I'm sorry that you're going through this. I've been following along and feel that I must also be blunt. My apologies in advance for the nature of the content, but you need to be prepared for the potential realities of trying to care for someone who is close to the end of their life in your home with little to no outside assistance from medical professionals.
When my mother was dying of cancer at the age of 48 in 1989/1990, she insisted she wanted to die at home. No one mentioned hospice or any other alternative of care to me or my grandparents.
It was pure hell, for us and for her.
My grandparents and I weren't trained health care professionals, but we were thrust into the role of trying to be nurses 24/7. To complicate matters, the last 10 months of her life, my mother gradually became paralyzed from the waist down. For awhile, we had to lift her from the rented hospital bed to the potty chair. This nearly resulted in injury, for both her and us.
As her decline continued, there was a trip to the ER, then a 3 1/2 week hospital stay, in which she had to be catheterized. She wasn't expected to make it out alive. One doctor asked how we were managing her at home. He expressed concern over the difficulty we had trying to lift her to and from the potty chair, but he offered no solution at all. Much to everyone's surprise, despite some close calls during those 3 1/2 weeks, she was discharged and sent home with a catheter that needed to be changed once a month by a home health care nurse.
That's the only time we ever saw the nurse, for those few minutes once a month.
We had to regularly empty the bag of urine, which was foul because she was bleeding from her bladder. Cleaning up her bowels was difficult because she was paralyzed from the waist down and couldn't be of much help in the process.
This became less of an issue when she couldn't keep anything down anymore, which came with it's own challenges, until she started slipping in and out of consciousness. The home health care nurse told us not to worry about it because she was near the end anyway.
We had to try to treat bed sores that had actually started during her last hospital visit and quickly worsened, despite all our attempts to at least halt their progression. A dime-sized area that looked like a minor rug burn turned into her entire buttocks eaten away over the course of 4 months. Regularly turning her, spraying the area with Granulex, all amounted to nothing. We went through several cans of that stuff each week! The home health care nurse would look at the progression each month, wince, and just tell us to keep turning her and spraying with Granulex.
Worst of all, for her, was the pain. When she couldn't swallow medication anymore, the doctor prescribed suppositories. It was hard to know how much to give her when she wasn't always conscious. She had gradually lost the power to speak even when she was conscious.
We knew that she was dying, but we didn't have the knowledge or the equipment to keep her comfortable. She suffered more pain than necessary, IMO. In a care facility, or with more than just a few minutes of home health care a month to change a catheter, she could have had her pain managed better. They could have kept her hydrated and whatever else is available for comfort care.
When she was home, it was like, "Out of sight, out of mind," as far as the medical professionals were concerned. It was worrying. I was reminded of that when you wrote about your frustration with the doctors and how you can't get straight answers about your mother's medications. I can almost feel how they're trying to just get your mother out of their hair and into your home, where it might become much more of a problem than you can foresee right now.
I realize that your mother isn't paralyzed as my mother was, but she appears to be losing interest in being mobile, eating, and making decisions about her own care. If she doesn't remain as mobile as she can, she's going to lose the ability to be, and that's going to create some of the same issues that we went through trying to care for my mother in her last months. Not eating, yes, she'll get weaker. Are you prepared to risk injury to yourself trying to pick her up off the floor?
And, yes, it can go on much longer than you'd think possible.
A shorter anecdote: My step-great-grandfather spent the last year of his life living in our home. He was 99 and almost made it to 101. He walked pretty fast with a walker. One day he went to bed because he didn't feel quite right. He didn't want to be taken to a doctor or hospital. After that, he only left the bed to go to the bathroom. Shortly, he couldn't do that anymore and in came the potty chair. Then came the falls. My grandfather almost hurt himself trying to pick him up the first time. Next time he fell, an ambulance was called and he was taken to the hospital, where he died that night. Time from taking to bed to his passing was about 3 months. It was a long 3 months.
A commonality between my mother's last months and my step-great-grandfather's last months is that neither of them would sleep much at night as it got closer to the end. They'd sleep/doze during the day and be awake at night. I had to work during the day and my grandparents, although retired, kept daytime hours, too. You can love someone, yet feel an incredible amount of anger and resentment over the situation when you're regularly not getting enough sleep.
