hospice

[tick tock]

I know someone with ALS and hospice has recently been called in. I don't know how to take that really. I know hospice is usually called in in the final stages of a person's life but since ALS progresses differently in each person as I'm told-- I don't know whether to be afraid that "this is it" or what's really going on. I don't feel like I ever really get an answer about where this person stands prognosis wise (for lack of a better way to put it). I'd just like to know. Can anyone give me any info? This is someone I'm close to and no one seems to want to talk about it because its upsetting but I feel like I want to have some idea so I can use the time wisely. I've been trying to use the time wisely all along but now I feel llike time is reallly ticking....
Anything helpful would be really appreciated. Sorry if this is cryptic, I don't really know what to say...

[BethU]

Hi, Tick Tock ... hospice does not have to be the "last resort" at all. That is a misconception. It provides many freebies, benefits and support services that are really worthwhile. I am scheduled to sign up for hospice in mid-month, and am still (somewhat) mobile, slightly self-sufficient, etc., etc.

You can go in or out of hospice as you like. You can also see doctors as you like. I will continue to be treated at a university neuro clinic, can take place in clinical trials, travel, etc. The benefits I will be getting are regular nurses visits, the support of a social worker, and basically having a lot of the hassle removed from my life. Plus wheelchair, hospital bed or other equipment I need, free supplements for my feeding tube (now I pay a co-pay) and many others. I can get these things through other sources, but with paperwork, delays and a lot of effort on my part. It will simplify my life in a major way, and help my caregivers, too.

I think this is something that many people put off investigating until the last minute, but many people are on hospice support for months or even years. The famous columnist Art Buchwald was in hospice for over a year, still writing his column, until he got bored and signed himself out. Usually you sign up for six months, and your doctor will renew it for six months at a time.

What it means basically is that you will receive palliative care ... they will make you as comfortable and pain-free as possible. Hospice will not try to cure your condition or prolong your life with intrusive means. Since ALS is incurable, that's not a biggie.

As to your friend ... it's impossible to say what stage he/she's at. Calling in hospice services doesn't mean the person has necessarily declined. It may be to help the caregiver, it may be to help the patient. And it's very difficult to pinpoint a person's "progression" with ALS. There are many side effects that may jeopardize their life ... pneumonia, choking, etc. So if you're not getting firm answers, it's probably because there are none.

Just keep using your time with your friend "wisely." I don't know how knowing how close they are to the end would change that. Show them your love and support and concern.

[joelc]

Hospice is different in each area. I know people who have had hospice for 5 years or more. Where I am they only get involve if you have 6 months or less. You also can't have a trache and vent, this disqualifies a person.