The bad news is I’m on hospice — the good news is I’m on hospice. So the bad news is obvious, and the good news is hospice, through Visiting Nurse Service of New York (VNSNY), is a well-oiled machine filled with helpful, nice, capable people. Much of my frustration with trying to get help, services, and information, was resolved when I signed up with hospice.
I started on in-home hospice a few weeks ago. I’m so grateful to be on hospice now as they offer a specialized team that helps you through the process of getting the help you need, providing you with home health aides, an RN, managing your symptoms (primarily pain control), they help manage nausea, provide oxygen and any durable medical equipment like canes, walkers, rollators, wheelchairs. A hospice social worker helps you navigate your insurance company, and basically gets you the help you need without you having to be the one to make a lot of phone calls when you least feel capable of coordinating, managing, and facilitating your own care. For example I was inquiring with my oncologist, cardiologist, palliative care doctor, and insurance, about getting oxygen for the shortness of breath I have when I feel like I can’t breathe. This seemed impossible to get, however, once I signed up with hospice, oxygen tanks were delivered to my apartment the very next day! Also, it was thanks to my beloved co-workers that I had a rollator (walker with a seat) as that too turned out to be impossible to get through insurance even with many follow-up phones calls, prior to hospice being on board. A friend in the neighborhood, James Bond (yes, that’s his real name) also gave me one of his Aunt’s rollators so I have one for inside the apartment and one to keep downstairs to use if I leave the building. Now through hospice any equipment I need will be delivered right to my door.
Hospice is a wonderful service especially for someone like me who does not have a primary caregiver, which is usually a husband, wife, significant other, grown child, or family member. With or without family to help you on a daily or weekly basis, hospice is a great resource to help you through.
People generally think of hospice as something to call in a week or two before they die. The truth is you should get them involved sooner than later so you can actually enjoy the services they provide. Some doctors hold onto their terminal patients for too long and even though they know the patient has very little time left they may not inform patients about the benefits of hospice soon enough.
There are many, many, hospice providers as hospice is not one company or organization. I chose VNSNY as my hospice provider because they have a great reputation in NYC and a friend of mine has worked with them for may years. If you are looking to pick a reputable hospice provider for a loved one, or yourself, it’s really important to do some research on the various providers. Not all hospice services are the same, and differ greatly from state to state or even county-to-county.
You must generally be considered to be terminal or within six months of death to be eligible for most hospice programs or to receive hospice benefits from your insurance.
Most programs concentrate on comfort rather than disease abatement. By electing to forego extensive life-prolonging treatment, hospice patients can concentrate on getting the most out of the time they have left, without some of the negative side-effects that life prolonging treatments can have.
Generally, once enrolled through a referral from a physician, a patient’s hospice care program, which is overseen by a team of hospice professionals, is administered in the home. Hospice often relies upon the family caregiver, as well as a visiting hospice nurse. While hospice can provide round-the-clock care in a nursing home, a specially equipped hospice facility, or, on occasion, in a hospital, this is not the norm.
There are 4 levels of hospice care and I am on level 1 right now. I’ll stay at home as long as I can however once I need more care my friend Susan is going to come live with me and be that primary caregiver that hospice will need in the home. I am so blessed to have a friend that is willing and even available to do this. There is only one live-in hospice facility in Manhattan that is not a hospital setting. I’m on the waiting list to get in there which is about a 7 week wait. It’s called The Shirley Goodman and Himan Brown Hospice Residence. Once I go there I would not be coming back home.
Thank you Sherri Fillipo for the hospice graphic. Sherri Fillipo’s blog about “living and dying with metastatic breast cancer” is one of the blogs I follow and recommend still on my blog. See below for one of her informative posts about hospice. Unfortunately, Sherri died recently on April 10, 2016. Her blog is still up and a wealth of information for anyone dealing with stage 4 breast cancer: http://www.sherrifillipo.com
For more info on hospice:
posted 127 May 2016: http://hopeandcourage.com