Lovely post. Reminds me of the time I spent caring for my mum, before she died last July. her condition was much the same, fluid around the heart. We knew she was on borrowed time but she hung on for almost two years. Although I'd moved 90 miles away from her and my family, I visited every other week for at least a week each time to care for her and talk about old times.
Towards the end she had been in hospital for six months and during her last month I was asked if she should come home or go to a nursing home. I let mum decide, so she came home and I agreed to stay on while the care package was set in place, I ended up caring for her for 2 weeks non stop.
The care providers where horrendous, I can't believe what I witnessed, from almost over dose on medication to not respecting her dignity. The care manager even had a tantrum during an assessment, all because I had dived in the shower after the carers had been. I knew mum would be okay for ten minutes and as mum wasn't able to get up to answer the front door, so I quickly divided in the shower.
When I got out I could hear voices, so I quickly got dressed (still wet, no time to dry) to see who was down stairs. I found a care manager in the lounge and when I asked who she was and that we weren't expecting anyone, she went mental saying, "She didn't need an appointment" When I explained that it would have been helpful to know when someone was due, as mum was too frail & unsteady to answer he door. She threw the case notes across the room saying "She was ending the assessment" So I threw her out, as this was not fair on mum or me.
I doubt all are providers are the same, and maybe because I have worked in the care sector, I was expecting better service than what we got. You sound like me and would protect you mum to the end. Despite my siblings accusing me of doing the wrong thing in letting mum come home, and not stay in hospital. She had a good two weeks in her own home, with family, friends and district nurses she knew popping in, people she wouldn't have seen if she'd stayed in hospital before she died.
Cherish the time you have and had with your mum, my thoughts are with you.