I chose nursing for the utility of the career. I came into hospice for reasons already described. I have come to a time in my life when my knowledge and experience have become useful to so many of my friends with aging parents. I submit this open letter, whether I know you or not, about the journey in front of you.
Today is an awful day for you. The word hospice has been uttered and you are seeking my - or someone like me's- guidance. Sadly, but hopefully, it is for your aging parent. Horrifically, it might be for your spouse and inconceivably, it could be about your child. Rest assured you have entered a place of compassion and understanding. After all the hospital uncertainty ("does the right hand know what the left hand is doing??") that you have endured, the mania is over. Hospice is a warm blanket, much like Charles Schultz's love, that wraps us all together and makes this experience less awful.
Hopefully, you don't feel foolish, but you might. You've never done this before. Hospice is used to that. The irony of the fact that everyone dies but no one is ready for it is something to which we are very accustomed.
This is what we do. We understand deeply this phase of life and all the dynamics that go with it. It can bring out the best and the worst in some families. People die as they lived, so if your Mom or Dad was stubborn in life, you can count on them to be stubborn until the end. Any quality hospice program, once the word has been spoken, should dispatch and informed, credible, compassionate clinician that will take time to demystify the process. If you don't get that, cry Mercy!
Best case scenario: a hospice clinician that instills trust comes to meet with you. Ask everything. Twice. Take your time. Especially if you are contemplating or preparing to bring your loved one home, which is most likely, understand completely what hospice will and won't provide.
Let me provide a little surface guidance on that topic. Hospice, for all the many wonderful things it will do, is not going to move in. Hospice will provide frequent visits from the members of the interdisciplinary team (RN, MSW, CNA, chaplain, volunteer). However, if you and your family are not prepared to be at your loved one's bedside 24/7 (depending on their level of dependence), you will need to hire private duty care. Based on your part of the country, you can count on approximately $17/hour.
Having said this, I am hopeful that your loved one needing hospice, isn't entirely dependent at the time you elected hospice. Everyone tries to avoid hospice, but an earlier election provides for a better plan of care. We all know you don't want to "give up" on your loved one, but hospice is not about giving up. It is about finding hope in different places. (Originally said by Debbie Lott, RN). ( A larger topic for future blogs).
What you, friend, need to understand as you bring your loved one home is the following: Hospice is going to take care of everything to keep your loved one comfortable. What that means is all the medicine that he/she needs to be comfortable and is related to his/ her terminal disease*, supplies like diapers/ chux pads, dressing changes, durable medical equipment like a hospital bed, bedside commode, oxygen (for comfort without qualifying levels) and walkers/ wheelchairs.
All this, all this, all this, comes down to this: I know you or I don't, but YOU can do this. This is hard. Babies are born in hospitals, so we think people should die in hospitals. They shouldn't. That's not what hospitals are meant to provide.
When you're loved one is dying, and all have agreed that allowing nature to take this path is the most loving and compassion plan of action, bring your loved one home if at all possible. Dying is natural. Our intensely medical society has presented death as a medical failure, but the truth is, death is a part of life. We cannot change that. What we CAN change is the death experience.
I have attended many deaths, in hospitals and home alike. Death is always a shock, even when loved ones state preparedness. Death can be peaceful. Death can be beautiful. As a questioning Catholic working for a Jewish hospice, death is undeniably spiritual.
Dear friend, I acknowledge your fear. Grief will always be present. But a death at home that honors a patient's wishes, cared for by hospice, indisputably provides for a better bereavment.