In my years caring for my Mom and patients. My Mom had some anti chocking powder to put in your drink. It was a thinkner. When eating they should alone. If they are upset or distracted they won't eat. They are always hungry and need several small meals a day. We also put safety bars all over the house. Especially the bathroom. That is the number one injury area of the house that could cause the most damage. I also have my bathroom fitted with grab bars now too. I got bedrails now. We got her a gripper. It helps them reach objects easier. We got her an object to make it easier for her to do up her buttons. There always comes a point where you can't look after them anymore. If it comes to a break away from caring. There is respite care. Nurses will come to your house and look after them as long as you want to. Remember to look after yourself to. I know it seems impossible sometimes. If you have stairs. Get one of those wheel chairs that you can climb up them, or ramps. I now have a Lifeline. It calls someone when I fall. It rings when I have to take my meds.

We have a subsidized government disability condo. Everything is wheel chair friendly, grab bars near the couch, grab bars in the bath, a lift in the tub, a mat in there, huge shower and bath. No stairs. There is kitchen space and big rooms, and a wheel chair friendly patio.

Ways to Prevents Falls

Outdoors:

Wear rubber-soled shoes for traction.

Use a cane or walker for added stability.

Walk on grass when sidewalks are slippery.

Be careful on highly polished floors that become slick and dangerous when wet.

In winter, carry salt or kitty litter to sprinkle on slippery sidewalks.

Use plastic or carpet runners when possible.

Indoors:

Add ceiling fixtures to rooms lit by lamps.

Stairways should have handrails on both sides.

Avoid walking in socks, stockings, or slippers.

Keep rooms free of clutter, especially on floors.

Wear supportive, low-heeled shoes even at home.

Be sure carpets and area rugs have skid-proof backing or are tacked to the floor.

Be sure stairwells are well lit and that stairs have handrails on both sides.

Install grab bars on bathroom walls near tub, shower, and toilet.

If using a step stool for hard-to-reach areas, use a sturdy one with a handrail and wide steps.

Consider purchasing a cordless phone so that you don’t have to rush to answer the phone when it rings, or so that you can call for help if you do fall.

Keep a flashlight with fresh batteries beside your bed.

Keep floor surfaces smooth but not slippery.

Use a rubber bath mat in shower or tub.

Nursing homes are good for older people. People under 40 should not be in there, they hate it. My Mom hated being with "old people". That's what she called them. Put them in group homes. They are a house or a small care center where you will find younger patients. They are specialized. They cater to different ages and diseases.

When care giving you have to have a lot of patience. Since they are slower to respond. My Mom in the end had a list of things that she needed, she could point at it.

A good way to gain weight is to take ensure, I lost 45 pounds in one year. I am taking ensure and I have gained back a lot of weight. One ensure a day. Take half in the morning. Half at night. In a week I improved. I have gained 12.5 pounds in 2 months. It is what they use in tube feeding and in the seniors homes I worked in. It does so much good. I would highly recommend that to anyone.

If there are lot's of falls on the hip. Then get hip pads. I had several patients with them. They work well.

Ways to fight brain fog

Whiteboard

Keep everything in one place.

Pay attention to new information.

Write all appointments in a calendar

Pill containers that every week day on it

Notes on the fridge.I put mine on my door.

Rehearse it, understand new information in your head.

Get someone to remind you. I use my husband. He calls me every appointment.

Use a calendar to keep track of time and to remember important dates.

Place important phone numbers in large print next to the phone.

Label cupboards and drawers with words or pictures that describe their contents.

Place sticky notes around the house when you need to remember things.

Try to keep a routine

Write in journal

Bruxism/Teeth grinding

Bruxism is the medical term for grinding, gnashing or clenching your teeth. The condition affects both children and adults.

Bruxism may be mild and may not even require treatment. However, it can be frequent and severe enough to lead to jaw disorders, headaches, damaged teeth and other problems. Unfortunately, people with sleep bruxism usually aren't aware of the habit, so they aren't diagnosed with the condition until complications occur. That's why it's important to know the signs and symptoms of bruxism and to seek regular dental care.My Mom suffered form this bad. She was always chewing.

Some people with bruxism unconsciously clench their teeth together during the day, often when they feel anxious or tense. This is different from tooth grinding or clenching that occurs at night, which is called sleep bruxism. Most children who are bruxers do so at night, while adults are either daytime or nighttime bruxers.

Treatments

During a biofeedback session, a therapist applies electrical sensors to different parts of your body. These sensors monitor your body's physiological responses to stress — such as teeth grinding — and then feed the information back to you via auditory and visual cues. These cues may take the form of a beeping sound or a flashing light. With this feedback, you'll start to associate teeth grinding or clenching with stress and learn to change your behavior. You may also be given a portable biofeedback device that you use at home. Your therapist will explain how it works.

If your bruxism seems to be associated with dental problems, your dentist may also correct misaligned teeth. In severe cases — when tooth wear has led to sensitivity or the inability to chew properly — your dentist may need to use overlays or crowns to entirely reshape the chewing surfaces of your teeth. Reconstructive treatment can be quite extensive and though it will correct the wear, it may not stop the bruxism.

Stress management

If you grind your teeth because of stress, you may be able to prevent the problem with professional counseling or strategies that promote relaxation, such as exercise and meditation. If your child grinds his or her teeth because of tension or fear, it may help your child to talk about his or her fears just before bed or to relax with a warm bath or a favorite book.

Dental approaches

If you or your child has bruxism, your doctor may suggest a mouth guard or protective dental appliance (splint) to prevent damage to the teeth. Your dentist can make a custom mouth guard to fit your mouth. Over-the-counter mouth guards are available and they're less expensive than custom guards, but they generally don't fit well and can dislodge during bruxing.

Behavior therapy

Once you discover that you have bruxism, you may be able to change the behavior by practicing proper mouth and jaw position. Concentrate on resting your tongue upward with your teeth apart and your lips closed. This should keep your teeth from grinding and your jaw from clenching. If you're having a hard time changing your habits, you may benefit from biofeedback, a form of complementary and alternative medicine that uses a variety of monitoring procedures and equipment to teach you to control involuntary body responses.

Feeding Tubes

Families caring for a chronically ill loved one may eventually face very difficult decisions regarding medical treatment for the person in their care. It may lead one of the most common such decisions: whether to use feeding tubes when a chronically ill person can no longer chew and swallow his or her food. Given that a person may be ill for many years, caregivers might put off discussing and thinking about medical complications that are likely to happen in the future. When decline from an illness is gradual, it is easy to not notice the early warning signs of an impending medical crisis. But understanding and discussing these issues ahead of time can help avoid the need to make urgent decisions during a crisis. My Mom was put on IV. She and my Dad wanted that. My extended family got upset. They wanted her to die. I will be put on it too. I want to live.

Artificial Nutrition and Hydration

As many types of neurological illnesses progress, the muscles of the throat gradually cease to work properly. This can cause swallowing difficulties, gagging, choking, loss of voice, or difficulty catching one’s breath. If someone is having trouble swallowing, they usually eat less, and therefore do not receive proper nutrition. The danger of choking while swallowing is that the food can “go down the wrong pipe”—in other words, the food is aspirated into the lungs. Gagging can also cause vomiting, which also may cause some of the stomach contents to enter the lungs. All of these possibilities can lead to an illness called aspiration pneumonia, which occurs when bacteria causes infection in the lungs damaged by food or stomach material.

Treating aspiration pneumonia usually requires a hospital stay and a course of antibiotics. Patients may be fed during hospitalization with an NG Tube (naso-gastric tube, inserted through the nose and down the esophagus to the stomach), which allows the patient to receive liquid nutrition. If swallowing difficulties continue, physicians may discuss the use of a G-tube (gastric tube) with the family. Surgery is required to insert a tube directly through the front of the belly into the stomach and the patient then receives all or most of his/her nutrition via frequent “feedings” during the day and/or night. This feeding can be done by hand using a syringe or by using a machine that will drip the liquid through the tube into the stomach. Either way, the patient must be sedentary for a period of time in order to receive the food.

With or without feeding tubes, patients can learn swallowing techniques to reduce the likelihood of aspirating. Caregivers can also help by preparing “thick liquid” diets (thin cream of wheat, mashed potatoes, thickened broths for example), that are easier to swallow, and by avoiding thin liquids and things that require chewing. Some people can enjoy eating small amounts this way, even when they are receiving their primary nutrition through a tube.

However, even when a tube is used, aspiration pneumonia may occur. Some patients truly miss the taste and experience of eating and find normal eating hard to give up. Patients with dementia and-or severe agitation may pull at the tube and/or pull it out, which might require sedation. And remaining sedentary for the time required to receive the feedings may be difficult.

Sometimes a feeding tube may be the only thing keeping someone alive. There is some debate about whether feeding tubes actually extend life in end-stage Huntington's disease. For many, this is a quality of life issue, and they would prefer to not to live this way. Depending on the situation, people receiving tube feedings may not be able to avail themselves of hospice services.

If the family chooses not to insert a feeding tube, the patient and family may have decided that this person is in the final stages of the illness, and that they are now willing to allow death to occur. This decision does not mean “starving someone to death.” Comfort measures can be given, and many people are still able to enjoy food during this time. If someone has trouble swallowing, however, the possibility of repeated incidences of aspiration pneumonia is high. The decision then becomes how to treat the resulting pneumonias (see below). If the person is totally unable to eat and does not use a feeding tube, the body will slowly shut down over a period of one to two weeks. Comfort measures are given, and hospice care can help the patient and family.

Artificial hydration is the process of giving intravenous fluids—i.e., fluid given using a tube in the veins. In the past, artificial hydration was used to prevent death from dehydration, which was considered a painful way to die. We now know that gradual dehydration is not painful; rather, it brings a lessening of awareness about discomfort, so that the person slides naturally toward death. Dry mouth is treated more effectively with good mouth care than by IV fluids. With hospice care, it has been the practice not to give IV hydration when someone is close to death. Naturally, pain and other symptoms are still treated as they occur. At the end of life, IV hydration can prolong dying rather than prolong living.

Enhancing Communication

Changes in the ability to communicate are part of Huntington’s disease but that doesn’t mean that conversations can’t be successful or enjoyable. Communication is a two-way process and these simple strategies can be used by anyone to share needs, feelings and emotions.

Slow the rate of speech. Pause between sentences and encourage the person with HD to slow down a bit so that words don’t run together. Wait for the response, maybe even a minute or two.

Overemphasize key words. Emphasize the basic message being conveyed by saying: “Just tell me the main words of what you’re trying to say.”

Repeat or rephrase the message. If you don’t understand the question or statement, use phrases like: “I’m sorry. I’m not following. Can you tell me again in other words?”

Simplify the message and/or offer cues. You can clarify the message by asking the person to either gesture or point, or you can ask for a main key word or thought.

Ask for clarification. Repeat the message back. “Did you say . . ?”

Spell part of the message. Verbal spelling, written spelling or a letter board can all be helpful.

Use specific yes or no questions. Asking a person with HD to answer with a simple yes or no can make responding to questions much easier.

Go from general to specific. As an example, you could say: “Are you talking about family?” and then follow with: “Are you talking about your daughter?”

Keep the person on topic. Use the person’s name to refocus and then say, “We are talking about...”

Reduce distractions during a conversation.

Monitor repetitive behaviour and provide feedback. Limit the number of times you change topics during a conversation and allow some time to pass before introducing a new topic. Help the person understand that they’re stuck on a topic by saying: “Now, let’s talk about . . .”

Allow enough time for communication. Be patient. Take the time to fully understand the message and give the person time to think of a way to respond.

Use communication aids if they’ve been found to be useful. Letter boards, word boards and picture boards are all communication aids that can be adapted as the person’s needs change.

Though skills may degenerate, the need to communicate doesn’t. The person without HD must consciously accept the responsibility for the conversation exchange, and provide external cues and guidance. Speaking with a speech pathologist can be helpful in devising the most effective communication strategies for each individual situation.