I'm meeting tomorrow with my LO's primary (as he examines her. He sees her twice a month at the MC facility) about the most recent progression of her condition. (Severe Vascular Dementia.) She's recently started leaning, sleeping more, not talking much, and stopped reaching out to feed herself. Only eats if food is put to her mouth, and has stopped using feet to propel herself in wheelchair.
She's recently been treated for UTI and upper respiratory infection, but, that should be under control now. The ER doctor said the infections would continue though. I have had 2 ER doctors ask me if I had considered Hospice. I'm not sure the Primary is unbiased in making those evaluations, but, I'll know more after I speak with him. Since a Hospice doctor takes over, wouldn't that mean the Primary loses money on patients who go into Hospice care? I know that sounds bad, but, I'm just being realistic.
Even if we are not at Hospice stage, I'd like to address things like Geri chair, mattress to prevent skin breakdown, physical therapy for legs, etc. Don't the doctors have to prescribe things like that for Medicare to pay?
ANY SUGGESTIONS for things that I should ask about would be appreciated. I intend to insist on Palliative, even if Hospice is not an option. (She hasn't lost weight or stopped eating.) I've said we want Palliative Care for years, but, I'm not sure if they are getting it.
Alternately, what are other steps that can be taken, and how effective would they be, and for an approximate period of time, i.e., are they just "bandaid" treatments?
I'm so sorry to learn that she's having such a difficult time. I hope you get some clarification, but if you don't, are there other doctors you can ask? Is the doctor you're seeing (today?) a doctor for the facility who rounds there, or one of your team of outside doctors?
If something came up that you would in the past have taken her to a doctor or the ER, would you want to take her now, when the doctors there is nothing more they can do for her underlying health issues? What would she want? Talk to the doctor about the routine visits she had used recently. Do any of them provide comfort? If she stopped having blood tests, would she feel any worse?
It's a lot to consider. I hope the meeting will give me more piece of mind. I just want to keep her comfortable.
One more thing that I thought of. What are the options for taking her to the ER for infections? The ER doctors have suggested Hospice. How is that handled differently? I'm trying to avoid having her transported by ambulance to the ER every few weeks to get blood tests, chest x-ray, EKG (even though she's DNR) and IV fluids and antibiotics. She is terrified, in pain and crying out. It seems so cruel. I don't know the options. Maybe, put her on a regular antibiotic? I know that presents another set of problems though.
From my point of view, people in a nursing home with dementia are essentially getting palliative care. No one is expecting them to get better and no one is treating them to "cure" them. What would be different, do you think, if her care is officially labeled "palliative care." If your loved one were at home, one difference would be that she wouldn't have to go to medical appointments -- they'd come to her. But that is already the case for her, isn't it? And the downsize is that she isn't allowed to leave her home except for religious services. But it doesn't sound like that would matter to her -- or would it? I'd ask exactly how palliative care would be different from what she is getting now? And then I would ask how things would be different if she went on hospice care. My mother was on hospice in a nursing home. She got lots of extra attention, a geri chair, a special mattress to prevent bedsores. I truly think extra care from hospice enabled Mom to improve enough to be discharged from hospice. She lived two more years, in relative contentment.
My husband was on first palliative care and then hospice, in our home. I'm sure it depends on the individual patient and their medical history and whether they are home or in a care center and lots of other factors, but I really didn't see any benefit to it for my husband, and the rule about not leaving the house was ridiculously restrictive as far as I was concerned. Of course he wasn't well enough to go out much, but I did want to take advantage of any good days for short outings. That was in October, peak leaf color season, and I simply took him out, in his pajamas, to view a magnificent area that we'd done every year. I parked often and took pictures. He never got out of the car. That was against the rules but good for his spirit. And if anyone ever asked, I would explain that we were Druids and tree worship was part of our religious belief. :-)
I'm just sharing my own experiences, and not suggesting what your decision should be.
As to whether her PCP can be objective, I think you'll get a sense of that when he explains his reasoning. In most medical practices there are always patients leaving for one reason or another, and always new patients enrolling. I doubt many doctors worry seriously about losing income when a single patient leaves their practice.
I am in this thing alone with my cousin. I have no one else to help or bounce ideas with. I know that here, others have gone there before.