Huntington’s Disease

Caring for Elizabeth — A Huntington’s Disease Case Study

Before the onset of Huntington’s Disease, Elizabeth had known a life of privilege. Her father was a Hollywood mogul. Her mother, an heiress to a Texas oil fortune. As an adult she was a successful stock broker who regularly visited the White House, and devoted countless hours to helping, and funding programs to help, people of lesser means than herself.

By the standards of her upbringing Elizabeth didn’t live extravagantly, but she didn’t deny herself, either — she traveled extenstively, dined in restaurants (frequently twice a day, never tipping less than 50 percent) and, of course, she went to the movies as much as she could.

Huntington's Disease sufferer Elizabeth weighed 90 lbs. when Care for You started working with her.

This is what Elizabeth looked like before she began working with Care for You. At 5’7″ she weighed 90 lbs.

But as the disease progressed, Elizabeth diminished. She suffered many telltale symptoms of Huntington’s including involuntary muscle movements and difficulty focusing on simple tasks. She became irritated easily, lashing out at those around her. This led to, respectively, burning more calories than she was consuming, forgetting to eat and being banned from many of her favorite restaurants. At 5 feet 7 inches tall she weighed just over 90 pounds.

Compounding matters, Elizabeth had screaming episodes that turned violent. She would run into traffic outside her apartment building on Connecticut Avenue (suicide risk is high among those who suffer from HD) and roam the hallways, forgetting that she wasn’t dressed. More than once she defecated on the floor in front of her neighbor’s door.

In short order, she was served an eviction notice.

It was at this point that her guardian and conservator contacted Care for You.


“She more than likely would not be with us today if it was not for the caring of Care for You. She’d have been in lockdown, forcibly drugged into submission with no quality of life, and most likely dead by now. The Trust is happy that she has improved a great deal with her life. The ladies at the front desk of her apartment complex have stated that she is a changed woman. Even some of the neighbors who watched the drama through the years have pulled me aside on my visits to the complex. Wonderful…fantastic…wow…incredible!” Nathan N., Guardian and Conservator


But there was good news and there was bad news…

Having Huntington’s Disease Didn’t Make Getting Her Care Any Easier

Knowing that Huntington’s Disease ran in the family, Elizabeth’s aunt (by this time deceased) had set up a special trust fund for her. Should she ever be diagnosed there would be more than enough money available for her care.

But Elizabeth hadn’t been diagnosed.

Her grandmother, her mother and her brother had all died of the disease — she had been her brother’s primary caretaker in the final years of his life. And, having seen what could happen, she refused to get tested.

The bank, not surprisingly, refused to release the funds.

Elizabeth still had savings but she was burning through them quickly, sending money to her surviving relatives (who were more than happy to cash the checks, but wouldn’t come to see her in Washington, DC because she was “crazy”).

In order to save her from herself, many things needed to happen … virtually simultaneously.

  • Care for You helped obtain a stay-of-eviction. We first cleaned her apartment — Elizabeth had been unable to keep up with basic chores for so long that she was effectively living in squalor — removing all health and fire hazards and, ultimately, restoring it to its former beauty. We then were able to move her to a second-floor apartment. (Because of the suicide risk, an apartment on a higher floor presented a clear danger — if she jumped, she’d die. On the other hand, placing her on the ground floor would have meant easy access to traffic.)
  • A Companion was designated to work with Elizabeth, intitially for 3–4 hours a day. We also put a plan in place to increase coverage to 24 hours a day, 7 days a week. This plan included …
  • Getting the diagnosis. In spite of her family history, and in spite of the fact that Elizabeth displayed severe symptoms of Huntington’s Disease, without a diagnosis she was effectively cut off from the money that had been set aside for her care — care that she would not be able to afford on her own, not for very long anyway … Not from us. Not from a quality nursing home. And certainly not from a high-end assisted-living facility. It took 51 visits — fifty-one — to different doctors and physicians, neurologists and psychologists before we were able to find someone who was not only qualified, but able to make a diagnosis. (One psychologist locked herself in a bathroom during the appointment, afraid of Elizabeth’s erratic behavior.) But number 52? That was the charm.
  • Care for You worked with Elizabeth’s guardian and conservator to secure the money from the fund that her aunt had set up for her. It still wasn’t easy, but with the diagnosis in hand in was possible.
  •  The Care Team was assembled.

For Elizabeth, this marked a new beginning.

The team that we put together consisted of seven people — four Companions, our Executive Director, our Care Coordinator, and Elizabeth’s guardian. Even when she slept, there was someone there with her … and awake.

To make up for all the calories she burned, there were always high-fat and high-calorie snacks and meals available to her. (We had to fight her primary-care physician on this one … she was convinced that because Elizabeth was gaining weight she needed to go on a diet. We won, and after working with her for a year she was up to 150 pounds — a healthy weight for a woman of 5 feet and 7 inches.)

We taught her how to brush her teeth again. How to bathe. Not to drink the mouthwash.

Huntington's Disease sufferer Elizabeth after one year of working with Care for You. She regained her weight. And began actively participating in her own life again.

After working with Care for You for a year, Elizabeth had gained her weight back. She was also able to remain in her apartment building and began going out to eat again.

We also bought her new clothes as, before getting the care that she needed, Elizabeth had thrown most of what she owned off of the balcony of her apartment.

Only two of the restaurants that she had once frequented were willing to let her back in. Two was enough. We started taking her out to eat again, every day.

In her life before HD, Elizabeth’s ritual was to drink two glasses of wine with her dinner. She was not an alcoholic, that’s just what she liked to do. The Trust frowned upon this and, in the beginning, tried to forbid it, saying it was bad for her health…

With Huntington’s Disease, health is a relative concept.

And the disruption in routine had a way of irritating her …

A compromise was struck.

We talked to the owners and staff at the restaurants. When we brought Elizabeth in for dinner her wine would be served to her (she didn’t know it had been diluted to 50 percent with water). She got her two glasses and felt great about it. So did the restaurant owners — we paid full price.

Elizabeth Is Now in a Position to Face Her Challenges — and Be Successful

The Court, the Trust, her doctor and her guardian have all told us that without Care for You Elizabeth would have been dead within six months.

Eight years and counting — she is clean, well-dressed, well-fed, and she goes out to her favorite places.

Huntington’s Disease continues its relentless attack, of course. But it does not rob her of security, involvement, pleasure and home.

Elizabeth is not only alive, she is living.

 


If you or a loved one are trying to stay in your own home while suffering from Huntington’s Disease, call us at 301-650-4169.

We can help.

Or if you’d prefer, visit our Contact page to schedule a free, in-home needs assessment.