A Blessing?

[bigritt]

Is it wrong that I find it almost a blessing my father has FTD with ALS? With my limited knowledge, it sounds as though there is much suffering with ALS as the patient is fully aware of everything going on. My father is now thinking like a child and can't concentrate. He laughs all the time and has very little idea of what is going on. I find this to be a blessing. Am I wrong to think that?

He is still walking himself, dressing himself, and going to the restroom himself. He did ask me to button his pants yesterday and there is no muscle at all in his thumb area. He has muscle spasms all over his body (mostly upper but definitely has some in his thighs). His secretions are getting noticeably worse as he never had to use a cloth before but now carries one on him all the time and uses it constantly.

The upsetting part is I really can't communicate with him. I'll ask him yes/no questions and I'm starting to realize he doesn't even understand them.

It has been exactly 1 year since his first symptoms and I don't think he will be here next year. This is so heartbreaking.

Lastly, what is kind of weird....besides all that is going on and all that he can't comprehend...he's still a typical male at heart because he's always referring in some way to sex. But perhaps that comes with the immaturity he's displaying with the FTD?

Blessings to all of you.

 

[Nikki J]

Hi
I think sometimes it is easier for the patient but harder for the caregiver. I knew a man whose young ( under 50) wife had FTD/ALS he swore she was happier than before as she had been a very much type A person before. I dread the possibility of FTD added to my ALS but maybe if it happens I won't care!

And yes the sexual component is certainly part of the FTD. Again hard on the caregiver especially if it is your parent

 

[affected]

Briggit.

Hard question to answer for your father, maybe it is a blessing.

For my husband it was not - he was paranoid, particularly towards me, he had no empathy towards me and he couldn't make good decisions but insisted on making his own decisions regarding ALS and only made his life far more difficult, painful and sped his progression. He was very unhappy, he was miserable in fact. And he made my life hell by nastiness, aggression (verbal until he couldn't talk then just by his eyes and lack of communication attempts), and his attitude that I should just suck it up and do everything because he would soon be dead and I could just go have a great time.

It is so difficult when you ask simple questions and they can't even answer them. Chris could sit and stare at nothing after a question until I would think he hadn't even heard me, then finally may nod his head (yes) whilst saying no.

 

[Katie C]

Tillie and I travelled very similar paths. It was like living with a 6 foot tall toddler who was in a perpetually bad mood. He had no capacity to understand what was happening to him or why, but he KNEW he was not functioning properly. And yes... that blank stare. It's been almost four years and I can still see it.