Huntington’s disease (HD) is a degenerative disease that is passed down through families as a result of a defective gene. The children of people with HD have a 50 percent chance of getting the disease. However, if the child did not inherit the defective gene, they will not develop HD or pass it down to their own children. This means that children of parents with HD sometimes end up being family caregivers for people with HD. Understanding the disease is the first step in being prepared to care for a parent with HD as the disease progresses.
Symptoms of Huntington’s Disease
HD symptoms usually begin between the ages of 30 and 50. The disease gets worse over a span of 10 to 25 years and is, eventually, fatal. HD affects a person’s cognitive abilities, movements, and mental health.
Cognitive symptoms include:
- Trouble completing complex tasks.
- Inflexibility in thoughts, so that the person gets “stuck” on one idea, action, or behavior.
- Trouble finding the right words.
- Reduced inhibitions.
- Trouble learning things that are new.
- Not knowing their own abilities and behaviors.
Movement-related symptoms include:
- Eye movements that are slow or abnormal.
- Trouble swallowing and/or the physical function of forming words.
- Problems with gait and balance.
- Chorea, which is involuntary muscle jerking or writhing.
- Rigid or contracted muscles.
Mental health symptoms include:
- Withdrawing from friends and family.
- Feeling sad, apathetic, or irritable.
- Feeling tired and having no energy.
- Insomnia.
- Thinking about death or suicide.
Three Progressive Stages
Although HD differs from one person to the next and can start at any age, it generally progresses through three stages: early, middle, and late.
When your parent is in the early stage of HD, the symptoms are mild and only moderately impede their normal abilities. Your parent may experience some involuntary movements and feel irritable or depressed. Your caregiving duties will not be as intensive, so the early stage is a good time to start making plans for the future. Talk to your parent about their wishes and work with family members to determine how each person can help.
During the middle stage, your parent will have more problems with movement-related symptoms. They will have more trouble with daily tasks and might have problems with speech and swallowing. Medications may help to control the involuntary movements and physical, occupational, and speech therapists can work with your parent to manage other symptoms. Your duties as a family caregiver will increase. Because your parent will be unable to do some of the tasks they once did, you may need to hire home care services through an agency. A,home care provider can help with things like dressing, bathing, cooking, and light household chores.
The late stage of the disease will require the most intensive care. Your parent will need round-the-clock care. They will not be able to speak or walk, but will still be able to understand language and will recognize friends and family. One of the major concerns at this time is choking, which can be serious. Usually the cause of death for a person with HD will be complications of the disease and not the disease itself.
Being a family caregiver for someone with HD can be very stressful. It’s important that family caregivers take care of their health and emotional well-being. A support group for caregivers can be helpful as it will give you a place to talk about your feelings and learn from others who are facing the same issues. Hiring a home care provider can also relieve some of the stress on family caregivers.
Sources: http://hdsa.org/what-is-hd/
http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/home/ovc-20321431
http://www.alz.org/dementia/huntingtons-disease-symptoms.asp
http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/dxc-20321436
If you or an aging loved one are considering Home Care Services in Medfield MA, or anywhere in Eastern Massachusetts, please call the caring staff at CARE Resolutions – (508) 906-5572.
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