Chriss,
I'm so sorry you had a negative experience with Hospice. I would have expected that having such a long term relationship with your husband that they would have done more to educate the staff about ALS and how best to care for him.
We used our local non-profit Hospice for care during the last few months of my Mother's life (Parkinson's and CLL) The care we received was excellent. Our primary nurse was outstanding. After a fall and a severe and rapid decline from 2 ER visits (to check for FX) Mom did go to their Inpatient Facility for the final few days of her life. The difference in her overall appearance after about 20 minutes in the facility once she arrived from an ER about 2 hours away was dramatic. She was made comfortable and kept that way for the next 3 days and nights. Our primary nurse had even helped coordinate getting Mom "home" while on her afternoon off. We were able to function as family to Mom once again instead of 24/7 caregivers.
A friend whose Mother recently passed in TX also used Hospice and had excellent service. Their team was readily available for advice by phone or text. The last few days of her care were provided by the Crises Team with 24 hour in-home attendance.
I'm sad that there's such a wide variety in the level of care that folks are receiving from Hospice. It is a much under utilized benefit.
Most people postpone acquiring their services until the last minute and are not able to realize all the support that is available.
I hope others will research their local options for palliative care and at least give it a try.
Information on palliative care in the US can be found at Hospicefoundation.org
I heartily agree with Deb about getting hospice involved early. Annie initiated her hospice care in mid-April, she died Dec 9. Getting the relationship with hospice early gives you opportunity to get to know the individuals and get any unacceptable issues corrected before they become critical. There were a number of things that were unacceptable when Annie first started. I made a trip to the hospice headquarters and politely, but unambiguously, conveyed the issues which I thought needed correcting. Things changed for the better the very next week. The level of care that Annie began receiving went up dramatically. She had several different aides, one was especially good and rapidly developed a loving relationship with Annie. We specifically requested that she be Annie's main aide, and hospice gladly accommodated her request. She also had a couple of different main nurses along with some on-call ones during odd hours. The pairing up of Annie with her last nurse was a mutual desire on both their parts. Like with her aide, Annie and the nurse really hit it off and spent much time together beyond what was strictly necessary for the medical care. Actually, all of the hospice staff wanted to have Annie because she always so pleasant and made them feel better. Annie's hospice folks really loved her and that counted for a lot - she was more than a job for them. Her nurse and aide actually came to her memorial service.
If initiating hospice is delayed too long, then you're sort of stuck with what you get because there's no time to get things sorted out.
And I certainly understand the desire for spouses or other close caregivers to want the professionals to take care of the medical care since they've already got the emotional burden as well as daily caregiving duties to attend to. But good caregiving decisions, and availability, on the part of the professionals isn't something one can depend upon.
After the patient dies, it is common for the survivors to recount in their minds all of the things they wish they had done differently - "If only I had known this, I would have done that." or, "I didn't think that was right, but I didn't want to say anything. Now I wish I had questioned this" or "insisted on that." There will be guilt and regrets no matter how well you try to take care of your loved one. So I'm just trying to caution caregivers that passivity can exasperate the inevitable future feelings of guilt - my suggestion is to err on the side of saying too much rather than too little to the people getting paid to manage the palliative care.
Our local hospice also had nil experience with ALS. Most of their patients were also cancer patients. Annie knew a lot more about ALS than most doctors, excluding neurologists. The reason was that she read extensively about it. There was much information we got from the hospice staff that was just plain wrong - and you don't have a chance of convincing them that they're wrong. That's when, armed with reliable medical information, one just has to stand their ground and insist on what your research indicates is the best course in keeping with your goals. Not every patient has the same goals - and that needs to be respected. Some want to live as long as possible, others want to go as soon as possible.
What Mike said about ambulances and hospitals is true. In fact, in our state, if you call 911 the ambulance crew must apply life-saving interventions unless you have a properly executed DNR order. The logic is, why does one call 911 if you don't want them to try to save a life as an emergency. I understand that one might just want palliative care in an extreme situation, but that's not their raison d'etra. And doctors and nurses are trained and conditioned to save life. The movie "Wit" gives some insight into that. "Wit" was one of Annie's favorite movies and recommended it to anyone facing a terminal illness.
I think I've rambled enough.
