Hospice not just for last few days

Hi Bodhi,

It's great to see you posting again!  And you've shared some really important information.  When we used hospiced to help with my father-in-law in his final days of lung cancer, we were also very thankfully surprised at the range of services they offered not just my father-in-law but our family.  They opened themselves to help us cope with the grief beyond his actual passing.  Hospice is an amazing organization and I'll never be able to say enough good things about them.

Thank you for posting this!

Bodhi, thank you so much for posting this!  You are right, not everyone knows all that hospice has to offer, and you'v e done some fine educating here this week. Good on  you for helping the members of this site!

Hospice is super and the people are wonderful

My husband signed up about 2-3 wk ago and has gotten so much help from them it is unbelievable.  It was hard to get him thinking it was ok and not for the end of life only. 

he has lung cancer and had several chemos and the last doctor visit said it had kept spreading and now we are just taking a day at a time

Oh Sheila!  I'm so sorry you and your husband are having to deal with his lung cancer.  I'm thankful for you, though, that hospice is iinvolved.  They bring comfort in so many ways!

Hello Bodhi,

I work as a caregiver with a hospice agency now and have been with them for about five years and you are right they do have alot of services. In my hospice agency we offer all that you said plus we also have the chaplains and the social workers who offer a tremendous amount of support. Normally we do not start patients on hospice until they are diagnosed as having 6 months or less to live. We have at times had to release patients from our services from time to time but thats not a bad thing!!! It was great in the sense that the patient became better or was not going to pass away but wanted to stay around. Even still if we did have to release them we still stayed in contact with the family and helped out with emotional support because they get bonded to us as we do them, so we still check on them but we are definitely happy when they continue on with life. One thing I have been told many times was that we were a very important part in their life and they seem to really enjoy us but one thing I always tell the families is that even though we come in, we are not near as important as the families themselves. The families are the ones who are there around the clock  and have astounding bravery to go through what they have to go through. Our famlies are fantastic in their own caregiving and I love to tell them that they are even more important than we are. For all of you who are caring for a loved one, you all are AMAZING people with tremendous courage and your support is even far better than ours. As much as I love to hear people say how wonderful we are I just want you all to know that "YOU"  are the ones who need to be told how amazing and supportive you are as well. Please know that we could not do our jobs as well as we do without your help either!  God Bless you All! 

Also what's interesting to me, is that the hospice people said that if my friend's dad had to terminate the hospice, he could come back on it again at a later point.  The other cool thing was that the social worker said that the insurance might get messed up for the first month or so, but just to let her know and she'd help to work it out.  Sure enough they got these ridiculous bills the next month and freaked out.  Well as it turned out that one was a hugh co-pay from a previous hospitialzion -  the famous  'gap' in the medicare system and another was just a mistake from the doctor's office.  

And of course somehow its easy for me to be objective about it because it's not my dad, but when my mom was dying, such a different story .  Well I think hospice people are amazing too!

Hospice guidelines vary from state to state, sometimes from agency to agency ... unfortunately I've been on both sides (20 + year nurse with aging parents).  Generally a hospice "certification"  is thought to be six months or less, but many people outlive their cert.  Typically a new evaluation is done and the cert. is renewed.  Hospice just means end of life care focused on quality of life issues in cases where no effective treatments are available or all other avenues of treatment have been exhausted.  Some facilities offer in patient options, but the trend in healthcare for the last decade has been in home assistance (including people with nursing home / assisted living arrangements).  It's true that once Hospice has taken the case all medications and supplies are generally provided ... mostly due to Medicare part B funding and to a lesser degree depending on your state to more inclusive "bundled services" permitted within state medicare programs.  Just as important, there are skilled nurses and medical assistants on call around the clock, so those scarey 2:00 a.m. episodes almost everybody goes through with a dying loved one don't have to be weathered alone.  Further, Hospice nurses generally have a direct 24 hour line to a medical director (a doctor) and access to a 24 hour pharmacy for just such emergencies.  On top of that, the family has the benefit of having somebody that's done this dozens, if not hundreds, of times before so that when it comes down to the end there is the peace of mind of knowing that everything that should have been done was done properly and in a timely fashion.  It doesn't sound like much, probably because Hospice can't give us what we really want which is to make it all better ... but once you've been down that road all the way to the end you'll find it's a huge comfort.  I discovered, much to my amazement, that once my father was actively dying my mind shut down and I couldn't function effectively even though I'd done this with other families so many times I can't put a number to it.  In the end I was my father's daughter and didn't want to be his nurse ... I'm very grateful to the nurse that was able to step in when I needed her most.