Dementia. You suck.

Stages of Dementia. Poor judgment, memory deficit, irritability, apathy, indifference, pacing, restlessness, and agitation may signal a patient has developed dementia.

07/07/2018 First things first. There is nothing funny in this post, it is not my normal happy go lucky, vodka induced island life. It’s just freaking real and I am having a hard time grasping that it’s my families (PJ, Missy and us and our kids) new reality.

I was going to write about grand-parenting or the inability to actually be allowed to do it, but have changed my mind. It’s undeniable that we will never have the joy of getting to know our grand-children because their mother wants it that way and our son can’t/won’t speak up. The mother keeps them close to her, like her little dolls, her play things. She makes the 12 year old sandwiches. The 15 year old has no chores because she doesn’t like to do them.  Everything we do or say elicits an eye-roll from one of the girls. But, I’ll say no more, heartbreaking as it is. I have issues that are bigger so I’ve put that one aside.

My parents are not doing well. They are no longer the people that I knew all of my life. I often ask myself, “who are these people?” I knew this would happen sooner or later. I just always counted on the “later” aspect. Well. It’s now later.

Mom and Dad’s Grandfather clock stopped working, Apparently they are unable to tell time on any of the other 5 clocks in their home. Missy took an old clock of hers and hung it on “Big Ben;” Ben has now been properly fixed.

My sister Missy, who is 13 years younger than me and her husband Mark, are the most incredible people I’ve ever met. {They will be referred to as M and M.} However, I worry about them. They previously lived about 90 minutes one way from the parents. M or M was running down once, maybe twice a week. We all knew it was time the parents give up their condo and move into an apartment in a retirement home, preferably close to M&M. They moved and they hate it there, it’s not Asbury, where they used to live. Asbury still holds good memories, memories of Dad driving and them having friends and doing fun things and that’s pretty much all they have to cling to right now. The memories they can pull out of their brains are where they wish they still were on this path of life. They remember nothing recent, although they say they do. Bedford, where they live is quite nice with excellent food. That is one complaint Dad had about Asbury, food was cafeteria food. This is not.

Mom has had a lump on her abdomen for 3 years. The docs said it was a hernia. Lately, it started to hurt so M took her to the Dr. Well, it’s no hernia. It’s a squamous cell cancer tumor in her abdomen. They have no clue why it’s there as it usually always presents itself as skin cancer. The lump is growing. They wanted to do surgery but Mom turns 93 Aug 1st. The surgery will kill her before the cancer does, it’s a massive recovery and she is very very weak. They chose to do immune therapy, hoping to shrink the tumor. She had one treatment and because she is incapable of using her nebulizer and meds consistently, she had a severe asthma attack which she was hospitalized for. Guess what they gave her? The same meds she is to take 2 times a day. Once discharged they hired a nurse to come twice a day to make sure they got dressed, she did her meds and they went to eat breakfast and dinner. Dad hated the nurse coming. He also refuses to allow Mom to use a walker. He thinks she looks stupid and lazy using it. He needs one also.

I decided I needed to go visit. I messaged Trace and said I wanted him to go also, it’s been a long time (years) since he has seen them. Chance was there in January. I flew to Baltimore on Friday, got there at midnight, made my way to the rental car place, rented my car, set my GPS and started driving to M and M’s house, 40 some minutes away. I got there by 2. Mark was sleeping on the chair, M heard me and got up. We chatted a bit and both went to bed.

I slept like the dead until 9 AM. When I got up Miss had already gone to the parents apartment. When she arrived she noticed the side of Mom’s face was drooping and she was slurring. Dad, sadly did not notice. M called M and told him what was going on and she was coming to get her cell and me. When they got there, I went out to greet Mom and she seemed fine, weak but talking OK. Then it happened again, another TIA. M and I looked at each other and said let’s go.

We took Mom to the hospital and checked her in. After a few hours they admitted her for observation to a room. Miss and I were with her all day long. She didn’t know what she was there for. They did a brain MRI and some heart tests. The brain MRI confirmed that she did have two TIA‘s. Her heart was OK, it showed the normal signs for the heart of a 92+ year old woman.

Dad sitting at the hospital with Mom. Quite a poignant photo.

She seemed very weak, couldn’t really feed herself, couldn’t hold the tube of the nebulizer in for 2 min let alone 10, I had to hold it for her. She could not manage to go to the bathroom alone. When I helped her pee for the first time in my life I thought back to the role reversal and her training me to use the toilet. Pretty potent shit.

She stayed on the hospital observation floor most of the time then they moved her to another floor for the last day or two. On Tuesday morning I drove to BWI @ 5 AM to pick Trace up at 6. He had flown all night to get here. We went back to M&M’s and they were both waiting for Trace. Miss was going to work that day so Trace and I went and got Dad and took him to see Nonie at the hospital.

Those of you who do not know my Mom, she was and still is a smart ass and a fireball, a red headed Irish woman. Crazy as shit but a good Mother. She has not lost the “mouth” part of her personality. (Wonder where I get it from? Look no further).

Dad, Trace and I walked in to her room. At first she didn’t recognize Trace then she said, “It’s my little shit head.” Trace smiled and laughed. She used to call him turd knocker. Close. We sat with her, I ordered her lunch and helped her eat. She was turning up her nose at everything. When she would say she wanted to go home I would remind her what the doctors said and she would give me the finger. She told me to tell them to shove it. Trace was all bug eyed, he never heard her talk like that. Off the wall. But when the nurses came she was freaking Pollyanna. I’ve not seen her like this, nor have M&M. We think it’s a product of the TIA‘s. I told her she needed to regain some strength. She asked if I wanted her to move furniture for me. She also said she could take Trace & I. WTH? Dad agreed with us (surprise, lately we do nothing right). He told her it was for her own good and that she needed to get stronger. She became a fan of Sabra Hummus (I was buying it in the cafeteria) and pretzels but she could not pick a pretzel up off of the plate to dip it. I had to dip it and hand it to her. Another damn role reversal. Later that day Dad came for dinner at M & M’s.

Dad at dinner with the two jail escapees, Missy and Trace.

Trace, Dad and I

On July 3rd they decided to move her to a Rehab facility. I’m sorry, this song was constantly on my mind. And yes, it’s now playing. RIP Amy. The rehab facility is # 2 out of 20 in the area and it’s in the same complex where they currently live. Score for us!

Mark, my hero of a brother in law, walking Mom down the hall. She is wearing her favorite sweater, one PJ got her.

Welllllll, preparing for the rehab move went like shit. She was refusing to go, said people thought she was an idiot. She yelled at Dad to do something and stick up for her. Don’t let these girls do this to me. THESE GIRLS??? Vic, you always took care of me, take care of me now. Why aren’t you saying anything Vic? I would say, Mom, it’s NOT up to Dad. It’s what the Doctor says. She yelled. “they can shove it up their a$$.” It was OMG moments, occurring every few seconds. My brain was leaking from the assault.

Finally on the 4th of July, she was moved and her flame seems to have not been extinguished. Since she is in Rehab they will not continue the immune therapy cancer meds. They said when she gets out of Rehab, they will need to re-evaluate. Freaking medical malpractice in the US is over the top. She is adamant she is not staying. She was continuing to call M&M all day saying come get me now. I’ll have you arrested. M&M’s son and wife came for 4th of July dinner. It was so awesome to see them! Mark and Eric (nephew) went to get Dad to take him from rehab back to his apartment. He let loose on them, was verbally abusive, as was Mom. They returned before dinner and my sister was brought to tears from the story. They got in a quick game of corn hole before dinner.

Trace and Sofie. Sofie has also been amazing, she has her doctorate in audiology and has been fine tuning Mom’s hearing aids.

Missy and Eric, my nephew.

My baby, Trace. I was so proud of him and how he handled the uncomfortable situations we were all thrown in to.

She may be 13 years younger than I am but she acts like me and that makes me smile.

We sat down and had a fabulous meal, ribs cooked á la Sofie.

The grill master

Just as we were finishing our meal the rehab center called and said Mom was wigging out, we needed to come. So M and I went over. Mom was sitting at the registration desk and as soon as she saw us, anger formed in her eyes. She was ready to do battle with her daughters. We took her into an unoccupied room and had a chat with her. She said she would punch us both, she said she called the police and they said nobody could hold her against her will. She then said she was going to throw a phone through a window and then shoot herself. I reassured her if she attempted any of those things they would have her strapped down to a gurney and she would not be happy. She glared at me. She yelled, she cried, she was furious. Miss and I got her calmed down, so we thought. We do believe she slept through the night.

Mom called the next morning demanding M come get her. I told my sister, no, do not go now. Wait. M & M have a tendency to go immediately when called, which is admirable on their parts but does not allow them any quality of life. Mom is OK, she is in a facility, she can’t get out. They watch over her. M & M need to step back.

M & M had plans Thursday night and Trace and I were returning my rental car and spending the night in a hotel near the airport. We all said good bye to the parents at the Rehab center. Mom seemed in an OK mood. Mark got Dad back to his apartment.

M & M were getting ready to leave and I was packing. The phone rang, it was Dad screaming at Mark. Mark handed the phone to me and Dad was yelling at me. I asked him what he wanted. He said why was he there? I told him he was at his apartment and he said that’s just great. I said, That’s good, night Dad. M & M left and the phone rang, Dad again. I answered Hi Dad, how are you. Did you have a good dinner? He said, “Where the hell is everybody? I’m here alone and I don’t know what to do.” I said, have some ice cream and watch some TV. I mean, it’s what he’s done every night for the last 10 years. He yelled, “Fine, this is just fine.” I said, Great, have a good night and hung up. I have no clue how many more times he called that night because Trace and I left.

Family portrait, Missy closed her eyes, other shots were blurry.

PJ tried to call Mom and they told him they took the phone out of her room because she called 911 FOUR TIMES! Miss said the phone is back in the room but the list of phone numbers are gone. The nurses can contact M & M if there is a medical emergency.

I’m spent. Wasted. Not sure what to think or feel. I am guilty to the core because M & M are there and I am not. I see all this as a beginning to the end. When they moved in to Bedford it was stated Independent Living may happen as long as both of them are living there. She is no longer there so we believe they will be moved to assisted living, which will put my Dad over the edge. He’s a very proud, macho Italian. 97 or not, he can’t grasp the fact he is no longer in charge.

My brother PJ is in Williamsport and does what he can to help. He will go down if they have to move to assisted living and drove to Asbury to help them move to where they now are. He and Devon (his daughter) plan to go down for the big anniversary/birthday weekend. 70 years married July 31 and Mom turns 93 August 1st. I don’t want people to think PJ does not help, he does more than I do and is always ready to be there when M&M need him.

As my islander friend says: Once a man. Twice a child. Never has this been more evident.

I came across 55 videos done by Joey Daley about his Mother, Molly Daley. They started Molly’s Movement. If you or anyone you know suffers from this dreaded disease, watch these videos. Molly has recently passed from Lewy Body Dementia, she was 67. There is also a FB page called Mother and Son’s journey through dementia.

Please encourage people to talk about this. The videos made me cry my eyes out but I learned so much. The posts on the FB page are gripping, sometimes precisely what we are experiencing. It’s always good to know you are not alone, that so many others suffer. Some with no family to support them or to be there in a time of need.

Another good read is; https://goodmenproject.com/families/mollys-movement-a-mother-and-son-story-worth-following-dg/

Thank you for reading along. Dementia is a horrible disease. I am fortunate that my parents both made it to their 90’s before this struck and took their minds.

 

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My Mother told me, “Don’t get old.”

wine8/30/2016 I’ve returned from my trip to the US. I was really happy to get back to my little island and my daily routine but every time I have to say good bye to my folks, it just keeps getting harder. They are 95 and 91. Time is of the essence.

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At Appplebee’s

This visit wasn’t a hang out and relax one, I was trying to help my sister, brother-in-law and brother prepare my folks to move closer to my sister Missy.

I arrived in BWI at midnight and made my way to the rental car place. I knew my cell was dead but I had my charger in my carry-on so I was good to go. I got my rental and left the lot, but my cell wouldn’t charge. I went across the street and sat in a vacant parking lot screwing with my phone. I needed my GPS to get to my sister’s house. I could get it to come on but it wouldn’t start to charge, and then it shut off. After about 30 minutes of this crap, I was ready to cry. I was hungry and tired and wanted to be somewhere so I could relax. I decided to go back to the rental car garage and go inside the building and charge my phone. I got the wall charger out of my bag and went inside. I told the girl at the car rental desk what was going on and she said to have a seat and charge my phone. About 5 min. after I went in there, she said, we have car chargers here for sale, maybe that would work for you. I decided to buy one and got my money out and she said she had an extra, I could have it. She made my night. I was finally off to my sister’s house. I arrived there around 2 AM, meaning I had been up 20 hours so far and was running on fumes.

Missy and her husband Mark and I stayed up another 2 hours talking about the situation with Mom and Dad and some of the obstacles they and my brother, P.J., have gone through trying to make this move happen. I feel like a schmuck because I live so far away. Once they move they will be 30 minutes from BWI, not 90 and 4 minutes from my sister, not 90, closer for P.J. also. The move is good for various reasons and I am really happy they are doing it. They will still be living independently but in an apartment, not a condo. There will be someone to clean weekly and change their bedding. The dining hall serves excellent meals and it is in the same building that they live in. Convenience all around.

I stayed with my sister Sat and Saturday night too. I don’t get to see her and Mark much so it was nice to hang out with them. I left Missy’s on Sunday morning and went to Ikea and then to Mom and Dad’s.

My job while visiting my folks was to help (push, coerce, trick) my Mother to part with all the shit she had stored in that condo. THIS WAS VERY HARD. There were 3 expired cans of cheese, 2013. A single serving apple pie on the top shelf of a cupboard from 2012. This was the tip of the iceberg. She had enough Q-tips to clean the ears of each child on the island of Roatan. She did not want to part with her waste cans, she had 7, not counting the big one in the kitchen and the 2 outside the kitchen door in the garage or the HUGE one outside the garage door. I went through all of her cupboards and boxed stuff to get rid of and I threw out trash bags full of dead food, broken scissors, tie bars and cuff links. Jars of nail polish that were hardened in the jar?Enough, no more about the amounts of stuff but the hard time Mom was having parting with it was a very new, different reaction to have to deal with. Like, “really Mom, you want these 11 empty pill bottles in case you travel. Where are you going?” It truly was hard for her to let go of so many things. Usually my Dad is all about throwing crap out. He threw out so much of my stuff, so much of everyone’s stuff when we were little. He never liked clutter; however he has been living in it for some time.

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Cleaning out the computer room

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And I caught my Dad on this stool, I got him off of there quickly and finished the job myself. It’s really difficult for him because he was always in charge of things, everything was always under control when he was around.

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This is how hot it was when I arrived in the Solomon’s

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Dad found a box of these old hair clips and a few of the pins you stuck through the curlers to keep them in place.

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Remember these things? We stuck them into the different colored/sized curlers and actually slept with them on our heads. I remember having dents on my forehead from these pins.

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Found this old pic, I think it was from 1958, Me, my brother and cousin, on the beach in Florida.

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Mom’s idea of tying one on. O’Doull’s through a straw. UGH.

Mom has knee trouble and she just broke her wrist so she has trouble getting out of chairs and out of a car. Every time she did either she would look at me and say,”Debbie-Leigh, don’t get old.” It was really sad because I am getting old, not a damn thing I can do  about it and she doesn’t seem to be enjoying her golden years at all. I sure hope once they get settled in their new place things will be easier and the fact that they are up in years won’t be so evident. Dad is going to stop driving, which breaks my heart and makes me happy. I know it’s his independence but I also know mentally he is a danger on the road to himself and to others. So bittersweet. So many thoughts in this old muddled brain of mine. I find myself trying to exercise in the pool more and to be more active, with Mom’s constant warning floating on the sidelines of my brain.

Mom and I had some disagreements about things to keep and things to donate and things to trash. Keeping was the easy part. Throwing out spices she has not used for 5 years was traumatic. Dad and I had an argument also, he was being very stubborn, changing his mind rapidly and being nasty about it. I feel bad that we argued but it sort of cleared the air and got him on my side disposing of things. We went from keeping 25 photos (wall art) to about 8. Dad gave them to the neighbor who uses the frames immediately, that way Mom couldn’t change her mind. We were donating things ASAP because she was developing the habit of going out in the garage and looking through the boxes of crap we had just thrown out. I had to rein her back in to the task at hand many times.

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I told her to get rid of her LARGE sewing kit. She doesn’t sew, never has. She finally agreed, except she pulled the pinking shears out because they were expensive. Then she threw out all of these flyers that came in the mail only to go back through the trash can looking for one because it had a sewing kit for sale. I died.

Mom wanted a smaller TV stand but didn’t want to spend much money so I suggested Walmart. She and I went and looked at them and she saw one she liked, but they didn’t have it in the store. We went home and I looked online and saw that the store over the bridge had it. We went out to eat at Olive Garden that night but before that we wanted Dad to look at the TV stand. We got to Walmart and he said he wasn’t going in. I said if you think I’m lugging this thing out here to have you say you don’t like it, you’re wrong. Now get out, we’re going to look at it. I had him push the cart so he had something to lean on. We went back and I found it on a lower shelf. Now these things are made out of particle board and weigh a TON. I got it off the shelf and dropped it on the floor. Great, now I had to get it back up and in the cart. Dad wanted to help, I said no way. I asked some young guy to help me load it and he was very nice and put it in the cart. After we paid we asked for help to get it in the car. We had dinner @ Olive Garden and then went home. I was going to get the TV stand out of the back of Mom and Dad’s mini van for them.  Mom was insisting they had a cart to move it but she didn’t know where it was. Dad said the neighbor had it. Mom said, “go get it, we need it.” I have the 3000# piece balanced, ready to slide onto a cart and wheel into the garage when Dad rounds the corner with a walker. A flipping walker. I said, “what the hell is that? ” “It’s a cart.” I said “like hell it is, it’s a walker. How the hell am I supposed to move this damn thing with a walker?” By then I was feeling very Charlie Chaplinesque and had to laugh at the situation. Here I am moving a TV stand that weighs as much as my car with a freaking fold up walker. We’re all insane. I got the damn thing balanced on the walker and held the other end and wheeled it over the lip into their garage. When I went to get it off the walker (am I really saying this shit?) I dropped it on the concrete floor, I tried to stop it from hitting the ground and it landed on my middle finger. My Mom yelled, “Oh my God I hope that stand didn’t break.” All the while my finger is still under the 3000# box.

I drank a shit ton that night.

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My beloved wine

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It came from a Black Box, not a green Bandit box and I have to say, this was pretty decent wine.

The next day Mom and I were going somewhere and as we’re walking out of the house she says to me, “I can see your breasts.” I said “no you can’t.” She said “yes I can and I can see a little of the lace on your bra.” So I pulled my V neck Hurley T down to my navel and asked if that was better. She dropped it.

I took a walk down to the pier one afternoon, it was so hot out and there was barely a ripple of a breeze.

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The Patuxent River.

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Osprey nest

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A view up, the white building is apartments, dining hall and gym of Asbury, the place they have lived for 11 years.

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Mom melts her ice cream in the microwave so she can dish it out easier.

My sister and I were talking one evening while I was at Mom and Dad’s and she told me a few week ago she took them up to Prince Frederick (about 30 min N) for Dad’s check up. They stopped at Applebee’s on the way home for lunch. Mom said she was cold and Missy said she would run out to the car and grab a sweater. Now Missy moves fast just like I do, so she was back in a flash. And they were gone. Mom and Dad weren’t there. WTH? She looked around and found them sitting elsewhere AT A TABLE FOR TWO. She asked what they were doing and Dad said he didn’t like that spot so they moved and Missy said, “but you moved to a table for two, what about me?” I was dying laughing when she told me the story and she was laughing so hard her dog and cat came running to see what was wrong.

After many days of packing and talking in the evening (through Law and Order, which they watch 4 or 5 shows in a row but the TV is on mute most of the time but they act like they’re the world’s best lip readers and they knew what was going on the whole time the TV was on mute)  {I was so confused} we decided to go to Applebee’s to eat but I told them I wasn’t leaving for any jackets or anything and if I went to the bathroom, they had to stay in the same place until I returned. The Olive Garden and Applebee’s are their favorite places to eat. Not mine.

Obviously I have re-located and not been told. Mom told everyone, this is my daughter Debbie-Leigh, she lives on an island in the Pacific. I say Caribbean. Next person, same spiel, I say Caribbean. I continue to say Caribbean every time I am introduced as the daughter who lives on an island in the Pacific. Geography was not one of her favorite classes.

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I was freezing in their house. I am not a fan of A/C and was really happy I had gotten Bill new socks. I even wore them to bed. In fact, I pulled the floor vent out of the floor in the guest bed room, closed it, put it back and piled pillows on top to keep the cold air away.

My time to head home was drawing near. I was really missing the dogs, it’s too bad they don’t understand words and actually knew I was returning, as opposed to deserting them for the rest of their lives. I couldn’t wait to get their wet sloppy kisses. I didn’t go overboard shopping for them, buying mostly NylaBone toys and a few more stainless food bowls.

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Parting shot before I got in my car and cried half the way to BWI.

My trip home took 24 hours. I left Mom and Dad’s at 10 AM and drove to Baltimore, waited several hours there, then to Denver where my plane landed at 6:01 and the flight I was getting on boarded at 5:55. I had to run again. From Denver I flew  to  Los Angeles, then had to find the Avianca terminal. Once there, they changed gates, I got to the last gate and was sitting there and they called my name. I went up to the counter and they asked about a return ticket to the states, I said, no, I live in Roatan. They asked for my residency card (which I am still waiting for) so I gave them my Constancia that says I am a resident of Honduras and they thanked me and that was it. It was interesting. I was the only white girl on a plane full of Central American’s from LAX to San Salvador. I was bummed because I’m Premier Gold on UAL and had to fly Avianca to San Salvador in row 30D. Turned out the plane was empty and I had all 3 leather seats to myself as well as a USB port and disco lighting. Avianca was a cool flight.

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The whole darn row to myself.

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Mood lighting

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Leaving LAX, headed for El Salvador.

The El Salvador airport was spotlessly clean and vacant. I sat alone for several hours at my gate waiting to board my flight to Roatan. Once again, the plane was pretty empty. There was a couple across the row from me on the way to Roatan. The girl sounded like a drunk Daffy Duck and she was not using her inside voice. They were pointing out Toxic Hole and West Bay and I’m all, dude, that’s NOT even Roatan. I didn’t say anything, I just continued to allow them to be delusional.

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Cool shot of the mountains through the scratched window on my way to RTB.

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HAH! On Roatan, the most popular beer is Salva Vida, or life saver.

I always get teary eyed returning to the rock and this time was no different. My flight arrived at almost 10 AM, making for a 24 hour trip for me. Bill met me, we ran a few errands (still trying to get my replacement residency card) then made our way home, I was so anxious to see the dogs.

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They were all on the porch and they saw me coming.

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It was a glorious reunion, I love these guys so much.

I am thrilled to be back on the rock, I spent a few days organizing all the stuff I bought, getting groceries, all the normal stuff. We have some friends staying here so I had to get the downstairs cleaned up also, Carla came and did that. I’ve spent a few days poolside, today we delivered some soccer uniforms and hopefully I’ll catch up with my friends this weekend.

It’s always nice to visit the US and see my family but I can honestly say I prefer island life to living stateside.

I’m looking forward to getting underwater again and playing with my case for my dive camera, it will allow me to go deeper and take photos, Thursday will be the trial day for it so stay tuned, lots of island info and fun shots returning soon.