When a loved one is diagnosed with Huntington’s disease, it can feel overwhelming. You might find yourself asking, How can I best support him or her? What can be expected as the disease progresses? These are big questions, but do not worry—you are not alone on this journey. Caring for a loved one with Huntington’s can be challenging; however, with the right tools and frame of mind, it can be done and will make all the difference in the world to your loved one. Each person with Huntington’s is unique, so you must remain flexible when approaching their particular case. The more you learn and prepare, the more confident you’ll feel as a caregiver.
Understanding the Stages of Huntington’s Disease
Huntington’s is a progressive illness, which means symptoms gradually get worse. Understanding what stage your loved one is likely experiencing can better prepare you for what’s coming next.
Early Stage: The early stages are generally pretty easy to manage since your loved one should still be independent for the most part. Perhaps they are just a little moodier than usual, or maybe they have just started to struggle with tasks that require critical thinking. This is a good time to talk candidly about any issues they may be having and to establish patterns of support that will prove helpful in the future. It is also the right time to establish good habits, such as exercise or mental stimulation, which can mitigate the pace at which symptoms are worsening. The earlier open communication and planning are initiated by the family, the easier it is to transition into more intense later stages of care.
Middle Stage: As one progresses to the middle stages, things start to get a bit tricky. The physical symptoms affecting walking and swallowing begin to impede daily life. It may no longer be safe to drive, and household chores may be hard to do. By now, it is necessary to step in more and offer some assistance with errands, meals, and the continuance of social connections—things that start to slip away as the disease progresses. This becomes even more vital because they might start getting frustrated or resentful due to their physical incapacities. Establishing a routine gives them a sense of normalcy during the transition stage.
Late Stage: Last but not least, during the final stages, care is needed around the clock. Your loved one won’t get out of bed much and relies on either you or a professional caregiver for almost everything. This phase in the journey may be the most physically and emotionally exhausting time for caregivers, but knowing what to expect can make it a little easier. This may be the time to bring in even more professional caregivers or to consider long-term care facilities—a painful but necessary decision. Remember, your loved one’s comfort and safety are important, and it is not shameful to know when you can no longer do it all alone.
Daily Care: Small Changes, Big Impact
The small things in daily care are what matter most. Consider how their home is set up; simple adjustments such as removing rugs that cause tripping and reorganizing furniture to allow open space can go a long way toward preventing falls and improving mobility. Fewer accidents at home mean much-needed relief to both of you. Also, placing support handles in the bathroom or ramps instead of stairs can further ensure safety and access. Being proactive with these steps early on will save a lot of stress later.
Personal care is also an area in which your role increases. This might be as simple as reminding them to take their medication or driving them to appointments at first. But as the disease progresses, you will find yourself taking on more. Bathing, dressing, cooking—it can all become part of your new normal. While it is easy to focus on these practical tasks, don’t let emotional upkeep fall by the wayside. Keep your loved one socially active in activities with friends or family. This can help keep their spirits up, even as the disease advances. You might be surprised that involving them in simple activities they can still perform provides them with a source of satisfaction and boosts their self-esteem.
Utilizing Alternative Interventions
Where conventional interventions seem poorly effective, most families turn to alternative therapy. For some, it is physical therapy that helps reduce the level of immobility, while other dietary adjustments help in maintaining strength. And in some states, like Mississippi, they may be looking into medical marijuana as an option for symptom relief. By applying for a medical marijuana card in Mississippi, patients may find a little pain relief from muscle spasms, anxiety, or even sleep disturbances. It’s an option worth exploring with your loved one’s healthcare provider when traditional medications are no longer cutting it. Be open with your doctors about these therapies; each patient is different, and finding just the right mix can go a long way toward improving quality of life.
Massage therapy or acupuncture are other alternative forms of treatment that may alleviate some pain and stress. While these will not cure Huntington’s, they could help in managing physical discomfort or emotional strain brought on by the disease. Many caregivers have also found such alternative therapies offer their loved ones a sense of calm and relaxation, and help both physically and mentally.
Support Network: It Takes a Village
You’ve heard the expression It takes a village. This couldn’t be more true when caring for someone with Huntington’s. There is absolutely no shame in asking for help! This can be through professional caregivers, in-home nurses, or just a solid group of close friends. Surround yourself with people who can offer support and understand the emotional burden associated with caregiving. Be it preparing a meal or giving you a break, help is there.
And when it comes to a point where home care is no longer an option, you will have to think about long-term care facilities. Of course, this is never an easy call to make, but sometimes it is the right decision for both them and you. After all, their well-being is the number one priority, and that doesn’t need to preclude you from continuing to be involved in their care simply because they aren’t at home. Regularly visiting them and communicating with their care team will go a long way toward ensuring they continue to receive the best possible care.
Don’t Forget to Care for Yourself
Let’s face it, being a caregiver is difficult. You may feel guilty taking time to care for yourself, but it is not selfish—it is required. If you burn out, you can’t help your loved one very well. Take breaks, and stay connected with friends. Exercise, eat right, and most importantly, extend a little grace to yourself. You’re doing the best you can, and that’s good enough. It is very helpful if a schedule can be arranged to allow a little “me time” each day, even if it’s just a few minutes to sit quietly or take a walk.
Another important resource is sharing with people in similar situations. Online support groups or in-person ones may become your lifeline when you just want to vent or seek advice from others who understand exactly what you are going through. Never underestimate the value of a listening ear. Sometimes, even in short conversations with someone who gets it, you will be reminded that you’re not alone after all.
Conclusion
It is not easy to take care of a person with Huntington’s, but with knowledge, support, and remembering to take care of yourself, you can make this journey a little easier for both you and your loved one. Remember that you don’t have to know everything and can ask for help at any moment. You’ve got this. While it might not feel that way, each small act of kindness that you show makes a big difference in your loved one’s life. So, take it one day at a time, and know you are making a difference.