I have a sad but true story about a wretched, incurable malady called Huntington’s Disease (HD). Thankfully it is a rare affliction affecting only about one person in every 10 thousand in the United States. So, if you’re like I was until a few years ago, and you have only a vague idea about this disease, let me give you a brief rundown on its pernicious behavior. Then you’ll better understand my sad story about a friend trying to find a place to get long-term nursing care.
HD is an inherited neurological condition that causes a progressive breakdown of nerve cells in the brain. Early symptoms include mood swings and forgetfulness, unsteady gait, jerky, involuntary body movements (chorea), and difficulty in swallowing and speech.
The disease usually strikes in the prime of a person’s working life—30s to early 50s—and its progression, especially with regard to chorea and speech difficulties, is frequently rapid enough that the victim is totally disabled in just a few years.
Although the most striking physical characteristic of HD quite often is the chorea, brain changes also can result in dementia. Because of its symptoms, HD has been described as having ALS (Lou Gehrig’s disease), Parkinson’s, and Alzheimer’s all at the same time. The average life span after initial onset of HD is usually 10-20 years. Because it’s incurable, the grim prognosis of 10-20 additional years of a deteriorating physical and mental condition is particularly depressing.
So now let me tell you about a married couple my wife and I have gotten to know over the past several years. For privacy’s sake, I’ll give them anonymous names of Bill and Mary, but everything else I say about them and their situation is factual.
Bill had HD when we met him, and Mary indicated that he was diagnosed with the disease before they were married about 10 years ago. Bill was wheelchair-bound when we met him, and he had difficulty speaking coherently.
Mary worked at home, so she could provide round-the-clock care for Bill. They received Social Security disability payments for Bill, but Mary’s part-time work at home was limited, so total monthly income was always tight.
For the first couple of years we knew them, Mary was able to provide care for Bill and to manage her job at home, but it was a struggle with no additional at-home care available from any agency. Bill’s depression and frustration at his situation eventually led to episodes of anger and non-compliance directed at Mary.
Twice Mary had to bring him to a hospital in Helena, because his non-compliance threatened the well-being of both Bill and Mary.
When Bill was admitted to the hospital the second time, the medical staff made clear to Mary that his stay at the hospital was limited to the 20 days, paid by Medicare for skilled nursing care. They also made clear to Mary that, because of his outbursts of anger, they would not release Bill to return home to Mary’s care.
The medical staff’s decision led to Mary’s mad scramble, with some help from my wife and me, to find a nursing home that would accept Bill on a long-term care basis.
We found a few close to Helena that seemed agreeable to accepting Bill as a patient, until each received a medical assessment from the hospital. Then each tentative “yes” became an unequivocal “no.”
Finally, just before the 20 days were up, a nursing home in Bill’s small home town in northeastern Montana agreed to take him in. His family was well known and liked in the community. We later learned that, bless their hearts, that was probably the only reason this nursing home said yes.
So, against the desires of both Mary and Bill, he was moved 300 miles away to northeastern Montana.
Then about six months ago, Bill had an accident where he fell from bed and badly gashed his head. He was taken to a hospital in Billings. While he was there, both the nursing home and the Billings hospital agreed that, again for safety reasons, he should not return to his old hometown, and a second mad scramble to find a nursing home for Bill ensued.
That scramble was no more successful than the previous attempt, and both the nursing home and the Billings hospital reluctantly agreed that Bill would have to return to his hometown nursing home. Despite the safety issue, that’s where he lives today.
I am no expert on nursing homes in Montana or anywhere else, but I get that adequate funding to provide safe and decent long-term care is difficult to come by. On that basis, I can understand why nursing homes may balk at accepting patients with any neurological disease.
Nevertheless, based on Bill’s sad experience, the Montana nursing home acceptance rate for folks with HD is not just abysmally low, it is ZERO—as in zilch, no way, nothing.
This denial of care may be partially due to a lack of knowledge about the care needs of HD patients, but I suspect the denial may be based more on the recognition that HD strikes the young who may well live 20 or more years in their full-care facilities.
Whatever the reasons for denial of care, Bill has a terrible physical ailment that can only get worse. In spite of some memory issues and outbursts of anger at his predicament, his mind still functions logically, and he understands his situation quite well.
Not only does he understand the grim future he faces with HD, he also knows that he is unwelcome at any of the 73 nursing homes in Montana. This is a nasty double whammy that is akin to the way lepers were treated in the Dark Ages.
Surely Montana, the “Last Best Place,” can do better than this. MSN
Editor’s Note: May is HD Awareness month. For more information on the disease, and to find the Long-Term Care Guide for Huntington’s Disease, visit the Huntington’s Disease Society of America website: www.hdsa.org.