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 :)
Showing posts with label Alzheimer's Disease. Show all posts
Showing posts with label Alzheimer's Disease. Show all posts
Tuesday, May 27, 2014
Thursday, September 12, 2013
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 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.
Tuesday, September 10, 2013
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.
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.
Monday, September 9, 2013
Restarting the Blog
I've deleted the previous posts and I'm starting this blog over. I know some people may not understand why I'm sharing so much about what is going on but I feel like too many people are quiet and there is not enough information out there. Or the information is out there and there is a ton of crap that you have to wade through to get to it.
My dad has Alzheimer's Disease. He was first diagnosed with it over a decade ago. Then the diagnosis changed to Impaired Cognitive Disorder. That basically meant he sucked at organizing things. He thoughts, the order he should complete tasks, etc... For him, that was the first major thing to go. I'm not sure if he has been re-diagnosed with Alzheimer's, but I feel it is inevitable. In my opinion, when whether it's Alzheimer's or dementia, it is still devastating to the person and their family.
During everything that is going on with my dad and that part of my family, I can't forget about my Grandma Dorothy. My maternal grandmother. She's 87. Her mind is still really clear but her body is... well... she's 87 and she has a rare syndrome that she's had all her life (KT syndrome) and now she dealing with Syncope which is also know as fainting spells. Basically, when she changes planes with her body (i.e. laying to sitting and sitting to standing) her blood pressure plummets and she passes out. Of course, she doesn't understand what is going on and she thinks she is dying and calls 911. She still lives independently and I've been visiting Assisted Living facilities here in St. Pete in the hopes of moving her down here. I love her, but my Grandma is a character and I want to take her off my mom's plate so that she can focus on my dad and herself right now.
So this all leads to the great philosophical question... which would you rather go first... your mind or your body. Good arguments can be made for both. I, personally, would rather lose my body. In watching what my dad and others in memory care are going though, it seems like absolute torture. You can tell they know something is off, but they've lost the words and the ability to put together the right sentence to describe where their frustration and fear lies. It's like eternally having something right there on the tip of your tongue and never being able to grasp it. And losing all of the memories and knowing they are gone. I know my dad recognizes me but I also can see when he gets frustrated because he knows he should recognize me but he's not able to place a name with my face.
So I'm going to sign off today with a Pop-ism. I thought this would be a good way to document all of the great memories that I have of my dad. He is a wicked smart man and did many, many things over his long life. And he was a huge jokester and for the most part still is. Growing up when I would bring friends over and introduce them, he always changed their name to Ralph. Back then I use to think it was just a joke that we had where he called every new person that I brought over (male or female) Ralph. It always broke the ice with them too. Now I realize it was a trick he used until he remembered their name. When you are a kid you are always bringing people to the house and sometimes it's hard as a parent to remember the new kid's name right away. This way, by always calling my friends Ralph, my friends never felt like my dad had forgotten them.
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