I'm losing my Dad...

....slowly. And it's f'ing brutal. He's 74 and was pretty active 4 years ago. Then he had a big stroke, and recovered. Except he lost a LOT of strength. Figured it would come back. It got worse. Took him to the doc:

You have ALS (lou gehrig's disease)

Incurable. 1-5y estimate. We're at the 18 month mark I guess. He has zero movement. AT ALL. He just lies in bed 24/7 watching TV. You can still talk to him and we watched a movie last night but he falls asleep a lot and sometimes can't stay with the convo and drifts off. Oh, that's cause then they said he had dementia but "He won't last long enough for it to get REALLY bad". 

Ugh.

No point to this I guess other than to ask some of you that have gone through this how the F am I supposed to navigate this? My mom is hanging in there but the days are HARD on her. 54y married. She has nursing care for him, but of course he asks HER to do everything cause he doesn't want some male nurse feeding him or helping him.

Just feeling it this morning, I guess. He's been a great "pops" to me and the kids...but this is agony just considering what HE feels/thinks as he lies there 24/7 and can't even scratch his own nose. 

he told me early on "Ya know - don't be surprised if I just pop 50 of these damn pain pills, son" and I said "I wouldn't hold it against you, dad". Well, I drove home last night considering that he couldn't even do that now if he wanted. And for the love of God, he better not ask me to do it for him.

 

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Django
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USA
1/28/2023 9:36am

Sorry

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1/28/2023 10:11am

Sorry to hear that Bro. My dad is 80 he has dementia still living on his own on a farm. Nurses go out there mon- Fri. He’s loosing it pretty fast . 1.5 yrs ago I couldn’t get a hold of him for Father’s Day. My oldest sister answered & said he was a little upset . Because lastnight you and Betty his deceased wife where talking all night in the bedroom above his . Things r much worse now. He thinks I,m out there a lot . 7 weeks ago I visited him . He said your lucky you caught me hear Tone . I,m not hear very often. I don’t like it hear much there’s nothing to do. Etc. I asked oh really where are you usually? He thinks he lives at a farm we had in the 70,s. He said yrs ago at the co Op they had a few houses like this . They must hv build alot of them. That sent a shock threw me. But I know the disease when it progresses it’s pretty bad. He is the opposite now very non violent. People that where never violent get very violent with the disease. I don’t hv any regrets really of that I didn’t get to know him, etc b4 he got sick. On a day off in 18 when his 2nd wife died I helped him out with stuff on the farm. I know him better than he knows himself in a way. My mom won’t talk to any of us. So I don’t hv parents . It really doesn’t bother me tho. Bizarre family since day 1. I always tell a chic that I don’t hv a family,I,m a foster child. Nobody wants to hear about a bizarre family story. 

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plowboy
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Norwich, KS, USA
1/28/2023 10:14am

That's a heavy load.  Since he can still speak....ask him every question you can think of...and record it.  I wish I had.

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Bill_Carroll
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Falcon, CO, USA
1/28/2023 10:28am

It sucks I know,

My Father passed two years ago at 86. We live in Colorado and he in Ohio,  Last time I seen him he was at my youngest Daughters Graduation party smiling, laughing and 3 months later he had passed of Cancer. I was devastated but I do have the memory of him smiling and laughing. The dreams I have of him are attached to that good time we had.

I know you don't have that but maybe show your father some Pics of you two together .

 

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The Shop

1/28/2023 10:41am
plowboy wrote:

That's a heavy load.  Since he can still speak....ask him every question you can think of...and record it.  I wish I had.

It’s pretty hvy but write down what he really means to you etc. you don’t want to forget anything.  Because once there gone you don’t want to be talking to a tome stone about I always wanted to tell you ,etc.  Just get it out then it’s done . And everyone is at peace. 

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philG
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11092
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Location
GB
1/28/2023 11:41am

Feel your pain, my dad is in good physical health but doesnt know who i am.. he is 83

Went to a local race 2 weeks ago and it was like the first time he had seen it. 

I have raced since 1974.

 

TXDirt
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Location
Plano, TX, USA
1/28/2023 12:04pm

Adding you and your family to my prayer list. Praying for strength and peace. And that somehow in this suffering would be a way to honor and glory God.

Easier said then done.

Praying for you brother.

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1/28/2023 12:47pm Edited Date/Time 1/29/2023 3:07am

I lost my dad on the 13th of Jan. It's hard bud and all I can say is give him as much love and time as you can. We share your pain.

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Chatmore
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Memphis, TN, USA
1/28/2023 1:23pm
plowboy wrote:

That's a heavy load.  Since he can still speak....ask him every question you can think of...and record it.  I wish I had.

Very sorry for you, bro. Boom, myself, and many others have gone through this and it downright stinks. You will get through it though. plowboy gives some sage advice above that I wish I had followed. Hang in there.

Brad460
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4505
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Location
Richfield, WI, USA
Fantasy
1/28/2023 1:53pm

Sorry to hear!

So far my dad (74) is doing really well- We are in northern WI this weekend snowmobiling. Just got back from a 110 mile ride- I am actually a bit surprised at how good he is still able to ride. Got to make the best of it while we can because it can change in a heartbeat..
 

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1/28/2023 4:37pm

I lost my dad in 2012 and it’s brutal.

it’s one of the first people you have ever known in life!

one of the first person you have ever made eye contact with!

The first person you felt was Superman.

I feel your pain.

it does get better over time.

 

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FLmxer
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SouthWest, FL, USA
Fantasy
1/29/2023 9:31am

I'm very sorry. My dad , my hero is close and I hope I made him proud somewhere somehow because he is the best man I ever met and he deserves that. 

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Falcon
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Location
Menifee, CA, USA
1/29/2023 10:08am

Sorry to hear about your situation. Spend time with your dad and make sure he knows you love him. 

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Darrin Willis
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Location
Red Deer County, AB, CA
1/29/2023 10:53am

I feel your pain.I often wonder about getting old and unable to do regular stuff. At what point would I rather die? My dad is 83. He still drives. Every year he has to take a cognitive test to renew his drivers license.  Every year he is closer to failing.  He has told me he wants to die before he loses the ability to drive. His dad (my grandpa) suffered and died of alzheimers at 96. He didn't know anything or anyone from about the age of 80. Was he happy in his own mind? I dont think so. But maybe he was? 

Gworm
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Monett, MO, USA
1/29/2023 12:31pm

I’ll be praying for you, as well. 

1/29/2023 2:55pm

thanks guys. I knew ya'll would have some strong shoulders to lean on. This shit just consumes my mind and it's not easy, to put it lightly.

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peelout
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Ogden, UT, USA
1/29/2023 3:22pm

Damn man, I'm really sorry.  My dad is my best friend so this thread hits hard.  I hope you and your family can find warmth and  happiness in his time left in this life.  

 

1/29/2023 7:53pm

That sucks.  Plowboy had a good idea, should be worth the effort to try recording the two of you.

 

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sostoked
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Twentynine Palms, CA, USA
1/29/2023 8:02pm

sorry to hear that man. My Mom (69) has ALS. She’s maybe a little over three years in. Seems like hers is very slow progressing but it seems like it is getting worse now. She is losing strength every day and will soon be in a wheelchair. She can stand but has absolutely no balance at all so has to use a walker. Its a really horrible disease. Every day there is a new task that she cant do.

Its hard to imagine what the future holds but we try to keep her spirits up with conversation, visits from friends, etc. Thats about all you can do.

 

Wish you and your Dad the best.

Magoofan
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1/29/2023 8:26pm Edited Date/Time 1/29/2023 8:28pm

I'm sorry man.     Going thru something similar with my mom....dementia.     She's pretty much gone now....they prop her up in front of a tv and feed her.  Doesn't even know who I am anymore.      It's brutal.   Makes it worse that I don't live near her and don't get to spend a lot of time with her.  

Sad

 

LIke TXDirt said above.     Prayers for you and your family.  

 

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Chatmore
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Memphis, TN, USA
1/29/2023 8:43pm

So f’ed up and weird as you age. Guess what? Your Dad was right. About everything. Cherish him while you still have that luxury. It will pay great dividends. ❤️🙏

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JustMX
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USA
1/29/2023 8:58pm Edited Date/Time 1/29/2023 9:10pm

ALS

DAMN

I wish I was more articulate and able to adequately express how sorry I am that anyone has to go through such an excruciating situation with a loved one.

My dad lived 2 1/2 hours away and a guy helping him do some stuff around the house found him unresponsive. I listened to the emts trying to revive him on the phone and felt so helpless. I would imagine you feel that way often

There is some good advice in previous posts.

Leave nothing unsaid.

 

1/30/2023 5:53am

My grandfather passed with ALS when I was a teenager. It was....brutal. The 'kids' weren't even told about anything until it was fairly progressed. We obviously knew something was up, but we had no idea what it was or more importantly that it was fatal. By that time we were told anything, there wasn't much time left.

My advice from my experience is DO NOT hide the situation from the kids or try to sugar coat it to them. You don't need to get into the sordid details, but tell them what is happening and the end result while there is time.

Prepare yourself for an absolutely horrible time of helplessness and try to steel yourself as best as you can. Cling to whoever you can for support and offer support yourself to those around you. No one involved will come out of this without pain.

It only gets worse and then it's over. I'm sorry you have to experience this.

 

And I'm sorry if my post seems like a bunch of dark cloud hopelessness, but that is my personal experience with this and I have no positivity to share; I can only advise to prepare for the worst.

1/30/2023 9:19am
....slowly. And it's f'ing brutal. He's 74 and was pretty active 4 years ago. Then he had a big stroke, and recovered. Except he lost a...

....slowly. And it's f'ing brutal. He's 74 and was pretty active 4 years ago. Then he had a big stroke, and recovered. Except he lost a LOT of strength. Figured it would come back. It got worse. Took him to the doc:

You have ALS (lou gehrig's disease)

Incurable. 1-5y estimate. We're at the 18 month mark I guess. He has zero movement. AT ALL. He just lies in bed 24/7 watching TV. You can still talk to him and we watched a movie last night but he falls asleep a lot and sometimes can't stay with the convo and drifts off. Oh, that's cause then they said he had dementia but "He won't last long enough for it to get REALLY bad". 

Ugh.

No point to this I guess other than to ask some of you that have gone through this how the F am I supposed to navigate this? My mom is hanging in there but the days are HARD on her. 54y married. She has nursing care for him, but of course he asks HER to do everything cause he doesn't want some male nurse feeding him or helping him.

Just feeling it this morning, I guess. He's been a great "pops" to me and the kids...but this is agony just considering what HE feels/thinks as he lies there 24/7 and can't even scratch his own nose. 

he told me early on "Ya know - don't be surprised if I just pop 50 of these damn pain pills, son" and I said "I wouldn't hold it against you, dad". Well, I drove home last night considering that he couldn't even do that now if he wanted. And for the love of God, he better not ask me to do it for him.

 

I understand his thoughts.

I told my family If I ever get to that point that I would 100% rather die than have some woke blue haired prescription pill addict "male nurse" playing with my pecker when I'm on the way out.

Men are supposed to be surgeons and stuff like that.  Nurses are supposed to be women. Even if they are grandma age.

Call me old fashioned, but men working womens jobs like secretaries and nurses No thanks to a sponge bath from a dude. Just let me die with dignity.

 

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1/30/2023 9:33am
My grandfather passed with ALS when I was a teenager. It was....brutal. The 'kids' weren't even told about anything until it was fairly progressed. We obviously...

My grandfather passed with ALS when I was a teenager. It was....brutal. The 'kids' weren't even told about anything until it was fairly progressed. We obviously knew something was up, but we had no idea what it was or more importantly that it was fatal. By that time we were told anything, there wasn't much time left.

My advice from my experience is DO NOT hide the situation from the kids or try to sugar coat it to them. You don't need to get into the sordid details, but tell them what is happening and the end result while there is time.

Prepare yourself for an absolutely horrible time of helplessness and try to steel yourself as best as you can. Cling to whoever you can for support and offer support yourself to those around you. No one involved will come out of this without pain.

It only gets worse and then it's over. I'm sorry you have to experience this.

 

And I'm sorry if my post seems like a bunch of dark cloud hopelessness, but that is my personal experience with this and I have no positivity to share; I can only advise to prepare for the worst.

ugh.

Thank you for the brutal honesty.

Some days are good, some days are horrible, as you know. He had some family come around yesterday to watch the fball games but then mom said he couldn't stay with the convos and kept falling asleep. He is hyper sensitive to folks seeing him like this so he rarely will take guests except for me. It's beyond depressing for ME...and that seems selfish as I can't imagine what he's feeling. Hell, he couldn't "go out with style" even if he wanted now. 

I am ashamed to admit, but I've secretly hoped more than a few times that he has a gigantic stroke in his sleep and that's it. I know he'd prefer it also. It brings up a whole other convo about compassionate death. We don't let our DOGS live like this, but somehow think we should allow our family. I know if presented the opportunity to take a needle and go to sleep forever, he'd do it in a second. 

This is going to be one helluva hard year.

APLMAN99
Posts
12718
Joined
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Location
Tualatin, OR, USA
Fantasy
1/30/2023 10:02am

I spent the day with my nearly 79yo dad yesterday.  He's a 5'8 ball of fury who, even though retired, works harder on his lightest day than I ever have or ever likely will.  He's still sharp but starting to wear out.  Pacemaker, hearing aids, etc.  

I have to admit, this thread made me hug him just a little bit tighter and say "I love you Pops" a little bit louder when it was time for him to go back home.........

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KennyT
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4400
Joined
8/16/2006
Location
Vista, CA, USA
Fantasy
1/30/2023 12:54pm

I am so sorry to hear this news. I am really bad at knowing what to say for times like this but please know I am praying for you and your family. It also got me to call my 87 year old mom on the way to work. 
 

if I can offer any advice it is to try your best to be there as much as you can to offer him your time, talk to him like he hears and understands you perfectly. Hang in there my friend 

TeamGreen
Posts
37346
Joined
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Location
Thru-out, CA, USA
1/30/2023 1:03pm

You are in my thoughts. You’re a good dude. 

Crush
Posts
21122
Joined
4/26/2009
Location
Sydney, AU
2/2/2023 3:52am

Brutal. Am sorry to read it.

I don't have any advice, but i've just spent two of the last three weeks doing some work on our yard with my Dad – who is and always has been my hero – and I've appreciated it so much, not just for the help, but to spend time with him. Bloody hard work, but memories all the same.

I hope you can think of some good stuff over the years and march on best you can, nothing is gonna make it easy and I don't think you should expect yourself to always handle it well. Best of luck. 

ratbeagle139
Posts
139
Joined
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Location
Lazy E, OK, USA
2/2/2023 4:28am Edited Date/Time 2/2/2023 8:27am

My heart goes out to you man. I went through a similar situation in 2015, ultimately losing my dad when I was 24. I still have questions for him every day, he was my best friend and mentor. Strap a happy face on and be there with him as much as you can, even if you have to ball your eyes out as soon as you leave, work is not more important than your dad. That’s my only advice/regret. Hang in there and lean on your friends and fam.

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