New Chapter

I haven't written in a while. Mainly because my mind was in a bad place and although I wanted to share, I didn't think a lot of it was appropriate. I have angry feelings towards some of my family, but airing those in a public forum where they don't get to tell their side, it's fair. There has also been all sorts of mixed emotions, feeling, and thoughts that I didn't know how to express. This is definitely the hardest thing I've gone through in this life so far and I would never wish it on my worst enemy. I have continued with my positive thinking challenge and so far it's been going great! Things in my life are changing for the better.

I quit my job!!!! And I start the new on on Friday. I honestly can't wait. I feel like it is the start of a whole new chapter of my life. A more grown up chapter. A more ambitious chapter. A chapter without my dad :( but that is ok. It's proving that I'm surviving the torture that is his disease. 

I've also decided that I'm going to start training for a marathon and leave other things, personal things, in fate's hands. I decided that if I'm not a little selfish now and if I don't start living my life for me, then I'm going to regret this period in my life. And when my time comes to an end, I want to make sure I don't have any regrets. So I've started running and training again... I've run 5 days in a row for the first time in probably over a year!! It felt great! It felt like an accomplishment! 

It's amazing how when you decide that you are going to have a new outlook, things really start changing and start changing quickly!!  More to good things and fun things to come. And maybe I'll actually start posting pictures :)

Day 2 of Positive Thinking and Positive Writing

I read an article yesterday that stated positive thinking has a considerable number of beneficial side effects. Part of my New Year's resolutions is to make 2014 a better year. I figured the best way to do this would be to increase my positive thinking. According to the article that I read there were 3 ways to increase positive thinking and one way was through writing. So yesterday I started working towards being more positive by writing about my wedding. Today I thought I would write about all of the ways that I'm lucky and happy.

I have a great number of friends and family who love me unconditionally. I cherish each one of the relationships I've built in the past years. I keep people close who are each so amazing in their own way. I feel very lucky to have the friends that I have. I love my running friends! I don't know where I would be without them. I'm uncomfortable to have the spotlight on me or to have people take care of me, but my running friends do just that. The listen to me vent and have been a shoulder to cry on during the trying times of the year. I have built a routine for several days of the week that involve them and I love it!!

I have amazing dogs. They each have such a great personality. They make each day better. I laugh so much with them around.

I have great health! I work to take care of myself and eat healthy for the most part… except for the occasional cupcake. It's been a while since the last time I was truly ill. I'm able to run, swim, and bike to my heart's content.

I have an fantastic husband!! He takes care of my but doesn't overwhelm me. He is my best friend and my life is better since he is in it.

So I'm probably not the best writer, but maybe I'll grow as I continue to write. If you are still reading this, hopefully I'm not boring you too much as I take this personal journey. Thank you and I hope that your 2014 will be as good as mine is going to be :)

New Outlook for the New Year

It's been a while since I've posted to my blog. I've been apprehensive about doing so. I am so angry about dementia but I also know that having negative thoughts, even though warranted, are not healthy. I've also been apprehensive about writing about what I'm go through because it may not paint some of my family in the best light. Even though it would be nice to discuss how the family dynamics have changed and what it is like to experience that, it's not fair to my family. All I can say about family is it's tough. Extremely tough. We all have different personalities and handle stress and grief in different ways. Trying to navigate that while getting things accomplished is very hard.

As far as my search for an Assisted Living Facility for my Grandma, I found two facilities that I really like for her. Unfortunately, her Dr. talked her out of moving for the time being. And she is not sure she is ready to make the move. My mom thinks that my Grandma is worried that she'll move down here and then I'll never talk or visit to her. No matter how many times I tell her the opposite would happen. Oh well... Maybe she'll change her mind one day. The facilities are really much more affordable down here.

So since the last time I wrote, Ben and I got married. It is one of my most favorite days. We had a beautiful ceremony overlooking the beach and it was just us. It was perfect and I couldn't imagine doing anything different. After we exchanged our vows we had pictures taken. The pictures are great!! It has us on the beach with the sun setting in the background. Ben and I couldn't have wished for better weather. Everything just worked out perfectly!! Afterwards we drove down the beach to the Don Cesar and had a fabulous dinner! Our room at the Don overlooked the gulf and we fell asleep listening to the sounds of the water. It was the perfect way to bring 2013 to a close, on a happy note :)

This year has been challenging. I don't regret anything from it. Of course I wish my dad wasn't sick but on the other hand, it's our life experiences that mold the people that we become. Yes, it is horrible and there are moments where I don't think it's fair. At the same time I'm learning about a strength that I possess that is much stronger than I could have imagined. I choose whether I'm sad or depressed or happy. I choose to be happy. There is really no benefit gained in dwelling on all the sadness around me. There are so many things about my life that are great!! I miss my dad, but I'm excited about what my future holds. I'm excited to start this next chapter of my life, with my husband at my side :)

What I look for in an Assisted Living Facility...

After a fantastic and relaxing weekend in Philly, I came back and continued my quest to find my Grandma an Assisted Living Facility. I took another tour a couple of days ago and thought maybe I should right about what I have been looking for. 

Ultimately my Grandma is going to be making the decision, but due to her inability to travel and visit a bunch of different facilities, I thought I would go around and make the first pass. In a previous post, I mentioned that it seems similar to finding a college apartment. Now, for a couple of the facilities, I feel like it depends on the facility. There are a couple of facilities in particular that did not listen to me on the phone during my initial conversation with them and they scheduled me on a tour with the wrong department. That facility and another has called me or emailed me multiple times per week over the last couple of weeks. Come on... no matter the reason, that just makes you look desperate and they were immediately chopped from my list.

Currently I have two facilities that I like and it turns out the directors of these two facilities are best friends. The are both reasonable in price with a ton of activities throughout the day. When I visited and took a tour, the facility was nicely decorated and clean. They smelled fresh and the residents were active and social. I have seen facilities where almost every resident were in wheelchairs and they all had a vacant look in their eye. There were other facilities that just looked scary. 

So as a summary, the things I look for are the cleanliness, atmosphere, and activities of a facility. I look to see how active and about the residents are. Is the facility nice and clean? Are the aides and concierges nice and friendly? What is the overall feel of the place? After my tour, do they follow up with me or are they absolutely obnoxious?

I'm sad and missing my dad, so I'm having a hard time coming up with a Pop-ism today. I've actually been having a hard time sitting down and writing this post for a few days. When depressed, sometimes the simplest task is ridiculously hard to complete. So my Pop-ism... He is incredibly smart and knew some much about so many things. He was always teaching and seemed to know everything. He could build anything too. I wish that I had half of the knowledge that he does. I wish I had even a small amount of his ability to build things from scratch. He was and is an amazing person.

Did you know...

The Alzheimer's Association (www.alz.org) is a great resource and all of the following statistics come from their website:

• Of Americans aged 65 and over, 1 in 9 has Alzheimer's, and 1 in 3 people aged 85 and older has the disease.
• Another American develops Alzheimer's disease every 68 seconds. In 2050, an American will develop the disease every 33 seconds.
• Alzheimer's is the only cause of death among the top 10 in America without a way to prevent it, cure it, or even slow its progression.

There are many more statistics but these are the ones that are the scariest to me. In my mind, it is because there was a boom in the population with the baby boomers, so as that generation ages a larger number of people are going to have Alzheimer's or dementia. This also means that there are going to be a greater number of caretakers as well as more money spent on care. 

There are already drastic changes to Medicare protocol that makes it increasingly difficult to have care covered. We ran into it with my dad. He was too healthy to have Medicare cover the cost of his care even though it was blatantly obvious that he needed more advanced care than my family could provide him. He had an amazing doctor at Beaches Baptist hospital who tried every test he could think of to find something wrong with my dad but to no avail. It causes this feeling of helplessness amongst caregivers and doctors. 

That leads me to another thing that annoys me about this disease. The horrible feelings that the caregivers end up feeling which are totally justified but yet feel guilty for feeling just the same. Is it wrong to feel relief once your loved one has been placed with in a home? No... but yet we still feel guilty for feeling relieved. And there are many more situations that cause the same type of feelings. It sucks and I wish there was a way to easily reprogram our minds and how we feel about a particular situation. 

So on another note, I tried again, unsuccessfully, to persuade my Grandma last  into making the decision to move to St. Pete. Instead, I ended up tasked with finding doctors for her down here. I don't mind, if it makes her more comfortable in making the decision to have all that defined and mapped out, then I'll gladly do it. 

I thank everyone for all of the positive feedback that I've been getting! I'm trying to keep it upbeat for the most part even though it's such a depressing subject so I decided to pick a funny Pop-ism today. My dad is color blind. He can see bright colors but all pastels look the same to him. He can see the nuances between shades of the same color but all the different colors in a similar shade look the same to him. So... hehehehe.... I used this to my advantage when I was in college. I had nail polish that was light blue... and while my dad was taking a nap one day... I painted his toenails pale blue... hehehe... he had no clue. Even looking down at his own feet... no idea... it was awesome! He didn't know until one day one of my brothers came over to talk to him on how to fix something and looked down at my dad's feet. My brother asked him why his toenails blue and my dad had no idea... I was outside and heard this exchange... it was awesome! My dad has a great sense of humor and was always one that enjoyed a great practical joke.

Finding Assisted Living

I wish that there was a big sign over an assisted living facility letting you know the grade of that facility. Or if there was a way to be a fly on the wall of the facility to see how residents are treated when the families aren't around. As I've said we've placed my dad at one that seems very nice and I've started the process of finding a facility for my Grandma in St. Petersburg. 

Most facilities do not provide you what the cost is per month unless you make the effort and tour the facility. So far, in St. Petersburg, I have visited (or tried to visit) 3 facilities and I'm in the process of scheduling visits with more. When we were looking for facilities for my dad our main focus was the Memory Care unit and the types of care they were able to provide. Most facilities offer different levels of care and some can be certified or rated to have the ability to dispense a larger dosage of certain types of drugs if the need ever arises.

In my research I have found there are considerable more facilities in St. Petersburg than there are in Jacksonville. In Jacksonville there are only a handful of facilities in a 10 mile radius around my parents house. In St. Petersburg there are over 50 facilities within a 10 mile radius. And as I visit these facilities I'm reminded of when I was trying to find an apartment when I was in Gainesville for college. "If you sign this weekend we can give you 1/2 off of your first 6 months!!" It seems a little odd to me that assisted living facilities are doing this. In Jax, there are waiting lists... not in St. Pete. I could move my Grandma into the one that I like today if I wanted. And in St. Pete a comparable facility to the one my dad is in is half the price of what we are paying for my dad. It's crazy!! Down here is definitely a buyer's market. 

Now how do I make a decision and how do I get Grandma to finally decide that she wants to move. I get the impression that part of her wants to move and be waited on but part of her is scared about the change. There is also so much to consider... Doctors, how to pay for it, amenities, nearby hospitals, etc... 

If you haven't already signed up for long term care insurance, consider it now. From what I've heard the younger you are when you sign up for it the cheaper it is and it would cover the costs of things that we are currently having to worry about for my dad and soon, my grandma. Did you know that assisted living facilities (the nicer ones) cost $3,500-10,000 per month!!! That was an eye opener, I had no clue. The costs are not covered by health insurance or Medicare at all for most situations. There is an Aid and Assistance program for vets or surviving spouses of vets that helps out with the cost of care, but it's not much. 

So I've got a facility that I really like and is around the corner from me that I would LOVE to move my Grandma into, now it's just getting her use to the idea. I'm visiting a few more while she is trying to decide, just in case I can find one that is just as nice and slightly cheaper. It's just convincing my 87 year old grandma that change is a good thing. 

So this weekend I'm taking a break. I'm going to Philly, I'm going to run/walk my half marathon, I'm going to have fun, and I'm going to relax. On Monday I'll be touring the next facility and continuing trying to talk my Grandma into moving here.

Since I'm really missing my dad right now and I really wish I could pick up the phone and call him and talk about my upcoming trip and race I thought I would give a Pop-ism about that. He was big into physical fitness and was always encouraging me in any of my athletic pursuits. When I was in high school as long as I was involved in a sport, I didn't have to find a part time job so of course I was on the swim team. As I got into triathlons and running, he was there at every finish line until I moved to St. Pete. I really missed him at the finish line of my first half-ironman but I was on the phone with he and mom immediately after. For some phone calls, even if he couldn't remember my name he could remember I was always running and training and would ask about it. Today I miss that. A lot.

Symptoms and Progression

I'm going to start my Pop-ism early... He loved to help and teach people. He really enjoyed passing along anything that he learned. He researched everything too which is a trait that he passed along to me. He was diagnosed with Esophageal Cancer in '97 and had a new surgery where they removed his entire esophagus. He had a rough time but recovered fully and then would tell anyone who wanted to know or listen his story. He believed like I do, if you can help someone with your experience, then it offers something positive to an otherwise difficult situation. I honestly believe he would be happy that I'm sharing his story.

It all started over a decade ago, so he would have been in his late 60's, I was in my mid-20's . When he was 55 he took early retirement from his job as a mechanical engineer and became a boat mechanic. He prided himself on remembering customers and boats and that is where he first noticed something was off. He would always remember a person that dropped off their boat as soon as they walked in the door to pick it up. More and more frequently he wouldn't recognize them at all. That embarrassed him. He went to the neurologist and after a multitude of tests he was diagnosed as being in the very early stages of Alzheimer's Disease. I'm sure there were other symptoms. For instance, he started using post-it notes ALOT. Those super sticky ones. He had a ton of them, EVERYWHERE. One time my dog Attila (a Vizsla), jumped on my parent's bed, ran to his bedside table and scoped up a ton of post-its in his mouth. I will always remember that sight, Attila in play pose on the floor by the bed with post-its everywhere and a mouth full of them.

Dad did what he could to slow the progression of the disease. He started playing the morning Sudoku that was in the paper. It became a morning ritual of my parent's and whoever was in the house when he cut it out of the paper and copied it. He started playing the Brain Game on the Nintendo DS. He tried some of the drugs that were out there. But I remember that some of those has nasty side effects or were contraindicative to other medications he was on. And all seemed well for years. 

Then the day came that it really dawned on me that things were progressing. I went out for a run and dad decided he would ride his bike with me. I can't remember how far I ran, but I remember he was stopping to wipe his nose and when he stopped, he forgot to put his foot down and fell over. His days of riding the bicycle were over. I think it was around that time that he was diagnosed with Impaired Cognitive Disorder. And there were a lot of changes.

Next he started having trouble organizing things and his thoughts. Getting dressed in the morning was a struggle. He had lists everywhere to tell him what order to complete tasks in. He started not recognizing places, like Disney, that he had been to hundreds of times. That was the end of my parent's travels. Somewhere during that time he voluntarily handed over his car keys and driver's license. He would also over focus on small things. Watching TV and reading books became difficult for him.

Over the next two years after that, although his decline wasn't drastic, it was too me. Since I visited sporadically, sometimes it would be months between times that I saw my dad. I would notice major changes that no one else realized because they saw him everyday. Then there was the trip that he didn't know who I was almost my entire visit. It was before Christmas of last year. Christmas sucked. At our normal Christmas Eve party with the family, he wasn't recognizing anyone. Christmas morning he was confused and started throwing away his gifts because he didn't understand and didn't need them. 

By April, I knew my family needed more help. So I spent a week in Jacksonville. That was rough. Really rough. My dad was a stranger. I still loved him with all my heart, but there were only small glimpses of the man that raised me. While I was up there we set up a company that provides in home care at a reasonable cost. After some trial and error, Shauna entered our lives. She was a life saver to my mom. 

But things continued to progress... finally it came to a point where he was uncooperative and almost catatonic at a Dr's appointment. His Dr. decided to call 911 and start the process of getting him into a facility. That was the start of a very rough time but we've come out on the other side and we have him settled at nice facility in the Memory Care section. 

To me, the most annoying aspect of the disease, is the patient's ability to fake it. He can make you believe that he knows exactly who you are and give you responses that he thinks you are expecting to hear. This makes it so not everyone can see the symptoms as they progress. So when I go and visit him and talk to him, there are instances that I'm never really quite sure whether he recognizes me or not.

So that's a very broad summary of events and the disease over the last 10-12 years. If anyone reading this has any questions about a particular time period, please don't hesitate to ask. I'm definitely not an expert, but as my story shows... I've experienced a lot.