HI! My dad is so sick. Almost 88yo. The doctor recommended Palliative Care today. Yes or No? He is Delusional ALL THE TIME now. People trying to get him 24/7. They have metal legs and come and go out of his closet. 3 kids. They do nothing but sit and stare at him and follow him w/ their eyes around his room. They ALWAYS have an evil smile on their faces. He left his AL room the other night and went around the back of the building and tried to dig in the dirt by the fence trying to find out where/how they were getting into his room. He has pulled the fire alarm in the middle of the night and called 911 to report them cuz no one believes him in the AL. I have been bringing him home to my house at night to help get thru this but he doesn't wanna be a burden on me so he wants to stay in his own apt. I have tried so many meds in the last few months to try and help But I think this might be his new level of sanity. His ankles are swelling up like balloons and he can barely walk; he hangs on me, the walls, the chairs, he's bent over his walker, pushing it w/ his elbows. For one reason and another, I'm the only one who has been w/ him in 3 and half yrs. Since I work from home I was able to take him out on an outing every day for that whole time and what a gift!!! He was/is so much fun! We laughed til my mascara ran everyday! But the last 4mos his health has been really bad. Drs visits all the time. Blood tests til his arms are purple;Every scan known to man;Hospital stays and hrs in the waiting rooms. He said he is done! Now that I'm done venting~~~ What about palliative care? Is it paid by insurance? Is it the end of the line? Are they kind to him? Is he drugged? Will he recover? Does he stay in his AL or is he moved to a hospital setting? Thank You all! I have been reading here for the last 5mos and appreciate what everyone who cares for the elderly are going thru.
I'd also be quite concerned with his behavior of leaving the facility at night. Is there anything to prevent him from leaving your house in the night? I'd explore Secure Memory Care facilities. His doctor may need to prescribe it based on his symptoms.
My LO receives palliative care. The family can devise a plan with the health care provider as to what treatment, meds, procedures, tests, etc., that they wish to receive or avoid. For example, many people on palliative care do not get cancer screenings. The goal is to keep the patient comfortable without lots of procedures and tests.
My husband, Coy, went on palliative care. As I remember that meant he would not continue treatment for the condition that put him in the program, but he could for anything else. So, for example, he would get not treatment for dementia, but they would treat pneumonia or CHF. I think this is what Sunny is talking about with the family making a care plan.
At least within the network we belonged to, palliative care is for bed-bound people, and one of its benefits is that the care comes to you. You are not expected to get dressed, transported, and sit in waiting rooms. Great. But the downside of that is that the patient is expected to not leave the house, except for religious services and a few other exceptions. When Coy was on Palliative Care we were at peak fall color. I took him out (in his pajamas and slippers) and we drove around a particularly tree-rich neighborhood. If we got "caught" I planned to explain that we were Druids and we worship trees. Never got a chance to use that excuse, though. One woman I know who was on PC missed a special family event because of that rule, but I think that would have been one of the exceptions. But do be clear on this aspect before you sign up. If Dad has a good day, will you be able to take him out for ice cream?
The man and the woman I knew on PC did go on to Hospice Care. My husband did, too. Frankly, I don't see why any of these people couldn't have gone directly on Hospice.
The Palliative Nurse was trying for 3+ weeks to get a hospital bed. Lots of red tape delays. I signed the Hospice agreement at 3:30 in the afternoon, and by 7:15 that evening a hospital bed was set up in our bedroom. Hospice cuts through all the red tape.
But whether you dad agrees to palliative care, or hospice, or retains his present status, getting him out of his extreme distress would be a primary goal. I know you have tried lots of meds and lots of exams, etc. Maybe there is nothing left to try. But if he hasn't seen a geriatric psychiatrist that is worth a try. And I know of many people with dementia who went to a short-term residential program where medications were experimented with under close supervision. I think I'd try that if possible, and then decide on next steps.
My heart goes out to you. This is extremely difficult for family.
Of course, your fathers own insurance may have their own guidelines as well. But generally speaking -
Palliative care can be used with a serious illness that may or may not be terminal. Many will allow the on-going treatment for the illness- my fathers did. Palliative care can go hand in hand with a care plan that is curative in nature or the goal can be focused on providing comfort care only.
One good indication that palliative care should be considered is if the person is having somewhat regular trips to the ER to address the condition. This was the situation with my father and just getting him to the ER made things worse in that getting him dressed, to the car etc took even more out of him - ambulance rides weren't much better. Generally, with palliative care - they will come to you.
My father had no restrictions on if and when he left his apartment but as ill as he was at this point he really wasn't going out much. We had no issues getting the things palliative care suggested but we did have to pay a minimal rent fee for the hospital bed. If I'm remembering right, daddy was visited once a week by a nurse. And while pain medication was more available to him - we were in control of how much and how often he took it. All of the care my father received through palliative care was provided in his IL apartment.
My father was not on palliative care long - maybe about a month when it was determined hospice would be a more appropriate level of care. But to be honest, I really didn't notice a huge difference between the two programs. In hospice all my fathers medications were discontinued with the exception of meds for pain and anxiety. These meds were available to us in mass but again, it was left for us - meaning me and my dad - as to when and how he took them. With hospice the meds and the hospital bed are at no cost - on palliative care we still paid, but like I mentioned, I do believe it was a reduced rate for the bed.
As far as the staff went - my father had the same care coordinator for both programs. I can only recall ever objecting to one nurse - and that was under hospice. I talked to a supervisor and the nurse was immediately replaced with one I liked much better.
I hope I've answered your questions- if not just ask and I'll give it a shot. I'll be following this thread to see how you are doing and how your poor father is getting along. The poor man must be scared - his delusions sound terrifying. Sunny made a good suggestion about trying a geriatric psychiatrist. My mom saw one and it was the most helpful thing that ever occurred regarding my mothers care. I wish I had gotten her in to see one years earlier!
Good advice to read all the fine print when signing up for this type of program. And - ask lots of questions. Lots of questions!
On a lighter note - it brings back a childhood memory. My mother saying to me "If you're too sick to go to school - you're too sick to go out and play."
Reading Jeanne's and Rainmom's experienced comments, it seems to me that the term "palliative care" is suffering from a bit of mission creep, with some contexts being very specific and others just descriptive. I think the best thing to do is call or go and see your father's primary doctor and get her/him to explain to you exactly what was meant and what would happen next if you were to agree to this.
So where did these rules come from? I've been doing a little research and I think I see. Medicare has rules about when they will provide home health services. One of the qualifications is that you must be "homebound" and they go on to define what they mean by that. That is right in the Medicare and You booklet we all get each year. I'm sure this is our mother's if-you-are-too-sick-for-school reasoning. If you can get to Walmart and the casinos several times a week, you can get into the clinic.
I suspect that some agencies/organizations, to be sure they will get reimbursed by Medicare, spell this "homebound" requirement out in more detail in the agreement patients sign. Perhaps other agencies just check a box saying "yes, this patient is homebound." Or maybe some private insurance (for younger patients) doesn't care if the patient goes out dancing daily. I really could only guess why this piece of palliative care doesn't seem to be consistent.
But anyway, Read The Entire Agreement is always the best policy.
I tell ya what~~ I wish I had gone into Geriatrics as a college student. Just not enough of them!
Off to take my dad to a thrift store to look at a box of tools for about 2hrs while I sit in the furniture dept working on my iPad! Wheeeeeeeeee!!!
There're all kinds of rules and regulations that go along with state and federal programs but it really boils down to the fact that if you are receiving help from public funds you can't just go on your merry way. For example if you are are on SSDI you can't go out and find another job without loosing at least some of your SSSDI
One thing you could do to get quick results is to contact your local hospice and ask for them to come and evaluate Dad. Even if he is not appropriate for hospice they will know of resource in the area to help him