And, is the US facing a crisis in eldercare? Looks like it….
This is part of an ongoing series about our family’s experience with dementia. There is no order to it, just observations, reflections and, I hope, some guidance for others on this journey or who may someday begin it. It is not intended as any sort of financial, medical or psychiatric advice. Just one family’s experience…
I HAD MY monthly support group meeting at Connie’s care facility last night. Before it began some folks and I chatted about this blog and one person noted it had been a while since I had posted.
I answered that I was finding it harder to do as time passed. In large part, I said, it was because I felt like I was starting to invade Connie’s privacy. We have moved into the going-away part of dementia, and I post this blog on her Facebook and mine where it’s read by people who have known her for a long time. Would she want them to see what the disease is doing to her?
The folks last night asked if she was aware of it. She is. When I started it, she was all for it and I know if I asked her if she OK with me detailing her decline, she’d say she is. But still….
So, we talked a bit and when I got home I thought about it. I started writing this blog because when we had to accept what was happening, we were gob-smacked. We felt like we had been put down in an alien place where road maps and GPS were of little help. I thought a blog about dementia in general, all the things a family goes through, would help others. Just as I was starting out I read a wonderful book by John Wilson, a Texan whose wife had the same dementia Connie did.
(“The Long Good-bye: A Caregiver’s Tale” – https://www.amazon.com/Long-Good-bye-Caregivers-Tale/dp/0971042764)
So, I started. It has been a journey of love, learning and despair, sometimes all in the same moment. And, I have decided it will continue. Tonight I will talk to Connie about it. Her decline these past two or three months has been stark. But she is not gone. She is still with me and there are moments where the disease falls away, however brief the moment is, and clarity comes back. We will talk.
That is the personal…
ON THE “BUSINESS” side of things I feel darkness coming. I have written of this before. Years ago Connie took out long-term care insurance for us. It pays 75 percent of the nearly $11,000 a month care bill. Even at that, we sit among the elite. The majority of Americans, if faced with long-term care, could not afford it. I won’t go into the details but in an earlier post I said we are facing a crisis when it comes to elder care in the US. You can read it here…
For many, who either were low-income to begin with or have lost all their assets to health care, the one safety net they have is Medicaid. Our facility is Medicaid certified, meaning that if we end up broke, we will not be kicked out. For many nursing homes, and hospitals, Medicaid is critical to their fiscal health.
This week, the House of Representatives passed a bill that would gut Medicaid. The only door so many of the elderly, and poor in general, had to walk through to some sort of care will be slammed shut if the bill ever becomes law. The bill also would impact Medicare because if the deficit rises to a certain point it triggers spending caps. In short, this could become no country for old men and women, and their families.
If this journey has taught me anything, it is how much help we all need – from family, from friends and yes, from government. This is not a hike to be walked alone.
So, I guess I will talk to Connie, knowing she will say keep on, then I will keep on. While I hope none of you ends up taking this trip, I know some of you will so just hope this in some small way helps…
Rich Heiland, has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year. Since 1995 he has operated an international consulting, public speaking and training business specializing in customer service, general management, leadership and staff development with major corporations, organizations, and government. Semi-retired, he and his wife live in West Chester, PA. He can be reached at [email protected].