My new Australian suggested I take a whole day off from time to time. So, today is it! Jerry is out with his "buddy" and all last night I thought I would walk out to the beach, spread out my towel and lie on it! You know, like an 18 year old on vacation. What am I doing writing this post? See ya!
Adjust or Self Destruct
Today's going to be a great day. So many people want to know how I can find joy in this situation. Well, I'm not going to give any sermons, but all I can say is adjust or self-destruct. Once acceptance is gained, the coping can begin and in coping, hopefully humor and joy can be found. First of all, I needed to quit trying to be superwoman. I think "retirement" brings it's own challenges; the challenge of feeling productive and purposeful. Caregiving was not exactly my idea of being purposeful. After all, I had raised the kids and it was time to be free! I think I would have rather been a famous artist and "contribute" my "talents" to society. Yeah, right! Like the other 10 millions artists out there. We know what the world thinks of artists. NOT MUCH! Or, maybe I could have been Mother Theresa...a famous missionary helping throngs of underprivileged. Surely that would have given me tons of jewels in my crown.
I still struggle with what I wanna be when I grow up. I think we all do. Once I was in Alzheimer world, I was forced to adjust. Forced to accept the situation because there was no getting out of it. I mean, what was I going to do? Run away? Sooooo, seeing the path laid out before me, I figured that I'd better start working on a new career for the second half of my life. A career that I could do while still having my sidekick around. We've been fortunate that Jerry was a good provider and we worked on paying off our house. So we did not have any debt. Thus, we can manage on disability and social security. IT"S A VERY TIGHT SQUEEZE. So in order to do anything extra, eat out, maintenance, lawn care and manage caregiving expenses I've got to have some extra income.
So painting is it! Now, no one can make money painting, however, I can make more selling a painting than I can working at McDonalds..."Can I supersize that for you?" Right! I'd be supersizing ME. You'd think a 20 year career with an airline might qualify you for more ....NOT.
Being able to create something out of nothing makes me smile. Doing it to flamenco music makes me dance. Doing this in a house full of windows makes me happy. Happiness is something to cling to and it's important not to let the grumpies get to you. If I ever get near the drain of depression, I back away as fast as I can. That drain will suck me in so deep that I can't get out.
It's important to socialize. Being around funny people keeps the mood up. I must admit that I get a little resentful from time to time when I see adults our age out on their boats or kayaks, or mountain climbing, or sailing. But, I have to give those thoughts a huge shove out of my mind. Negativism can only discourage and destroy.
Course, it helps to have help. I've finally realized that I need help. So, I've hired a companion to come in 2 afternoons a week. Since they are good able bodied men, I like to give them men duties...take care of my car or run errands to Walmart. This time they get to have sidekick and I get to have my own time. It works like a charm.
Hope this helps anyone who's in my boat. We need to keep our boats afloat and not let them get too full of water, lest we sink. Talk to you later.
Missing Man
It's so humid here that when I woke up this morning the leftover Oreos on the counter were as soft as my love handles.
Jerry went missing this morning. There was a cool little arts festival in nearby Swansboro and I thought Jerry and I could go check it out early before it got too hot. A lot of art festivals have gone "china", I call it, where the vendors are really selling reproduced junk, so I'm really not a fan. But, today's art show was juried, which meant the artists are chosen for their quality and original designs. I was delightfully surprised at the wonderful things that were there. Since, I've become a painter, I've really learned to appreciate the time that artists put into their craft. I mean, for this little glass bead artist to sell a handmade bead for $18 might seem expensive, but it's not. She spends hours over her hot flame making one of a kind beads. I bought one that I'll used as a charm. You know people spend so much money on junk, T-shirts, drinks, fleeting stuff, why not chose to spend it on a quality one of a kind work of art that you can appreciate for years. SUPPORT YOUR LOCAL ARTIST!
Anyway, yes, I lost Jerry. I was at this pottery booth getting a gorgeous platter (that you can't find at Marshalls or TJMaxx). I needed a platter like I needed a hole in my head, but I wanted this artist to succeed and her work is fabulous! Jerry was standing outside the tent...right at the opening. Now, these were open air tents and I could see Jerry. I walked in to pay the girl, started chatting with her about her pottery, turned around and NO JERRY. Where in the world did he go? I mean he was no where in sight. About that time some friends of ours just happened to walk up. I looked at them and said, "I can't find Jerry. He's disappeared!" Immediately, everyone spread out and went on the Jerry search. I stayed put in case he came back. About 15 minutes later, I saw a thumbs up from one of the guys. They had found him about a block away WITH HIS SHIRT OFF! (I told you it was hot!) When they brought him back to me, he looked at me and said, "Why did do you that?" He thought I had left him, not the other way around.
Jerry was a tad disoriented and hot. I thought I'd better get something cold inside him so we walked over to the Italian Ice booth and got a nice frozen goodie which I think helped. I made him put his shirt back on, which he didn't want to do, but I told him we were in public and he needed to put it on. He's not a chippendale, ya know.
I think Jerry's making another shift. That's what I call it when I see him going down. For weeks now, I've not been able to read his mind, like usual. I'm having a hard time figuring out what he's trying to tell me and frankly, I'm getting exhausted trying. Sniff! I can't go there. I'll get sad.
Anyway, other than the case of the missing Jerry, the day has been good. One of our old pastor friends, Larry, from our old church came to visit which was the highlight of the day. He and his wife are precious and it was so thoughtful of them to stop by. I've just finished painting a couple of canvas rugs and Jerry is now doing push ups. What! What did I just see? I think I'll go join him.
Later.
Long Day
It has been a drop dead jam packed day. We woke up this morning and headed to Southport. I had been up since 6am packing the car with paintings to take down to my first gallery. Yippi! Once the car was packed, I ran upstairs to get Jerry and I showered and presentable to meet and greet for the day. Unbelievable! For the entire 2.5 hour drive, Jerry would ask, "Where are we going?" I'd say, "Southport." He'd say, "Oh, I've never been there." I'd say, "Yes, we have. We spent the night there about a month ago. Five minutes later, "Where are we going?" "Southport." "I've never been there." "Yes you have. We went there about a month ago." Five minutes later. "Where are we going?" "Southport." "I've never been there?" and so on. My son said I needed to put a sign on the dashboard, "SOUTHPORT". Not a bad idea.
About 11:30 we arrived at the gallery. Jerry was so handsome and wanted to engage in conversation, but it was a bit awkward. The gallery owners were as sweet as can be to the both of us, but I kept trying to get Jerry to sit in their little sitting area and relax while we hung the paintings. Jerry just will not sit. Whenever a customer would come in, he would go and try to talk to them. I kept going over there and gently grabbing his arm, bringing him back to where I was. I mean, I must admit that I feel uncomfortable when he talks to strangers. Sometimes, I even get a little embarrassed. Well, not embarrassed, but well, uncomfortable.
We finally left the gallery at about 2'oclock and headed back home. My trusty Toshiba bit the dust two nights ago, so I am proud to say that I am currently typing on my new MacBook Pro. On the way home, I decided to venture in to Best Buy to check out new computers. Believe me, I didn't want to buy one, but two days without one was about as much as I could stand. So, off to Best Buy we went.
It had been a long day, poor Jerry, but I really needed to get this done. Jerry followed behind me as I headed back to the computer section. He does that. ..follow behind me. It doesn't matter how fast or slow I go, he stays about 10 feet behind me. I can even stop, look back, and he'll be stopped 10 feet behind me. Just envision it. Not funny! I don't know what he sees in my back side, but it can't be pretty. Once we were in the store and I was talking to the sales girl and he would stand about 18 inches from us. TOTALLY, invaded her personal space. I shooed Jerry off to the large screen TV section and apologized to her and explained that he had Alzheimer disease. She was fine. BUT...within minutes he was back.
You know, I wanted to get mad, but I couldn't. All I could do was feel so sorry for him. As I saw him wandering back over to me, I could see that lost and vulnerable look in his eyes. I could see how sick he really is. Granted the day was WAY LONG, but he really is unaware of how unaware he really is.
We're home now. Montana greeted us with her usual enthusiasm and jumped up into Jerry's lap while we were sitting on the porch. Auuuuu! He was "home again". I could feel the relieve in him. I was so glad and they were perfect. It's been a long day so I'll close for now. Nighty night!
Grill Time
Last night we had friends over to grill steaks on the deck. The night was perfect for sitting under the umbrella with a candle or two, eating and laughing. Don't misunderstand. Jerry does not exactly participate, but he listens and sometimes catches the gist of things and lets out a belting laugh. That gets the rest of us laughing.
One thing that Alzheimer disease has done for us is let go of social norms and superficial expectations. I never was a social climber and definately was never a "groupie" or clique person. There
are way too many cool people in this world to know OUTSIDE the clique. And I figure that if I really believe in God, and he put people in my path, then I'd better be a good representation of Him. As far as I'm concerned everyone on this earth is his loving creation, on their journey designed by him, and who am I to question it. I was placed here to love others along the way.
ANYWAY, sorry about the sermon. Back to social expectations. I never was a china and silver type of girl. But I've fallen in love with beautiful works of art. So, now, when I have people over, I use my antique silver and funky pottery, turn on some flamenco music, put on my flip flops and let the fun begin.
Jerry likes all the activity. I think. I try to keep the party to sixish. Two couples might make it a little uncomfortable to the other guy, because he might be saddled with Jerry all night. More than 8 can be too many. Jerry may as well retreat to his room. Six is just right. I make sure our friends are all cognisant of him. Whenever we sit on the deck, they make sure Jerry is sitting right in the middle, not on the end. If he were on the end, he'd surely be left out and begin to withdraw. Even though the chatter is fast and furious, most of our friends have a keen ear turned toward Jerry, so that if he were to mumble something...like EF Hutton...everybody stops and people listen.
As far as the grill goes, Jerry doesn't do that anymore. That can get kind of tricky. Men are usually happy to help me out, but I have to be mindful not to give the impression that they are "replacing Jerry". Instead of being prideful and taking over his jobs, it's better for them to be gracious and say something like, "hey, LET's check out these steaks, Jerry." Does that make sense?
When we sat down to eat, Jerry could not eat due to his concern about Montana dog. I had put her on the lower deck so we could eat in peace. However, she decided to make her voice known and whine. Mean ole me wasn't going to have that, so down in her crate she went. That did not sit well with Jerry, but, everyone tried to distract his obsession with her. Eventually, he smiled his chesure cat grin and "behaved".
Anyway, that's it for today. That's enough education for you in social situations. I'll think of some more as the days go along. In the meantime, have fun, be thoughtful, and keep on laughing.
Honorary Ranger
When Jerry was first diagnosed, he was immediately "retired" from work, declared 100% disabled, and "put out to pasture" so to speak. He was 50 years old. I can't tell you what that does to a man whose self worth was calculated on how many sales he got that month. Jerry always loved to play golf. With his long, tall frame, his swing was natural. So, trying to be all positive he decided to become a ranger at the golf course. We were not members of any club, but being a ranger gave him golf privileges. He was in heaven. Unfortunately, within 6 months, he was unable to do the job. A ranger is the guy who times everyone's start so that golfers don't rush each other. During that 6 months, Jerry became a part of a bunch of wonderful buddies. They all decided that they weren't going to let Jerry go down without a fight, so they made him an "honorary" ranger. So he wouldn't feel pitied, his job was to fill the divits with sand on hole number 3. (Believe me, I filled many a hole. It became our Sunday evening date.)
I can't tell you what that meant to me for these guys to rally around him. So often, when a person gets diagnosed with Alzheimer disease or dementia, they are "written off". Imagine if that were you. One day you are a viable part of a community of friends. They next day you've become forgotten. Not cool. At first, when I saw this happening, I was pretty bent out of shape. After all, Jerry was still a person of value even though he would sometimes get confused. Grrrrrrrr! Most of the rangers took it upon themselves to include Jerry in a foresome atleast once a week. I am so endebted to them for their compassion. (Besides, he hit the longest drive and they would play off of it. Ha!)
One day an old acquaintance from our church was approached by one of the rangers. The ranger asked, "You guys ARE taking care of Jerry aren't you?" The guys responded by saying, "Jerry? He's got dementia. He can't play golf." To this day, it still bothers me. After I had a little talk with my daughter about it, she reminded me that some people don't really know how to react. They just need educating. So I am here to tell you. Alzheimer people have feelings, need to feel included, need to feel valued, need to contribute. (atleast while they are able.)
I met a neighbor this morning whose dear friend has just been diagnosed with Alzheimer Disease. They had shared a literary club for years. After a few months, her friend didn't want to come anymore. She told them she couldn't read and she felt bad coming if she couldn't host once in a while. But those women wouldn't take no for answer. They each alternate picking her up and bringing her to club...whether she's read the book or not. You see she needed to feel included and valued. Afterall, what was more important, the book or the relatio
nships?
An Alzheimer person soon loses his ability to initiate an activity. They soon cannot use a phone even to answer it, much less dial it. So they sit. If Alzheimer folks are left alone, they will become isolated, depressed, and probably decline faster. This is the time for friends and communities to step up to the plate. Be a friend and stay a friend. You'll be glad you did.
Frog Watching
A couple of days ago, we were riding our bikes around the neighborhood when we ran into our dear friends Anne and Dale. Actually, we were going to crash their house and invite ourselves in. It was about 6pm, "decktime". Most of the time, folks come to our deck because we have this spectacular unobstructed view of the sunsets, but this time it was time for a change. When Dale saw us, he said, "Come on in. Let's go watch some frogs." Funny. That's about the most exciting thing we do around here. So we poured a little wine, had some brie and went down to their pond to "party down" with the frogs. Ribbit! We have those cute little green tree frogs around here...the ones with the red toes and buggy eyes.
Being with Jerry, I feel I have to be like a frog sometimes. I have to be ready to jump. I have to be ready to catch what he is saying on his first attempt. He really does try to talk now and then and when he does, if I don't hear it...well, it's gone. I can't say, "Huh? What did you say?' because, he won't remember what he said. It doesn't help that I don't have the sharpest hearing in the world, either.
There are times when I want to hide under a pot or a bush like a frog. When I hear Jerry coming, sometimes I hide. I can't believe I just told you that. Remember when you were a young mom and couldn't take a bath without a child coming in the door? Well, that's the way it is. I mean...if I thought Jerry really needed me, I wouldn't hide, of course. But, when he's just coming to look at me and peek through the door, I sometimes want to hide. I suppose I could sit really still and when he reaches out to touch me with his "dead" right arm, I could spring to the other side of the room. I could make it a game. Just kidding!
I'm feeling a little fiesty right now. It's late and we were watching Entrapment with Catherine Zeta Jones. Jerry was actually sleeping on the couch next to me and mumbling that he wanted to go to bed. You know he will NEVER go up to bed unless I go with him. I said, "well, why don't you go ahead and jokingly told him that by the time he gets his jammies on, I'll already be in bed. I had him convinced, so he went on up. I'm still here. I'm so bad!
Have you ever seen one of those tree frogs sucked onto a window? They have little suction cups on their feet and can stick to anything. Sometimes I feel like that too. Like I'm stuck on the inside of the window, looking through and can't get out. Can't believe I said that either. I don't know why that just came to mind. I guess it just sounded like something a psycologist would say to make me express my own "entrapment".
Really, "it's all good." I think I'll stop rambling now before I get in trouble.
This is Where We Are
I can't go another post without saying this.
When we were a young married couple we were always active in things that were important to us. For us, having God in our lives was the utmost purpose of our being. Of course, we were young and the debth of our relationship was young too. We were "invincible" (or so we thought.) In our church, we taught preschool when our children were babies. We taught second grade Sunday School when our kids were in second grade, we worked with youth when our kids were teenagers and we led adult prayer time after our kids grew up and we actually began to attend adult Bible study.
Now, I promise we were NOT at the church every time the doors were open. We were NOT "holier than thou". We just led a very active and balanced life. Jerry was a work-aholic and I was a mom-aholic. Even so, no matter where we were in life, whether it was good or bad, we both knew that the spirit of God was with us and that we were not alone.
As Jerry's disease has progressed, we've dropped out of those activities. No longer are we married to busy-ness. We moved down to this little beach town, and started all over. Against the advise of our old friends, I still felt in my heart of hearts that we were suppose to be here and that God had prepared this place for us. As I look back over the last three years, I believe this has been a time of restoration in our souls. Alone with God, so to speak. We've met friends who, I believe have been "handpicked" by God. People, who we never knew, but have filled the needs that only God would have known. It's hard to explain.
No way, would we have imagined that we would be in this situation. We were always healthy. Neither one of us had ever experienced any illnesses or had ever been in a hospital (accept for delivering 3 babies.) This was the farthest thing in our minds. BUT, HERE WE ARE IN THE MIDDLE OF ALZHEIMER WORLD AND THERE'S NO GETTING OUT OF IT! We've had to let go of things that were. We've become the recipients of the time of others, instead of the ones who give of our time. That's been a hard adjustment, being on the recieving end of things and not being able to pay back.
But, it's ok. We've grown because of it and we've learned to accept help and kindness from others. It been said, "not to waste time worrying about things that may never happen" and as my new email friend from Australia says, "worry does not empty tomorrow of its sorrow, it empties today of it's strength." So, with that, I'll trust God for His provision. No matter where we've been and no matter where we are going on this journey called life, I know He is faithful. We are not alone.
Human Touch
Don't know about you, but I've come to realize that I need to be touched.
Right this minute, Jerry and I are sitting on the sofa, drinking our morning coffee and laughing along with Ellen Degeneres. I needed to do a little admin stuff, so I brought my computer upstairs, pulled a TV tray up and decided to catch up while hanging out with him. He thinks that's great. (He thinks, I'm making money. HAHAHAHA. Little does he know.)
While typing away, Jerry noticed me straining my neck. (I've had a cervical fusion that gets inflamed now and then.) All of a sudden, I felt his warm soft hand on my neck and I completely broke out into chills. Oh my goodness, I thought I was going to melt into the sofa. My arms went limp and I felt all the stress flow out of my body. Then, HE QUIT!
One thing that I've missed throughout this ordeal, is his touch. Not that we were all touchy feely, nor were we the PDA type, but we did hug and we did dance around the room when good music came on the radio. He also use to use me as his teddy bear when we slept. In fact, he'd have me so constrained with his arms and legs that I couldn't move. That doesn't happen now.
We all need to have those endorphines released with a hug or embrace, or arm around the waist. As Jerry has progressed his arms have become less active. He keeps his right arm in his pocket and stiffly swings his left as he walks. In bed, he sleeps on his back and is so boney that we don't cuddle too much. Even though it use to drive me crazy, I've discovered that now I miss it.
Anyway, I've started getting a massage (when I can afford it). My girl, Julia, is the best deep tissue therapist I've ever been to. She finds those pressure points and digs those elbows right in. It hurts so good! It took several treatments to even get the muscle over my scapula to move. I mean my wingbone (that's what my momma called it) was stuck like concrete.
Ok. I'm picking up the phone. I'm going this afternoon. Can't stand it anymore. I'll have to rob a bank first, but I'm going! Signing out for now. You caregivers! Go get a massage. Ya hear! All marathoners need their massages and that's what we are.
Let's Talk Grooming
Thank heavens I've never been a perfectionist clothes horse type of person. On a daily basis, I throw on my trusty pair of cargo pants from Anthropology and a white t-shirt, slap on some mascara, and some gold hoops, then spend 30 minutes getting Jerry ready. It's a fine art to groom a man.
In his day, Jerry was always this statement kind of guy all dressed in his navy blue pinstriped business suit, tall, dark hair and blue eyes. Whew! He was a looker!
While visiting my son in California a few years ago, I specifically remember standing in the little bathroom of their cute little 100 year old cottage. Jerry was a tad disoriented. I could see it in his eyes. This bathroom had one of those pedistal sinks with a hot and cold faucet and no room on the sides for his shaving gear. His razor was in a dock kit, not in its same place on the side of the sink. He already had enough adjustments to make sleeping on an air mattress on the floor instead of his own bed. Plus, we were in the middle of Los Angeles. This was the first time I shaved Jerry.
Since then, I've learned a lot about grooming. I think it's more important than ever to keep Jerry sharp looking, dressed nice and well groomed. Afterall, it doesn't take much to change from handsome to homeless, ya know. In order for him not to forget how to shave, I had him begin using an electric razor in between my shaving him with a razor. It's not as close of a shave, but it works pretty well. I've also started cutting his hair and have really butchered it from time to time. And those eyebrows! Oh! It's all I can do to keep them from being like Andy Rooney on 60 Minutes! Then, the nose hairs. It's the curse of a tall man!
Today was Jerry's follow up at the dentist. After his evaluation, the hygienist began demonstrating TO ME how to brush and floss his teeth. Oh, come on!
I must say that Jerry's toofies need to stay bright and shiny. AND the man! Well, he's so tall, and so stiff now, that he doesn't lean over the sink far enough, so you know what that means? Toothpaste drippies down the front of the shirt. The sweet little gal, with her kind voice, said to have him sit in a chair. Then she asked, do you have a recliner? WHAT! I've always hated recliners! It's like a minivan. I've always fought minivans! Boo! Hoo! My life is over!
Painting Day
Today, I had a total painting day. I've got some deadlines coming up so I told Jerry I had to "work". If I tell him I am going to paint, he groans, however, if I tell him I'm going to work, he completely understands and tells me to "focus". Yeah, right! Besides, I told him if he'd let me paint today, we'd go to see Robin Hood when I was through. He was good with that. When the sun peaked out this morning, it was Montana's que to get me up. We went for a bike ride and I loved the way the sun was hitting the colorful houses in our neighborhood. So I went back to the house and got my camera to take pictures. When I got back, I worked on the photos so I would have some good shots to paint. Hopefully, the tourist will like them....A LOT!
When Jerry woke up, we had our coffee on the deck and I told him our schedule. Told him that I would "work" for a couple of hours, he could walk the dog, then come back and watch Dr. Oz. He likes Dr. Oz. I'm afraid Dr. Oz took a backseat, however, because once Jerry and Montana returned from their walk , they parked themselves right outside the glass door of my sanctuary. (That's what I call my studio.) There I was...playing flamenco music..painting away, when I turned around and saw them; Jerry and Montana sitting in a rocking chair looking in the room. Obviously, Jerry is much happier if he can see me. It's a security thing, I suppose.
During our lunch break, we snuck over to our neighbor's pool for a swim. Jerry was never much of a swimmer. He swims like a kid who doesn't want to get his face wet. Funny. I tried to have races with him, but he kept getting out of the water after every lap. It was hopeless. But, hey! Exercise is exercise and we both need it.
Jerry's still doing fairly well. He's much more alert and although he is somewhat confused, I'd rather have an alert confused person than a lethargic confused person. Routine, routine, routine. As long as I keep things routine, he does pretty well. (relatively speaking.) I even saw him turn on the TV today. He hasn't worked a remote or a cell phone in years. So, I nearly fell out when I saw him actually push that red on/off button. Wonders never cease!
Robin Hood turned out to be playing too late. Our bedtime is usually about 10 pm. and old Robbie was coming on at 9:20. What was he thinking? Doesn't that theatre man know we go to bed before that? What's up with that! The shoe store is next door to the theatre, so shoes became Jerry's reward. He's been obsessing over wanting new shoes for weeks. (even though he has about 5 pairs of brown slip on shoes already) So there you have it. Another day, another painting, and another pair of brown shoes.
Talk to you soon.
Lost in the Crowd
It's come to my attention that some things I just take granted now. I guess I've just developed a sixth sense about Jerry. I mean, I can read his mind (AND THAT'S SCARY), I can finish his sentences, I know what he wants to eat without his asking and sometimes I can read his opinions on things. I don't make a move without having his needs in the back of my mind. It's just automatic. A new email friend recently wrote how she panicked when she lost her her newly diagnosed husband in a crowd. It brought back such a vivid memory of when I lost Jerry in a crowd in Washington, D.C. in the early years of his diagnosis. We were watching the Presidential Inaugural parade with another couple when we all looked around and didn't see Jerry. I completely panicked and felt my heart racing. My coping skills usually send me into overdrive and I was searching frantically with thoughts of "how will I ever find him?" and "how will he find me?" went racing through my mind. I found him about a block back in the middle of another crowd. I'm not really sure he knew he was lost. Oh! Be still my beating heart!
It's hard (or, it was) telling when Jerry was lucid and when he wasn't. When he was lucid, it made me think he was quite normal "the way we were" so to speak. I would carry on and get caught up as if there was no handicap. Then, he would have a set back and be "gone". Remember the movie, The Notebook, when James Garner was having a romantic dinner with his beloved wife? He was reading to her and she began to remember and become who she had been. He was sucked right into the moment. Then, all of a sudden, she "left". She panicked because she didn't know who he was. He was devasted. That's what this disease does. One moment "your here" the next moment "your not".
Over time, as the disease progresses, we caregivers become "trained" not to hang our emotional hopes on those lucid moments. I've learned to enjoy those moments for what they are, just "a moment." Does that make sense?
Our conversations are the same. Just a moment. And many times, when we've had lots of moments all added up in one event, it takes everything out of him. Then he's has to rest. So, I'll take those moments. Short or long moments. They add up to a wonderful companion. Some people never even have that.
Separation
Separate vacations. Jerry and I were the types who never took separate vacations. I don't think it was a deliberate thing, it's just the way it was. These days, it seems, couples are always doing their girl trips and guy trips. I think in our 38 years of marriage we have each taken one trip without each other. He went golfing and I went on a singing competition. That was decades ago. Well, this weekend all of our neighbors seemed to be having a girls weekend. One, with all her old college friends. The other came down to the beach with her girlfriends from Greensboro. There they were, on their decks, all yucking it up and having a jolly old time, and there I was, getting Jerry showered. Hmm.
Anyway, my sweet daughter really wanted me to go out with all these girls for dinner. They all looked over at our front deck and asked me to join them. Katie said, "yeah, mom. You outta go. I'll stay with dad." All of a sudden, I got all excited. Like a wild woman. (Trust me. I"m not a wild woman.) But for some reason I found myself getting all dressed up in this funky Marylin Monroe T-shirt and skirt ready to do the town! I lasted until 9:30. Pitiful! (Marylin would have been so disappointed!)
Anyway, while we were out, of my friends surprised me with the fact that she and her husband are planning on coming to stay at our house for a few days with Jerry so I can go away with my daughters. I didn't know what to say. She had already discussed it with her husband, gave me the dates, and said, I'd better start planning.
As wonderful as this sounds, it really tugs at my emotions. First of all, her offering is so generous. But, what sticks more in my mind is that fact that I NEED to have someone stay with my hubby so that I can get away. We've never been away from each other. Sniff! Why can't I go away with him? Because he's sick, that's why! Sniff! He's the only one I really like to "play" with. But, he can't play. Sniff!
I suppose I am just going to have to separate my emotions, some how. Everyone says I need to get away, if I'm going to survive this caregiver marathon. Frankly, I think I do pretty well at getting away a couple of afternoons a week. I suppose I should accept this wonderful and generous gift from my friend even if this is new territory for me.
Jerry won't like it. Who's going to turn his water on in the shower? Who's going to make sure it's not too hot or too cold? Who's going to put toothpaste on his toothbrush? He's going to be embarassed. I mean, those things are so personal. Is she going to make him put his jammies on or can he just plop into bed like he sometimes does? Not that my friend will mind at all. She has a handicapped daughter and knows the importance of respite from daily caregiving. Her daughter has cerebral palsy and severe behavioral disabilities. She seems to have mastered the balancing act of her motherly emotions and caregiving. I don't know how she's done it. She has a wonderful supportive husband and family and CAPP services. I suppose she's learned a lot in her 21 years.
Her example has been to good for me. Maybe God put us together. Ya think? We've got a long way to go. Our journeys aren't over yet.
Squeeling in the Other Room
Not Jerry. Baby Charlie. Charlie has just been put down for his nap and I can hear him squeeling with glee in his bed. He's such a good baby. There's something about kids and animals that have such an endearing affect on the handicapped. Yesterday, our daughter and her baby Charlie arrived for a weekend visit. You should have seen Jerry's face when he saw that baby. Charlie, had to eyeball every nook and cranny of Jerry's face and figure out what those weird sunglasses were covering his eyes. In his quiet demeanor, Jerry's face lit up with a smile. Jerry gently reached out his hands to hold him, but was hesitant in that he could sense Charlie's caution. How cool that he could sense that! Once told it was ok to hold him, Jerry removed his "sluggish" hand out of his pocket and put his arms around him. They're in love, even to the point that Charlie puts his head on Jerry's shoulder. There's something about children and animals in the way that they have no expectations of anyone. They are truly unconditional in their devotion.
This morning, Jerry and I were walking Montana dog and baby Charlie around the block. We came across a momma mallard duck and her three babies. They were stone still, as if, statues waiting for us to go on by. How did those little duckies know to do that? Those little animals amaze me. Surely, if they had moved, our sweet Montana dog would have chased them all over the pond. Dogs do that, ya know. That momma knew just what to do.
Montana knows what to do with Jerry. She waits patiently for him to find the leash for their walk. She sits and watches him go from room to room, door to door, go out and go in, until finally he sees her and hooks her up. Once hooked to the leash, she can't contain herself any longer so she darts down the stairs literally dragging him behind. Too funny. Then, they head off, "mutt and Jerry", "big and little", for their walk around the P. (I call the block, the "P", cause of its shape.) On the last leg of their journey, Montana grabs the leash in her mouth and pulls Jerry up the hill until they reach our front door where they crash together for their morning snooze. That's their routine, day in and day out. What a life!
It's 10:45 am and they are both asleep. Baby's asleep. Katie is out. I think I'll get a little painting done. Seize the moment, as they say.
Talk to you soon.
Air Show
Ok. One of our dearly beloved "man" friends , whose shall remain nameless, mentioned the Cherry Point air show to Jerry and he has been completely obsessed about it ever since. Jerry is totally in love with jets, helicopters, etc. Now, remember that every day is ground hog day to Jerry, so every day is the day of the air show. Get it? We are NOT going this year. I've taken him for the last 3 years, but this year our daughter and her baby Charlie are coming down for the weekend. Just the two of them. I'm so excited. Besides, the air show would be too hot and loud for a baby. AND, I took him to the antique car show last weekend. No! No! No!
Here's the deal. They call it perseveration, when the person gets stuck on something. The best way to deal with it is to distract the person. Change directions, so to speak. So everytime Jerry mentions the air show, I say, "I'm so excited Katie is coming", "Would you take out the trash?", "Oh, Ellen is on. Let's dance." and so on. NOTHING IS WORKING. It doesn't help that we live in between the largest Marine base in the country and Cherry Point Air Force Base. We hear the practice runs of those harier jets on a regular basis. So, as soon as I get Jerry's attention off that air show, ZOOM, there goes another jet!
Now, Jerry can forget where the bedroom is, but he can't forget that air show. He can forget how to brush his teeth, but he won't forget that air show. He can forget my name, but he won't forget that air show. AND, no matter how I explain it..he is just like a pouting kid who won't take NO for an answer.
I think I'll play deaf. Got any other suggestions?
Go Figure
Just when I think Jerry's on his last leg, he comes down all dressed and ready to go with smiles. I just don't get this disease. On Tuesday, Jerry could not even take his shirt off or put on his shoes. Remember the jean story? I mean it was pitiful and so sad. On Wednesday, however, while I was posting, I heard him coming. Low and behold, there he was, dressed in his yellow golf shirt, navy shorts, with socks and shoes on. (He's a sock man even with shorts. I've tried to make him look cool with docksiders and no socks, but it just isn't going to happen.) Anyway, his eyes were bright and he was motioning to me that he needed to shave. He does that by brushing his hand up against his chin. I was syked!
I think this Namenda and Aricept combo thing might be helping. I also think it really effects him if I miss a dose. Atleast that's my theory for the day. You know nothing is consistant with this disease. But, hey, I'll take any good day I can get.
This morning, I walked with my friend Peg in our neighborhood "wildlife sanctuary". Something amazing happened. After passing our deer, turtles, and baby geese, we came up to our little bridge that crosses over our "pristene lagoon" (it's really a swamp.) There on the rail was an huge egrit, a stoic white bird. The sun was glistening on it's white feathers, and caused a glow against the deep green wooded background and blooming oleanders. With his huge body standing perfectly still on it's long black legs, he would occasionally turn it's head and curl it's long neck to look back and forth. We were only about 10 feet away. It was beautiful sight to see. But the bird would not move off that rail. It's as if he was protecting something. We must have stood there for 15 minutes, dogs in tow, watching that beautiful bird. With our laundry to get back to we started to move on across the bridge. (Hey. Work has to be done, even in paradise.) Then the bird took off in flight, stretching it's long neck out and gracefully soring across the pond with the wing span of atleast 4 feet. What an unbelievable creation!
What a way to start the day!
Too Much to Tell
It's been a whirlwind week. Sorry I haven't posted. Jerry's been up and down over the week and has been rather weapy at times. Don't know if we need to adjust the meds or if it was just the flurry of my being gone to my little art show. I don't do weapy well. It makes me way too sad. One thought, was when I asked him to change from his jeans to his shorts, he just couldn't get it. It became a frustrating ordeal for both of us. Once changed, he slipped away and when he came back I could tell he had been crying. Sniff! It could be that his medicine is working and that he is more "aware" of his inablility to do things. Or, it could be that he's battling depression. When he weaps, he's like a broken down little puppy. Sniff!
On to better things. Yesterday my "girls" wanted to get me away for the day, so our dear Bruce took Jerry from 9am to 6:00. It was the best day I've had in ages. My art sale went really well, so I had a little money to spend. Yippi! We hit the antique shops in Wilmington an found all sorts of treasures. When we got back we all met our hubbies at our local Trattoria. Jerry and Bruce were in the funniest moods like they had been up to "no good". We did a royal job at disturbing the place with belting laughter. Fabulous! What made the laughter infectious, is that everyone LOVES to see Jerry laugh. His smile goes from ear to ear and (since he lost his glasses) his blue eyes capture their audience with an awe. It was a great way to end a great day.
Today, Jerry gets his stitches out at the oral surgeon. He's handled it really well, accept for those annoying little dangly threads hanging down. They'll be gone soon. Ooops! I hear him coming down the steps. He's up. Be back soon.
Farts in the Foyer
You know what I'm talkin' about. We never said that word when I was growing up. My mom use you say, "Did you shoot a rabit?" My kids use to call them barking spiders. Times have changed. Anyway, Monday afternoon the census taker came. Jerry had his dental surgery that day so he was all groggy upstairs on the sofa, when the doorbell rang. Usually, no matter what, when the doorbell rings or Montana barks, Jerry wakes up and wanders around to see what's going on. His step is so quiet and slow that I usually don't hear him. (course, I could be deaf.) In order to save the guy from our attack dog, Montana , I made a bee line for the door. Montana was doing her usual "Montana, the attack dog, bark."
The guy was very nice and I explained that I had mailed my census in last week. He still needed to fill it out in order to check me off his list. It was quick and painless and he didn't ask too many questions. All was good. As he was leaving, we were saying our pleasantries, when I noticed Jerry had snuck up behind me. ( I was hoping to get this guy out before Jerry came wandering down.)
There he was all glassy eyed and drugged up staring at me and this strange guy in the foyer. I introduced them both and then it happened. Without a word, Jerry let out the longest string of farts known to man. I thought I was going to die. Jerry's eyes widened to the size of blue silver dollars and his sheepish grin covered his entire face.
Where's a hole? I need to crawl in it!
I slowly opened the door so the man could run and stated Jerry had just had surgery and was all drugged up. Seems I'm explaining. What's a girl gonna do?
Shakers
Zumba. It's the Brazilian dance exercise craze. Since exercise is so key to both of our being able to fight off depression, I decided to go ahead an order the CDs. I am not able to go to the gym as much as I'd like because I have to pick and choose my times away from Jerry. I tried the Silver Sneakers class for him, but he was not able to do it without assistance. (A LOT OF IT). So, I figured we could Zumba at any time of the day. Along with the tapes (CDs) came a bonus of Zumba sticks. Cool little shaker sticks that rattle. Like huge bright green baby rattles. I gave Jerry the sticks and we tried to learn the steps. Hmmm. "Jerry, you have to watch the TV". He loved the music and really kept a good beat. Accept, he never moved his feet. (I always knew he should be a drummer.) I mean, that guy could play some mean rattles!
Anyway, I stepped away at the cha cha, salsa, cuevo cuevo, etc, while he accompanied me. I was thankful even though I don't think he ever found the TV screen, nor saw those beautiful Brazilian girls doing the instructing. Maybe that was a good thing.
Today, we'll try it again. Maybe this time he'll move his feet.
The Dentist
Remember the trip to the dentist, when we were told we had to go to the oral surgeon to have the tooth removed? Well, MISSION ACCOMPLISHED!
Jerry passed the test with flying colors. I didn't tell him we were going until we got in the car. If I had, he would have been asking about it nonstop. So, to save myself a little frustration, I briefed him of our new adventure on the drive over.
Once we arrived, I had to fill out papers at the front desk, so Jerry was hovering over me like a helicopter. They called him back and said, "We'll take good care of you. Promise!" Fifteen minutes and $450 later, he came out with the usual stuffed cheek look and we got in the car. Everything went fine.
The rest of the day went great, because the pain medication he was on made him sleepy. (Yeah!) No pain, and lots of sleep. Just how I like it. I got so much art business done.
I've got an art show this Thursday and Friday, so I'm trying to wire and sign and label and price. You know the drill.
As an "add on", I"d like to mention www.alzheimerreadingroom.com. It's the most informative website on caregiving I know. This morning I read a post that was 7 months old.(I'm really on the ball, huh.) It gave me a new burst of energy to fight this thing and not give into it. How I am the only one who knows what Jerry can and cannot do. I am the one who can be his drill sergeant, so to speak. That if I do everything for him, he will forget how to do it. So, starting today I am going to start giving him tasks again. Laundry sounds good. AND, if he's up to it, I think I'll get him to do some Zumba with me.
Wish me luck.