Living with Huntington’s Disease
Huntington’s disease is a hereditary condition that affects the brain. It leads to a deterioration of the nerve cells, which gradually leads to a complete breakdown of the processes in the brain. It is an incurable disease, and usually presents itself in middle age, with the person having around twenty years to live after a diagnosis.
Unlike many illnesses today, a diagnosis of Huntington’s is, tragically, a fatal one. What many people don’t realize, though, is that there are many things that you can do to help your loved one with Huntington’s live a better, healthier, more comfortable life as the illness progresses.
If your loved one suffers from Huntington’s, you and/or their senior care aide can follow these steps to make their life easier:
- Communication assistance – As Huntington’s progresses, it gets harder for the person to speak, and even to swallow. Thus, they will need some help communicating. Speech therapy can help with both speaking and with problems swallowing, as it helps with memory and with keeping muscles stronger. Alternatively, you or your senior care aide could make charts with words or pictures that your loved one can point at when they need something like food or a drink, without having to speak.
- Home improvements – Some modifications are necessary if your loved one is going to continue to live at home with Huntington’s. They might begin to have balance problems, trouble walking, or other issues that make it difficult and even dangerous to get around the house. Put rails on the sides of the bed and tub, to help them to get in and our more easily, and make sure that they cannot slip and fall on floors or carpets, or out of chairs.
- Meals – In the very late stages of Huntington’s, eating is impossible, and a feeding tube must be inserted into the person’s stomach (unless they object to this, which is something they should make clear in advance). Before this, though, people with Huntington’s should eat a diet that is very high in calories, and in food that is easy to chew and swallow. It is very important to help them to eat, as choking is one of the main dangers of Huntington’s. Each bite must be small enough to get down easily, as this also aids in digestion. There are also special straws and placemats available that will help them with the mechanics of eating.
Huntington’s is, in fact, a fatal diagnosis. However, the illness is gradual, meaning that there is still time for your loved one to get some living in. You and/or your senior care aide can use the tips above to help them not only to live more comfortably, but to live more happily as well. Staying in their own home or the family home as long as possible is most likely everyone’s hope. If you make these few modifications, and perhaps hire a senior care aide or home care aide if necessary, your loved one can stay in the home much longer, and thusly have higher spirits.
If you or an aging loved one are considering senior care in New York, NY, contact Star One Home Care and Medical Staffing at 718-733-2222 or 914-362-0899. Call today!
Source:
Patricia Coffie, RN, BSN, MFA
Director of Client Services at Star One Home Care
Patricia Coffie, RN, BSN, MFA is Director of Client Services & Director of Phoenix Nurse Aide Training Center. Before assuming the post in 2012, Patricia was the Director or Nursing & Service Delivery at WRC for 3 years where she was the strategic lead for nursing and services to members.
Patricia started her nursing career 19 years ago at Memorial Sloan Kettering Cancer Center and research institution in New York City, and since then has gained experience in Adult Intensive Care Units (ICU) , Pediatric Care (PICU ), Operating Room (OR) , mental health and community settings. She later moved into director of nursing roles, where she obtained extensive experience in leading and developing the nursing profession. She also pioneered good partnership working with other health care organizations, as well as social services, and the wider community.
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