#lbdstories

Everyday you’re changing and you’re making me change. For the worst. Your memory is diminishing away. Every little action, every little thing it frustrates me not at you but how you have become because of this disease.

I hate this, why did it happen to you? Why did it have to happen to our family? What did we do to go through this?

He’s borderline diabetic and 2 days ago he said he felt like his sugar was low so he asked for chocolate. I gave him a whole regular size kit kat bar. By the time my mom came home which was maybe an hour later my mom decided to check his sugar because he was saying he was so hungry that he couldnt see me. This was before him asking about chocolate. I habe been so tired. I was mentally and and physically tired. And I have the worst allergies lately that I keep taking medications and its making me so fatigued.

Anyways his sugar dropped so fast that it couldnt even give an amount. Thats my fault, if I didnt take a nap I could’ve gave him more food. It’s so hard to keep an eye on him and know that this will happen again. I dont get it:

Also, one of my friend passed away last Sunday. I wasn’t close to him but I still considered him as a friend. He did nothing but was sweet to me. He’s a nice person and he is one of my bestfriends love ofher life. She has loved him for over 14 years.

The last time I actually saw him after 10 yrs was last November. We went to the zoo. He was so happy with my bestfriend. I saw the way he looked at her like she was the only person with him. I loved them being together. I rooted for him bc it was a love story that finally took a leap of faith.

Hearing he pssed away has shocked me. Like I said I am not close to him but I feel the pain. My heart aches for his family and for my bestfriend. I cannot imagine what they are going through. He’s so young, he was bright, he’s so funny and caring.

How do you move forward when this happens? Never a minute goes by that he’s not in my thought. But I see the outpour support of everyone on his gofundme page and it’s incredible to see how much of an impct he has made to everyone he made. I see nothing but great memories and words.

I hope he feels the same. May you rest in peace now my friend, you are no longer in pain and suffering. You don’t need to worry everything will be ok. Know that everyone that knows you, loves you and you will always be in our hearts.

I am thankful for knowing you and was able to catch for that moment last year. I wished there were more days where we could’ve done a double date or whatever.

Take care friend, RIP.

J.E.S Jr

He’s acting more of more of someone that needs be watched and directed or cued to do things. He’s still arguing with me, I am trying to keep my distance but he keeps asking questions and whatever comes out of my mouth he doesn’t like hearing and starts getting mad.

I am still in disbelief that this happened to him. It’s almost been a year and I feel like theres no clarity to how the human brain works or more how his brain is working, now.

My stress levels have been high, I am always depressed. My thoughts keep running around, I am feeling overwhelmed. I tend to keep myself busy and thank goodness my business is helping me with that.

I basically fired the company that provides a caregiver that comes by to help. We did not have a problem with the caregiver it was more of the scheduling department who is very unorganzied, lack of communication. I shouldn’t be stressing if someone is coming or not and should not be that person making that call to check if they’re coming or not. I shouldve been notified the day prior or morning of but nothing. So that pissed me off.

I am dealing with my daughters IEP transition too. Basically, her therapist whose assigned to us I am not happy the way things were approached and conversations were made with the district speech therapist. I voiced out. I’ve been so irritated.

When my mom got home from work around 5pm he told her that he went to work as an inspector.

My dad worked in electronics as a QA inspector for so long but never really kept a job when his first when into bankruptcy and that was back in 2012. He was out of for a bit on and off and decided to retire early.

Anyways that is what he told my mom. You can see from the mannerisms of my dad is different. The way he wears his clothes, still shuffling his feet. Some days he seems like nothing is wrong but most of the time he’s not all there. He stares off blankly lots of time.

He talks to my daughter the same way he did before but the next minute he starts talking about something that doesn’t make any sense.

His vision is all sorts of messed up, hes creating shadows thinking they’re real people. My daughters stuff animals, he thinks they’re real animals.

Sometimes I have to do a reality check. Most of the time it turns into arguements and him saying that I don’t believe him and we are ganging up on him as one.

Around 10PM he told my mom that he was looking for his check, paycheck because he got paid and my mom works here part time (at the house. My mom told him he might be mistakenly thinking from the past when my mom did have a second job part time, no he was adament that her part time is at the house.

He had an appt today to get his COVID vaccine. 2:30 is the appointment and 2:10 we were still at home. Everytime we go out its an arguement because he doesnt understand we need to go get going.

I couldnt take it. It makes me mad and stressed so I needed to throw my daughters toy across the room and start yelling. It felt good to finally release some anger out. He doesnt get it.

When my dad wasnt sick he would get mad at us for taking long to leave or when we arrive to wherever, it hasnt been 30 mins of being there he gets mad bc he wants to leave. I needed to remind him that.

Everything today just pissed me off. We all went to Costco. I have a small SUV. Groceries, wheelchair and carseat. Not everything fit. I kept saying we needed a bigger car that this isnt helping. Had to leave my husband at Costco to drop stuff at home and come back. Luckily, it was 10 mins away- side roads.

Came home, sundowners getting worst. He is worried about his freaking car. He loves his car but he doesnt understand that he cant drive anymore. Or he thinks his car got stolen, got crashed into, someone stole it..

I dont fucking get it.

Why? Why? Why?

Why us? Why him?

A few days everything can seem like it’s getting better and the next day it goes back to being stressful. I can seem strong but inside i am hiding all the pain that each day keeps stacking up.

I still question- why and how did this happen. A year ago this was not how our life was. Why? Why did it have to happen to my dad?

I don’t recognize my dad that much anymore- to me he is a stranger sometimes i recognize how he was the way he treats my daughter. He seems always happy seeing her.

His hallucinations are more frequent- basically the whole day. Hes irritable and angry. Always having accidents and very confused.

I feel sad that this has happened to my dad. He’s only 67 and he gets Lewy Body Dementia with Parkinson. How does person end up getting this? Why did it have to happen to my dad?

My relationship with my dad has gone through a lot. When I was younger I was attached to my dad to the hip. I was always with him. Reaching my teenage years i was drifting away bc I was getting older. I wanted to do things and be with friends but my family was strict. As I got out of high school and was working and such my relationship with him gotten better. 2016-mid2020 it was great.

He loves my daughter. He was so excited when we first told him that I was pregnant. When she came out he was excited, at first he was cautious bc she was so tiny but once she got mobile he was the full time babysitter and he bonded with her. He kept telling her when she got little older him and my daughter would go to Mcdonalds and eat chicken nuggets together. Well they were able to do that at home. I remember he would bring food home and he would be so happy to see her eat the food he bought or the soup he made. He always wanted to hang out with her and play with her. They would take naps together before. Whenever she cried he would always get her and be happy that she stops crying.

Now all that changed. I know my daughter knows something is wrong with my dad but I feel like she doesn’t fully understand what is wrong with him. My daughter would love to hold my dads hand, run to him and hug him and give him kisses on the cheek. It makes me really sad to see this because my daughter is so young to fully understand what is happening. I forgive my dad for the past few months that has been happening but i do try to avoid him so no yelling or arguements happen. It just doesn’t get better. I wish it was easier for my dad and he did not have to deal with all this. He was so strong before and just in a matter of months he can’t even take care of himself.

We are thinking of putting him on a SNF because at this point it looks like it’s starting to need 24 hr care. For his safety importantly.