Wednesday, July 19, 2017

Day 7

I felt today required more than a simple Facebook post. For those of you coming in late, my mom is out of town for 10 days, this puts the rest of us on 24/7 Dad duty.

In case you didn’t already know I like to have things done in a certain way. If I’m going to have to do most (or all) of the work, we are going to do this my way. Not the “easier” way or the way you might think it will work better. Nope. This has been my mentality the past 7 days.

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Me

Mornings are hard, getting Kelli up and ready for camp and getting Dad up and ready so that I can get them both fed and ready for the day. I’ve been doing this mostly alone.

This morning we had someone from church coming over to hang out with Dad, this way Troy and I could keep an appointment. I was attempting to make the house some what presentable and “make” breakfast (AKA Cereal). I had run down stairs to put something away and when I came back up Kelli came running up to me so excited.

She had given Papa (what she calls Dad) grapes and a cup of juice all by herself. She was so excited that she was “a helper.” I couldn’t help it. I cried. My 4-year-old took the initiative to give her grandfather breakfast as her Mom was trying to do other things.

Grapes and Juice for Breakfast

30 min later the man who had volunteered 2 hours of his morning showed up.
Within 30 minutes I had been smacked on the head twice. Then later in the day my sister and I were having a heated discussion about Saturday’s schedule. And I have learned an ugly lesson:

 Yes, I can do a lot, but I can’t do it all. 

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Not me 

I have to surrender to the idea that other people can help, and help in different ways. I may not always get the help I want in the way I want it. (Is that too much to ask for!?) But I have to take what I can get and roll with it.

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This is a lesson I have learned over-and-over. But it is also a lesson that I have forgotten over and over. I am always reminded of this butt kicking lesson at what appears to be the worst of times.
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The Lesson I Never Remember 

But it is really the best times. 

Thursday, July 6, 2017

"How Is Your Dad?"

I think the question I get the most is “how is your Dad?” Which is a valid question. And I am often stumped on how to answer. Do you want me to say “fine.” To avoid going in to detail and so we can both check off the social etiquette box. Or should I give you the real and depressing truth. And do I want to have that conversation. It takes an emotional toll to keep repeating the same depressing truth. 

Because of my personality I tend to go with the depressing truth. Not because I want the asking party depressed but because I believe in not sugar coating the reality.
So how is Fred?

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Well, he has Alzheimer’s. This is a degenerative disease, so things get worse, never better. But it is also very inconsistent. There are days where he is totally confused, there are other days where is spot on and you see much of Fred.

What really scares me is Alzheimer's or premature senility, losing that ability to read and enjoy and to write. And you do it, and some days maybe aren't so good, and then some days, you really catch a wave, and it's as good as it ever was.     
Stephen King

Dad recognizes those in the house and people that he has interacted on a regular basis for most of my life. But he slowly starting to mix up names. He sometimes forgets the house we live in is home. He will almost instantaneously forget something you just told him. As a result you answer the same question over and over. One day he was asking Mom how much they had to pay per night to stay at the house. Another day he asked if we were going to eat dinner (every meal is dinner) we joked and said there is no food in the house, he turned to me and said, “think you’re funny do ya?!”

He no longer has appropriate emotional reactions. Sometimes when people are being very serious he’ll start laughing, other times when people are laughing he’ll start crying.

Since March he has had 3 what the hospital called “syncopial episodes.” AKA he passed out. However what doctors weren’t getting was after these episodes his cognitive and physical abilities DROPPED significantly for 2-10 days. Then he’d slowly get better, but he has never gotten back to where he was functioning before. Since March he has started to need a walker for out of the house. He moves a lot slower and unsteady, we typically leave 5min or so earlier now to get to where we want to go.  We recently saw his neurologist who we love (it was great when Mom asked if she could ask unrelated questions. He said wait till the end, Mom pouted and was about to argue. She said she is a teacher and used to getting her way, his response. “You’re in my hood now!” I was laughing so hard). He believes they were most likely seizures. Which he is more prone to now, something I did not know! 
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Enjoying the fireworks


Overall Dad is following the “typical Alzheimer’s path” accept one thing. There is somethings about Fred that Alzheimer’s has not robbed us of. His smile. His pure love. His sense of humor.


Many persons with Alzheimer’s become agitated and hard to deal with. Constantly yelling or arguing. Not Fred. He laughs, he gives you a big smile when he sees you, he’ll ask how are you. He is still the same easy-going Fred.


Now don’t get me wrong, he isn’t always compliant. He recently got dismissed for a day group, why? He wasn’t following directions. Part of it is probably comprehension. But the other part is Fred doesn’t want to go sit and do arts and crafts. He recently just walked out of the house, Mom was yelling his name and he just waved and kept on walking. Don’t tell me that’s because he didn’t understand!

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But again, he waved and basically said “peace out suckers!” versus the yelling and screaming that many other families see.
See why it can be so much easier to just say “fine.”?

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The longest day of the year is also Alzheimer’s Awareness Day. The longest day is about love, love for the persons that are fighting or have fought this incurable disease. I made a couple of facebook posts thinking people would be like “oh that’s cool.” Hit the like button and continue to scroll. I was surprised how many people wore purple (Alzheimer’s color) and a few even donated to research.

Alzheimer's disease locks all the doors and exits. There is no reprieve, no escape.
Patti Davis

The love and support from family and friends has been amazing. People have come to hang out with Dad so we can run a quick errand or simply just have a break.

To care for those who once cared for us is one of the highest honors.
Tia Walker

So if you ask me “how is your Dad?” and I pause, know this is all going through my head. And know that if I do say “fine” it is because I want to check off that social etiquette box and leave it at that. 

The thing about Alzheimer's is that it's it's sort of like all these little, small deaths along the way, before they actually physically die.     
Lucinda Williams