Safety in Huntington's Disease
Richard Dubinsky, M.D.
Many areas of the home are basically unsafe. While there are steps that can be easily taken to diminish risk in the home, you have to take these steps before something happens. Because otherwise it may be too late.
When making one's home safe for children, parents are advised to get on their hands and knees and see what a toddler can reach. Use the same approach in making your home safe for a person with Huntington's disease. What is it possible for him or her to get hold of and what harm can come of that? Keep in mind that his or her perception of reality may be different from ours. If he or she is paranoid and has threatening hallucinations, he may pick up a gun to defend themselves. That gun, or knife, or club... can be used against you, a neighbor or someone else in the family. Try to anticipate what may happen and take appropriate steps before it may be too late. I do not wish to sound too alarmist, but look carefully at your home situation and act accordingly.
In general, tobacco products are not good for you, with either primary or secondary exposure of tobacco smoke being a fatal example. However, when a person has Huntington's disease, from which they will eventually die, one of the few pleasures that they have left may be smoking. Nicotine is a tranquilizer. Thus patients may feel calm when they smoke. There is substantial agitation and other symptoms with withdrawal from nicotine. This is part of the craving for nicotine. Quitting nicotine may be too much to ask of the patient and the caregiver. Therefore, as caregivers, our role is to insure that they smoke in a safe fashion.
Cigarettes do not burn out. A lot of effort has been expended by tobacco producers to keep that cigarette lit so that it will be consumed. Think of a cigarette as a lit match when you look at safety and smoking. As I mentioned at the beginning of this page, approach home safety from the standpoint of a child. What can they get into and how can they come to harm?
Provide large, stable fireproof ashtrays where the person tends to smoke. Do not place them on the arm of a recliner, where they can be knocked off. In that case, get a floor stand with an ashtray on top. Look for a way for the patient to light their cigarette without having to hold a match. Lighters are one possibility, but they may require coordination to use and many lighters can be turned into a blowtorch by adjusting the flame too high.
Cigarette holders, while no longer the fashion item they were in the 1920's allow a person with Huntington's disease to hold their cigarette, without the risk of the cigarette burning down to their fingertips.
Look where the person will be smoking. Remove items that can catch fire easily, such as dried, natural flowers, newspapers, magazines, etc. Make certain that the floor covering is fire retardent. If they smoke outside, make certain that your area is not at high risk for fire. Watch them when they smoke. Can they get the ashes into the ashtray or are the ashes falling onto their chest?
Never let them smoke in bed If you smoke, you shouldn't smoke in bed either.
Install grab bars in the bathroom and in the shower stall. A shower bench and a shower head on a flexible, hand held hose can allow a person with Huntington's disease to continue to bathe themselves, without the problems inherent in getting in and out of the bathtub or trying to stand in the shower.
Textured strips can be glued onto the bottom of the shower stall or bathtub to improve traction. Rubber bathmats with suction cup backing can also be used for traction and as a softer surface in case one falls.
If the person has trouble standing by themselves, do not let them stand in the shower by themselves. Use a shower bench and stay close by.
Toilet seats can be elevated with spacer blocks and handles can be attached either permanently or temporarily around the toilet to give the person something to hold onto. These can be purchased or rented through medical supply houses.
Look at your
kitchen carefully. Place dangerous chemicals (cleaning compounds) where
the patient can not get to them, such as in a cabinet with child safety
locks, or on a high shelf. Important things to consider are:
Besides what is covered above think about fire safety in your home. Smoke detectors and carbon monoxide detectors should be installed close to your bedrooms and tested monthly to make certain that they are in operating order.
Mount fire extinguished (Class A, B and C) in your kitchen where you can reach them in case your stove or oven catches fire.
In many cities in the US you can place reflective stickers in the windows of bedrooms where children, the elderly or those with disabilities sleep. These stickers alert the firefighters to look for people in those rooms in case of fire. Check with your local fire department before placing them in your windows.
People who have trouble walking have difficulty in making transitions between different floor surfaces. They can also have problems when walking on deep pile carpets but not on short pile carpets. Throw rugs should be avoided. They can bunch up, leaving an obstacle that is easy to trip over and they can slip on the surface of the floor, leading to a fall.
With two walls to bounce off of or to use for support, many people with Huntington's disease do not have trouble in hallways. However, pictures on the walls can be easily knocked off the hook by someone stumbling against them. Grab rails can help a person to move down the hall with a stable means of support. The grab rail should be 1.5" (3.25 cm) in diameter and 1.5"(3.25 cm) out from the wall. The grab rail should be firmly anchored to a wall stud, not to the plaster of the wall. Use either wooden railings or metal grab bars from a medical supply house. Do not use towel racks or holders. They are not meant to be used as supports.
Stairs are not a good place for someone who has trouble walking. You can help the person to walk up and down the stairs, yet you may find that you have to hold onto a railing to keep from falling yourself. Try to have handrails installed on both sides of the stairwell. That way there is always a rail to grab ahold of.
Preprogammed phones, or phones with memory features can assist a patient with Huntington's disease to call you at work or to call a neighbor or a friend by touching one or two keys instead of many keys. Caller ID is a way (in the US) that a patient who is paranoid can see who is calling before answering the phone.
Answering machines, while a good method to store messages, can also be used to listen to what is happening in the home. With certain brands, you can call your home, enter a code and listen to what is happening in the room.
If the person with Huntington's disease is starting to become paranoid and you are afraid that they may lock you out of the home, make certain that the locks on your doors can be opened from the outside as well as the inside. Garage doors and other doors can be equiped with a keypad to allow entry without a key.
Alarms can be mounted on doors to notify you when a door is opened. The alarm can vary from a pleasent sound to an ominous sound. These devices can be used when you are afraid that the person with Huntington's disease may elope or go for a walk and may not be able to find their way back. Along these same lines, if you are worried about elopement sew name tags into their clothing with their name and your phone number. Tell the neighbors and the police that the person is sometimes confused and may have difficulty finding their way back home.
Guns do not belong in the home. While some may argue with my standpoint, guns definitely should not be in the home of someone who is demented, paranoid, suicide, hallucinating or just plain clumsy. If the patient must shoot firearms, and can do so in a safe manner, store the guns somewhere else and retrieve them when you take them to a firing range.
Steps to take
toward gun safety in the home of someone with Huntington's disease:
Most of all, get rid of the guns. Store them at a neighbors house, sell them, take them to the police to be destroyed. There is potential for great harm and absolutely no benefit if you keep guns in your home with someone who has Huntington's disease.
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