Mama

CareBear81

On June 29, 2023 my mama passed away at 8:22 pm. I had been her full-time caregiver for almost 7 years. During that time I was also a college student. I saw my mama everyday during her illness. I didn’t want her to go on the journey alone. She was on in-home hospice for almost 2 years.

The hospice my mama was with I feel let me down this last week. There were no bereavement services from a chaplain or social worker offered. The last time my mama’s RN spoke with us was when she came to pronounce that she had passed. Our social worker that we worked with monthly told me, “I’m out for the rest of the week.” I’ve been dealing with these new emotions without their support. I felt abandoned.

I finally became so upset with the thought that I called and talked to the director of the hospice. He kept talking about people being ‘out’ and the ‘holiday.’ I was under the impression that hospice is available 24/7. There’s more than one chaplain and more than one social worker. All I needed to hear was, “I’m out for the week but I can get you in touch with the other social worker to come see you.” No. There wasn’t any of that. I’m worried for other families who will be grieving right after us. Being without the hospice team was a big blow. I’m not sure if I even have a right to be upset.

LovingAwareness

Hi CareBear81, I'm so sorry to hear that you didn't feel supported by hospice when your dear Mom passed. Of course you have a right to feel upset. You feel the way you feel, and they are supposed to support you both during and after your Mom's journey, since you're journey is not over. Do they have counseling services you can go to and talk in person about your feelings? If not that hospice agency, maybe there are other Alzheimer's non-profit or area aging non-profits in your area that offer grief and bereavement groups? If you can find a good group to talk with that might help you. I lost my Dad last November and I was also disappointed by hospice at the time. They were great for my Mom, who died 11 years ago - they supported my Dad afterwards. Sometimes I think they do more for spouses than for other family members. It seemed that way for me with my Dad. It was also the tail end of the pandemic so that might have been a factor. My Dad was only on hospice for about a week before he passed, and that is much different than the two years your Mom was with her team. I can see why you feel abandoned by them after they cared for her for so long. I had a real trauma with my Dad and the memory care health team about a day and a half before he passed, and it's something I don't think I'll ever get over or be able to unsee. I think it involved something slipping through the cracks as far as his care and the coordination between hospice and his memory care team. I am not sure of this, not being a doctor or nurse, but I'm haunted that his last two days were harder than they should have been. When I tried to discuss it with hospice afterwards, I felt like they were covering themselves. It was over and done, and I was sad and tired, so I didn't push back or pursue it. I guess hospice is not infallible, or immune to the staffing and organizational challenges that seem to be everywhere now. I'm not going to be sending them any donations though. I don't have good feelings about them doing the bare minimum and not really showing up. I hope you can find someone to talk to and ease your feelings. You did the best you could for your Mom, and one day I know we will remember them with peaceful feelings.