I have worked in healthcare for 20 years. For a non-clinical person, I know an awful lot of the clinical side of medicine and can hold my own in a conversation with most physicians and nurses. I've worked with hospice physicians in the past, and have found them to be some of the most caring people in the world; nurses too. So imagine my surprise when the hospice we contracted with for a family member turned out to be not so hospicey, not so helpful, and not so patient and family focused.
When a family member decides on hospice care, it's not a good time. Their health is declining, sometimes rapidly, other family members need to be notified and updated, and lots of family dynamics come into play. Lots of relationship issues rear their ugly heads. We keep calm, carry on, and do the best we can.
At the initial enrollment, some information was given and explained, but due to staff vacations and such, the information was given the best it could. I get it, I understand. However, the family should be notified of who the case worker is, who the social worker is, expectations of care from the hospice themselves, as well as what kind of care the family will need to provide or arrange. Home hospice does not provide 24 hour care, therefore family members must arrange personal care aids to come into the home. If you are not willing to change adult diapers, then get the aides. Trust me on that.
Our family member was on hospice for about a month and received more loving care from the aides we found than the hospice staff themselves. Insurance also does not cover personal care aides, so that is an out of pocket expense. The amount we required was about $800 per week, and luckily we were able to cover it. Most people can't, but given the situation we couldn't perform that care ourselves. You do what you must.
We were also judged by the hospice nurse with respect to our level of involvement. She didn't know us, and didn't know what had happened in the past 20 years. Aren't nurses supposed to read situations or find out information, and not be judgmental? Family member didn't see a doctor for 40 years and couldn't get out of the hospital fast enough the one time they went, that landed them in hospice. Don't insinuate a "lack of care". Human beings are autonomous and can make their own decisions. There was not mental issues going on that prevented that. Only the usual "ignore the problem" that many older adults do.
It sucked to see our family member suffer (because they swore they didn't need morphine), but that was their decision. We had to respect that. What made the whole process worse was the crappy, insincere care we received at the hands of the hospice. Patients can elect to change companies, but who wants to go through all of that at that time, when we know there isn't much left?
So what is the life lesson? Know what you're getting into. Discuss what your family members want before the end comes. Hold the hospice responsible for good communication. Hound them if you must. And find a good personal care agency. If anything, this situation made the hubby and I realize what we need to set aside when the time comes for us. We have little family, no children, and really you can't count on that anyway.
Long term care insurance is available, but there are many restrictions with that. Also, nursing facilities are not covered by Medicare unless you have a qualifying three day inpatient hospital stay and some sort of supplemental insurance. I know all about Medicare too.
I hope this gives you more information than you had before. You don't know until you go through something like this. Try to be as prepared as possible when the time comes, but most of all, speak up. Not just for your family, but for yourself too. You still have living to so too!
Hope this post is informational for anyone who needs it.
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