I Never Thought It Would Get Better, Either
By Leah Amberly Barker
So, this is hard for me to write about. Like really, really hard. My fingers literally try to curl up every time I go to hit a letter on the keyboard.
I need you to hear me out, though. I am writing this for you. The you that is hurting, feeling hopeless, worthless, unloved, alone, and stuck in one place. Hear me out.
A little more than a year ago, I sat alone in an old motel room, rolling a bottle of pills in between the palms of my hand. I can’t even recall the specific events that led me there, but I do remember exactly how I was feeling and exactly what I was thinking.
This will be my first time putting all of those emotions in one place. Or most of them, at least.
The most distinct emotion I remember was hopelessness. I couldn’t see a future in anybody or anything. Usually, if I’m depressed, I’m able to rapidly search my mind for something lovely to cling onto, and eventually, it helps me pull myself out. This time, I couldn’t find anything to cling onto at all. Everything in my head was just … black.
I sat on the musty motel mattress for hours, listening to music I remembered as being my favorite and trying to justify what I was about to do.
I remember thinking that having HD was going to ruin my life. I wanted to have complete control over my brain, and just knowing that I would have to lose myself someday left me feeling like I wasn’t a legitimate human being. And it wasn’t even myself I was mostly worried about … it was the fact that in losing myself, I would probably end up hurting the people I loved the most.
My grandfather was the sweetest man I’d ever met until he got sick. When he did get sick, I’d hear stories about how he’d threaten my grandmother and throw things at her. He began to suffer from extreme paranoia, convincing himself that my family was plotting to kill him. I never got to see him during his rapid progression into HD, but I remember thinking that I was terrified to see him when we finally got to visit. He was really sick by that time, unable to care for himself, twitching, falling, mumbling, and unfamiliar. He wasn’t the big, strong, caring papa I remembered, and the last memories I have of him are the suffering circumstances that HD threw him into.
As horrible as it sounds, I was terrified of turning into him. I have so much love to give, and it crippled me to think that I might degrade into a paranoid, angry, abusive stranger … as unintentional as it may be. I didn’t (and if I’m being honest, don’t) want to be a burden to anyone, emotionally or physically.
And if anybody loves love, it’s me. Sitting in that motel room, I thought about how badly I wanted to fall madly in love, get married while watching the sunset, pop out a whole litter of children, and grow old with the love of my life, but anyone with HD knows that it’s not that simple. My husband would eventually end up as my caretaker. He might end up really lonely while I’m sick, burdened emotionally, physically, and missing me while I’m still alive. And I have the risk of passing HD down to my children if I’m unable to afford fertility treatments.
Not to mention, I had already been suffering from debilitating depression and anxiety for years, and I couldn’t fathom those parts of my brain degrading even more, becoming worse and worse over the years. Oh, and while that’s happening, toss in some memory loss, paranoia, agitation, and whatever else my own body decides to throw in.
The only pro that I had on my list was my family and friends, but at the time, they just weren’t enough to stop me.
It’s not that I didn’t love them. On the contrary, I loved them more than anything. People HAVE to stop with the notion that suicide is selfish. Can it be? Well … sure, anything could be considered selfish, depending on how you look at it. Most of the time, though, people who commit or attempt suicide are suffering from one mental illness or another, which inhibits them from thinking rationally. In my case, I genuinely thought that my loved ones would be better off without me because I wouldn’t have to burden them.
In my head, I believed I was doing everyone a favor, including myself. It was a win-win. I absolutely, positively could not see any other way. I needed the hopelessness and despair to end. I was tired of being depressed. I was so over feeling alone.
I remember barricading the motel room door with a dresser and securely locking all of the deadbolts. The Discovery Channel played silently in the background as I emptied the first bottle, the second bottle, and then the third bottle onto the TV stand, crushing them one-by-one and mixing them together in a pile. I created a funnel from a piece of paper and sifted the mixture into a bottle of beer, swirling it around for a bit until everything dissolved. I begged God to please forgive me, told Him that I loved Him and to take care of my family, and then downed it.
Fast forward 16 months. I’m still here.
And, can I just say, thank God.
After getting out of the hospital, I felt like a baby deer trying to stand up on its wobbly legs for the first time (although the deer probably mastered walking much faster than I did).
It took time, as all good things do.
Ohhhh, that time went by so slowly, but now, I’ve got more to look forward to than I’ve ever had before. I’m in a place that I firmly believed did not exist during those dark times.
I’ve found someone who loves me with all of the baggage I carry along with me. He doesn’t have any mental or physical problems at all, yet he still does his very best to understand what I go through. He knows about HD and what may be to come, but he loves me enough to stick by my side through it all. I know he’s afraid, but he stays and loves me anyway. It blows my mind (in a good way).
Have the fears I had about HD gone away? Of course not. I think about it every day, but I figure that I may as well love the hell out of someone as passionately as I can in the meantime. I’ll love him hard enough to pierce through his memories of me in the future, when times may not be so good.
And I’ve been loving my family, friends, and everyone I can in that way, too. It feels so much better than being lost in your fears.
I have a great job, a beautiful home, and people who love me. I mean, it’s not perfect by any means, but it’s proof enough that amazing things can come from your hopelessness. I still suffer from severe lows and short-lived highs very often, but I’ve slowly been learning how to deal with it better. It doesn’t necessarily get easier, you just get stronger.
Yeah, I know, it kind of feels like you’re reading repetitive advice from some cliché writer, but if nothing else, just know that I’m all too familiar with your struggle, so you’re not alone. I never thought I’d get out, either.
Getting my life back was one of the hardest things I’ve ever had to do, but I’m here now… in all of my messy, clumsy, love-crazy, insecure, depressed, happy, struggling glory. I’m here.
You can be here with me, too.
If you or someone you know is considering suicide, please call the national suicide prevention lifeline: 1-800-TALK (8255).
This article originally appeared in Leah’s blog, “Capturing the Corners.” You can read more of her articles here: http://capturingthecorners.org/welcome-home/
According to the National Institute of Health, the rate of suicide, suicide attempts, and suicidal ideation among people with HD far exceeds that among the general population.
“Suicidal ideation in Huntington’s disease: The role of comorbidity” reports that in the study conducted by the authors, 26.5% of patients in the study reported suicidal ideation, compared with 3.3% in the general population. “In a subsample with the greatest suicidal ideation, alcohol and drug abuse were also predictive.” Completed suicide in HD has been reported to be as high as 13%, a seven- to twelve-fold increase above that of the general population’s suicide rate of <1%, while 27.6% of individuals with HD reported at least one suicide attempt. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3790459/)
To learn more about suicide risk factors and civil liability, please visit this link: https://www.hoganinjury.com/suicide-risk-factors-and-civil-liabilities/
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Huntington’s Disease: Filing for Disability
Huntington’s Disease: Filing for Disability
By Sharon McClellan Thomason
Filing for disability and navigating the system of SSDI, SSI, Medicare, and Medicaid can be both challenging and frustrating. It’s a world we usually know little about until we plunge headlong into the journey of Huntington’s and Juvenile Huntington’s disease.
I consider myself to be a well-educated and reasonably intelligent woman, but I can tell you that helping my son file for disability and associated benefits stretched my knowledge and problem-solving skills to the limit.
Here are some things I learned along the way.
First, some simple definitions you will need to keep in mind—make these a part of your new vocabulary:
- SSDI stands for Social Security Disability Income. This is administered by the federal government, once it’s determined that you have a disability.
- SSI stands for Supplemental Security Income. This is administered by the Social Security Administration and is income-based, providing cash assistance and healthcare benefits (Medicaid—see below) to people with limited income and resources.
- Medicare is a federal healthcare program. Once you’ve been on disability for two years, you are automatically eligible for Medicare. People who have worked and paid into the system are also eligible for disability upon turning 65. Medicare has Parts A, B, C, and D. Part A is hospital/hospice insurance; Part B is medical insurance that covers doctors’ visits; Part C is an optional Medicare Advantage plan; Part D is a prescription drug plan.
- Medicaid is a state-run program for people with limited income and resources. It also covers things not normally covered by Medicare, like nursing home care and personal care services. It is funded jointly by the state and federal government, but eligibility varies greatly from one state to another. States that have granted Medicaid expansion under the Affordable Care Act are more likely to grant eligibility for Medicaid. The map here (https://commons.wikimedia.org/wiki/File:ACA_Medicaid_expansion_by_state.svg#/media/File:ACA_Medicaid_expansion_by_state.svg) shows which states have Medicaid expansion. Medicaid also includes optional dental services for people over age 21.
As a basic review, SSDI and Medicare are federal programs that are not income based; SSI is a federal program that is income based; Medicaid is a state-run program that is income based.
Compassionate Allowance List and Appealing a Denial
When applying for SSDI, it is helpful to know that Huntington’s and Juvenile Huntington’s disease are included under something called the “Compassionate Allowances List,” or CAL. (https://www.ssa.gov/compassionateallowances/). According to the Social Security Administration, “The CAL initiative helps us reduce waiting time to reach a disability determination for individuals with the most serious disabilities. The Compassionate Allowances program identifies claims where the applicant’s disease or condition clearly meets Social Security’s statutory standard for disability.”
So this should make the awarding of disability benefits automatic, right? Not necessarily. The trick to claiming this allowance is knowing where it is listed and alerting the claim worker that HD is on the CAL. Interestingly, HD can be found in two places: under ‘A,’ as Adult Onset Huntington Disease, and under ‘M,’ as Mixed Dementias, where Huntington’s dementia is listed under alternate names. It is NOT listed under ‘H.’ Juvenile Huntington’s disease isn’t so hard to find—it’s under ‘J,’ as Juvenile Onset Huntington Disease. The complete list, with links to the above named, can be found here: https://www.ssa.gov/compassionateallowances/conditions.htm. The listing for each includes the necessary documentation to include with your application.
When I helped my son apply for SSDI, HD was not listed on the CAL. I used the guide developed by Phil Hardt, available through the Huntington’s Disease Lighthouse Foundation (http://hdlf.org/node/210), which many families have used successfully. After a few years of severe psychiatric symptoms, a positive genetic test with a CAG of 45, and a diagnosis by a neurologist, I started the application in the summer, after school was out (I was still teaching full time). Despite following the guide precisely, the application was denied. We then had the option of appealing. By then, I was back at work and was afraid I didn’t have the time to do the appeal properly, so I hired an attorney who specializes in Social Security law. This seemed like the ideal solution since they, by law, do not require any payment up front, and receive a set payment only upon a successful appeal. I should’ve done my homework, though, as I learned that all Social Security law firms are definitely not created equal! The one I hired had me do all the work (gathering and mailing paperwork, filling out forms), and I only met the attorney once—to sign the contract. After that, I dealt with a paralegal who sometimes returned my phone calls, most often, not. I even found out that the appeal had been approved before they knew it!
My hope is that with the Compassionate Allowances, and with organizations that help you with applying for disability, you will not experience the difficulties we experienced. At one time, the Caring Voice Coalition helped people apply for disability; however a statement on their website (http://www.caringvoice.org/disability-assistance/) says, “CVC’s disability program supports patients through the various stages of the Supplemental Security Income and Social Security Disability Insurance application process. Our patient advocates coordinate supporting evidence, assess eligibility, submit claims for benefits and draft arguments. The disability program is temporarily at capacity. We hope to begin accepting new applicants for this service soon.” Instead, they are referring people to the Huntington’s Disease Assistance Foundation and the National Organization for Rare Disorders (NORD).
Another thing I learned that evidently is not generally known is that my son, who had very limited work experience before the onset of HD, qualified for additional benefits as the “disabled adult child of a disabled adult.” The window is very limited, as defined below:
An adult disabled before age 22 may be eligible for child’s benefits if a parent is deceased or starts receiving retirement or disability benefits. We consider this a “child’s” benefit because it is paid on a parent’s Social Security earnings record.
The “adult child”—including an adopted child, or, in some cases, a stepchild, grandchild, or step grandchild—must be unmarried, age 18 or older, and have a disability that started before age 22. (https://www.ssa.gov/planners/disability/qualify.html#anchor8)
Since my son’s father had passed away from Huntington’s disease, and he had a strong work record, Randy was able to qualify for about $250 extra in SSDI benefits, more than he would have received under his own work record.
Social Security also provides something called “Extra Help” with the Medicare prescription drug plan. To see if you qualify and to apply, go here: https://secure.ssa.gov/i1020/start. Note: if you already receive Medicare and Medicaid or Medicare and SSI, you do not need to apply as the extra help is automatic.
As daunting as it may seem, don’t give up on applying for these benefits! If you are a person with HD, get an advocate to help you with applying. The benefits are ones to which you have a right, and they can make a huge difference in your quality of life!
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Hypersexuality and Huntington’s Disease
Hypersexuality and Huntington’s Disease
By Sharon McClellan Thomason
Of the troubling behavioral changes that occur with the onset of Huntington’s disease (HD) and Juvenile Huntington’s disease (JHD), and there are many, one of the most troublesome can be hypersexuality. It’s important to realize that this is a part of the disease, that there is no shame or embarrassment in talking about it, and that there are treatments that can help resolve the problem.
According to an article in Huntington’s Disease News, “Studies have found that up to 75 percent of women and 85 percent of men with Huntington’s report difficulties in their sexual relations.” (https://huntingtonsdiseasenews.com/sexual-problems-huntingtons-disease/)
While a loss of interest in sexual relations is openly discussed in the literature, hypersexuality and inappropriate sexual behavior are not frequently talked about. In fact, when they are discussed, they are downplayed as something that doesn’t occur very often. The same article in Huntington’s Disease News says,
Less frequently, Huntington’s disease may also cause an increased sex drive and inappropriate sexual behavior. Such disinhibition is thought to be due to damage to the caudate nucleus, a deep area of the brain that controls behavior.
Some patients may be more likely to engage in risky sexual behavior, such as one-night stands or sex under the influence of alcohol or illicit substances. It is important to always ensure that safe sexual practices are upheld, including using condoms and taking oral contraceptive pills to avoid sexually transmitted diseases and unexpected pregnancies.
Families will tell you, though, that an increased sex drive and inappropriate sexual behavior are NOT rare; it’s just rarely discussed openly, perhaps because of embarrassment.
In fact, the Journal of Neuropsychiatry and Clinical Neurosciences reports, “Psychiatric syndromes (present in up to 79% of patients) most commonly include impulse control disorders, depression, personality changes, and, more rarely, psychosis or mania. Symptoms include disinhibition, irritability, aggression, apathy, and neurovegetative markers of depression. The suicide rate has been reported to be up to 20 times that of the general population over age 50.1 Increased criminal behavior and hypersexuality have often been reported in HD patients.” (https://neuro.psychiatryonline.org/doi/10.1176/jnp.11.2.173)
Recently, one woman posted in a Facebook caregivers’ group, “I’ve (yet again) been approached by a Facebook friend, and my brother has been harassing women. Young, old, married, or single. He begs for dates and tells them all the same lines about how attractive they are. So far, all I know it that he compliments them ‘sexy or beautiful’ and how he dreams about them. I would be uncomfortable if a man sent these messages to me. He has been doing his for years, and it is getting more frequent. Can I report him to Facebook? He won’t listen to me. I’ve begged, yelled, and threatened, to no avail. Maybe therapy? He’s so lonely. But he’s losing the few contacts that he still has!”
Several people responded with empathy. One said, “Dealing with the same issue with my son. Like many others dealing with this disease, the impulsive behavior is out of control. I have been dealing with this for years. Sometimes it is worse than others. We deal with it as we go. I will send messages and explain the circumstances, and most people understand. As the disease progresses, there will be different things you have to deal with. This is just a stage. Look at it as unfortunately at some point they will not be able to do it at all … deal as it comes is my outlook. It’s temporary, unfortunately.”
Another commented, “I reported my ex (we have two daughters). It’s sad, but I did not want them to see it.”
One woman wrote about the potential consequences. “My son has definitely changed. His mind has taken him to all kinds of stuff … porn from women, men, transvestites, gay, anything he can watch …. very scary to think what’s going on in his mind. However, I have to remember he’s 24, trapped in a body that is not functioning properly. He is not living a normal life, and that is his outlet, I would assume–so it’s definitely a fine line. He’s usually good about keeping within his bedroom and closing the door, so I don’t bother him too much unless he starts texting and sending inappropriate pictures to people. I explain to him that some people will not understand or do not care; it’s inappropriate, and you will go to jail, and at that point, I will not be able to help you … with Huntington’s and especially Juvenile Huntington’s it doesn’t matter how many times you say it; it’s in and out of the brain. It’s a constant battle [because] they cannot manage thoughts like they used to.”
Another woman shared, “My husband is starting to be the same way. He sends messages to my friends all the time, even if he hasn’t met them. He has no concept of it being awkward and weird. He even got blocked too many times on a dating app.”
I went through similar problems with my ex, back before we had Internet and dating sites. He once picked up a strange woman and brought her to our home, even gave her some of my clothes, and sent our young four-year-old son off in her care, not knowing her last name or how to contact her. Another time, he went to my son’s first grade Christmas party and gave the teacher a very sexy piece of lingerie, which she opened in front of students and parents, something that was incredibly embarrassing for her and for the parents and the students who realized something inappropriate was happening.
The problem with hypersexuality and inappropriate sexual behavior does not occur only with males affected by HD. One man shared, “I have been having a similar issue with my wife. She claims that she has no sex drive due to all the medications that she is on for her mood, and her doctors verify her claims of reduced libido. Yet she keeps reaching out to her ex-boyfriend from almost 20 years ago, trying to hook up with him. She claims it was a one-time thing and apologized, yet I have caught her calling him or messaging him many times now. I even checked the GPS history on her phone and found out that she left the house one night after I fell asleep. Sure enough, when I checked the call history on that day, her ex called her, and within minutes, she left the house and went to a local park for about an hour. When confronted with all this, she confessed to meeting him, yet she SWEARS that they just met up to ‘talk,’ yet according to the phone records they talk on the phone all the time (even though she keeps telling me that she doesn’t really talk to him anymore). I just don’t understand how if she supposedly has no sex drive, then why does she keep trying to hook up with this guy?? I finally called his wife and told her what was going on. Now I have seen messages between her and another guy (her friend’s 27-year-old son) that were VERY sexually explicit. This caused a huge argument and nearly ended our marriage.”
The problem, when it’s a woman sending sexually explicit messages and invitations, seems to be quite different than when it’s a man doing the same thing. The same poster added, “If a man with HD sends a woman a sexually explicit message, or flat out asks for sex, 99% of women would be very offended and even get angry. But if a woman offers a man sex or a ‘sexual favor,’ a LOT of men will actually entertain it to see if she is serious and possibly even take her up on it. I have heard of MANY female HD patients being taken advantage of by men because they are hypersexual and being VERY flirty with men.”
In another caregivers’ group, someone shared how his wife enjoyed masturbation with a vibrator so much that when the batteries ran out, she went to the neighbors’ house, naked, and threatened to set their house on fire if they didn’t give her new batteries for the vibrator.
Another woman shared, “My Phd sister-in-law (now passed) was very sexually promiscuous, to the extreme of bringing home men from the bar with her husband and son right there in the house and also taking off with men she met for days at a time.”
The fear that a loved one will go to jail because of inappropriate sexual behavior is real. The tragic story of Joseph Heverin in Delaware serves as a reminder of just how dangerous it can be. Joseph was convicted twice of unlawful sexual contact, something that his family believes stemmed from the effects of Juvenile Huntington’s disease—hypersexuality and poor impulse control. His mother, Dianne says she had reached out to mobile crisis and mental health before the police became involved. Because he had just turned 18, Joseph was considered an adult, even though he was disabled, and he spent about nine months in jail, waiting for sentencing. At 21, he was admitted to Dover Health Behavioral Systems for depression. Dover Behavioral, a short-stay psychiatric facility, tried for a year to move Joseph but was unable to find a place that would accept him because he’d been labeled a sex offender. At the age of 22, Joseph choked to death on a grilled cheese sandwich while eating without supervision at Dover Behavioral. Although his mother fought hard for justice, no one was ever found culpable for his death.
So what can we do about hypersexuality and inappropriate sexual behavior with our loved ones? First, we must recognize that it’s not their fault; this is the HD/JHD brain acting. While it involves problems with executive functioning (lack of judgement, poor impulse control), Dr. LaVonne Goodman considers it a part of OCB (Obsessive Compulsive Behaviors). Goodman, an internal medicine doctor in Washington state who lost her first husband to HD and is the founder of Huntington’s Disease Drug Works, notes that, “These behaviors rarely occur in isolation and are associated with anxiety, depression, agitation and can occasional [sic] be associated with delusional thoughts.” (http://hddrugworks.org/treatments/obsessive-compulsive-behavior)
Her approach to treatment includes both behavioral and pharmacologic approaches. Behavioral strategies include both a “do” and “don’t” list:
“Do” behavioral strategies include modifying the environment by simplifying life:
- Regular schedules/routines. If change is necessary give advance warning
- Allow more time for accomplishing activities
- Identify triggers of overstimulation like noise, too rapid requests/demands
- Non judgemental response
- Give time to cool down
Don’t behavioral strategies:
- Don’t try to rationalize or convince
- Don’t respond with anger
First line treatments are SSRI antidepressant drugs, several of which have been FDA approved for obsessive compulsive symptoms. These include fluoxetine (Prozac®), paroxetine (Paxil®), sertraline (Zoloft®), and fluvoxamine (Luvox®). The NSRI antidepressant drug venlafaxine (Effexor®) has been approved for severe anxiety and is also used for obsessive compulsive symptoms. Duloxetine (Cymbalta®) is a good alterntative NSRI. Often higher doses of these drugs are needed than those used for depression. Clomipramine (Anafranil®) that has combined SSRI and tricyclic that can be used in more severe presentation, but is not used first due to greater side effects than SSRI or NSRI drugs. Mirtazepine (Remeron®) is an atypical antidepressant that is FDA approved for obsessive compulsive disorders.
Antipsychotic are not the drugs of choice for obsessive compulsive symptoms, but are often added if this symptom causes agitation.
Another article in Huntington’s Disease News concurs:
Disinhibition can be one of the most troublesome symptoms in Huntington’s disease, particularly for the family and caregivers. Milder symptoms can include speaking out of turn, embarrassing remarks, and childish behavior. More socially compromising behaviors, such as inappropriate sexual remarks, hypersexual behavior or exhibitionism can be particularly troubling.
Studies also show that disinhibition is closely linked to delusions, irritability, and agitation, suggesting that the symptoms may be on a spectrum of more classical psychotic symptoms, also commonly seen in Huntington’s.
The problems may also be more severe in younger Huntingtin gene carriers. The reviewers noted that disinhibition can be treated both with behavioral interventions and with selective serotonin reuptake inhibitors (SSRIs). Drugs used for behavioral problems in frontotemporal dementia might also be valuable. (https://huntingtonsdiseasenews.com/2016/09/29/psychiatric-and-behavioral-symptoms-in-huntingtons-ignored-in-research-review-finds/)
Others report having their loved ones put on a medication that lowers the sex drive. As always, consult with your loved one’s doctor before making any medication changes.
Most importantly, recognize that it’s okay to talk about this problem, that it’s a symptom that, if left unchecked, can lead to legal problems, and that it IS treatable! Keep talking because this subject is no longer taboo!/* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
Placing a Loved One with Huntington’s Disease
Placing a Loved One with Huntington’s Disease
By Katrina Hamel
In January of 2009, I started caring for my mom in my home, after years of her being homeless, ill, unreachable and 3,000 miles away. At the time, I was so glad to have her at home that I did not even consider placing her in a care facility.
Between 2009 and 2012, my mom’s psychiatric and behavioral issues became a big problem for her and for my family’s day-to-day life. She also had some of the worst chorea and eventually dystonia that I have ever seen. She would become very angry and would throw things, hit and scream. She also had paranoia and delusions that must have been terrifying for her. I had always wished that I’d found her sooner, so I could have gotten her in to see an expert in Huntington’s Disease, thus avoiding some of the pain and sadness that can come along with being unmedicated when you need medications. Some days were really hard, and I lacked resources in my area and knew no one else going through anything similar.
I had always thought about the idea of placement, but most of the time, I had too much guilt to actually “try hard” to get her placed. By that, I mean that I would call places and ask simple questions about cost, insurance, and Huntington’s disease experience and history. In doing this, I realized that the intake offices in very few places knew what HD was. I would guess that I called around 15 different homes that were near me, and out of those care facilities, two places had heard of HD, and one place had someone for a brief stay, but it had been years ago. I thought about how hard this must be for families who have nowhere to go, no places that know what HD is and how to help them. I remember thinking, I am a caregiver! I can do this! I can take care of MY mom! But at what cost? The attention to my kids, my job, the cleanliness of my house, my own health, sleep, the list goes on.
My background, before hands-on care of my mom, was in caregiving. I took care of people that had Alzheimer’s, dementia, and chronic diseases. I also specialized in Hospice care. I worked in care homes, and I also worked in people’s homes that wanted to stay home versus go into a care facility. Nothing could have prepared me for caring for my mom, though. HD is a whole different type of care that requires endless amounts of patience, acceptance, strength, disassociation, and the ability to continue day after day.
The bad days were bad, hitting, pushing, screaming, yelling, cursing, throwing food, falling, not bathing, spitting, talking to the dogs, paranoia, delusions, throwing excrement, screaming for someone to call 911, saying vile things to me and my family, breaking things and hurting herself. Good days didn’t happen in my home; good days were defined as only two or three of the above situations happening instead of all of them. I remember not even being tired at one point; I was on auto pilot; I survived, and that’s how.
My mom had always refused care from a primary doctor, a neurologist, a psychiatrist, even an eye doctor at some point. I called the police on her, in hopes of creating a paper trail for when the time came that I would be forced to place her involuntarily. She went to the ER one time, and the social worker told me that basically she was my problem, that my mother declined placement, and that she said she was fine living at home. I tried educating this woman about HD and how things may seem fine, but they weren’t. I also told this woman that I would not be picking up my mother, that they needed to help me with her care and medications, etc., before she came home. That didn’t happen, and I ended up having to pick her up.
Fast forward – I took my mom to the store for our routine monthly trip, and at some point, she decided to jump out of my car, screaming and yelling. I had my son in the car, so I had to go park and get her out of the middle of the road because she couldn’t walk well. She managed to walk/crawl/stumble into the nearby liquor store and was destroying the inside of the shop. She was screaming to call 911. So we did. I explained on the phone that my mom had HD and what that meant. They, of course, had no idea what I was describing, so I did ask for the psychiatric team to accompany them. The police came, and so did the psych team. I talked to the woman about my mom and what had been going on at home and the fact that I had been reaching out to every agency I could think of, to no avail. She saw that I had a child and knew that there was no way my mom could continue living with us without having medications on board.
My mom stayed in the hospital while I called all over Santa Barbara County and all of California, really, looking for a home that would take someone with combative behaviors and that has Huntington’s disease. I found no one willing to do so. The social worker told me that she would be releasing my mom. When I said she couldn’t come home, she replied, “How would you like it if your mom just wandered the streets of Lompoc?” Back then, I was a lot less informed about what should have happened in this situation. I said that the hospital, and more specifically the social worker, would be held liable if anything happened to her. This woman began looking for a facility to take my mom. Eventually my mom ended up in Los Angeles, which was 4.5 hours away from me and all of her family. When I walked in, the smell of urine smacked me in the face, a man was screaming and walking into a wall, there were three caregivers watching TV and ignoring everything around them. I knew I wasn’t happy, as my standards for care are pretty high. My hope was that she could get on some meds that would stabilize her, and I could get her moved closer to home or even back into my home.
Over the next several months, my mom would do well on the medications they were giving her, and we visited as often as we could. Some days, she would refuse her medications, and they would have to be forcibly given. This opened my eyes to the fact that she needed to be in a home that could provide this type of care. I would visit, and she seemed to become more and more submissive, almost defeated. Slowly, I realized that she was progressing pretty quickly. I then moved her to the care home I worked at that was for low-income people on Hospice. I was able to stay with her every day, sleep in her room next to her, and regain the love that was always hidden by daily caregiving and HD. She died 11 days later.
Tips to Help with Placement
I’d like to share some key knowledge that I have gained from my story and the stories of other people that I have helped with placement.
Since 2012, I have helped several families find placement for their loved ones. Here is a list of factors I found to be the most important to consider and talk about:
- Insurance/veteran benefits
- Financial obligation to the family
- Distance from home
- Quality of care
- Stages of care, through Hospice?
- Knowledge of and willingness to take someone with HD
- Do they have any waivers available (for someone that is young?)
Start by getting a notepad and writing down the names and phone numbers of facilities in your area, or the area of interest. Have a list of questions that you want to ask and start by asking to speak with someone in the admissions office. If you have insurance, I would start by asking a care facility if they accept your insurance, and if so, does that cover all the cost? If it doesn’t, what will be the monthly cost that the family needs to come up with? At this point, if there is a financial cost that you or your family will not be able to afford, I would ask about financial assistance. I would also reach out to your loved one’s branch of armed forces if applicable, to see what is available. With each question, you will see if there is any need to move on to the next question, or if it’s time to move on to the next facility.
I would then start talking about Huntington’s disease and listen to their reaction. Sometimes people have no idea; sometimes they are almost an instant no. Other times, they have had someone with HD and are willing to take someone else with HD. Be ready to talk and educate, if they are willing. You are also welcome to download our brochure (https://help4hd.org/education-resources-information/) What is Huntington’s Disease? to have facts to support your conversation.
Something to remember is that “no” doesn’t always have to be accepted. You can still ask if there are any ways around it, if there are exceptions. In many states, in the care home world, they are licensed to care for certain populations, and sometimes this includes only adults over the age of 55. A lot of times, our community needs care prior to age 55. Each facility that has this particular license also has a certain number of waivers that allow them to care for a handful of people outside of their license. This is where younger adults with HD that need care will typically fit into.
Something to consider is, do you want to ever have to move your loved one once he/she is placed? When I placed my mom, I was glad to know that they did offer end-of-life care; even though my hope was to bring her closer to home, it was nice to know that I wouldn’t HAVE to move her. If you do not want to move them again, an important question to ask is, “Do you offer Hospice care?”
If you live near the care home you are looking into, stop by for a visit. Try not to judge the book by its cover, and introduce yourself to the caregivers in the home, if possible. Oftentimes, care homes that have the nicest, most loving people working there don’t always have an updated facility. But would you rather have great quality of care or an aesthetically appealing building?
Some important tools to have and use are social workers who have experience with placement and HD. Even if your loved one isn’t being seen by a specialist, you can reach out to your local Center of Excellence and request someone to speak with. I think having someone as support and backup from a Huntington’s disease organization can also be helpful, someone to help you navigate your specific situation. For whatever reason, sometimes care homes listen to social workers or advocacy groups more than the families, though we all know that the families are the experts! Last year, I helped a woman with placement after her family found me through Facebook. She was no longer verbal, mainly bedbound, and the family was low-income, with only state insurance. They had tried many different homes and were turned down because she had HD. I started to help them, letting care homes know I was part of an advocacy group, trying to help a family survive, as the husband needed to get to work and was having trouble caring for his wife. I would get the same story, and I started describing the care that this woman required, that she hadn’t been combative in over a year, and that she was quite docile. After talking to them about her needs, they were open for more discussion. I asked them about their waiver count, and they had two waivers available. Slowly, the process began to move her into a facility that benefitted her and her family.
Sometimes, I have helped families in situations that didn’t work out as easily, and they had to struggle before we came up with a plan.
Don’t lose hope. Do your homework and gather a team of soldiers to help you battle and advocate for you and your loved one.
Katrina Hamel is the vice president and CFO for Help 4 HD International Inc. She is currently caring for one of her brothers who has HD. Please be sure to tune into Help 4 HD Live! on Wednesday, June 13, at 4 p.m. ET/ 1 p.m. PT to hear Katrina talk about the challenges of placing someone with Huntington’s or Juvenile Huntington’s disease. You can listen to the show live (or in the archives after June 13) at http://www.blogtalkradio.com/help4hd/2018/06/13/challenges-in-placing-our-loved-ones-with-hd./* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
Huntington’s Awareness Month, Here We Come!
Huntington’s Awareness Month, Here We Come!
By Ginnievive Patch
May is the month that inspired my caregiver’s book, I Fight for Understanding. May is Huntington’s Awareness month!! As a way to give back and help educate other caregivers, I had decided to write tips for each day of the month every year, and Help 4 HD published one of those years into an easy-to-read booklet that reads like a daily devotional.
When my ex-husband, and current charge, was first diagnosed, I did not have a complete grasp of how convoluted the illness is. I was beaten down by his irritability and demeaning comments. I was constantly trying to fix myself. I was blessed enough to have met a group of people online that helped me learn the truth about this illness. They supported me, educated me, and befriended me, so now I feel it is truly my mission to do the same for other caregivers.
I am an RN (registered nurse), which also hands me the responsibility to educate the community as a whole. Help 4 HD is a leader in spreading awareness and education for families. This group educates law enforcement, publishes books and films, and has public conferences to share information and enlighten the world. I ask you to take up your purple and blue flag and help continue this mission and join forces with Help 4 HD. We are a force that is making waves. HERE we come, world!
I Fight for Understanding: 31 Days of Coping with Huntington’s Disease may be purchased in paperback or on Kindle from Amazon. If you order from Amazon Smile, you get the same products, service, and benefits as from Amazon, but you can designate Help 4 HD as the nonprofit that will receive a donation from Amazon for every product you purchase. The Amazon Smile link for I Fight for Understanding . . . is https://smile.amazon.com/Fight-Understanding-Coping-Huntingtons-Disease/dp/1545534632/ref=sr_1_1?ie=UTF8&qid=1526322946&sr=8-1&keywords=I+Fight+for+Understanding.
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Gastrointestinal Symptoms in Huntington’s Disease
Gastrointestinal Symptoms in Huntington’s Disease
By Katrina Hamel, Katie Jackson, and Sharon Thomason
Let’s talk about one of the “untalked about” symptoms of Huntington’s disease: gastrointestinal (GI) issues. According to Dr. LaVonne Goodman’s article “Gastrointestinal Problems in Huntington’s Disease,” “Human study shows that inflammation in the esophagus (swallowing tube) and stomach is common and occurs more frequently in Huntington’s disease (HD) as it progresses. Study also shows that individuals often do not complain. Lower GI function has not been investigated in individuals with HD, but if mouse models of HD are predictive, we can expect problems there, too. But the biggest contributor to gut distress in HD is likely due to medication side effects, less intake of water and more sedentary lifestyle as the disease progresses.” More details, including suggested treatments, can be found here: http://hddrugworks.org/dr-goodmans-blog/gastrointestinal-problems-in-huntingtons.
Anecdotal evidence suggests that lower GI function is indeed a problem for many with HD, just as upper GI function is. Three of the members of Help 4 HD International’s Executive Board (Katrina Hamel, Vice President and CFO; Katie Jackson, President and CEO; Sharon Thomason, Executive Secretary and Director of Education) decided to share their stories.
Sometimes, people with Huntington’s Disease experience gastrointestinal complications due to medications, which is common in people outside of the HD community as well. In my mother’s case, she took zero medications. Believe me when I say she needed them, because she truly did, but medications were not the reason for her gastro discomfort.
As my mom’s disease progressed, she had many body systems change and slowly fail her. Before she had psychiatric issues, before she had behavioral issues, and before her chorea, she seemed to have an “upset stomach”; we ALWAYS had Imodium and Pepto in our medicine cabinet. As time moved on, and she continued to physically change, so did her bowels. Some days, my mom would go to the bathroom several times with no results. This would frustrate her to no end. Her stomach would become distended, and she would have trouble eating. Can you imagine? This must have been so uncomfortable and was also something that triggered perseveration.
This wasn’t always the case, though; she would also have days where she would go too frequently. On these days, we needed to stay close to home because her bowel movements were constant. Her skin would become raw. We needed to clean the bathroom several times a day, and I could always hear her growling, upset stomach. Some days, she wouldn’t be able to get from her room to the toilet quickly enough, and she would leak or have full blown accidents on the way there. This caused her so much shame, even though we tried hard to avoid her feeling that way. My mom ate a balanced diet, and despite our efforts, we never did find any type of food that made the GI issues better or worse.
Dr. Goodman suggests that gut motility and absorption of nutrients are both impaired in patients with HD because of a compromised lower GI function. This was the case with Katrina’s mother. Dr. Goodman also cites a 2009 study which shows that 32 percent of HD patients had an inflammation of the esophagus (esophagitis), and almost an equal number had inflammation of the stomach (gastritis). Many experienced both. This is the case with Katie’s husband.
I remember when I first found out my husband was at risk of inheriting Huntington’s disease I went to town, looking up as much as I could to learn more about HD. What I read was terrifying. To think my husband was going to have to endure the suffering I was reading was an indescribable feeling. My husband now has been living with Huntington’s disease for over 13 years. Little did I know upon that first google search that all the symptoms I was reading about weren’t going to be some of the most challenging symptoms we would have to deal with.
One of the most extreme struggles we’ve dealt with is issues with my husband’s stomach. That first google search, I didn’t see anything about gastrointestinal problems. Even when my husband started experiencing severe stomach pains and excessive diarrhea, I could still find very little information about this in the searches I did. The one place I was able to find a lot of information about GI issues associated with Huntington’s disease was in the support groups on social media. It was a common topic. Caregivers are constantly talking about how their loved ones are suffering with GI problems.
The symptom my husband was experiencing was not only incredibly uncomfortable and sometimes painful for him, but it also scared me. I was constantly wondering if he was dehydrated, and keeping my husband at a stable weight once the GI problems really kicked in was impossible.
My husband has been on anti-diarrhea medication now for over six years, and even with that medication on board, he still has problems daily. We have had him see our primary care doctor as well as a GI specialist, and no one can figure out what is wrong. They thought he may have Crohn’s disease, but they ruled that out. When they couldn’t figure it out, his primary care doctor said he was probably dealing with IBS (Irritable Bowel Syndrome). I accepted that diagnosis until I started seeing things pop up all over the internet from HD families living with the same problem I was seeing.
A little over a year ago, we placed Mike in a care home, partially because of the severity of GI symptoms. Around Christmas time this year, we noticed that my husband started throwing up. Not only was he throwing up, but he was intentionally making himself throw up. I brought my husband home for Christmas to make sure he was here when the kids woke up Christmas morning. Right when we woke up, Mike started throwing up everywhere. I decided to send my kids to my mom’s for the day. They deal with HD already, and I wasn’t willing to let the memory of Christmas with their dad throwing up all day be a memory they had of him. My mom came and picked my kids up, and I spent all day in a dark room holding my husband as he made himself throw up all day. He is pretty much nonverbal at this point, but he did express to me that his stomach hurt, and when I asked him how he felt, he responded, “like crap.” That is a Christmas I will never forget. In order to protect our children, my husband and I weren’t able to spend Christmas with them that year. Was it hard spending Christmas isolated away from our children and family? Of course, it was. The isolation wasn’t the hardest part, though; the hardest part was watching my husband suffer the way he was with stomach pains all day.
The throwing up and stomach pains continued for about a month. We talked to our specialist about what was going on. One doctor thought it may be a psychiatric symptom, kind of like an OCD behavior. I still, to this day, believe that may have been part of it. When I asked Mike why he was making himself throw up, he told me it was because his stomach hurt all the time, and it was the only thing that made him feel better. So now, myself, my mother-in-law, and the nursing staff at the facility my husband is at have really started watching him closely. We are concerned about dehydration and weight loss, but our biggest concern is Mike’s comfort. Can you imagine having to make yourself throw up multiple times a day to try to get some relief from the stomach pains you’re experiencing? It’s awful. We put Mike on Protonix as well as anti-nausea medication to see if that would help. After a while, we think it helped because we don’t see him making himself throw up anymore. I am not sure if this is because of the medication or because he has really cut back his eating to hardly anything now.
If your loved one living with HD is experiencing GI problems, please know you are not alone. There are a lot of us out there trying to help our loved ones on our own with this symptom because it is rarely talked about, and no one really knows how to help our loved ones.
Like any of the untalked about symptoms of HD (hypersexuality, suicide, psychiatric), GI falls into this category as well. It is hard to talk about these things, but you are not alone, and we need more research about HD and the gut. Like all HD symptoms, your loved ones may not experience GI problems, just like your loved one may never manifest chorea over the course of the disease. I am just noticing there are a lot of common stories out there, and I think we need to talk about this issue.
My husband and two of his brothers suffered from HD. Paul and his youngest brother both had severe problems with vomiting. No matter what they ate, or when, chances were, it was coming back up. Their mother, Gwen, was the caregiver for both, and she was from the old school South where we believe that one of the ways you show love for people is by feeding them. It was so frustrating for her not to be able to feed “her boys” the way she wanted. Paul stopped eating because he either choked on or vomited up his food. Paul was still mobile at that time, so the decision was made to insert a feeding tube so that he wouldn’t choke or vomit anymore. Unfortunately, a feeding tube does NOT prevent vomiting, and with vomiting comes aspiration. With aspiration comes pneumonia. Paul continued to vomit and aspirate, even with the feeding tube and not eating. The same was true of his brother, who also had a feeding tube and went through a continuous cycle of vomiting, aspiration, and pneumonia. Both ultimately passed away from pneumonia, a direct result of the GI symptoms.
As always, if your loved one is experiencing GI issues, contact your care team right away. It must be terribly uncomfortable for our loved ones to have to deal with these issues, and if there is anything we can do to relieve some of the pain, we should try. Until then, families will continue to help each other through these symptoms, giving advice to each other like we always do!
Help 4 HD Announces Huntington’s Disease Awareness Month Programs
Help 4 HD Announces Huntington’s Disease Awareness Month Programs
By Sharon McClellan Thomason
“We are excited this year about our programs we will be launching in the month of May for HD Awareness Month,” says Katie Jackson, president and CEO of Help 4 HD International Inc. “This year, we spent a lot of time thinking of things we could offer our community during the month of May.”
Beginning today (May 1), we are making available to the HD/JHD community, free of charge, an “a-WEAR-ness” package. The package includes wristbands, buttons, a keychain, a window decal, and brochures. We are also offering a set of six communication boards. You may order all or any portion of the package. Items will be shipped at no cost, but because of the prohibitive cost of international shipping, the package will be available only in the United States.
“We started creating projects like communication boards and window decals to bring awareness about what Huntington’s disease is to first responders and the general public when approaching a car with one of our loved ones in it,” Jackson said. “We do hope that our community finds value in the items that we came up with.”
The window decal alerts first responders that there is an individual with Huntington’s disease on board and lists some of the symptoms that might occur with that individual.
A-WEAR-ness items can be ordered at https://www.research.net/r/Order_Form_May_2018.
Something we are extremely excited about offering for the first time is our long-anticipated award-winning JHD documentary, The Warriors: Fighting the Incurable Juvenile Huntington’s Disease. In exchange for a donation to JHD research, you may receive a DVD or a download of the documentary. Levels of donations are:
- $15—receive a DVD of the documentary
- $10—download a permanent copy of the documentary
- $3.99—download a copy of the documentary to keep for 48 hours
To make a donation and order your copy of the documentary, go to https://help4hd.org/events/the-warriors-fighting-the-incurable-juvenile-huntingtons-disease-is-now-available/.
Another feature of HD Awareness Month is a special radio program every Wednesday in May. Programs air live at 4 p.m. Eastern/1 p.m. Pacific and may also be heard in our archives. To listen, go to www.blogtalkradio.com/help4hd.
You can also go to our website and download a copy of a Proclamation establishing May as Awareness Month. The Proclamation can be customized for a particular city, county, or state. We encourage as many people as possible to consider doing this for your hometown, county, or state! The template can be found here: https://help4hd.org/events/request-a-proclamation-from-your-city-or-county-for-hd-awareness-month/
Finally, a new article will run in The Huntington’s Post each Friday in May. The articles will offer information and insights into rarely talked about symptoms of HD and JHD, including gastrointestinal issues and hypersexuality.
A couple of years ago, Katie Jackson came up with Help 4 HD International’s motto, “Help 4 HD International is in the trenches with the people because we are the people.” Jackson says, “We are your community, living in homes that are impacted by HD every day. We love our community and want to bring as much support and resources as we possibly can. We are your grassroots organization started by families and continue to be run by families. We hold tight to our grassroots values and know that we are fighting to be the last generation to live with Huntington’s disease and Juvenile Huntington’s disease the way our generations and past generations have been forced to do. We hold tight to the hope that one day soon a viable therapy or the cure will be found. Till that day, we continue to fight beside you, proud to be a part of a community as compassionate, resilient, supportive, and strong as our Huntington’s disease community.”/* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
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./* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
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 https://en.hdyo.org/eve/events/569.
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 (https://en.hdyo.org/) 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: email@example.com or 202-674-4848.
Remember: Enroll at https://en.hdyo.org/eve/events/569 before April 30th.
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: https://help4hd.org/wp-content/uploads/2018/04/HELP-4-HD-Death-with-Dignity-Position-Statement.pdf.
To hear an interview with Alan Pfeffer on “Help 4 HD Live!” click here: http://my.blogtalkradio.com/tools/#/my-episodes/edit?episode=9611851