How to make peace with Dad's decisions

[samsmom]

My Dad was just diagnosed. In fact we are having our first follow-up since hearing the news tomorrow. We have talked briefly and all he keeps saying is (1) he doesn't want to live with me and my family because he doesn't want to be a burden and (2) no ventilator. He doesn't quite understand the ventilators PALS use so I can't quite tell if he's referring to no ventilation in the hospital or no portable ventilation.

He's 86 and it's an unusual age for an ALS diagnosis. I am struggling with allowing him to make his decision and wanting him to be around. He is still mobile, though quite frail due to extreme weight loss. His speech is getting pretty bad but is still somewhat understandable.

Right now I am investigating care alternatives. It will be difficult for him to stay in his apartment without round the clock care and I have a young son that I also need to care for.

I can't fight with him. He's an adult. Any advice from anyone who has btdt? I realize there are not many

 

[affected]

hi samsmom, so sorry to hear about the situation.
I can't quite answer to how you are asking, but my husband PAL is fairly newly diagnosed also and fiercely wants independence.
I applaud this, but it's really hard to listen sometimes to some of the things they draw a line at.

I'm so new at this too, that others will likely have much better advice, but I think that if you can find as much information as possible on options, including information on ventilation and get appointments to have as much of this explained to him by someone, then he may feel that he has a little more control in making good choices.

I will be interested to read how others who are further down the track have dealt with the 'not wanting to be a burden' or 'ruin lives', as my PAL is already talking of going in to care rather than me have to care for him when he reaches that stage and that distresses me. I hope he will change his mind as things progress, it could be part of the awful process of trying to accept the reality of the diagnosis.
I know I struggle with odd things that I can put down to that process in myself.

 

[Barbie]

my dad is 86 and healthy (for a man his age) and he is impossible to deal with--I feel for you adding ALS to that ! Have you sat down and asked him what he would like? he must have a sayin his care unless he has dementia. he will not be able to care for him self for long at all, so give him the options you have looked into and ask his opinion.

 

[caldona]

I am not 86 but I have als and the decision not to vent or have a feeding tube is mine and so far I have said no to both I may or may not change my mind but that is my life and my decision. I don't mean for this to be negative but it's how I feel

 

[pearshoot]

making this decision early in diagnoses is impossible. i will wait until last moment to install and determine where i am in this process. if i have what i believe some quality of life will have it installed, if there is abslutely nothing left will pass. sure each of us measure quality of life different

 

[affected]

and I think our measurements change as the situation changes too ...

 

[pearshoot]

pals making this decision when newly diagnosed is unfair to cals and family. you are in this journey together. hopefully a mutual decision can be make when time comes but the pals must have final decision

 

[Katie C]

On the other hand... Glen made his decision early in diagnosis and made it very clear to both me and our son. As his dementia progressed, he was simply unable to answer such questions ( FTD causes an inability to see cause/effect from such choices) Because he was so clear and insistent on his decision early in his journey, we felt both compelled and validated in following his wishes.

 

[pearshoot]

you made the journey together and to me a mutual decision. very sorry for your loss. peace be with you