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?
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.
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!
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.
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.
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.