I seem to care more than he does

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beachbaby

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My dad and I talked last night and he's afraid that his speech may be going. I told him that we need to start making some plans and he responded that we don't need to do anything. He doesn't want to live if he can't talk. That is basically what he is saying to me. I don't think he would ever take his own life because he knows that it's a mortal sin, but it scares me anyway.
I pray for him everyday. At bible study on Wednesday night our group prays for him. On Sunday mornings I go up in front of the Church and kneel, sobbing my eyes out with a Church elder and pray for him. He doesn't deserve this.
I feel so helpless. He sits in his house everyday and never gets out. The most he ever gets out is to go to Walmart. I am frustrated and I just don't know what to do. I also feel so guilty for getting frustrated, because he is the one that is going through this.
I just needed to get this off my chest. It is nice to have people to talk to that can relate to anything that comes with this horrible disease.

Dani
 

califsand

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Dani,

My dad was like that at first too. If he couldn't talk he didn't want to live... then he couldn't talk so it became if he couldn't eat he didn't want to live...well when that happened he chose the next thing and then the next. He even went so far as to plan his suicide and picked a date for it, told the family, spent a goodbye weekend with us and then couldn't go through with it. He has learned how bad he wants to live, even as he loses one thing after another. Your Dad is just beginning the process and it is going to mess with his pride, constantly, but he will eventually adjust.

You don't care more than he does, he just isn't ready to talk about it yet. Maybe letting him know that you're there for him and that you're only asking these questions because you don't ever want him to be without the ability to make choices. Maybe writing him a letter or an email that explains that you love him and that you just want to find out what he wants to happen as he gets sicker, while he can still tell you. Even if he writes or types it and puts it in a drawer or something, at least you will have it when you need it. Tell him this and if he doesn't respond right now, try not to let it hurt your feelings. Some poeple can be really open about their dying and others can't...or at least not until they have accepted it. It's not about you, it's about his fears. It's frustrating for you and it will get even more frustrating as time goes by (my father has been very difficult) but that's natural. You're human and you love your dad, try not to feel too guilty for having an emotional response to what he and the rest of you are going through. Easier said than done, I know that I feel like dirt every time I lose patience or get frustrated or hurt feelings, but it's an important coping mechanism that you need to incorporate for yourself.

Hang in there!

Sandy
 

CindyM

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Hi Dani. Your post reminds me of how much ALS affects the entire family. Wish it could be different but at least we have each other. Yuor Dad may be trying to overcome years of feelings that he has developed for himself regarding how he defines himself as a person. Eventually he may be able to see that he is not really changing, no matter how many abilities he loses. Cordially, Cindy
 

beachbaby

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Thank you

That is a wonderful idea to have him write down what he wants as he progresses. He has always been this tough, biker, hard as nails kind of person. He's a veteran as well, so the fact that he has to rely on other people for anything is just horrible for him. I can relate, I am just like him. I just need to have more patience and deal with the fact that I can only do so much. I love him so much and hate to see my big strong dad reduced to this man who can't even open a bottle of water without help. Thanks again for your support and encouragement.

Dani
 

califsand

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Dani, I know exactly how you feel. My Dad was a big strong fireman, later a bodyguard, a contractor, etc... always strong, tough, independent and unstoppable. I understand how hard it has to be and it really is important to help them preserve their pride, but it's up to us daughters sometimes to help them face the reality of the situation and encourage them to plan. This way, they have control over things, even later when they need more help. My father named me as his agent of his last will and we detailed his wishes there, for legal purposes. This was really important because I have several siblings and we all have differing opinions on things, plus Dad knew that I would always keep HIS best interests at the top of my mind. Just some things for you to think about and mention to your Dad...
 

Lorie

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We Do Or Best

We Do Or Best! We can only try to support their wishes. We see but we don't know
how they really feel deep down in their own spirit and emotionally.

When Tim and I had his Living Will done. The Lawyer informed us that I can carry out his wishes as far as I can. But the Doctors can step in and make other recommendations. As if its in their hands at the end. ...I would just have to agree with it.

Its hard all around! I just conentrate on enjoying Tim's Life everday. And making it the best as we can, out of such a horrible sentence on a Disease. If we consume negative thoughts everyday. Then thats what we get out of a precious day gone by.

Anything he asks for. I get it!

Lorie :-D
 

MtPockets

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Dani, this hug is for you. I know you need one with all the pressure and stress you are facing.

God Bless
Capt AL
Jesusgreeting.jpg
 

The Sass

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My mom lost her voice after 5 months being diagnosed. There are some things I wish I had known that would have helped. She does have a Dynavox4 but the voices are somewhat odd sounding. I would have helped had we known about voice banking and could have had her voice to program in. Please take advantage of this technology. I believe it would have made things easier for her and also would have help my dad to understand. He is a little hard of hearing and you sometimes have to really listen hard to understand the mechanical words. The voice goes fast so try to talk him into acting soon.

sass
 

califsand

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My mom lost her voice after 5 months being diagnosed. There are some things I wish I had known that would have helped. She does have a Dynavox4 but the voices are somewhat odd sounding. I would have helped had we known about voice banking and could have had her voice to program in. Please take advantage of this technology. I believe it would have made things easier for her and also would have help my dad to understand. He is a little hard of hearing and you sometimes have to really listen hard to understand the mechanical words. The voice goes fast so try to talk him into acting soon.

sass

Sass, the dynavox systems are awesome! There are features that allow you to change the voice, slow it down, speed it up, etc... it's pretty easy to do if you play around with it for a little bit.
 
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