@fred1 I lost my husband to this horrible disease in February and i'm still very numb from it all. The last 6 months of his life ( 1 week on hospice before his passing) were the hardest because I had to admit him to the VA hospital for his care because I could no longer manage his violent physical outbursts. and wasn't able to visit him as much as I wanted, due to him being 2.5 hours away, all while caring for my 98 year old mom. I haven't sought any support groups (yet) other than the support of my friends and family. They have been great by listening and just let me cry, vent, be angry, etc but I know I need the support of others who have experienced the same as me and vice versa but im just not there yet and really don't know why? Maybe because I don't want to re-live what this did to us? And just want to hold onto the (short-lived) memories I have? We met in 2011 and married in 2020 and he was diagnosed in 2021. I have all this time on my hands now without having to worry about him or keeping my life on hold TO take care of him ( which I would do all over again). Because while he was still here, I had a purpose to get up every morning... now I'm trying to find a purpose now. Yes, I still have my mom here, who by the way is still very mobile..can do her own laundry, sews, makes rosaries, still involved with her lady's group with lunches and other outings, so yes, that is a purpose as well,, but it's just not the same. I dont' feel like I'm needed as much and I want that feeling back, as wierd as it may sound. Because if I could be the caregiver to him again, that means he would still be here, I miss him SO very much every day and not sure how to go forward without him. Maybe over time I will seek our a support group.
If anyone has advice/suggestions for the grief I'm experiencing I would appreciate it!
Love and hugs to all