Considerations for At-Home Care for
Huntington’s Disease

Huntington’s disease is a genetic disorder that is progressive. Though there is no cure for Huntington’s at this time, research is ongoing all the time and there are definitely ways to make your loved ones live a life as wonderful as possible, even when dealing with this disease.

Most people with Huntington’s disease will live for 40 to 50 years with no sign of it, but usually symptoms of Huntington’s disease begin to show during that decade of life. Caring for someone who has Huntington’s disease may become a full time job and can be difficult, but many people take this role on selflessly.

Your role as the care giver will be to help maintain a good quality of life for the loved one who is afflicted Huntington’s disease. It may be mentally and physically exhausting and it is important if you have chosen to take on the role of caring for a loved one with Huntington’s disease that you are also aware of your own limitations and take time for yourself.

Understanding Huntington’s Disease
and what it Will Do

Before discussing care for Huntington’s disease, it is important that you know what to expect from a Huntington’s diagnosis. Preparing for what is to come will be especially helpful when thinking of a long term strategy for dealing with Huntington’s disease. Physically, a person with Huntington’s disease will lose their ability to move voluntarily, but they will often have involuntary movements like jerking, trembling or rigidity of the muscles. When a person with Huntington’s disease is still able to walk, you will notice an abnormal gait and may notice falls and balance issues. Speech will become impaired and you will eventually notice the decreased ability to swallow.

Cognitively, you will also notice changes as Huntington’s disease progresses in your loved one. You will notice, as time goes on, that your loved one will begin having problems with simple tasks like organizing their thoughts, having a fluid conversation, have emotional outbursts, lack of focus, indulging in inappropriate behavior and lack of mental flexibility. Many people who have gone through caring for someone with Huntington’s disease describe this as a total change of personality.

Psychiatric symptoms will also appear in someone who has Huntington’s disease. You will almost certainly notice signs of depression, anxiety, loss of interest in activities they have always enjoyed, and behavior that you would expect from someone suffering from a mental disorder. You will possibly also see signs of bipolar disorder, obsessive-compulsive disorder and mania.

It is important to note that Huntington’s disease will progressively get worse and your loved one will eventually be bed bound, need to be tube fed and breathing will need to be done with a respirator.

Once your loved one has a diagnosis of Huntington’s disease and you have made the decision to attempt home care, you will need to prepare your home for what is to come.

The bathroom is where a lot of accidents can happen, so it is recommended to get that area prepared before other areas. One of the things you should do is to install a series of safety bars in the shower and bathroom. This will help your loved one get in and out of the bathtub and support themselves in the shower. You should also consider putting in non-slip mats or adhesives in the bottom of the bathtub or shower. Since people with Huntington’s disease often lose balance, this can help keep them safe. You may also consider a shower bench or walk in bathtub. You can also consider buying or renting an elevated toilet seat so it will be easier for your loved one to get up and down from the sitting position.

Accidents can also happen in the kitchen, so you should take steps to ensure safety there as well. You should make sure to lock up or put any cleaning solutions out of reach of your loved one. It is very possible that the erratic behavior that will come with Huntington’s disease can make them do things like drink chemicals. For their own safety, these items should be put away. You should keep the stove knobs off the oven and keep the countertop clear. You may also want to consider locking any silverware drawers. You should encourage independence as Huntington’s disease takes its toll, but you should always be there to supervise.

Since it is probable that your loved one with Huntington’s disease will have difficulty walking, removing unnecessary furniture, like coffee tables, can make it easier for them to walk around on their own. As time goes on, they will lose a lot of their physical control so the less furniture that is out in a room, the better off they will be. You should also remove any rugs that they could trip over.

Most people with Huntington’s disease will not have a lot of trouble walking in hallways, but since they can bounce or walk into the walls, it is recommended that you remove any pictures or decorative objects from walls so nothing gets broken. You can also install grab bars as a way for your loved one to stabilize themselves.

Part of the psychiatric symptoms of Huntington’s disease will likely involve paranoia and a person inflicted with Huntington’s disease will often have severe anxiety so doing things to make them feel more comfortable in the home, like installing a security system may be a good idea. Not only will your loved one feel safer, it can put you at ease as well in case there is an emergency. Help can be available at the touch of a button.

Later Care for Huntington’s Disease

As time goes on, you will likely need to get a hospital bed as well as specialized home nursing care for your loved one with Huntington’s disease.

Though you will be able to learn how to do things like change their feeding tube, it is impossible for someone to do this 24 hours a day, which is what it will take as the symptoms of Huntington’s disease progress.

Even part time home care can make a big difference. Though your thoughts will likely be making your loved one as comfortable as possible, you should not allow yourself to get overwhelmed. Joining a Huntington’s disease support group or other social group can really help get through this difficult time.