Stepping Away to Step Up: When Huntington’s Disease Is Too Much

Stepping Away to Step Up

When Huntington’s Disease Is Too Much

By Ginnievive Patch


Often, I hear the pleas of caregivers saying, “I feel overwhelmed.” “My HD loved one does not qualify.” “I hate my life.” “I want normal.”

Does this sound familiar? The controversial subject of staying/keeping a loved one at home is one that can strike up a fierce, judgmental war, including hateful reprimands from family members without Huntington’s disease. The struggle is real.

For my own family, I had to step away so that I could step up. We were at a crossroads in the HD world. I was caring full time for my end stage mother-in-law, still raising our youngest son, and battling my in-denial, prodromal HD spouse. My life seemed like nothing but a nightmare. If this sounds harsh, do not judge me; hear me out.

Feeling all alone is the silent killer of an isolated, uninformed caregiver who is left flailing along, not knowing what is HD, and what is not. Trying to separate the illness from the person is nearly impossible to do when you’re in the thick of it.

At the time all this was going on in my life, I had to make some really hard choices. My beloved HD man was verbally acting out and targeting his own mom and son and . . . me. I had to make the choice to step away. I searched endlessly for a nursing home to take Nana, and I searched for a house to rent for my son and me.

The night we moved out was a nightmare. The police had to be called, or I literally would have been murdered by my HD warrior.

It was ugly.

It was painful.

It was the right thing to do.

Some may think leaving is cowardly. It is actually brave. Moving a loved one into a home or temporarily leaving a still-working person with HD until later can make you a better caregiver!

Yes, you read it right. I stepped away for five years. During that time, my loved one still worked, and I monitored him. I invited him to all family functions and holidays, and I spent lots of time with him, but I got to go home and get away from it. Our son blossomed and grew. I was able to get my son and myself into counseling, and I visited my mother-in-law every weekend, picking up her laundry, doing her nails, and taking her outdoors. My relationship went from bitterness to pure enjoyment. I looked forward to being with both my man and Nana.

If your own mental health is suffering as a caregiver, if you are feeling resentful, hateful, scared, and you are having trouble coping, think about doing this temporarily to get back on track. It does not have to be permanent, maybe just a week’s vacation without them. Maybe a temporary separation, maybe a divorce on paper to help them qualify for more care, with you remaining a caregiver, maybe a nursing home near you. These are things to ponder. I am not an advocate of divorce or abandonment. I am not saying cut and run. What I am saying is sometimes you can become the best caregiver in the world by putting some space between you and your loved one with HD.

Step away to step up. If you are not making a point of letting yourself have time to heal, you may end up being neglectful and resentful and suicidal. YOU will lose you. Your loved one will suffer because he or she needs love and support, and if you resent your loved one, he or she knows it.

Oxygen is a good thing. It supports life. Give yourself time to breathe.

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Huntington’s Disease: All About the Kids

Huntington’s Disease: All About the Kids

HDYO Announces North American HD Youth Camp

by Sharon McClellan Thomason

Talking to kids about HD can be one of the toughest parts of the Huntington’s disease journey. It’s one thing to explain that Mom or Dad is sick; it’s quite another to explain that it’s genetic and that each child has a 50/50 chance of inheriting the disease. Fortunately, there’s a fabulous resource to help—Huntington’s Disease Youth Organization, or HDYO as it’s commonly known.

Right now, HDYO is gearing up for its annual North American HD Youth Camp at Camp Cedar Glen in Julian, California, August 11-15, 2018. Camp applications are open until April 30, 2018, to anyone ages 15-23 from the United States or Canada who is IMPACTED by Huntington’s disease. Thanks to generous donations, the entire cost of travel, food, and camp is covered for up to 50 young people!

Chandler Swope, Director of Youth Services, says, “We hope that young people will leave camp feeling less isolated, more knowledgeable about HD, and feeling more supported.”

The five-day camp is about an hour and a half from San Diego, California, and includes lots of team-building, paddle boarding, ropes courses, canoeing, archery, and much, much more! Experienced professionals from HDYO, HDSA (Huntington’s Disease Society of America), and HSC (Huntington’s Society of Canada) will be on-site at all times to support the campers. Trained volunteers will also be there to help supervise and to share their own experiences with campers.

This is an amazing opportunity for young people! For more information and how to apply, please visit

HDYO has also partnered with Help 4 HD International again this year to offer youth days at our HIPE (Highly Interactive Participant Education) Day in Gainesville, Florida, on June 30, and at our fifth annual symposium on October 13, in Des Moines, Iowa.

Another tool HDYO offers is an interactive web site ( that is rich in resources for kids, teens, young adults, parents, and professionals. There is also a section for friends of young people impacted by HD as well as a section on Juvenile Huntington’s disease (JHD).

HDYO is an international non-profit organization that was launched in 2012. The idea originated in the summer of 2010 when Matt Ellison, the eventual founder, presented it at the Young Adults Working Group for EHDN (European Huntington’s Disease Network). HDYO is run mostly by young people impacted by HD. In its six years of existence, HDYO has developed a team of over 170 volunteers in a variety of roles. The volunteers include a board that oversees the organization, a translation team, forum moderators who respond to questions posted in the HDYO online forum, HDYO reps who spread positive HD awareness globally, and a feedback team made up of professionals who review content.

Please feel free to contact Chandler Swope with any questions: or 202-674-4848.

Remember: Enroll at before April 30th.


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Choosing Death with Dignity in Huntington’s Disease

Choosing Death with Dignity in Huntington’s Disease

  by Sharon McClellan Thomason

Alan Pfeffer is a retired attorney in New York state whose first wife died from Huntington’s disease (HD) and whose 37-year-old daughter resides in a nursing home, slowly dying from HD. Alan is leading the fight for laws that will allow those like his daughter to choose a peaceful death rather than suffering the ravages that HD inevitably brings in the end stages.

Those of us who have lived with HD have seen the suffering. We’ve seen loved ones who can no longer swallow, talk, sit, walk, or attend to personal hygiene. We’ve seen our loved ones reduced to a decimated body, curled into a fetal position. We’ve seen our loved ones throw up repeatedly, unable to keep down any food or liquids. We’ve seen our loved ones refuse feeding tubes and starve to death, painfully. Perhaps worst of all, we’ve seen our loved ones, like my brother-in-law, resort to suicide, often violently.

While there are currently six states with Death with Dignity laws/statutes (California, Colorado, District of Columbia, Oregon, Vermont, and Washington), none of these laws provide relief for those who are suffering from HD or Juvenile Huntington’s disease (JHD). Based on the Oregon model (the first in the nation to pass Death with Dignity legislation), the law requires standards that are impossible for someone with HD to meet. In Oregon, the following criteria must be met:

  • The patient must be at least 18 years of age.
  • The patient must be capable (defined as able to make and communicate health care decisions).
  • The patient must be diagnosed with a terminal illness and within six months of death, as certified by two physicians.
  • The patient must make two oral requests to his or her physician, separated by at least 15 days.
  • The patient must provide a written request to his or her physician, signed in the presence of two witnesses.
  • The prescribing physician and a consulting physician must confirm the diagnosis and prognosis.
  • The prescribing physician and a consulting physician must determine whether the patient is capable.
  • If either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder, the patient must be referred for a psychological examination.
  • The prescribing physician must inform the patient of feasible alternatives to DWDA, including comfort care, hospice care, and pain control.
  • The prescribing physician must request, but may not require, the patient to notify his or her next-of-kin of the prescription request.
  • The patient must be able to self-administer the medication by swallowing; if the pills are dropped or regurgitated, or if the patient regains consciousness, there is not a second chance.


In order to make sure patients with HD may avail themselves of the mercy intended by these laws, Alan is filing this month to present an argument to the NYS assembly at its Public Hearing on Physician Aid in Dying (PAD).

Alan asks the question that strikes at the heart of the matter:

So why do people with Huntington’s refuse feeding tubes when they can extend their life? Because it is life they don’t want to continue to live. My daughter watched her mother slowly die and spend years rigid, unable to move any body part, unable to speak, orally eat, painful muscle contractions, no hope for a miracle drug being researched, placed by the nursing home staff in front of a TV all day. My daughter has a health care directive not to prolong her dying. She was a woman of the world, a Peace Corps volunteer who served her country by teaching the children of Turkmenistan in Central Asia English, who worked and lived in Thailand teaching English to children, who volunteered as an English teacher to foster care children in Israel. She lived for 18 months in Argentina; she speaks five languages; she toured the world; and she has made her choices and wants the same right of choice that is being considered for other people dying of things like cancer. Let’s not leave anyone behind.

Alan proposes that people with Huntington’s disease execute an advanced health care directive, while still of “sound mind,” that would request PAD when they reach the point that they no longer have what they have personally predetermined as “quality of life.” Just as people are currently able to execute a DNR (Do Not Resuscitate) order or refuse a feeding tube or a ventilator, they should be able to execute a request for PAD.

My husband would not have chosen PAD. He wanted to live as long as possible, in a nursing home, assisted by a feeding tube, to share in every part of our son’s life possible. His brother was the opposite. He had no children, and he had said from the time he was diagnosed that when it got to the point that he could no longer take care of himself, he would take his own life. Any of us would have taken care of him, but he did not want to live life on those terms.

Another shortcoming of current law is that it automatically eliminates the children who are suffering from Juvenile Huntington’s disease, since they have not yet attained the age of 18.

The whole point to this is that end of life should be a personal and humane choice. To this end, Help 4 HD International has issued an official position statement on Death with Dignity, which states in part:

HELP 4 HD International supports efforts to increase services and support for HD/JHD families, including palliative care from the time of diagnosis through their loved ones’ remaining lifespan.  This includes educating the community about what options are available to them at any time in their journey to retain as much control as they can.

HELP 4 HD International is not a lobbying group and thus does not participate in activities to promote legislation on this issue. Neither does HELP 4 HD International have an official position on what families “should” or “should not” do. We believe, though, that Huntington’s patients should have the right to choose death with dignity by a prior health care directive, a prior appointed agent, and, if necessary, physician assistance in order to enable people with HD to access the mercy that Death with Dignity laws intend.

If you wish to read and/or print out our official statement of position, it may be accessed here:

To hear an interview with Alan Pfeffer on “Help 4 HD Live!” click here:


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