Making Decisions

Tonight was hard. My mom and I sat down to discuss Medicare choices.... Medicare Original or Advantage? Additional Prescription coverage or no? Gap coverage or no? Well, I've been looking online, and now I have the book to study. I'll be making some phone calls and researching as much as my brain can handle in order to make the decisions necessary. If it wasn't difficult enough to openly discuss the fact that we will soon need Home Health Care, we also had to discuss what we want for us and for him long term. Do we want to prolong his life at any cost? Do we mostly just want him to be comfortable and blissfully unaware? Do we want him in a clinical trial? What kind of clinical trial? Do we tell him his diagnosis or try to continue to hide it? (Which is becoming more and more difficult!) WHY WON'T MY BROTHER MAKE CONTACT?!!!!

Frustration. Fear. Reality.

My reality is this: My father has probable Alzheimer's Disease. Correction: Early Onset Alzheimer's Disease. You may not know this, but Early Onset is radically different from Late Onset. Late Onset is anything over the age of 65 and is a very slow progression that has much more to do with aging. In fact, when studying the brain, it is a completely different reaction in elderly people than in early onset. Early Onset Alzheimer's (from here on known as EOA or EOAD) is the MOST SEVERE form of this disease. It is the fastest progressing with the least amount of possible control factors. EOA starts as early as your 30's or 40's, but up to age 65. Most EOA starts in the late 40's and 50's. EOA makes up for only 3% of the 5 million cases of Alzheimer's Disease in America. Yet, in a family where the father was diagnosed with EOA, 5 out of 6 of his children carried the same mutated gene and ended up with EOA also. My father has 2 biological children....myself and my brother in North Carolina who hasn't spoken to the family in quite some time and won't return contact. As a child of someone with EOA I have a 50% chance of carrying the same mutated gene. If I carry that gene I have a 100% chance of developing EOAD. That feels like a death sentence.....a horrible one. I want to grow old gracefully. I want to hold my grandbabies and know they are mine and watch them grow. I want to ride off into the sunset with my husband. I want to see more of this world than Northwest Arkansas!!!!! (I was born and raised in the same small area where I've been for 32 years.) This may sound selfish in the face of it all, but this is just some of what I'm dealing with and I'm throwing it out there. I try to stay focused on getting the best care for my dad and still being a good mother and wife in my home, plus trying to make every day count....and for the most part, I DO stay focused on those things because there is no time for feeling sorry for myself or questioning the future. I know the Lord has my future in His capable hands. My favorite verse has always been Jeremiah 29:11, "For I know the plans I have for you, plans to prosper you and not to harm you, but to give you hope and a future." I'm clinging to that verse now more than ever.

In the face of the negative, here is some positive:

My father read along while my daughters read him some children's books today. Some of the words he was confused about, but he did good for the most part. We've been on a few outings lately since my grandma has been visiting and I've been able to capture some memorable moments, which I will now share.....

We took a trip to the park today....boy was it hot!!! There are some beautiful flowers, though, and the water was flowing over the bridge (right background) from all the recent rain.

Grandma and Dad got a kick out of watching the girls play (which you can see more of on my other blog).

Dad and Grandma watch the girls as the play in the freshly "cleaned" creek.


Enjoying ice cream....Grandma's Treat!!! :0)
The best kind of treat.....
I love the picture above and the one below. I think they are now my favorite pictures of my Dad. Above, he looks like a normal grandpa enjoying his grandkids and some good, old fashioned strawberry ice cream.
Remmy caught this picture....I need to remember to thank her. I love my family so much!!!


Love,

Jerri

Eagle Watch and Grandma Comes to Visit

Dad's been out and about more. Grandma came to visit and we went to Eagle Watch Nature Trail, which got him out and in the fresh air. It was an impromptu outing due to all the rain that has been here for so long. Friday evening he and my mom came to Jaslyn's kindergarten graduation. He seemed to do very well, but they didn't stay for refreshments.

Having grandma around has been a HUGE help!!!

Today (Mother's Day) we had lunch at my parent's house where one of my brothers along with his family and one of my sisters and her family were there. It was a lot of people with many different conversations going at once. Way too much to keep up with for Dad. He got a little strange at one point, so I took him outside for a bit of fresh air and calmness, then he seemed to do fine. What's really hard is that my siblings and their families intentionally avoid him. It makes me SO angry!!! My sister feels sorry for my mom and wants to put my dad in a home. (This is her step-dad, but has been so since she was 10-11 years old.) She says it might be different if it were her dad.....she has no patience for him and admits it. God grants what you need when you need it, but you need to ask Him for it, too! Grrrr. I know, not everyone handles these situations the same, and I do love my sister, but it's frustrating to try and explain things to someone who only sees him a few times/year. He's sick. It's not his fault. You can't hold past mistakes against someone who has no recollection of those mistakes. The time is now, we have right now and that is it. Why dwell on his past character flaws when right now he is so loving and caring and affectionate? He's not the same person he was, which has made it much easier for me to help care for him.

Sorry about the tangent, there. All in all, things are going well, or....at least as expected and not a whole lot worse.

Does anyone else share these frustrations???