So many posts remind me. . .

My heart aches for everyone who is caring for a LO with this terrifying & heartbreaking disease. My husband Lonny’s suffering ended August 12. 🙏

@ghphotog, Like you and @SDianeL, I read the posts from those not as far along in the journey, and I pray for them to find the strength to endure what is yet to come. We, too, are nearing the end of our journey with no way of knowing whether it will be a few weeks or if we still have months to go. DH took a sudden downturn three weeks ago, but is still eating. He seems to realize that he is dying. Per DH's request, a clergyman came to his facility today, and DH was baptized into our faith. The desire to do this came about only in the past couple of weeks. He is preparing to leave me, but God only knows when.

Right there also, reading posts and know we are closer to the end but still feel it could go another year or so. Have hospice on board and DH is starting to have issues with swallowing. Has had a cough right after eating/drinking for about three weeks and nurse suggested thickening drinks. I don’t know I want to do that quite yet but may need to before too long. This coming January will mark ten years since I noticed symptoms and knew something wasn’t right.

I am saddened at how very long it takes for people to die from this illness. It seems like it doesn't happen until the last dollar is extracted from the family's pocket and the emotional and physical health of the surviving loved one is compromised beyond recognition. Truly, this is inhumane for all of us.

We are 8 years from diagnosis and 12 years since the onset of symptoms. It seems like it will never end. It is so cruel.

Exactly! I feel like the hamster on the wheel, moving but not getting anywhere. I've much to be thankful for even though we are nearing the 11th year from when I first noticed my DH's symptoms. He has recently without fanfare ceased driving, is generally easy going and even tempered, but we also have no life. And as you said, "there is no answer."

Reading all the posts from the new people and the rest of us makes me sad. I’ve been on this forum for four years and the line of people newly diagnosed never ends. Meanwhile the front of the line just edges ever so slowly to the finish. It’s as if the line is constantly growing in size. We help each other, but there’s no cure. There not even a good organized system of help, just each of us recreating the wheel. Because we ( this country) have been taught to think we should be able to handle what comes on our own.

Almost six months into Stage 8. We were 15 yrs. from my noticing and 12 yrs. from diagnosis. My son was sure his dad had 2-3 more years. DH was in MC six mos. physically healthy, continent, fed himself, angry, combative and could speak his mind. The end lasted seven weeks. It was stunning how rapidly we got to the end. I remember standing at his bedside after he passed thinking So, THIS is how it ends? Really?

I too read the posts. The amount of new people coming to the forum for help! And the ongoing journeys in all stages. The cruelty of the disease for loved ones and caregivers! My heart breaks.