I could see that they glow in the dark too! Oh brother!
The Mornin' Sun is Shinin' like a Red Rubber Ball
It's been a few days since I've written. We've been at our youngest daughter, Katie's, house since Friday. It's been nice to get away a little, a new venue, yet somewhat familiar in Jerry's mind. Jerry feels comfortable here and relates well with our son-in-law. For several weeks, now, Jerry has been in decline. I think this new stage has begun to take hold. It's been pretty clear that Jerry needs more help now. He's even having difficulty walking his dear doggie, Montana. I've been leaving the leash on Montana, so that he doesn't have to try to click it on and off of her. So, now, all he has to do is pick up the leash and start walking. Only, now, he doesn't walk very far. In fact, he walks around on the deck. Poor dog.
I know Jerry is quite aware of his new stage. Which makes it really difficult on him. Yesterday morning, we sat and had our coffee and he said, "I ........feel like I'm .....dead." All I could do is look into his watery eyes, rub his hand and say, "I'm sorry." After a few seconds, I got up, fixed his cereal and tried to lighten things up. Get things going again, so to speak. Then, Katie, Jerry and I delivered some artwork to a little shop nearby. Jerry loves to help with that. He feels like he's contributing.
As the day progressed, our son-in-law wanted to show us his new space for his dental office. He's a pediatric dentist and is all excited about starting his practice. It really brought a smile to Jerry's face as we were escorted through the maze of pretend stations that he had taped off on the floor. I could see Jerry's eyes light up as he saw the business plan beginning to take shape. We got a glimmer of the old Jerry.
Once, back home, Jerry reverted back to the "comotose" stage and sat with the dog on the deck. We're seeing a lot more of that these days. BUT, last night.......well, last night was great! We were watching something really stupid on TV, The Bachlorette, and things got really silly. So, our son-in-law, grabbed a red rubber ball and started tossing it to Jerry. Jerry came alive! His reflexes were right on! There they were, tossing the ball back and forth and laughing. It made us all laugh. How cool was that!
Hmmmm. maybe that's it! I need to add "playing toss" to my "to do" list. Either that, or move in with my son-in-law. Hmmm, maybe that would be a NOT!
Sue's Got Her Love Back
Ok, I didn't throw in the towel. I just needed time to myself. John came and took Jerry off to hit golf balls at the driving range. My daughter and her family went on over to Beaufort, this cute little fishing village nearby, so I got the day all to myself. Ahhhhhh! I didn't have to think for anyone!
My paintings are all farmed out right now. I hope they sell. $$$$. So, I thought I'd do a little "me" painting. I've grown to love the support that women give to each other. In my young years, I didn't have that many girlfriends. Thought they were too caddy and backstabbing. We are girls like that? Anyway, as I've grown OLD, I've come to love the "sisterhood." Most women I see now have that nurturing instinct and are sensitive to each other hurts and needs. (Unless, they are still self centered @#&(*#&).
The other day, I was riding my bike around the neighborhood and I saw a young woman in her thirties playing checkers with, what looked like, her grandmother. They were sitting on the front porch, the older woman all hunched over with her cane, and the younger woman curled up in her chair, chatting while they played. It was a beautiful picture of love and compassion! Also, I know how my young friend with breast cancer loves her sisterhood support. We met up last week and she had just had her head shaved and was wearing her fancy bandana. I sort of combined those two thoughts and began to paint the old woman and the young woman, but the young woman has a flowery bandana. They needed each other in their own special way. I hope it sends a "sisterhood" message to those who see it.
Just being able to get my mind on these things, helped bring the love back.
Philippians 4:6. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy, think about such things. Whatever you have learned or received or heard from me, or seen in me--put it into practice. And the God of peace will be with you."
I love those verses. Time alone. Time with God. Sue's got her love back.
To Throw in the Towel or Not to Throw in the Towel
Boy, I really almost threw in the towel yesterday. (Get it? I live at the beach.) Anyway, I've got all the children and grand children here which makes me really, really happy and EXHAUSTED. There's nothing like the love from one of those boys. As wonderful as they are, however, boys will be boys, and boys are LOUD.
Jerry is usually happy when I tell him they are coming, although he hangs his head down like, "oh no." He doesn't like his comfort zone to be disturbed. The first afternoon, I could tell the grumpies were coming. He sat on the sofa and got all sulky. Grrr! (nothing makes me more mad.) BUT, I didn't react badly. In fact, I didn't react at all. Everyone is very sweet and considerate and knows the story. If anything, I get sad because I don't want my son-in-laws to think he's a grumpy old man. They never knew him when he was well.
Most of the time, Jerry is a real sweet and thoughtful man. However, the second morning Jerry went upstairs to start getting dressed and I realized he was up there for too long. When I got up there he was so confused. Even put his undies in the potty. Not good. (my lip is poking out.) I got him all dressed and we sat on the bed for a while. I wanted to empathize with him that I realized his it was chaotic and he was out of his comfort zone. I also reminded him of how wonderful it is to have children who want to spend time with us. What a privilege! The lecture worked for a couple of days and he did great. (at least for a couple of days.)
Yesterday, he hit his limit. I had him go out with his buddy Robert so he could have some dedicated time and they did all sorts of great stuff, even went for a ferry ride to Ocracoke. When Jerry came home we both took naps. So far, so good. BUT WHEN HE CAME DOWN...NOT SO GOOD! All the company was outside, but Jerry sat on HIS sofa, pounded on the ottoman, and COULDN"T SAY A WORD! That frustrated him even more. I tried to get him to calm down but he shoved the ottoman across the room and stomped outside to the deck. Hands back...I decided to just let him vent.
Now, personally I do not do well with anger. This is uncharted territory. AND, Jerry is not going to keep me from enjoying my kids and grandkids. They are such happy things. The fact that Jerry wouldn't calm down and "talk" to me about this made me want to blow steam out my ears. So, I got little McCauley and we went for a golf cart ride. When I got back, Jerry was better, however, it was ME who was not better. I just didn't want to talk to him. I knew if I did, my claws would come out like a woman with PMS. "grrrrrrrr." So, he followed me around like a puppy trying to help me straighten things up from the beach that day, but I kept ignoring him.
Now, I know some of you say..."It's not him, it's the disease." Yes, you are right. And the disease is taking away the wonderful grand dad and dad. However, I can't let him made them feel unwelcome. It's just NOT GOING TO HAPPEN. So, there ya have it. Last night, I almost threw in the towel saying I can't do this anymore.
Thank heavens for a good night's sleep and some time alone. Today, I'm ready to conquer another day. We'll see how things go.
Just a Quickie
Just wanted to thank all you cyber friends with cyber hugs for all your support and comments. Like I said, this blog is to be an honest journey of a caregiver in hopes to tell the real story and be a ministry to others. Sometimes, when I get all melancholy, I know it's hard to read. I mean...who wants to get depressed or listen to someone else who is depressed? I mean, REALLY! I am not a whiney person and am not particularly fond of whiney people. SO, THAT'S ENOUGH WHINING FOR A WHILE! Today is a new day and I am on the way back UP! I am working through accepting Jerry's new stage. Each stage ignites a new series of the grieving process. Sometimes the road to acceptance is short. Sometimes, it's a little longer. But once acceptance is gained, the happier moments can begin. SO, with that said, we are starting a brand new day, today.
Jerry is walking Montana right now and I will be packaging cards that I've made of our neighborhood. It's tourist season and it's great to have people who want to buy a little memento of their vacation. Jerry and I can deliver them later today. I've also got 4 paintings drying in my car. Did I show the one of the garden? 
Oils take forever to dry, so I put them in my hot car and park the car in the sun. Works like a charm. Then those paintings need to be delivered to their new owners. Jerry loves to come with me to do that, because he thinks I am SO SUCCESSFUL. Yeah! Right! Don't know any wealthy artists. Do you? Most of them are dead before they are even recognized. Nonetheless, Jerry is such a supporter and thinks I'm the most amazing artist in the world. Each time I deliver a painting he gets a huge grin and that gives us both warm and fuzzy, positive feelings. Isn't that sweet?
We'll get most of our activities done this morning, so I can be relatively prepared for "sundowner" time. A little 5 o'clock nap never hurt anyone.
Hard to Laugh
I'm finding it hard to laugh. In Alzheimer world there are not a lot of resources to relieve the caregiver. For Jerry and I, the best respite is private pay. $$$$$. Unless, I get relief on a regular basis, I find myself getting a tad worn down, both physically and mentally. The mental exhaustion is the worst because it takes so much energy to stay positive and clear headed. In Jerry's case, if he sees me getting worn down, he declines with worry. He worries, but can't help. There have been times when he worries about my wellbeing so much, that he makes it worse. Does that make sense? Instead of giving me a little space, he hovers like a helicopter over me. The more he hovers, the worse I get. The worse I get, the worse he gets. It's like carrying a piano on your back, you're not going to get relief until you put it down. Try cleaning your house with a piano on your back.
This morning, my eyes popped open at their regular sun up time, but I decided to stay in bed. At 7::30 , I finally started to move out of the bed, and Jerry said, "don't go." You see, he doesn't ever sleep deep. If I move, his eyes open. Last night, I could tell he needed a hug, so I crawled over next to him and put my head on his chest. He said, "Thank you." Those words speak volumes.
So many times, in Alzheimer world, the person is "written off". But, I see there is a person in there. Just because they cannot communicate like healthy people, doesn't mean they don't feel, don't suffer self worth issues, or see that there is something wrong, Personally, I think there is a lot more inside of Jerry than we think. I know this sounds terrible, but it will almost be a blessing when he is UNAWARE anymore. There, I said it. His AWARENESS is a so much more sad to watch. My armchair analysis is that Jerry is teetering on the edge of unaware and aware. WHICH MAKES IT HARDER FOR THE CAREGIVER. ME!
I'm certainly not trying to be some whaa-whaa martyr. It's just the facts. Mamm! I can tell I need some time away so that I can renew my spirits. Unfortunately, I don't see that happening in quite a while. I'm going to visit a friend today who has breast cancer. She's a cute young thing and has just had to move. My helping her move will take my mind off myself and onto her. That will be the best thing ...to help someone else.
Hang in there, you guys.
Sundowners Syndrome
Today started out really good. Some early painting, then some Ellen and some coffee with Jerry.Jerry walked the dog and even took her in the back yard to "play" tetherball. He likes to tap the ball and she hits it back to him. Really cute. So far, so good.
The highlight of the day was when a friend stopped by to visit. What a sweetheart! (I HAD to say that because she's a faithful reader of this blog. Ha!) She, a fellow painter, talked me into painting my garden. So I took out my easel, got Jerry settled in a rocking chair in the shade, and painted away. We even saw a momma deer and two baby fawn come into our front yard. It was a sight to see.
After Jerry's nap, however, Jerry "was not there." He was absent. I figured he just wasn't fully awake yet. He wandered around for hours. I managed to corral him so we could walked the dog again, but after that he kept shadowing me every step I took. FINALLY, I asked him to sit down, gave him some dinner, and told him I needed to go upstairs to take a shower. When I got back, he was crying. (My lip is poking out.) Maybe this is what they call "sundowners."
Sundowners: A period of irrational thoughts and irritable behavior might begin after the last meal of the day and last until bedtime, for example. One theory concerning sundowners syndrome is that the constant daily mental processes for normal living can become overwhelming for the elderly during evening hours. They simply have too much incoming information and their restricted cognitive abilities become overloaded. The result is a period of irritability and negative thoughts.
Yep. I think that's it. He was definitely overloaded. He kept wanting to follow me around and try to keep up with me. He kept saying "I don't have it." Meaning, his brain isn't working. I tried to console him and tell him that it had been a long day and that he didn't need to do anything. Meaning, he didn't need to think. "Let's just watch some TV." Americas Funniest Home Videos usually seems to make him laugh. It's helping a little, in fact, he's laughing now.
Now that I think that's what's happening, I can try to avoid his getting too tired. Tomorrow will be a better day. Right?
Summer Time
You know, tanned feet look pretty dirty. Don't know why I felt I needed to tell you that, but I just noticed my pitiful feet with peeled off polish and tanned toes. Not pretty. Guess I should stop wearing my flip flops. NOT! That's the wonderful thing about summer, flip flops, bike rides, and lots of shrimp!
It's been a great couple of days since the kiddos left. Not that we didn't just love the daylights out of them, but the quiet sure has been nice. I've taken it upon myself to nest a little this weekend. You know, clean out under beds and organize closets. It's therapeutic for me. Besides, I can't handle it when things are too cluttered. It reminds me of how cluttered my brain is. I told Jerry not to try to follow me around the house because it would wear him out. Up the stairs. Down the stairs. Up the stairs. Down the stairs. I turned on a great western movie for him, but soon found him on the porch rocking the dog. Guess Robert Duvall didn't excite him too much today. Go figure!
I'm so excited and relaxed that Jerry's been doing better. We headed out to church this morning, but got the times mixed up, so we ended up at a little coffee shop for a sticky bun. (MY BAD!) Once home, I took out some watercolor paper and began finishing the cute houses in our neighborhood. I sell the prints during rental season. Hey!! It's not a lot but it will cover my homeowners dues. Ha! Jerry doesn't mind me doing that because I sit at the kitchen table and he's only a stones throw away from me. In fact, I can glance over and pretend I'm watching. Hey. It works!
Just wanted to say hello today. Not much to report on. This week will be spent recouping and getting ready for the July 4th onslaught of activities. Ten strong starting this Friday.
What's the Deal?
Just when I think Jerry is on the way down, he comes back! What's the deal? This week I've had my wonderful daughter with me with her adorable but wild boys. (3 under the age of 6.) These boys are fabulous! It took a day or so for Jerry to acclimate, but he's doing really well. Go figure. Course, don't ask him to turn on the water or find the leash, but all in all, he's handling the chaos pretty well.
I've tried to keep his routine in tact. His "friend" came on Tuesday. I've taken him away for lunch, just the two of us, we've run errands, just the two of us. He's had ice cream sundaes, his favorite.
Just as an aside, I've got to mention the personalities of my grand babies. The youngest, 3, is so cute. Built like my side of the family, football player types, very compliant, content and loves food. Today, I took my beach chair down to the edge of the water with a few pretzels for him. He loved to fall backwards into the tide pool. I gave him a pretzel, which he dropped, and he chased it all over the waves in the tide pool until he could grab it and plunk it into his mouth. The second boy, is every mother's dream; deep cerulean blue eyes and a happy disposition most all of the time. He's the artist. We paint together. The oldest is the inventor of the crew. Chatters all of the time, touches all the time, and always has an idea in mind. I was his scientific assistant today, while he took the ladder ball game apart and invented a "machine" that dropped balls into a net and into a puddle of water that the surf had made. Did that make sense? He's one little brain child.
I love different temperaments in people. What wonderful creations!
Anyway, this afternoon, once we got back from the beach, Jerry was wandering around the main floor. I was about BEAT! So, when he came to me asking, "What are we doing?" I said, "I'm cooking dinner. What are you doing?" He looked, puzzled, and tried to mutter something. I said, "Hey. You can walk the dog." He delightfully said, "Yeah!" So, I said, "She's on the deck. Go find the leash." He wandered off looking for the leash and came back. I was pretty exhausted by now, and I said, "Hey, you can wander on the top deck, the lower deck, but you can't wander in here while I"m cooking dinner." THEN, with frustration he said, "I'll come and go any time I want!" Now, this is from a man who never says a word. COOL BEANS! I was pretty excited that he actually exerted himself.
Like I said from the previous post. It's so good to take everyday with a grain of salt and seise the lucid moments. 
Soon the grand babies will be gone and the days will be more mundane. Only to regroup for the next onslaught. Course, I write to keep you upbeat and I do not dwell on the "sleeping in his day clothes" and "dropping his meds in the sand" and "following me around wanting me to shave him". Those things we'll minimize. We'll focus on the good.
Talk to you soon.
Be Encouraged
Jerry has had a great day. We said goodbye to baby Charlie this morning, then the next crew came in this afternoon. Our other 3 grand boys have come to play for a few days. At first it was hard for Jerry, I could tell. But, he loves these little fellas and I think they have perked him up. They are so sweet to him. Besides, he is so handsome! I can't take my eyes off of him. Sometimes some of the saddest things are the comments that you guys make to me in my private email. I can feel your sadness and your broken hearts. That is even sadder than my own heart.
Please take comfort that you are not alone. I felt so alone for so long. It was a process and I'm sure I'm not through processing. While, at times, I write some pretty deep thoughts and sometimes I write flighty and funny things, I hope you can see that each day has to be taken with a grain of salt. It's so important to remember to sieze the good moments and let go of the bad ones. And while we all will grieve off and on for years, and at our own pace, our grieving is a way of healing day to day. We won't grieve today and the whole thing be over tomorrow. We'll pick up where we left off and continue the journey until we grieve again.
When the pain to too unbearable, which it was for me at the beginning, remember that it will subside. Give yourself a little while to grieve, but do not allow yourselves to stay there. We must take the next step and continue walking. Over time, hopefully you'll be able to skip a little.
"The Lord is close to the brokenhearted and saves those who are crushed in spirit." 
Psalm 34:18
Funny Thought
We've had the pleasure of keeping our baby Charlie while our daughter and son-in-law were away at a wedding. He is the cutest thing in the world! He's decided he's not too keen on his morning naps these days, so I decided that it was a good time slot to take him swimming. This morning, I said, "Jerry, let's take Charlie swimming. Come on, let's go upstairs and put our bathing suits on." So, we all trudged up the stairs to the bedroom. While I was coating baby Charlie up with sunscreen I handed Jerry is swimsuit. He took off his shorts, then put them on again. I said, "Nope. You need to take off your shorts and put on the suit." He took them off again and held them. I caught him before the put them back on again, and I threw them over on the sofa. Then I handed him his suit. By now, I was putting Charlie's Pamper Swimmies on.
Then, this thought popped into my head. Question: "What's the difference between getting a one year old and a dementia person dressed for swimming?" Answer: "The one year old's swimmies have Marvin the clown fish in the front." I'm chuckling, now. I'm sorry I found that funny. Jerry doesn't really where pampers. I just thought it was funny.
Survival
You know, I was 46 when this whole thing started. It's been a long haul. I didn't realize how young I was....Now that I'm 57. Now, I realize HOW YOUNG I WAS! It's a challenge to keep living "in spite" of the disease NOT "in it"! And I'm going to go here for just a few minutes. I must admit that writing this blog keeps me IN the disease. Not where I want to be. Sometimes I think I need to get a life. But you know what? Every time I get away, do something else, take a break, laugh with friends, whatever; I still come back to Alzheimer world. This is my life! In the time we've been living in Alzheimer world, several friends we've known have passed away from cancer. It seems we were the first to get sick and we'll be the last to die. No one is going to escape their "end." Some will be fast, some will be unexpected, some will be longterm.
So how do you survive caring for someone with a long term illness and not die of exhaustion yourself. Do I cry? Not too often. Did I cry? You bet your sweet bippy I did. I couldn't stop crying inside or out. This is a marathon illness and one that is financially crippling, emotionally exhausting, and mentally draining. It exhausts caregivers and it exhausts friendships. People mourn in the beginning, then some friends move on, but the caregiver can't move on. The caregiver must endure.
So, what are my coping skills? CHOCOLATE !!
No, really. People have asked me how I stay so positive and find joy in this situation. I'm not going to give any holier than thou sermon. Believe me, this is hard and very sad! It's just that I can't "GO THERE."
I made a decision a long time ago to keep myself far away from the drain. The drain is that little hole in your sink that sucks all the water down. If I get to the edge of that drain, then I will get sucked right down into the hole of depression. Imagine the incredible shrinking woman getting sucked right down and eventually drowning. That would be me!
Call it denial. Call it what you want, but to last in this race, I have to be somewhat disciplined. I must sleep. I must exercise (WITHOUT JERRY), I must interact with other people, I must stay around laughter, I must have my alone time. I must create. I must NOT sabotage myself with false hopes. I've given up fine dining, romantic evenings, intimate conversations. I've had to adjust. I'd rather eat in front of "Everyone Loves Raymond" and hear Jerry laugh, than sit by candle light in silence and drift into a melancholy mood. I've learned not to have unrealistic expectations. I refrain from complaining because it doesn't help me. I turn on upbeat music and dance. I listen to talk radio. We watch movies that take us away. I ride my bike. All of this is done in small spurts. Like sprints. I try to stay somewhat structured, with the understanding that things may not get done. I seriously don't sweat the small stuff. (Like his sleeping in his clothes or eating with his fingers.) Sometimes we take naps together on Sunday afternoons. Or any day, for that matter.
I stop wondering when this will be over. It may be next month, it may be 10 more years. I take one day at a time and make the best of it. Unable to plan ahead, I take one step at a time and live in the step I'm in. I am up front with people. My husband has Alzheimer disease. Most of them have grace and compassion. I apologize up front when I don't return phone calls promptly, or invite people over. I offer everyone an open invitation to come over...AND THEY DO. I try to have a cool beverage and some at least some nuts on hand at all times. We are so often surprised when they show up on our deck. That way there's no anxiety on my part to get ready. No pretenses. Just acceptance.
Enough seriousness for today. Love. Love.
Respite Care
I'm really beginning to see a new decline in Jerry. In the past he would have periodic declines after particularly busy days, but he would bounce back after a few days of rest. Now, I'm not seeing a bounce back. This may be the beginning of his slipping over the edge. Who knows. But, I know it's coming eventually. The other day, I started a blog post and stopped, realizing I needed to take a vacation from Alzheimer world. It was so refreshing to my mind and spirit. Respite is one of the most important tools for survival.
I know I have new readers, so I would like to address my respite journey. Actually, the first attempt at having someone else care for Jerry was when I was still working. I didn't feel comfortable leaving Jerry for very long. I had scaled down my working hours substantially, but on occasion I needed to be gone for 8 hours. So, I searched adult day care programs which were totally depressing. Most were filled with pretty advanced alzheimer folks and I knew Jerry was not ready for that. Finally, I found one with an array of disabled people who were quite young. Jerry had men his age who were stroke victims, or other challenges but still had their mental faculties. The staff was energetic and fun. Lots of games and exercise and sometimes visitors who played music, etc. It was a good fit.
The way I broke it to Jerry was that he still had a contribution to make and this could be his service project. As a "volunteer" he could help with exercising the elder folks, and just visit with them and make them smile. He always enjoyed visiting with people. The first day, I felt like a real schlep leaving him. When I drove off, I felt like a mom leaving her preschooler for the first time. It was, yet, another emotional step in this disease.
When I finished work, I checked my phone messages and they had been trying to reach me. Jerry had run away! We were all freaked out! What happened was that during mealtime, Jerry was suppose to help serve the meals. When he went back to the kitchen, he slipped out the back door and walked 4 miles home. Jerry knew what was happening and he didn't like it.
Once I found out Jerry was ok, I became livid. Not at the respite people but at Jerry. I was so mad that I couldn't go home, because I knew I would raise my voice. So, I went to a friend's house to calm down for an hour.
Eventually, Jerry and I had some serious conversations about how I needed his help and cooperation in order to work until retirement. I was honest with him about my wanting him to be safe and that since he was still able, he truly could be of service to the people at this day care. He finally agreed and eventually came to enjoy the friends that he made there.
That was 5 years ago.
Needless to say, things have progressed since then. If we were still in Raleigh, I would have him go to that wonderful place a couple of days a week. But since we live down here, I've had to take the private companion route. That's working out well for now but it is more expensive and quite a challenge finding the right person. We can't just stick our sweethearts with anybody, ya know.
My goal is to have Jerry stay with me as long as possible. Right now, it's working out fine. However, seeing his decline, seeing his eyes become more vacant, I know the next step will be here before I know it. Not that I'm going to become obsessed with it, but I've at least got to explore them options out there in case it comes to a point that I can't handle it.
Well. Jerry just came down the stairs. It's morning and he always does
better in the morning for an hour or so. I'm always the first one he sees and his eyes light up. This morning, he came "running". (We watched Dear John last night and I think he remembered their embraces.) Sooooo, with that said, I think I'll go hop up in his arms and let him swing me around. KIDDING!