I just read the article here on Self care and grieving, and I encourage all of you who are caregiving to read it. My husband died in November 2018, but my grief started long before that as I lost pieces of him for about 3 years, and then a sudden and drastic decline for the last six months. Every emotion possible crowded out my ability to care for myself. There was not time for real rest, and my physical strength was exhausted as I needed to help him ambulate-getting him into a transport chair, onto the toilet or shower bench. Those who came in occasionally to give me a break, eventually, were not able to do more than just visit, as they were not prepared to offer the intimate care required. I was criticized by his family for finally placing him in a skilled nursing facility after several very violent nights, them saying I was abandoning him and it was a death sentence. He was there only 4 weeks before his body began to shut down and he was not able to eat. He passed away 26 hours after bringing him home into Hospice. It was peaceful and I am so grateful for the Hospice team. All of those feelings, those deep emotional scars are haunting me now, but I am in Hospice counseling and dealing with major health issues. My take away for you all-take care of yourselves in every way possible. It's as though you are caring for an infant or toddler-sleep deprived, eating on the run, cancelling Dr. Appointments and too tired to even go for short walks-BUT looking back, I would do some things differently. I would take advantage of a family member's or friend's visit-asking them to "sit" with my husband long enough to let me go for a walk, take a nap, keep a Dr. Appointment and/or have a healthy meal. A few hours of refreshment would have meant so much and I failed to realize the importance of that. And so, after six months I am grieving (giving myself permission to mourn), and dealing with financial disaster, but I have such kind friends and family. Life is lonely and there are moments of such deep sorrow. I grieve for the man he was and for the man he tragically became. He would have hated how his dementia changed our lives, but I know he wants me to move forward. I do that for myself and for him.
Thank you for a very touching posting. Yes, I bet there are many of us here on the forum that would have done things differently, I know I would. But we are placed into a job where we have no training, all trial and error, thus little "me" time. If only we could have a crystal ball.