My Dad...

[SoniaT]

My Dad

Hi,

I totally agree, his life should matter!

If you can't cry in front of him cry in the shower like I used to do. If he is the one crying (mom cried alllllll the time) just sit with him and hold his hand, or pat him on the shoulder, pass him the tissues, tell him it's okay to cry just let it out!

(I'm sorry I just suck at this I'm an only child, female, so when it comes to macho, not so macho guys stuff I'm sort of stuck, but I hope you might gather something from this weird post!)

Hugging is the perfect action! :-D

Just spending quality time with him I think is saying I love you even if you don't say it out loud!

Take care of you too,

SoniaT
Burnaby, British Columbia, Canada

 

[Pollyanna]

Help for excess saliva...

Hey everyone,
Not sure if I have read ALL posts, but so far haven't seen anything about this, and it helped my brother-in-law quite a bit. His situation was very extreme, and the suction machine just couldn't keep up with the massive amounts of saliva.
BOTOX! They gave him Botox injections in some (not all) of the salivary glands, and it really helped with the constant drooling. Still had to use the suction machine, but at least he didn't have to sit there with a roll of paper towels all day! My husband, his brother, now has ALS, and I'm beginning to see some symptoms of excess phlegm, coughing, etc. And his speech is just a tiny bit slower and slurring a little. But at least he can still eat! I'm dreading the day that is taken from him, because he really enjoys good cooking, especially MY cooking (according to him, anyway).
Hang in there, and I'll keep y'all in my prayers. I hate this disease, and I'm so sorry you are having to go thru it, too.
God bless,
Pollyanna

 

[emjoi]

Endgame.
After a bad bad week, yesterday my dad was put on continuous sedation.
Basically keeping him unconcious with drugs.
He was a bulbar sufferer and, despite all the horribleness of that, he had managed to keep use of his limbs... he could walk and type on his Lightwriter. But last week the muscle weakness finally caught up very dramatically, and his body just failed in so many ways.

More than anything, he didn't want to suffer, and that was what he was doing in that last week. So, this is for the best. He sleeps now, and soon it will be over.

 

[hboyajian]

Dear Emjoi, The pain of losing someone you love is so great there are no words I know to to speak. Just know that I am holding you and your family in my heart. My father died almost a month ago, and there are some of his last moments holding his hand and stroking his forehead, even when he could not speak, that I hang onto now. Holly

 

[SoniaT]

Your Dad

Dear Emjoi,

I'm terribly sorry to hear about your Dad. My Mom had the Bulbar type as well.

I have no elegant wise words to say to you to help you feel better because nothing is going to make you feel better now.

What I can say and what I believe is that even if your Dad is in continuous sedation, I believe he can still hear and sense what's going on around him to a certain degree. When my Mom was unconscious I would sit with her, hold her hand, stroke her face and hair and tell her how much I loved her, and what a good mother she had been to me. One day I got in the bed with her and held her. I felt she knew I was there, I don't know how I knew I just did.

She died with me holding her hand and my husband standing at her side. It was very peaceful. I thought I would be scared but I wasn't. I sat with her for awhile after she died and still spoke to her and told her I loved her.

My heart is breaking for you right now. Please know that you are not alone on this journey. I'm here to help, as I believe all the other kind people who come to this site are.

Feel what you need to feel now. Remember his love.

I'll be thinking of you and your Dad.

Many, many hugs for you and your family and your dear Dad.

Sonia

 

[SoniaT]

Hi hboyajian,

I just read that you lost your Dad almost a month ago. You poor dear. Please accept my deepest condolences.

I lost my Mom just over three years ago but am still grieving. She lived with me and my hubby and I took care of her for over two years. I too hold dear the moments of holding her hand and touching her face and talking to her even though I wasn't sure she could hear me.

Hugs for you,

Sonia

 

[emjoi]

Sonia, hboyajian, thanks for your kind words. I'm so sorry you have gone thru this as well.

In the hospital is a small chapel, and in it is a book that people write little prayers.
And so many stories just like my own. People hoping their grandma or husband or friend at least find a peaceful end.

Anyway, I sat with pop for an hour this evening, holding his hand, chatting to mum about trivial things... deliberately picking on subjects that would interest him... the dog that he loved being taken on a walk etc. I think he could hear. I wish I knew for sure. Sometimes his hand would move in reaction. Damn I miss his voice. When he was healthy he could waffle on, on some silly subject and you'd be wishing he'd get the the Damn Point, but now I wish I could have that back so much.

 

[saska]

Hello Emjoi, I am so sorry to hear of your impending loss of your father. I can only imagine how hard this is for you, but I also hope it is somewhat comforting to know that through sedation his suffering has been alleviated and soon he will suffer no more. I agree with others who've said that he can still hear you. I think it is beautiful that you sat with him and spoke of things he loved. God bless your dad and you. Sharon

 

[Teej]

cough assist

I am not sure what stage of mucus build-up requires this, but my husband has recentlly started using what's called a "cough assist". It helps to draw the mucus far enough out that he is able, by stimulating his gag reflex, to vomit it out....or swallow it, whatever gets it out of his airway faster.....

 

[sufernan]

Thinking of you

Endgame.
More than anything, he didn't want to suffer, and that was what he was doing in that last week. So, this is for the best. He sleeps now, and soon it will be over.

Dear emjoi,
I am sorry that you and your family have to go through this. I know how hard all this is and I am thinking of you and praying. I lost my husband to ALS a year ago. I hope you will find some comfort in having so many people supporting you and understating what you are going through.
Sunny

 

[CodyLady]

Emjoi, I am so sorry for what all of you are going through. It sounds like your dad's situation unfolded much like my father's is (he is earlier on in the process). It helps me a lot to know how things are going at this point with you, as I know I will be in the same place much sooner than I would like.

Bless you, and thank you so much for sharing with all of us.

 

[SoniaT]

Dear Emjoi,

Just wondering how things are today? How are you holding up?

I liked what you said about sitting with your Dad and talking to him about things that mattered to him.

The part about him not being able to speak (I assuming this started a while back? As I know he is on continuous sedation.) Struck home with me. My mom lost her voice about 6 months before she died. To this day, more than 3 years later, I still miss the sound of her voice, the sound of her laugh and her complaining about our 6 cats taking up all the room on her bed!

I think you are doing the right thing by sitting with him and just talking, holding his hand, just any type of physical contact along with the verbal contact I think is bigger than we know. But we will all know some day.

Please know that I am here for you, my shoulders are not too big, but they are ready and willing for you if you need them.

Please take care of you. My regards to your Mom and the rest of your family.

Sonia

 

[emjoi]

Done.
My dad died at 8:15am this morning. I've just gotten back from the hospital. Gonna lie down on a bed and sleep a while.

Perhaps I should feel sadder, but it's more... "Well, finally its Over".
We lost the War, but at least the War is over.
I had more sadness watching him struggle than seeing him at rest.

And my mum can sleep and get out of that hospital and let go of all those worries.

So. That's it then.
Thanks for the kind words, everyone.

(Sonia, yes, his voice went around March 2006, He revealed his DX to me in June 2005, but had mysterious symptoms for a year before that.)

 

[hboyajian]

Dear Emjoi, I can completely relate to your exhaustion and need to sleep. I also was at the hospital for days before my father died, hardly getting a place to lie down. The sleep is healing, as grief can take a physical toll as well as emotional and mental. Do not be surprised if you can't remember simple things you need to do or have some other mental strains. I found that at first I couldn't feel, hardly anything, as my brain went completely numb and I felt like my body was just moving around automatically. You may experience something like this as well. Also, there was so much to be done regarding paperwork that I was helping my mother with...and so many people to call, and the obituary to write, and the memorial to arrange. It was only after all this that I have been able to feel little bits at a time. I think losing someone that close to you is so huge and overwhelming it cannot be felt all at once. Then, as you say there are other emotions, like the relief that he is not suffering now, and you have been feeling the pain of his suffering for so long. For me, I felt an irrational guilt that I had been unable to save my father. I am only just letting that go, and it still ambushes me at unexpected moments. Each of us experiences grief in our own way, sometimes different than what we thought it would be like or different than what other people expect. I think this is alright.

 

[Paty]

I am very sorry for your loss Emjoi

I am very sorry for your loss emjoi, may God bless your father and your family.

May he rest in peace.

Sincerely,

Paty
Husband's Caregiver
Baja California, Mexico