FTD (not the florist)

About 18 months ago I shared the news that my family was moving to another house so that my mother in law could move in with us.

This move took place about 16 months ago, my mother-in-law’s house sold about a year ago and she moved into our new house last Summer. Her physical and cognitive decline since that time has been pronounced, and she was hospitalized 3 times in 40 days from Thanksgiving to Christmas; the last hospitalization occurring when she wandered from our house during the night for the third time that last 10 days she was with us. She fell in a ditch by a road near where we live, was found by a runner just before dawn, and was “Jane Doe” for around 4 hours in the ER before we realized that she was gone.

From the hospital she went to rehab in a Skilled Nursing Facility (SNF) for around 30 days, and moved into an Assisted Living Facility in Chapel Hill in early February. I came to understand the concept of ‘sandwich generation’ one day in January as I visited Assisted Living facilities while trying to help my daughter decide whether to apply to any more Universities just before the January 15 deadline; the juxtaposition of helping to plan and experience these two trajectories has been poignant and jarring.

It is difficult to say when our role as ‘caregivers’ for my mother in law really began. I have picked her Part D and Medicare Advantage plans for a while, and helped with financial decisions for many years. We had multiple middle of the night drives to her house across town to help her off the floor during 2011 that precipitated her moving in with us, and an increasing need for basic care that increased when she lived with us. I am unclear if she was simply in need of more care than we knew before she moved in with us, or if her decline has simply been that precipitous.

This past week, she received a formal diagnosis of frontotemporal degeneration (FTD), behavioral variant which is a form of non-Alzheimer’s dementia, that is fairly rare (~30,000 persons in USA with one of the variants of this disorder, which used to be more generally called Pick’s disease). Many persons who arrive at this diagnosis are misdiagnosed as having persistent mental illness, as many of the behaviors are similar to that observed in a person with bipolar disorder or a borderline personality disorder. Behavioral disturbances come first with FTD, then language and gait changes (and falls) onset before memory impairment is severe and full care needed, leading to this misdiagnosis which was the case in our experience.

If you want to wander around the ugly, fragmented side of the health system, you could pick mental health or long term care. Bouncing between the two has been quiet agony for all those involved.

Medicare pays for very little long term care (it did pay for the rehabilitation stay following the fall; 100% for 30 days, then with a $158/day deductible for the next few days, ending at 100 days). Home health is available, but has increasingly become medicalized over time though some of the eligibility rules have been lessened. Of course, Medicare paid for all 3 hospitalizations for my mother-in-law, all of which were really signals of a break down in the long term care system (her living with us) that we had put into place. It was a social worker changing the question from ‘can you keep doing this?’ to ‘you cannot keep doing this’ that was the trigger for the move to Assisted Living.

My mother in law is now living in an Assisted Living facility that has shown great care and flexibility in trying to adapt to the realities of a resident with this dementia variant. The cost is around $75,000/year and dementia care at the sister facility to which she will likely move sooner rather than later costs around $90,000/year, none of which is paid for by Medicare. The family is responsible for all of this cost, and in our case we are blessed that the resources to provide for this care were arranged for by my deceased father in law. Most families cannot arrange for such care and would have many fewer options than we have had (it is hard enough with resources). Of course, Medicaid sits as an ultimate backstop and once an individual’s assets have been eradicated, care in a Nursing Home (not the type of place where she now lives) is paid for until death.

I still note in many circles people noting the demise of the CLASS provisions of the ACA as a joke or a political scalp of sorts. This really pisses me off. I guarantee anyone viewing it that way hasn’t navigated long term care for a loved one. We as country desperately need to wrestle with the questions of the best way to insure Long Term Care.

Some version of this story comes for many of you, too.

cross posted in freeforall

Author: Don Taylor

Don Taylor is an Associate Professor of Public Policy at Duke University, where his teaching and research focuses on health policy, with a focus on Medicare generally, and on hospice and palliative care, specifically. He increasingly works at the intersection of health policy and the federal budget. Past research topics have included health workforce and the economics of smoking. He began blogging in June 2009 and wrote columns on health reform for the Raleigh, (N.C.) News and Observer. He blogged at The Incidental Economist from March 2011 to March 2012. He is the author of a book, Balancing the Budget is a Progressive Priority that will be published by Springer in May 2012.

6 thoughts on “FTD (not the florist)”

  1. As usual, I have no answers (just complaints and rants! I’ve got those.) I am very sorry for what your family is going through. There must be a better way. What do people in Europe do?

    1. As Don notes, some version of this story is coming or has arrived for a family near you. It may even be yours, as it has come to mine.

      I don’t know what they do in Europe. I only know what we do: we do the best we can.

    2. NCG
      The US is more similar to most of Europe on LTC than acute care system/structure…in the NHS, health care is ‘free at the point of service, resources distributed based on need’ for health care, but for ‘social care’ (like informal LTC) it is family provided/financed with a backstopped NH route that is tirggered via poverty as in the US. Germany has the social insurance LTC financing scheme that I think would be most applicable to the US if we embraced social insurance to partly financed LTC (stop laughing). They have a disability based voucher that can be ‘cashed out’ by families, giving the choice of taking less in cash to directly provide care or more in a voucher with which to purchase formal servies, but with the voucher not financing full cost of full care in many cases. That approach provides families with flexibility and choices, which is key in LTC. more later

  2. “Some version of this story comes for many of you, too.”

    Indeed. I went thru 2 different versions of this with both my mother and my father. My mother had a sudden decline of health starting with heart bypass in early Dec. Three trips to ICU and then rehab facilities ended with a 4th trip to ICU when we brought her home to die. Mentally she was sound thrugh out it. My father was suffering from Alzheimer’s at this time and there was no way my mother would ever be able to care for him. Within a year his mental decline was notably worse and his physical collapse was almost complete (I was still able to take him out to lunch on my monthly visits but it was fraught with fear of a fall)(I lived 70 miles away). After 4 years he finally died. Fortunately he was able to afford Long Term Health Care Ins or I don’t know what we would have done.

    My in-laws in Spain had a much different story. My father in-law had a sudden heart attack while sitting in his car in a parking lot after a soccer game for his favorite club (Mallorca). Not a word, not a gasp, not a moan. He and his buddy got in, his buddy asked him a question, and got no answer. My mother in-law was able to live at home for 2 years after that until the day she died even though she was unable to physically leave her 3rd floor apt. An aide came 3 days a week for baths etc, a nurse once a week, and a doctor once a month. She died at home, 3 days after watching her only grand-daughter get married via live webcast. Never happier.

    She was a tuff old bird. Was born in a Spanish prison during a bombing raid in the Spanish Civil War. Grew up without a father as he died in a POW camp. Never forgot what it felt like to be hungry, so always had enough food to keep a Salvation Army shelter going for a week. Survived 3 heart attacks, breast cancer, and leukemia. I cried like a baby.

    1. I am sorry for all that you’ve been through.

      Btw, your MiL sounds amazing. There is at least one novel in there.

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