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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Leaving the rock

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07/16/2015  When I posted the previous blog, I said that when I’m working at the airport, I welcome people to the island with a smile and say, “Welcome to Roatan.” Later that day I got a friend request from someone that I didn’t know. I vaguely remember getting a WordPress message that someone new was following my blog so I looked at the name and at the friend request and realized it was the same person, so I accepted her friend request. I then looked at Julies FB page and came across this poem written by her husband Robby Bennett and posted on June 25th. {posted with his permission}

It’s called, appropriately:

“Welcome to Roatan”

Ten years they spent dreaming and designing their plans
Out the door they walked, their entire existence in their hands
Another world they both longed to learn and explore
A new life they sought on some distant Caribbean shore.

The sun was just starting to show its light
Soon they’d be catching their dream flight
Anxious and nervous they stepped out of the cab
Their bags taken under arm as he pays their tab.

Checked in and passed security, they waited to board
Butterflies in their stomachs as the engine roared
The plane lifts up and into the sky they did roam
Another world they would both soon call home.

Nothing more than clouds and ocean below
The plane flew them where they wanted to go
Tears in their eyes as they glanced over the wing
As off in the distance their island could be seen.

They dropped through the clouds as the plane flew over the beach
Touching down as the engine slowed and the tires began to screech
The captain came over the speakers “Welcome to Roatan”
Ten years in the making they finally realized their plan.

Smiling faces greeted them as they exited the plane
Immediately they knew their plan was not in vain
No more worries or keeping up with the Joneses
A much simpler life with daily hammock dozes.

Listening to the melody of the waves and trade winds
Barbecuing the days’ catch or making new friends
Laughing and loving, living life like it was meant to be
Or sitting quietly, just the two of them down by the sea.

Lazy days, doing nothing or diving on the reef
An unreal world that seems totally make belief
But it’s their new life, exactly as they planned
Far away from old troubles, “Welcome to Roatan”.

Isn’t that an awesome poem? He should be marketing moving to Roatan, he expresses the feeling so perfectly.

I have since been in contact with Julie and she can’t believe I’m a greeter a the airport and that I say that to people. I look forward to meeting them!

I am never thrilled leaving the rock, really not. This time I was excited for the opportunity to see my parents and sister and to do some shopping but was not mentally prepared for what life in the US is all about.

The shoreline of Roatan is so gorgeous.

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The small island on the left with a dock is owned by my friend Milesse. It is a divers paradise, check out Barefoot Cay.

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French Harbor, where I lived when I was down here alone for 4 months.

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Little French Key (r) and Big French Key are the two islands in the bottom center.

I had a nice trip to the states, it was interesting to say the least;  I was flying on the day United’s computers crashed. again. My flight from here was 2 hours late making the connection in Houston next to impossible. We were landing at 6:45, my flight departed at 7:05. Fortunately we have Global and that allows me preferential treatment as opposed to waiting in the formidable lines for immigration. I cleared it in mere minutes and ran to the baggage carousel. I found out that my connecting flight to Baltimore was also delayed until 8:20. Hmmm, it’s possible I’ll make it. We are Premier Gold with United which means your bags get offloaded first (except in Roatan where they do not understand the word written on the tag that says PRIORITY) However in Houston I waited for 40 minutes; my bags did come out first after the four flights that came in before we did. The line through customs was at least 250 people long, no lie. Off to the right I saw a sign that said GLOBAL EXIT ONLY so I ran like hell with my cart with 2 suitcases on it to that line and there were 4 people in front of me. I re checked my bags and ran up the escalator to security. There was no Premier line, dammit!! I got in the regular line and when it was my turn to get in the full body scanner,  just as I stepped in the girl said, “Miss, can you please step out, WE HAVE TO RECALIBRATE THE MACHINE.” My brain was screaming, WHAT?? YOU NEED TO DO THIS NOW? I HAVE 7 fu*&%ng MINUTES. It took a few minutes to do, I went through, gathered my belongings and started to walk as fast as possible which wasn’t fast enough. I kicked off my flip flops, grabbed them and ran to the gate. I asked the ladies there if I made it and they said barely. Once I got on the plane there was a girl in MY SEAT. Oh no you don’t.. I said, you are in my seat, three times before she looked up from her phone. She said, I’m in 8F, I said, good because I am in 8A and you are in my seat. There was already someone in 8F and the 2 people in 8D and E were both ticketed to sit in the same seat, 8D. The girl in my seat said you can just sit in 8F and I said NO, I want my seat. Dammit to hell..They finally got that straightened out and I was in my seat and off to Baltimore, not arriving until 12:30 AM. Only 1 suitcase arrived, thankfully it was the full and not the empty one. I went in to the United agent who was super sweet and helpful. She looked it up and said, “it’s in Houston, TSA confiscated it.” WHAT? It’s empty except for an empty Samsonite nylon duffle bag.  She assumed that’s why it was taken and assured me it would be delivered to me in the Solomons on Friday. Luckily it was not a big deal to me, one less bag to haul for now.

My plan was to get a good nights sleep and then my friend from decades ago Bill Gross, who happened to be in MD at the same time (he is currently traveling the US) was going to pick me up for breakfast. I got to my hotel after 1 and crashed. I told Bill that I would call when I woke up and then he could come get me. I was aroused from the sleep of the dead at 8:30 by my cell phone ringing. I jumped out of bed and grabbed it, knowing it would be Bill. I was still mentally in a different time zone and wondered WTH he was calling so early, until I glanced at the clock. Holy shit, 8:30. I asked him how long it would take him to get here and he said, “I’m here.” Alrighty then, quickest shower in history, reloaded my suitcase and was out the door. We went to Crackerbarrel for breakfast and to rehash the many years that have passed. Funny, didn’t seem like that long since I had last seen him.

We spent a few hours chatting then he took me to BWI car rental where I picked up my illegally?? driven car for the week. Since my parents live 90 min. from BWI, I have no other options than to rent a car and use my credit card as the only insurance. The rental company never asked if I had insurance either. I do however have a legal US drivers license.

From there I drove to the Potomac Mill outlet in Woodbridge, VA. I had my heart set on a Vera Bradley backpack.

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The outlet mall is ginormous, I had a difficult time finding the store. Once I stepped in the mall I was overcome by the sights and sounds and people, swarms of them, everyfreakingwhere.

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I was elated when I saw the Vera Bradley sign and almost ran to the store. I was overcome with all the colors and patterns and sizes and styles and zippers and choices. The only pack I could decide on was black and that defeated the whole purpose, so I left. It was too much for me.

From there I drove back up towards Baltimore and then down to my parents. I was so glad to get out of the car! When I walked in their house they invited me into their “warehouse.” My room filled with boxes. All Amazon.com.

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This isn’t all of it, things were delivered for several days.

Just a few pics from Asbury in the Solomon’s, MD. The grounds are nicely maintained but that’s about the only positive thing I can say abut the “retirement village” they are living in.

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their back yard

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Their sun porch where they spend most of the time.

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Osprey nest, Solomon’s Pier

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Mama Osprey

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Guarding the baby birds

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Asbury Solomon’s buildings

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On the Patuxent River

Not going to go into the reasons we are displeased with the place they live, it’s too depressing. BUT, on the flip side, my parents are doing quite well considering Mom turns 90 on August 1st and Dad is 94. They both still drive, not a great distance but they are mobile. It’s always an adventure going to visit them and this time was no different. I find it exhausting changing your daily lifestyle for a week, but worth it in the end.

More on that and my revelation that I had while in Marshall’s in Lexington, Md. It was kind of an epic event for this shopper girl. Stay tuned for the rest of the story.