Dying is easy, it’s living that’s hard. 

In 1997 I was dragged into the world of Medicaid Service Coordination by my developmentally disabled daughter who desperately needed services. I was yelling and screaming at everyone then and unfortunately haven’t been able to stop since. There have been many roles for me personally and professionally as a direct provider and advocate. I’m not a social worker but I have done enough paperwork to at least earn a “social worker” patch. Or a box of wine.
I’ve had to watch families so stretched and dysfunctional that they were unable to care for a loved one who was experiencing one of a variety of issues. I’ve worked in developmental disability, mental health, elder care and debilitating chronic illness circles. A fun bunch, let me tell ya. Sometimes otherwise healthy regular old people are left with no one to care for them. Sometimes these people left with no one end up having a debilitating stroke in K-Mart and the hospital can’t find a relative to consent for a medical treatment. That’s where the hospitals will petition the Court find these incapacitated people a legal Guardian to make such decisions— like it or not.

And then, my friends, compassionate strangers come into play. Well, sometimes they are compassionate, sometimes they just have a clean enough criminal history to be barely employable.

Walking folks through any social service system is very difficult. I’ve sat in more dismal waiting rooms with crying babies and desperate people than any one person should. I’ve been through the Medicare application process (easy) and the Medicaid application process (much harder) and opted out of the many HMO programs that facilitate the Medicare/Medicaid hybrid programs. (With the exception of Medicare D programs, I’ve never known the private sector to do anything but royally fuck up an existing entitlement program.)

I’ve seen people through the slow, impersonal process of death with a variety of illnesses and diseases. I’ve assisted people from their own home, to Assisted Living Facilities to Nursing Homes.

It’s not a pretty process. And it’s not cheap.

Not only is it disorienting for someone to leave their home to live in the bizarre hotel home world of an Assisted Living Facility (ALF) it’s expensive. Room and board is easily $5,000.00/month and add to that the crazy list of add on’s; laundry, activity, beauty salon, memory care, and you can add another $5,000.00 to your fee.

Older Americans are dumbfounded by the expense. “Can’t we just keep Uncle Bill at home?” Sure, for about $14,000.00/ month unless he needs medication management or transportation to his doctor—that will cost extra.

ALF’s don’t take care of everything, when Uncle Bill becomes incontinent or can’t feed himself he will need a higher level of care which the ALF isn’t designed to provide. Depending on how full the ALF is at that particular point, your dear Uncle may be escorted to the nearest Nursing and Rehab Facility available. If Uncle is lucky, the staff and family will look out for a nursing facility that is just right for him, but many times the decision of where to go is based upon what’s available at that particular time.

The good news is that nursing facilities have more regulations than ALF’s so they are more invested in good care. The bad news is this higher care is much more expensive. 

The Room and Board for a room with a roommate in nursing and rehab facilities runs about $7,000.00/ month. If Uncle Bill can’t pay and is out of assets, he may qualify for Long Term Care Medicaid which will take all of his money, give him$40 for monthly expenses (like clothing and haircuts) and take care of his nursing home bill. 

Somedays it seems like there are so many many problems in long term care for the elderly and disabled that there is no way it’s going to get better. We need more internships involving college and even high school kids with direct care. I would like to be more able to protect vulnerable people from exploitation so I could involve them more in the community. I wish there were more housing options for mentally ill adults so they didn’t end up in “regular” nursing facilities. And it would be really humane and just terrific if older people had more options to just die at home.

We are doing a pretty good job of keeping people alive. But as we are looking at health care, let’s also look at how these folks are actually living. This cannot be the best we can do.

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