<p>Our hospice explained that many people become very uninterested in food as the end nears. It was certainly that way with my dad. I think that while it was somewhat upsetting to some of us, he had just mentally moved past any need or desire for food. (He had cancer, not dementia.) His priest and the chaplain at the hospice were both a great comfort. I hope your family also gets support, and that your hospice is as helpful and kind as ours was.</p>
<p>How hospice works varies by community. My FIL stayed in the nursing home and had hospice nurses come to visit every so often depending on his needs. My SIL contacted hospice first and they came out to do an evaluation. </p>
<p>In some areas, there are more than one Hospice organization. If you have a preference, ask them directly about working with a patient in XYZ facility. Communication is always good to get the coordination and what your loved one would want to have carried out.</p>
<p>My mother had hospice coming to her, first in AL, later in her NH room, where she spent the last two weeks of her life. They oversaw her comfort measures, provided family with info and support, particularly encouraging us to talk to her, or hold her hand even after she was unable to speak, and helped us identify when the end was near. They offered “sitters” also, volunteers to always be in the room with her, though as a family, we had that covered and declined. Also offered someone to come play soft guitar music. Family has lots of choices. They were very good at keeping her comfortable. </p>
<p>It is hard, but with support, a very important, meaningful time. It was a chance to go all the way with her. All the best. </p>
<p>Agree that having support for family member as well as the one who is declining is important. Hospice and palliative care can help make the last weeks or days much more pleasant than they would be otherwise. A friend made a tape or CD of herself giving her mom loving messages when the friend had to leave town and couldn’t be at mom’s bedside. She had friends come to hold mom’s hand and play the messages. This helped both the mom and the friend who was 2500 miles away.</p>
<p>Have noticed that some folks as they age develop both hearing loss AND cognitive hearing loss (they can hear the sounds but processing and making sense of the words takes SIGNIFICANTLY longer). It may appear to be a hearing loss but it’s actually more, since the brain is taking more time to understand the sounds and make sense of them. When they also have trouble hearing AND have trouble making sense of what they hear, it’s all that much more challenging for them and we, their loved ones.</p>
<p>There is also both vision loss and cognitive vision loss. The first is where the person just can’t see as well as before, but it can be corrected to varying degrees. There is also where the person can SEE what’s there but becomes unable to make sense of too much visual stimulation or has trouble processing/making sense of what is seen (like too much written, e.g. menus with lots of lines). </p>
<p>For our loved one, we noticed the drop off from being an avid reader to reading only large print magazines to now not being able to read a menu and make any sense of it. It’s isolating and tough. When they also have auditory losses, even books on tape doesn’t help very much.</p>
<p>Often when people gradually lose cognitive abilities as HImom describes, they are still able to respond to music. Playing some favorite music for a declining family member is one thing to try.</p>
<p>Thanks–yes, she still does love opera, but doesn’t seem to play other music. She did enjoy the nightly string quartet when we were at Yellowstone.</p>
<p>They are suggesting palliative care instead of hospice because she has 30 days left of Medicare coverage and that would disappear if we went the hospice route. We would have to immediately start paying full freight at the nursing home if we elect hospice care. She has the money and is something we are willing to do if warranted. I am confused about palliative care. What more does palliative care offer then what she is already receiving at the nursing home? Lately she is parked out by the nurses desk in her wheelchair sleeping off and on with little interaction from anyone. We have a face to face meeting with the nursing director tomorrow so if anyone has any questions I should be asking then fire away. Tks.</p>
<p>IMO, it’s not that the palliative care people CAN do things the nursing home doesn’t do; they can, but probably in the case of your mother they wouldn’t do the more aggressive treatments that would be appropriate for a different person in a different situation. It’s more that the palliative care people may have a slant on the situation that mirrors the slant you have: how do you make your mother’s remaining time as good as it can be.</p>
<p>I’m a big fan of palliative care, but I’m not clear on what it would be offering to your mother just at this point. I get the impression that palliative care deals more with medical issues, whereas hospice care is dealing with the entire dying process. So, for example, palliative care specialists know about drugs and medical treatments to ease discomfort, and that is important, but hospice people also consider the non-technical parts of the dying process.</p>
<p>Fang, Medicare does cover hospice. The problem is that the SNF Medicare claim is for rehab, and when you start hospice, you’re no longer rehabbing. So you become private pay for the room and board. Medicare would pay for hospice medications and doctor services.</p>
<p>She was admitted to the nursing home from the hospital. Medicare will pay for 100 days in combination with her private insurance for the nursing home. The nursing director told me that Medicare will stop paying for the nursing home if she starts to receive hospice care. We are willing to be full pay for the nursing home if hospice is the right decision. Just trying to understand the difference between hospice and palliative care. Medicare will pay for the additional hospice charge.</p>
<p>Knit, is she terminally ill, there’s a named disease or syndrome? Would a doctor attest that she is in the probably last 6 months of life? Or she was being treated in LTC to recover from a temporary condition, post-hospital? </p>
<p>Palliative is compassionate care in conjunction with curative. Hospice is compassionate (palliative) care without treatments meant to cure, when a person is predicted to die within months, if they stop further treatments. </p>
<p>It IS hard to follow. The staff should help you understand her exact Medicare coverage and how what she is being treated for there fits the definitions for hospice.</p>
<p>The difference may be this: If she is in the LTC to manage a condition or complete recovery from the hospital stay, and she decides to stop treating the condition, there may be no need then, technically, for the LTC. </p>
<p>Maybe use your meeting to determine rehab’s comfort seeing your mother through this phase. Is Medicare likely to challenge her appropriateness for rehab if she continues not to eat, is weak and bedridden for example? Is there any medical info that helps to know time frame? If it were me, I’d want relative situated for the duration if possible, to minimize disruption. I would ask if rehab has prior experience with patients in this situation. </p>
<p>If this checks out to your liking, then perhaps you could speak with palliative care about their role, specifics about what to expect, difference from hospice, etc. Does the rehab place have a NH or a NH that is affiliated with them? </p>
<p>Hope you can get your questions answered tomorrow. It will help to have a plan and assemble the team. </p>
<p>Fang, I don’t know the exact definition of rehab, but as it was explained to me, “Rehab means we’re trying to get him better.” Obviously at the point hospice is brought in, that’s no longer the goal, so the Medicare rehab claim ends. </p>
<p>ETA – Knitkneelionmom, I’m so sorry. This is a tough passage, but it can be done so that you and your family have good memories of it. It sounds like you’re in good hands, which makes all the difference. If I had any advice, it would be to do what you can to give your mom the gift of a graceful exit.</p>
<p>Loss of appetite is very normal near the end.</p>
<p>Yes, LM, rehab involves the hope/expectation of progress towards goals. It is considered active care, as opposed to “custodial” care. There must be a better word than that- I hope it is no longer used. That said, sometimes it is effort and time spent in a skilled nursing rehab that reveals it is no longer possible or likely that a resident will return to their previous functioning or level of independence. </p>
<p>Rehab and hospice seem to have inherently contradicting goals and methods. How palliative care intersects with that is beyond my experience. There are pragmatic ($ and insurance coverage) aspects of the rehab hospice dichotomy as well as philosophical ones. I would not want my relative encouraged to do physical therapy if she was focused on the dying process and disinterested in PT, for example. Medicare has specific criteria for covering a rehab stay that should be assessed here. </p>
<p>Knitkneelion, perhaps you and the nursing supervisor can focus first on exactly the care your mother needs to have right now, given her prognosis. Once you decide what needs to happen, you can figure out the best way to deliver it, whether palliative care in the nursing home, or hospice in the nursing home, or something else. Since you say that your mother is lucky enough to have the means to pay for hospice should that be the right choice, you can focus on making the right choice.</p>
<p>We’re all wishing you the best as you navigate this difficult passage. </p>