Being a caregiver for someone with Huntington’s disease requires monitoring and managing your loved one’s physical, emotional, practical, and social needs as their condition progresses. This responsibility can feel overwhelming at times. Knowing what to expect and taking care of yourself can minimize the stress, allowing you to provide the best care possible – which is the whole point in the first place.
Learn more about the causes, symptoms, stages, and treatment options for Huntington’s disease from BetterHelp: https://www.betterhelp.com/advice/huntington-disease/.
Medical Care Needs
Managing medical needs for someone with Huntington’s disease is a crucial component of their overall care. The stage of their condition plays a role in their level of participation, ranging from needing minimal assistance from you to being an equal partner to needing you to lead the way. Their health status also determines how active they can be in managing their care. Complications can reduce their ability to cooperate with their care and make them more dependent on you as a caretaker.
To the greatest extent possible, include your loved one when scheduling their medical and therapy appointments, reviewing their medical plan, taking medications, and participating in at-home exercises as directed by their health care team.
A person with Huntington’s disease may not be able to recognize signs that their condition is worsening due to a decrease in cognitive skills. Part of your responsibility as a caretaker is recognizing such diminished capabilities and getting them the care they need. As the condition progresses so will the level of care they need.
Social and Emotional Needs
As a caretaker for someone with Huntington’s disease, try to have a sense of their core values and things that bring them joy. Ensure their life stays as close to their normal as possible, arranging activities like social outings, religious services, cultural events, or other things that are important to them. Helping them remain connected to others can optimize their life quality.
Those with Huntington’s disease can experience a variety of psychological and psychiatric effects. They’re partially manageable with medication and therapy, but they get progressively worse with time.
Your loved one’s health care team can provide advice on how to handle psychiatric issues like hallucinations to reduce agitation and help them stay oriented. Routines, calendars, and comfortable surroundings can also help minimize the effects of psychiatric issues.
Be aware of your loved one’s practical needs like home safety and personal care, and work with them early on to create a care plan together.
People with Huntington’s disease can be at greater risk for accidents due to some physical and cognitive effects that can impair reasoning and make it difficult for them to maintain physical control of their bodies.
You may need to arrange furniture to prevent them from bumping into it and consider that they may be prone to falling down the stairs.
You should also find a way to respect their privacy while ensuring their safety in the bathroom. They may benefit from a checklist reminding them of daily tasks like eating, drinking, and brushing their teeth.
There may come a time when your loved one needs a level of care that is hard to manage at home. They may need care you aren’t familiar with or experience anger or irritability you aren’t trained to respond to. Decide if and when some type of skilled, round-the-clock care is needed to ensure their safety, comfort, and overall well-being.
Caring for someone with Huntington’s disease can be emotionally challenging and difficult to handle alone. Learn as much as you can about the condition including its cause, symptoms, and treatments. Utilize resources like the Huntington’s Disease Society of America, read as many articles as you can find, and talk to others who have experience with it.
You should enlist professional help to deal with things like:
- Watching their condition worsen and seeing them struggle to care for themselves
- Resenting how much you have sacrificed for their care
- Concerns that you or someone else in your family are at risk of developing the condition
Takes steps to maintain your mental and physical health as well:
- Exercise, eat healthily, and get plenty of rest
- Maintain your own hobbies and social life
- Keep up with your own medical appointments and health conditions
- Consider if genetic testing for Huntington’s disease is right for you
- Maintain spiritual or religious practices
- Ask friends and relatives to help care for your loved one
- Seek out a Huntington’s disease support group
- Seek professional counseling
The responsibility of caring for someone with Huntington’s disease combined with the time commitment required can be stressful and can deplete time and energy for yourself. It is crucial that you make time to care for yourself and that you get the help you need from people you trust. Take care of yourself to provide the best care possible for your loved one with Huntington’s disease.
About the Author:
Marie Miguel has been a writing and research expert for nearly a decade, covering a variety of health- related topics. Currently, she is contributing to the expansion and growth of a free online mental health resource with BetterHelp.com. With an interest and dedication to addressing stigmas associated with mental health, she continues to specifically target subjects related to anxiety and depression.