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Junyeong

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Joined
Nov 29, 2012
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9
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CALS
Diagnosis
09/2010
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US
State
Alaska
City
Anchorage
Since registering here in 2012 I haven't posted anything.

My Grandfather was a Renaissance Man and an organized collector. I got the extreme end of both. Some would call it hoarding, but I prefer to think of myself as a professional repurposer. :)

My dad was never a very emotional person, so I don't know what happened to me. I got the total opposite end of that! :cry:

I've been working as hard as I could to make him happy, but it doesn't work. He wants everyone to pretend that he isn't sick and to go about their lives. I've tried as hard as I could to make him cry happy tears. I've only seen him cry once in my life and that was in the hospital after almost dying of pneumonia. He was thanking me for working on an apartment to rent.

Everything that my wife and I do is too little too late. We bought a handicap school bus that was partially converted into an accessible motorhome by a military veteran. He spent the first two years of retirement building it and then died of a heart attack. I bought it at a storage lot from his son. Cups still in the sink, silverware in the drawers, and misc parts laying around. We kept it a surprise and worked on it a little until Christmas. We took out the bathroom walls and sink so he could transfer onto the toilet, we took out the junky mattress and built a hospital bed out of hardwood (that was a stupid crazy project). We actually found a little 5kw diesel heater and installed baseboard heat for comfort. I couldn't take the chance that on Christmas day we couldn't get the 20,000lb 2 wheel drive school bus to his house, so I bought tire chains for all four wheels! We had a crazy weather storm come in melt all the son! Imagine on Christmas day a Red-White-Blue (probably not a coincidence due to the military background of the bus) School Bus driving down the road throwing sparks on dry pavement. :) We still needed the chains to get down the private road leading to the house so it wasn't a total loss.

Before he could ever go anywhere in it, the pneumonia came and he was too weak afterward to use it. The bus's tradition of never being used by the intended passenger continues! My wife and I plan to finish it and let non ambulatory people use it. Until then it is parked in his yard in plain view of a giant picture window, so he won't be able to forget the thought. :)

Too little too late…we thought we would have more time. He was diagnosed in 9/2010 but could have had ALS a long time before that. He was trying to put a cover back on a hot tub around 2005 and was blown off the deck in a surprise burst of wind. That broke is back and ever since he has had nerve damage which he attributed some of the sensations to before getting the diagnosis. Toe drop is what made him go to the hospital I think.

We have done numerous other things and devoted all of our resources to making him happy, but all he wants to see is my kids. I can recognize that…but I still have an urge to do something. There has to be SOMETHING I can do to make him more comfortable, happy, and want to live longer. Yes, I know that sounds stupid.
 

cheerleader

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Joined
Jul 6, 2013
Messages
977
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Lost a loved one
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08/2012
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US
State
Midwest
City
Small town
My heart aches for you as I read your journey to do something special for your dad. One of my favorite sayings is " We are human BEINGS, not human doings." Your dad is telling you he just wants you to be in his life. This disease robs people of so much, so if he isn't eager to continue, please understand it is no reflection of your efforts. All we can really do for our PALS is to love them, be there and tell them what they mean to you. Good luck, and try to assuage your guilt- there is little else we can do besides love them and be at their side through this.
 

Atsugi

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Messages
5,189
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12/2010
Country
US
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FL
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Orlando
Junyeong: "There has to be SOMETHING I can do to make him more comfortable, happy, and want to live longer."
He certainly needs to be comfortable and happy, but he knows he can't live longer. If you're trying to get him to want something he knows he can't have, that could cause conflict.

"I've tried as hard as I could to make him cry happy tears."
Caution: Uncontrolled water works in the path of a paralyzed person's breathing process might be counter-productive, to say the least.

"all he wants to see is my kids."
Sounds like a great goal. Help him with this.
 

Nikki J

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Joined
Mar 22, 2012
Messages
8,805
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
You obviously love him very much and are trying so hard. I get this having been in your shoes ( my mom had this) but I am living the other side now. Maybe, just maybe, you are trying too hard. It is a truth that our world gets smaller and our energy limited. He needs you to meet him where he is. I am guessing the kids in question do not yet exist on this earth? Maybe you could help him prepare some kind of message from Grampa collection. It is very common for PALS especially if we have minor children in the family to prepare messages for life events to be given on those days( things like graduation, marriage, children. Or in this case starting from the beginning welcome to the world
 

Junyeong

New member
Joined
Nov 29, 2012
Messages
9
Reason
CALS
Diagnosis
09/2010
Country
US
State
Alaska
City
Anchorage
When he was first diagnosed he said he didn't want a feeding tube or breathing tube. When my daughter was born and he was still on a walker he turned to my mom and announced that "we should look into a feeding tube". So I had a son. ;) Just kidding, we had because my wife thought she wanted 12 kids. Now she only wants 3. :confused:

He now has a feeding tube, breathing tube, can shrug his shoulders, and has limited head mobility. He can speak in syllables and most of the time we can understand what he wants.

He had a blood clot in his lung, I guess the uncollapsed one, and almost died again at the beginning of September. I keep telling him that he can't use up all of the Medicare! Thanks Giving was the first day since then that he got back into the chair because he was worried about breaking off another clot. He is on blood thinners.

I'm not sue why I'm doing all of this. Maybe subconsciously I am trying to make him want to live. I do know that as long as he wants to live, I want to make him happy living!

Last year when he was still eating small foods I tried to invent a spoon with a tiny little pneumatic actuator that would grab the food with a tiny fork. By the time that it was half done he wasn't eating any more… Too little too late. :( I'm not sure if it would have ever worked, but he loved chicken and steak and would have trouble stabbing even the littlest pieces. I kept imaging him accidentally triggering the actuator and pinching his face or tongue with the spoon.

I'll have to see if I can find the DVD of my wedding in 2011. In Korea it is tradition for the parents to stand and the man bows. He struggled and stood up for it. Even back then it was hard for him and it was emotional. I've been needing to upload that video!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,490
Reason
Lost a loved one
Diagnosis
05/2013
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OZ
State
AU
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lala land
So hard, CALS live in a constant turmoil I think. We get it!

I love Nikki's suggestion of grandpa collection. That could be something you could work on together to make the most of time you do have. I believe that is what will make him happiest - spending time with the ones he loves.
 

Nikki J

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Joined
Mar 22, 2012
Messages
8,805
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
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Boston
Even better that they are here now. There is great joy from being with the little ones. Even if he is mostly just watching them. And perhaps there are cultural traditions he wants them to know that you record or list
 

Junyeong

New member
Joined
Nov 29, 2012
Messages
9
Reason
CALS
Diagnosis
09/2010
Country
US
State
Alaska
City
Anchorage
The kids exist, and I wish they could exist at their grandmother's house more often for babysitting! :) They take care of him too. Amazingly as soon as the boy or girl could stand they would bring him toys, remotes, and even share their crackers or chips with him! He used to have a TV tray and when they come over it would have toys on it.

The little boy even knows where the pie plates belong (he pushes a pie plate of the side of his bed if he needs help). He will reach up high and try to put the plates back on the bed.

My daughter will run to grandma if he is making weird faces because she can tell he needs the cough assist machine. That really touched grandma.

We had a bad October and November where took turns being being sick at our house. We don't go see him when anyone is sick because pneumonia takes too much out of him. He gets pretty lonely when that happens.
 

Nikki J

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Joined
Mar 22, 2012
Messages
8,805
Reason
PALS
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04/2014
Country
US
State
MA
City
Boston
They sound terrific. Though I am sure they are a handful at times. Of course you have to be so careful with germs. Can you skype at those times? Not the same as being there but a few minutes of skype means a lot. My mother 's siblings all stayed in the " old Country". Even when she could not speak or really move it was obvious how much she loved seeing them and their families on skype
 
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