Huntington’s Disease Caregivers: You’re Not Alone (article)
This article provides useful tools to help you care for an adult living with Huntington’s Disease (HD). It is based on the video, Huntington’s Disease Caregivers: You’re Not Alone. You may not feel prepared for this role but know that there are resources and a community of HD caregivers to help you.
We’ll look at the early, middle, and late stages of Huntington’s disease and focus on caregiving information and recommendations related to each stage. We’ll also cover what to expect as HD progresses, how to prepare, and provide strategies to help you along the way.
Let’s start with a quick overview of Huntington’s Disease. HD is an inherited neurodegenerative disorder caused by the mutation of a single gene. Three major areas impacted by HD include:
Although, HD can occur in children as well as adults, many people with HD will begin to experience symptoms in mid-life. Keep in mind that the disease may progress differently for each person.
Caregiving during the Early Stage of Huntington’s Disease
What to Expect:
In the early stage of Huntington’s disease, people are generally independent and can care for themselves. Early symptoms may include:
- Chorea: Involuntary motor movements, such as twitches or tremors, that often begin in the face and hands.
- Mood and Behavioral Changes (Anxiety, Sadness): Mood can be affected, and a person may begin to suffer from anxiety and depression. They may become more irritable and angrier. Be sure to let a doctor know if you notice any of these symptoms.
- Suicidal Thoughts: If the person expresses suicidal thoughts or doesn’t want to go on living with the disease, it’s important to connect them with help immediately.
Receiving this diagnosis, and experiencing these changes, can be very distressing. Participating in a support group for people with early-stage HD can help the person you care for ease their distress and learn pro-active coping skills. Individual counseling can also be very helpful. One helpful resource is the National Suicide Prevention Helpline (800-273-8255)
Make educating yourself about Huntington’s Disease a priority during the early stages of the disease.
- Connect with a genetic counselor: Because HD is a genetic illness, you may be wondering if you should get tested for it. Genetic counselors can provide information, support, and guidance. Before getting tested, it is highly recommended that you meet with a genetic counselor.
- Learn all you can about Huntington’s and connect with medical providers who have experience with the disease. People living with HD will benefit from a healthcare team comprised of a primary care doctor, a neurologist, and a psychiatrist. The Huntington’s Disease Society of America website includes information on the HDSA Centers of Excellence across the United States. This is a good place to find medical specialists experienced in HD.
- Explore available medications and therapies: Although there are no cures for Huntington’s yet, there are medications to treat and manage the symptoms. You may also want to explore current research opportunities for HD-specific trials.
- Reach out to local resources: Social workers can help connect you to resources and referrals in your community, as well as provide you with supportive counseling.
How are you feeling about your loved one’s diagnosis? Sadness, anger, fear? Disbelief? Perhaps you feel relief at having an explanation for the unusual changes you’ve been observing. All of these feelings are normal.
Huntington’s disease can progress over 10 to 20 years. As a caregiver, it’s very important to find support — even before you think you need it.
It’s normal for caregivers to feel grief and loss throughout the disease process. Two types of loss that are common for caregivers are ambiguous loss and anticipatory grief. Ambiguous loss is the grief we experience when someone is “there but not there” – when they are not the same person they used to be. Anticipatory grief occurs when we know a loss is coming and begin grieving before they are gone.
Although there is no one right way, there are healthy ways to deal with your grief such as getting support early, being aware and accepting your feelings, and taking time to grieve.
Healthy ways to grieve may include:
- Writing in a journal can help you to name and express your feelings. Many caregivers find journaling useful, even therapeutic.
- Physical exercise, prayer, meditation, relaxation exercises, support groups, talking one-on-one with a friend or counselor, and creating new rituals can help you stay well.
- Make the time to do things you find fun and fulfilling.
- Finding ways to reduce stress is a priority for HD caregivers.
Huntington’s is a disease that affects everyone in the family in different ways. This includes you as the caregiver, the person with HD, their relatives, and friends. Each will require their own kind of support.
Children who have a parent with HD may benefit from talking to a counselor and checking out resources designed specifically for children on the HDSA website.
Be aware that you may not have the support and understanding you need from those around you. They may not have experience as caregivers and can’t relate to what you’re going through. Caregiver support groups offer a safe, caring environment to share experiences and learn from others in similar situations. Support groups are free, online and in-person.
Both you and the person you care for will have to learn to balance HD symptoms and care needs with the desire to be independent. You both should keep dates with friends, keep up with interests and hobbies, and do the things that you enjoy.
A common question caregivers ask, is what will happen to the person I care for if something happens to me? One thing to do is to make sure that your own legal and financial documents are updated.
This is also a good time to encourage the person with HD to make or update legal and financial arrangements, especially before they experience significant cognitive changes. For them it’s best to speak with an attorney who specializes in disability and estate planning. Key documents to complete include:
- Durable power of attorney for finances
- Advance Health Care Directive
- Will and/or trust
- POLST or DNR
This is also the time for the person with HD to sign a release of information to allow medical staff to speak with you and others who are closely involved in their care.
- Employee Benefits: If you or the person with HD is employed, it is important to contact the Human Resources department to learn about eligible benefits, such as long-term disability and paid and unpaid family leave options.
- Government Disability Benefits: Securing financial help from the government can be a challenging and confusing process. We recommend seeking out experts to help you early on. Consult with an attorney, a community organization or legal aid office that specializes in Social Security Disability Insurance, or SSDI, and Supplemental Security Income, or SSI. They can also help you navigate Medicare and Medicaid.
- Medicare: A person is eligible for Medicare when:
- they turn 65 or if they become disabled before 65
- have been receiving SSDI for 24 months.
Note: It is important to note that Medicare does not pay for long-term care beyond the first 100 days, such as an assisted living or skilled nursing facility.
- Long-term Care Insurance is only available if obtained before receiving the diagnosis. The person you care for may be eligible for long-term care through Medicaid if their assets and financial resources are low enough.
Huntington’s Disease – Middle Stage
During the middle stage of Huntington’s Disease, a person will need more help with basic personal care, such as bathing, dressing, and brushing their teeth. They may experience more difficulty thinking clearly, and display more behavioral changes, such as inhibition, impulsiveness, or aggression.
As the disease advances, it is common for caregivers to feel isolated and overwhelmed.
Too often, just when you really need more support, friends and even family may stay away due to their inability to witness your pain and the person for whom you care’s decline. It’s common that friends or relatives may not have an understanding of the disease, and they might have a difficult time knowing the type of support that you need. Reach out with suggestions of specific ways they could be more supportive. Some people also find that a facilitated family meeting can help. Follow up with a social worker for more information.
If you’re feeling depressed, anxious, or angry, know that these emotions are hard to deal with on your own. Consider talking with your doctor or counselor and attending a support group or a retreat designed for caregivers.
Caregivers often don’t feel they need respite until they experience a crisis or problem with their own health. Some signs that you need a break include:
- Health issues, like a rash or an ache, that doesn’t go away.
- Rising blood pressure.
- Not managing your own chronic health conditions.
- Trouble sleeping.
- Feeling anxious, irritable and less patient.
- Turning to alcohol or drugs in an effort to relieve your stress.
These are all signs that you need more support and time to take care of yourself.
There are effective ways to help you cope and feel better. Don’t wait to ask for help!
- Take a break!… Respite can come from a family member, friend, or in-home professional.
- You can also create self-care moments throughout the day by taking small, intentional breaks for yourself, even if it’s just 15 minutes to drink a cup of tea, exercise, or engage in another enjoyable activity of your choice.
- And if you need more time-off, there are out-of-home respite options, like adult day programs or a short-term stay in a 24-hour care facility.
Remember, as HD progresses, it’s easy to put-off your own healthcare needs. Be sure to prioritize your physical and emotional well-being! Keep your doctor or therapist appointments, visit with friends, and do activities you enjoy. Self-care benefits both you and the person you care for.
It may cause you anxiety to take time for yourself because you worry something bad will happen, or you feel guilty doing it. The truth is, it’s essential to confront these concerns and make time to step outside of the caregiver role.
To find respite and other support services near you, contact your local Area Agency on Aging. Go to the Family Caregiver Alliance Family Caregiver Services by State or use the National Eldercare Locator. Check with your local Center for Independent Living and if the person with HD is a veteran, contact the VA Caregiver Support Program to see what resources they offer.
Because HD causes motor changes, it’s important to identify potential hazards that may exist in the home.
- Get a PT assessment: A Physical Therapist, or PT, can do an in-home safety evaluation and suggest modifications, such as bathroom grab-bars for getting in and out of the shower. PTs can also recommend other types of equipment and strategies to prevent falls and injury.
- Get an OT assessment: An Occupational Therapist, or OT, helps promote independence and safety for the person living with HD. They can help identify ways to complete daily activities and manage personal care. They also have a wide knowledge of assistive devices.
- HD ID card and bracelet: For personal safety outside the home, we recommend that the person with HD carry a card stating they have Huntington’s and wear an ID bracelet with emergency contact information.
- Reach out to local police and fire departments: Because the disease can cause behavioral changes which can lead to 911 calls, consider reaching out ahead of time to your local police or fire department.
Medical Care and Nutrition
Get referrals for these types of professionals:
- Speech therapist: People with HD may develop difficulty swallowing their food and beverages. A speech therapist can determine what is causing the swallowing difficulties and make recommendations to reduce the risk of coughing or choking.
- Dietician: Difficulty eating and swallowing, as well as the general progression of HD, can cause weight loss, which can lead to infections and pressure sores. People with HD require a higher caloric intake. A dietician can guide you on proper nutrition to support a healthy weight and immune system.
- Palliative care is a type of supportive healthcare to improve the quality of life for people with chronic conditions. Palliative care teams can help to manage symptoms and reduce suffering. And you don’t have to be in hospice to qualify.
Contact the person with HD’s medical team for referrals to any of these services. You are their advocate; and their connection to care and helpful services.
Late-Stage Huntington’s Disease
A person in late-stage HD will need help with all of their personal care. They will experience muscle rigidity or stiffness, as well as involuntary spasms.
- Swallowing: Just swallowing food can become a major challenge. Be aware food or liquid inhaled into the lungs can lead to aspiration pneumonia, one of the most common causes of death for someone with HD.
- Communication: A person with HD’s ability to speak and communicate their needs will be very limited. Use eye contact, touch, and a calm voice to reassure them. There are also communication boards and other tools that may help. Talk with the medical team, including a speech therapist, about interventions to reduce pain or suffering.
There often comes a time when the person living with HD requires a higher level of care than can be provided at home.
Moving the person to a nursing facility can be a tough decision, but a necessary one. You may feel like you’ve failed or that you’re breaking a promise – even when you know placement will provide more safety and advanced care.
We highly encourage you to connect with a caregiver support group or local HD program to hear from others with similar experiences. They will often have good recommendations about placement options and coping with care decisions.
If you’re considering a skilled nursing facility, it’s helpful to get a list of local options and to visit. Social workers, care managers, and others can help you figure out if the cost of placement is covered by Medicaid, long-term care insurance or VA benefits. Check https://www.medicare.gov/care-compare/ for ratings of skilled nursing facilities.
Even when the person for whom you care moves to a skilled nursing facility, this doesn’t mean that your role as a caregiver ends. Your ongoing presence and advocacy will help ensure that proper care is provided.
Hospice and End of Life Care
Hospice services are designed to support individuals towards the end of life. Here are some important things to know about hospice:
- Hospice is a Medicare benefit.
- Individuals are eligible when a doctor has determined a patient has six months or less to live.
- The goal of hospice is making the patient as comfortable as possible.
- Care can be provided wherever the person resides, including at home or in a facility. This care includes visiting nurses, pain management, and personal care.
- Hospice can also provide spiritual, grief, and bereavement support, as well as respite for family caregivers.
The doctor or medical team may have a particular hospice program they recommend. Also, the Hospice and Palliative Care Organization provide a site to search for hospice programs within the United States. Once you have selected a hospice, you can ask the doctor for a referral to begin services or the hospice can assist you in getting a referral from the doctor if the patient is eligible.
We hope the information included in this article will give you a starting point for what questions to ask or resources to request so you feel more informed and supported in your caregiving journey.
Find out more about all the topics addressed here in the links below and by contacting your local HD support organization and medical team.
And although we covered a lot of information in this article, the most important concepts to remember are:
- Get support early.
- Connect with Huntington’s specialists.
- Identify local resources.
- Review your medical, legal, and estate plan preferences and update them as necessary.
- And make time to care for yourself!
Family Caregiver Alliance
Family Caregiver Services by State: helps family caregivers locate public, nonprofit, and private programs and services nearest their loved one—whether they are living at home or in a residential facility. Resources include government health and disability programs, legal resources, disease-specific organizations and more.
CareNav: A secure online service for quality information, support, and resources for family caregivers of adults with chronic physical or cognitive conditions such as Alzheimer’s, stroke, Parkinson’s, and other illnesses.
National Suicide Prevention Helpline (800-273-8255) and website: https://suicidepreventionlifeline.org/.
HDSA Center of Excellence in Your Area
HDSA Law Enforcement Toolkit: https://hdsa.org/find-help/living-well-with-hd/law-enforcement-training-guide/
Local Area on Aging: Use the ElderCare Locator to find your local AAA.
CaringInfo, a program of National Hospice and Palliative Care Organization, provides free resources to educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services.
Research and Trials
- HD Buzz: www.hdbuzz.com
- HDSA Trial Finder: https://app.emergingmed.com/hdsa/ho me#partnerhome
This article was underwritten with funding from Adira Foundation, written by Family Caregiver Alliance (FCA), and reviewed by Natasha Boissier, LCSW.