Moving Forward and our Story Part 1

After deciding on a place, our next steps are to put money down on the assisted living facility that we like and then my father will have to meet with the nurse at the facility.  After that we will need to get a recommendation from his physician that assisted living will be a good fit for him.

I started on this journey about a month and a half ago after a wicked situation I learned about involving my grandfather waking my dad up, pulling him out of bed and screaming at him at 1:00 in the morning. Talk about abuse! It hadn't been my first time calling adult protection, and he had already been on their radar but this time my siblings and I felt that it was time for us to step in. We had been misled that my grandfather was taking wonderful care of my father, when in fact throughout the last few weeks we have found quite the opposite was taking place. My dad had total freedom and was getting himself into trouble all over the place.

Now, I will introduce my siblings and I and let you know more about the situation. I am Emily. I am 26, have a beautiful home with my loving and very smart boyfriend, and am very caring and compassionate. My brother is 22, he has a wife and a baby on the way. My sister is 16 and is a junior in high school. She lives with our mother. My mother is a wonderful woman who divorced my father because his actions were erratic and my sister did not feel safe around him. We all love my father very much and work hard to be there for him. Everyone, including my mother, work hard to get him the best care and work to entertain him.

About two and a half years ago my father began acting very strange. We had reports of him telling random women he loved them, getting in trouble at work, driving erratically, poor bladder control, and many other things. We brought him to a local clinic and started the initial testing for factors that we knew could cause these problems in a 50 year old male. He tested negative for diabetes, so we thought harder and he ultimately tested negative for things like syphilis. Not being able to find any answers, we went to the Mayo in Rochester, MN. After many appointments, we found out my father had fungus growing in his sinus cavity and that that could have been causing all of his issues. After surgery, it was clear he was acting weirder than ever. He continued care at the mayo where one day he got a horrible diagnosis of FTD. We were in shock and after reading about FTD it didn't seem right to us at the time, now we know it is the correct diagnosis.

I moved out shortly after the diagnosis into my new home and started my own life, my mother continued to work full time and try to babysit my father (a chore I had shared with her while living with them). I could tell things were bad at home and that my siblings were starting to be scared of my father and my mom was stressed beyond imagine. Then one horrible day, my father asked my mom's friend out on a date in front of her and she kicked him out. She thought of taking him back very quickly but couldn't because my sister expressed her fear of my father. That is where things started to get good for him, but also bad for him.

My father moved into a home owned by my grandfather and also lived in by my uncle and was continue with the divorce. About a month after him moving out, he landed in the ER after collapsing at work. We learned later it was because he had not ate almost anything for over a month. He ended up staying the night because he developed a different issue that caused the collapse. I knew this was all somehow related to the weird behavior and so I started to advocate and ask questions about the FTD. He ended up getting discharged but I had advocated enough to get him started with a neurologist. This was also the horrible day I had to explain to my father he wasn't going to be aloud to work anymore. He cried and cried, it was horrible. We had meetings at the union hall to explain his behavior and learned that many of his co-workers we covering for him when he would make mistakes. I thank these men and women because they did a very kind thing for him and for our family.

Somewhere in the divorce he stopped talking to his kids, which I later learned was a result of comments made by my grandfather. During this time my uncle moved out and got a new home after. After the divorce was over, we would occasionally go out with our father and would see a drastic reduction in his mental function and weight. This is how he originally got the adult protection worker (I would call on him). But after the last incident, I went to his meeting with her and that is when things started to change.

I am getting ready to relax for the night and will share the second part of this long story tomorrow. This is a painful thing to talk about so it takes some time to get through it and process it well.

To all those who have a parent with Frontal Temporal Dementia, I am sure you have a story too, please feel free to share.

Emily

Days we don't work hard on the living situation

I call the days I focus on myself me days. Me days are important, they allow me to take care of my mental health and not to have my brain explode and also let me have a break.

On these days I typically monitor my dad's Internet activity and watch his emails. I will also call him once in the day to check on him.

I also found out that our contact for assisted living is out today so hopefully I will hear back from her soon.

Sorry today is going to be such a short post. Relax days don't end up having much information to pass on.

Emily

Today was absolutely mentally draining. We went through the process of touring all the assisted living facilities in our area and also the memory care facilities at those facilities. I was very impressed with them all but I think we have found the best place for my father now. 

Our next step is to go through an assessment intake process at the place we have chosen and get a letter recommending assisted living from his neurologist. The emotionally draining part comes from the unknown. The part where we hope and pray that he makes it through the assessment intake and is welcomed as a great part of the community that we have chosen for him. 

I also found out some really sad things today that bugged me very strongly on an emotional level. I read that most with FTD die not from FTD but rather from pneumonia. I doubt this will  end up being the case with my father as he is in the group that will most likely develop ALS with their FTD. I think about his future a lot because I want it to be the best it can. I also like for him to be part of the decision making that regards his future. We have already made decisions about where he will live out his final times and this gives me some comfort because I know he got to be part of that decision. 

Well I am exhausted and it is very late. I will be posting more about the specifics of FTD in upcoming posts. 

Emily

Technology

Technology has been our biggest struggle lately. I found out my father was on 21 yes, 21 dating websites. I also found out he had been scammed by many people. It was at this point we starting looking into ways to control his online activities.

We started by cleaning up his emails... this was very helpful! 
We created a monitored GMail account and added it to all of his computers! This works well. 
We added parental controls to his kindle fire... working well.
Removed safari and added chrome to his iPhone. Not sure about this yet.
Forward all his email to GMail with very heavy spam filters. Very helpful.
Block him from making purchases on the apple network and kindle. This is financially helpful. 

I also have access to all of his emails and websites now. This is extremely helpful.

This is just the start, I am aggressively monitoring my father to ensure he is not scammed again.

My father was initially diagnosed with frontal temporal dementia a little less than a year ago. Since that initial diagnosis my life and the life of those around my father have changed dramatically.

I am creating this blog as a way to share our struggles, successes and adventures with others. My goal is that others can take some wisdom away from the hard work our family is doing and that others can learn more about what frontal temporal dementia is. I also hope that others will be able to learn the things that don't work because, trust me, I know many of those.