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I think that we've gotten to the point where mom needs Hospice Care, maybe palliative as a first step. she's currently in the hospital and I asked for the Palliative Care team to evaluate her, because I want their opinion. My brother has POA, all three siblings are health care proxies, but I do the case management. POA brother is unsure that we/he is entitled to say "yes, it's time for Hospice". Mom has a DNI and DNR and wants no extraordinary measures. In June, when her heart rate dropped and drs told us that she would die without a pacemaker, we pitched the decision into her court, because frankly I thought it was a bad idea, but my brother and SIL weren't sure. (Mom has vascular dementia, i.e., sharp as a tack except can't reason anymore and occasionally the govt is coming to take her away because she didn't' pay her income taxes in 1937; also, the volunteers who wheel the clients to Mass on Sunday mornings are all Jehovah's Witnesses and will possibly take her to another service). My brother is afraid that if she's on Hospice, we won't be able to get her repeated pleural effusions drained, that they'll take all her bp meds away, etc etc. Where is there good, factual information that I can sent him?

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There is some sort of combination between Medicare and Medicaid. Talk to the social worker at the facility about completing a medicaid application.
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What are the options when you are told that you have to pay room and board and you need addition financial help to pay room and board? My insurance is covering the medical care and medicine but not the room and board. I need to find out what kind of help may be out there to help me?
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I just need to vent here for a bit. So I went to nh this morning. The did more x-rays last night (repeat of hospital) because mom seemed to be in significant pain. Knee, legs, hips came back negative. When I got there, pt was about to take mom, she put her head in her hands and cried. I ran to the nursing station and discovered that the team adolescent for pain had been ordered pro and she hadn't had any since yesterday afternoon. They told me, well we ask if she's in pain and she says no... she's not in pain when she's at rest but is when they move her, same as at hospital. Got run to give her a dose of tram adolescent right then. Asked to talk to DON, because I've had this conversation with sweet and unit director rn. The administrator was standing by the desk and she sat and I explained my utter frustration with the fact that they are expecting a dementia patient to tell them about pain. Got a call on my drive back (75 miles each way, three times so far this week) that they are now ordering films of lumbar spine and pelvis. I just needed to send this out into the universe so I don't stick a fork into someone!
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I pulled these links off of the Alzheimer's.org website:

Planning Ahead. (website).

Available from the National Hospice and Palliative Care Organization, 1700 Diagonal Road, Suite 625, Alexandria, VA 22314. (800) 658-8898. E-mail: caringinfo@nhpco.org. Web site: www.caringinfo.org. PRICE: Free online access at www.caringinfo.org/i4a/pages/index.cfm?pageid=3277.

The National Hospice and Palliative Care Organization provides online resources to help older people and people with a serious illness plan ahead for the end of life. The Planning Ahead topics include how to talk with loved ones and healthcare providers, deciding what kinds of life-sustaining treatment are or are not desired, and choosing an agent to make medical decisions. This web page also links to a map of the United States with access to state-specific advance directives. In addition, the Planning Ahead web page includes financial information and advice, sources of financial support, and information for the person's family and friends. The website also includes a planning ahead checklist and links to other end-of-life sources of information.

What is Hospice? (section of website).

Available from Hospice Foundation of America, 1621 Connecticut Avenue NW, Suite 300, Washington, DC 20009. (800) 854-3402. E-mail: info@hospicefoundation.org. Website: www.hospicefoundation.org. PRICE: Free online access at www.hospicefoundation.org/pages/page.asp?page_id=47055.

This brief online guide explains that hospice is a concept of care, not a place, designed to provide comfort and support to terminally ill people. The goal is not to cure or treat a patient, but to improve the quality of his or her last days. Care provided by a team, including family members, concentrates on controlling pain and discomfort. Hospice also deals with the emotional, social, and spiritual aspects of dying. The website explains who is eligible for hospice care, the caregiving team, what happens upon entering a hospice, and insurance coverage of hospice services. There is also a short “myths and facts” section and an opportunity to “ask an expert” a question via the website.
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Lol, except for the fact that we've been trying to get in touch with our youngest brother who lives about a 4 hour drive from where mom is...after leaving lots of messages, including "doctors do not give mom good chances of making it through the night" we discovered that he was on a cruise and was now in Harry Potter Land with his family. I guess he still doesn't get that you don't go away and not tell the rest of us how to get in touch. We all need some comic relief and Baby brother (he's 11 years younger than I) is ours!
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It does not sound as though there is any urgency to formally put Mom in palliative care or hospice. If she falls and is obviously injured it is still obvious that a visit to the ER is necessary under PC or Hospice. Unless she is unconscious and actively dying treating a broken hip is essential. the same with the chest taps. If she begins to be really distressed by the process or simply refuses then you have to make the best decision for her comfort at the time. I think it was perfectly reasonable to put in the pacemaker. It may make it unnecessarily to continue some of her medications and not add more. You have the necessary authorizations in place so you are really in a good place. I don't think it will be necessary to get into a big fight with your brother over this. It will be obvious to him when treatment is just too much for your mother to . Blessings
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It sounds like you and your siblings have pretty good communication. That goes a long way.
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So, Mom is back at the nh, very weak when I left yesterday afternoon. The docs at the hospital talked to the palliative care team and they all agreed it's too soon to go there. And I'm hesitant to push this issue right now as POA brother who lives closest to nh is going to Europe for two weeks. So I'm going to kick this can down the road for that time. My mom has vascular dementia, but scored a 15/ 15 on her last mental. This does not make any of us feel as though we are enabled to make those life and death decisions for her yet (beyond dnr/dni/no feeding tube) the pacemaker was a grey area, continued chest taps, transport to hospital when she falls. Just venting here; poa brother and I will has this out in two weeks.
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Hospice will only come in when death is closer (not sure of exact time frame but it is measured in months at the most I think). We had a wonderful palliative care doctor evaluate my mother. Best thing I ever did. He suggested taking her off a few of her 12 medications. He was very thoughtful and had a long talk with us about death with dignity and what treatments are good and what artificial measures prolong life in a negative way. We had his official notes put in my Mom's medical file and insisted they follow his orders. She lived 4 years on palliative care.

In the end we had her on comfort care at the nursing home. We loved our comfort care nurse practitioner and would have lost her if we switched to hospice. She knew my Mom's history and was concerned and responsive to our whole family. We felt included and comfortable through her last days.

I think finding a practitioner you trust and like (and who you can reach when necessary) whether it is through hospice, palliative care or specific nursing home programs is the way to go!
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Contact you local Visiting Nurse Assoc.
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Ask her doctor and yours who they'd recommend. Also, if you have several Hospices in your area, you might want to interview them all or more than just one and that's it. They all have a little different idea(s) about how they handle things and you will find out who you and your loved one feel most comfortable with.
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There are websites such as the Centers for Medicare and Medicaid CMS that explain the regulations and services provided under Hospice that will help you. There are books, such as mine, that explain Hospice services and palliative care.

Someone does not need to be on Hospice to receive palliative care. Palliative care is just a multidiscipline approach to control symptoms of a disease and its treatments.

Just because your mom is doing better does not mean that she might not benefit from Hospice care. It is better to investigate all of your options and get everyone on the same page before it becomes an emergency.
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Now that Mom is doing better would be the perfect time for the conversation about palliative care with Hospice. It will be less stress and easier to understand options. Palliative care is not end of life and Hospice is a great resource for you and your siblings and for Mom. My family struggled until we had no choice but Hospice House and it has caused great strain on relationships since my Dad passed. If we could turn back the clock palliative care with Hospice would have been a better choice so that when the time came we were all on the same page and trusting those decisions. Best of luck to you and your family!
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thanks for all your answers. Fortunately, mom seems to have turned around (Again!) and is doing better. Just so everyone understands, there IS no other service in the NH; just like there is no basement to flood, but she's always telling us that the basement is flooding (our basement at home flooded a lot). When we arrive to take her to Mass, she generally declines the offer. I was just offering examples of her confabulations/confusion. Thanks again!
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I think the best thing would be for all of the siblings to meet with admissions RN from Hospice. You can decide at that time if you want to go ahead with an admission or tell them you are not ready yet.
Make a list of all the questions you have and keep asking till you get the answers you want Agreeing to hospice is not a final decision. If at any time you feel they are not doing things you want continued you can discharge her and continue the treatment you feel is necessary, for instance with draining the pleural effusions. If it is something done for her comfort they will probably continue as long the proceedure is not more stressful for her than just letting nature take it's course.
It is often hard to make these decisions but keep in focus just what Mom wants. if she says she can't do a certain proceedure again please honor these wishes even if you know her decisions will probably shorten her life. Hospice is all about quality of life not quantity.
As far as being taken to the wrong service on Sunday if you are that worried about it go and take her yourself. otherwise leave it in God's hands after all we are all God's children what ever religeous label we choose to stick on our selves. Just be thankful that the Jehovah's witnesses are kind enough to come to the hospital and give up their time to take the patients to the services. just have brother talk to hospice and ask his questions. Good Luck this is not a final decision by having hospice you do not loose the abilty to continue to make decisions for your mother.
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Upper right corner, guess I am not completely awake yet.
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Ba8, use the search box in the upper left corner of this site to find articles on palliative care. Following the search you can choose between questions, discussions or articles. This is a link to one of the articles that is on this site.

https://www.agingcare.com/articles/Palliative-Care-How-it-Can-Help-Your-Aging-Parent-Achieve-Quality-of-Life-136281.htm

Doing a google search for "palliative care and vascular dementa" will probably provide you information directly related to your situation. Sites like the Mayo Clinic that deal with these sorts of health issues may be very valuable. Good luck.
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