Another step down

CatladyNW · October 13

Since his stay in the ER, my DH has continued to deteriorate. Before, he could speak a little and was able to recognize me and say he loved me. Now, he is not speaking, is eating very little, and sleeping pretty much all of the time. As I live 3 hours distant from the MC, it is devastating to make the trip and not have any communication with him, but I want him to know that I have been there. I have asked Hospice what to expect, and they answer that it could be days or months. It has been such a long road, eight years since he was formally diagnosed with Parkinsons and dementia shortly after. He has been in MC for over 2 years. I thought I would be numb to it by now, but every step down brings fresh pain and grief. Just needed to vent, no one understands this except those who have lived it.

M1 · October 13

I'm so sorry, I do understand... I will be devastated when that day comes for us and it's not too far distant. For your sake I hope he doesn't linger.

Biggles · October 13

I too am on this terrible journey and no one understands unless you have travelled this road. Talking to those that understand is the only relief I have, family are so kind, Doctors try to be practical but this is a hideous awful illness with so many plateaus. My DH suffers with VD and aphasia he was always a talker and now when the words come they don’t make sense. His sleeping pattern is so bad I’m now sleep deprived and feeling awful. The road seems so long and hard I cry and weep on my own and I love him so. I feel guilty for wondering how long does this go on for.