Dealing with the beginning stages of a family member or someone close to you dying can be very traumatizing and depressing for yourself as well as your loved one. Going to the hospital day in and day out can become very frustrating for family members and can become a distraction to the dying person. This is why many people have chosen to have hospice care at home when they are ready to pass away. Over 90% of the hospice care in the United States is given at home and not in patient facilities. Hospice programs are experts when it comes to helping families make their home comfortable for the dying person. This is a guide on how to prepare a home hospice care for a loved one who is dying.
The first step to starting home hospice care is selecting and preparing a room for the dying person. You want the room to be comfortable for the sick person as well as the caregiver. If you live in a multilevel house it is best to choose a room on the ground floor in order to prevent excessive running up and down the stairs. The patient may also feel isolated if you place them on upper levels where they cannot be apart of normal family activities. You should not place the patient in a room that is close to the kitchen. This way you can avoid making the patient sick or nauseated while cooking foods. You should consider placing the patient close to a bathroom if they are still mobile. It is ok if you live in a small house or apartment where your choices are limited. Just make sure to pick the most comfortable room in the house to set up the hospice.
Choosing a bed is very important when it comes to hospice care at home. Often times the patient will want to be in their usual bed because it is comforting. This can be ok, however, it is much easier for the caregiver to change bedding and move the patient in and out of the bed if they are in a rented hospital bed. You can contact your local hospital to see about renting out one of these types of beds. The expense for the bed is usually covered by insurance.
It is a very hard decision for a couple to continue sleeping in the same bed together even though one of them is in hospice care. The patient is more than likely going to feel as if they need that special contact with their spouse, however, they will feel very uncomfortable in the bed with them. It is recommended that the couple do not share a bed to avoid any discomforts of the patient. It is also a good suggestion to place a hospital bed in the room as well as another bed for the caregiver/spouse. This way the beds can be pushed close together so that each person can have their spouse near during the night. Hospital beds are the most comfortable for the patient and they are easier for the caregiver to take care of the patient. The caregiver can adjust the bed by lowering it or raising it to fit the comfort of the patient.
You want the patient to be as comfortable as possible in their bed. Avoiding bedsores can be a great indication of proper treatment of your loved one. Bedsores are very common amongst dying people. The reason being is that the person is usually very thin and their bones usually protrude. I remember when my grandmother was in hospice care and my cousin was taking care of her. Her skin was very pretty and she never had a bed sore. I remember my cousin would always make sure that she had lotion on her body and that she checked for bedsores often. Other ways to prevent bedsores is to frequently turn the patient at least once every two hours. You should also place a pillow in between their knees so that they do not press together and cause a bedsore. You should also check the places where bedsores are likely to occur including: the sacrum, knees, ears, shoulders, and hips. If you spot any signs of redness you should be concerned and treat immediately. You should keep any weight off of these spots until they are gone.
You should keep the patient’s head as flat as possible because raising their head can cause the body to slump down deeper into the bed. This will in turn increase the pressure on the skin. You should keep the patient’s skin as clean as possible if it becomes moist from perspiration, excrement or wound drainage. Changing the sheets frequently can also help to prevent bedsores. You also want to choose sheets that are wrinkle-free and softened. Purchasing an egg-crate mattress is also a great way to avoid bedsores. These mattresses allow air to circulate between the patient and the mattress because of the holes that are in them. These mattresses are usually around $20.00 and they work wonders. When using an egg-crate mattress, you should not use fitted sheets. You should never use a plastic sheet either to protect the mattress because this will give the patient bedsores. You should use unfitted sheets and tuck them in loosely.
You want the patient to be as happy as possible in their hospice environment. You can cheer up the room by painting it a bright color, adding plants; you may want to avoid flowers if the scent causes the person to become nauseous. Cheerful posters or a beautiful painting can liven up the room. You will want to place one or two chairs in the room so that visitors are comfortable while visiting the patient. A lazy boy or a rocking chair are also recommended so that if the patient still has enough strength they can walk or access the chair easy if they prefer to sit up.
You should consider not adding a television into the room. Television distracts the visitors and they will automatically turn towards the television in a room and forget about the patient. Televisions can also be very distracting to the dying person and confusing. Television contains lots of violence and dramatic deaths; this can become troublesome to the patient, only reminding them that they are dying. It is best to avoid placing this in the room. If the patient wants to watch television it is best to bring a television in from another room at certain times, however, all the time can be too much for them.
Bathing the patient is very important. Bath time daily becomes very enjoyable to them because it allows them to soak in warm water, if the doctor says that taking a bath is ok. Bathing relieves stress of the patient and allows time for them to get out of the bed. Bathing is another way of preventing bedsores because it removes bacteria from the skin. If a patient has surgical incisions or is undergoing chemotherapy the bath will help with any skin conditions that may affect them.
If the patient is immobile and they are bedridden the caregiver will have to give them a bath in the bed. Things that the caregiver will need in order to take care of the patient will include: two basins of warm water (one soapy and the other clear for rinsing), two washcloths (one used with soap and the other not), a bar of nondrying soap (i.e. Dove, Oil of Olay), warm towels, and fresh night clothes.
You should plan a good time to give the patient a bath. A good time can be after breakfast or right before you change the sheets. Changing the sheets and giving the patient a bath during another part of the day will only cause you to have to change the sheets multiple times. So it is best to do them around the same time. You don’t want to get the mattress wet so you will need to place several towels underneath the patient and them remove one article of the patient’s clothing. For example, take out one arm at a time and wash that arm and then place the arm back into the shirt, and do the same for all body parts. This way the patient won’t get too cold while bathing in bed. After you are done bathing the patient you should apply cornstarch on the small of the back and inside the thighs if any chafing has begun to occur. You don’t want to use too much because the patient’s sweat can cause it to cake up. Bathing is also a very good time for you to check for redness or bedsores.
If you find any bedsores or redness on the skin, then you should massage the area around it; avoid massaging the infected area itself. You should try to expose the infected area to light of a 25-watt bulb about 15-20 inches away from it. 20 minutes of light can really help benefit the area. A bacterial medicine such as Bactracin can be applied to the bedsores. It is very important that as the caregiver you work hard to help prevent bedsores on your loved one. Cures are possible but prevention is the best route.
As a caregiver you will need to take care of the patient’s teeth and mouth. Keeping their mouth clean after meals and taking care of their dental hygiene well being can help them to prevent a fungal infection from forming in their mouth. For mouth cleansing you will need a toothbrush or disposable toothettes, two glasses of water (one for brushing and one for rinsing), and a bowl for spitting (kidney shaped recommended). Make sure you brush the patient’s teeth thoroughly and have them rinse and spit the best and most convenient way for them.
The patient’s clothing should be very comfortable for them as well as cool and easy to wash. If the patient is immobile then using hospital gowns will work best. This way the caregiver has an easier time changing and bathing them. You should try to change their clothing a few times daily to keep them fresh and clean. You should also make sure that the patient has on warm cotton socks especially during winter months.
Taking care of the patient’s hair is also important. Women with long hair should have their hair cut into a cute short style so that it is easier for the caregiver to take care of. Men don’t usually have as much of a problem with their hair has women do. The patient will want to maintain their appearance if they are alert enough to care. Make sure that the patient is well groomed. You want to keep the patient’s hair washed by having the patient sit up while you take a warm bucket of water behind them to gently wash their hair. Start by moistening their hair and then adding a little shampoo. You can then rinse out the soap and dry thoroughly. It would not be a bad idea to braid or style the person’s hair if they enjoy looking nice. This can help them to feel normal and beautiful at the same time. You can also slip in a nice shoulder or neck rub for the patient during this time.
Feeding the patient is very important. As a caregiver you will want to make sure that the patient has plenty of fluids so that they do not get dehydrated. A person needs about a quart of liquids daily and they will also need about 40 to 50 grams of protein in order to prevent starvation. Be cautious that some foods can cause a nauseated reaction in patients. Smells tend to make a patient feel very sick and they may feel hungry one minute and the next they have completely lost their appetite. You also have to realize that many people receiving hospice care may have a strong reaction to certain foods. For example, meat high in protein such as beef, lamb, or chicken can have a bitter or rotten taste to them all of a sudden. This problem also occurs with coffee and chocolate. You have to keep up with the patient’s intake of protein so the best advice is to marinate meats in oil and vinegar before cooking.
Dairy products can cause problems for the patient if they have become lactose intolerant as a result of radiation or chemotherapy. Their bodies will no longer produce the lactase enzyme that allows them to digest dairy products. They may become bloated, nauseated or have diarrhea, so it is very important that you make sure to limit the dairy products or do not give it to them at all.
Don’t be surprised if the patient doesn’t feel like eating as much as they used to. Dying people often loose their appetite and eating becomes physically draining to them. You may want to consider feeding the patient four to six smaller meals during the day instead of the three regular meals. Some of these can be snacks such as cheese and crackers, fruit, or a small salad.
If the patient is getting nauseated frequently and is finding it hard to hold down solids then you should try to serve the patient liquids and solids apart from each other. The best foods to serve a patient who gets nauseated easily are crackers, cookies, breads, cereals, pureed fruits, broiled chicken, mashed potatoes, and fruit juices. You should try to avoid feeding the patient fried, fatty, and spicy foods.
Pain can be very scary for the dying person. They may be afraid of having to suffer during their last moments. That is why it is a good idea to have a doctor or nurse diagnose the root of their pain and try to prescribe them something to help ease the pain.
Realize that the patient will probably loose control of their bowels and bladder due to the fact that the disease they may have is causing them to become very weak. Diarrhea, constipation and bedwetting will more than likely occur with a sick person. These problems may begin to become burdensome for the family member taking care of the patient and they may decide to have a nurse come to help them with this.
If a patient is suffering from constipation this can be very dangerous for the sick person especially if they are bedridden. This could be a sign of a blockage of the bowel and the caregiver should pay careful attention and record the patient’s bowel movements. As the caregiver you should consider the diet of the patient. If you are feeding them lots of cheese, meat, white bread or rice they have a higher tendency to cause constipation. You should include prune juice, sources of fiber and apple juices in order to keep their bowels moving effectively.
Insomnia is very common amongst dying people. They often times tend to be under stress and they are constantly thinking about their condition. Not only can stress affect a dying person’s sleeping pattern, so can their diet and pain from their affliction. Do not give the patient coffee or tea when it is time to go to bed unless they are decaffeinated. If pain is keeping the patient awake during the night, ask the doctor if the patient’s dosage can be increased during bedtime. Realize that at bedtime the patient may begin to reflect on their ailment and may become very susceptible to depression. You can sit with the patient and maybe talk with them or read them a book. Giving them a warm bath or a neck/shoulder rub can give them a sense of relaxation. However, if the patient does not complain about not being able to sleep then don’t make a big deal out of it.
Fevers are very common amongst dying person’s as their condition begins to worsen. This is because the body loses its ability to regulate temperature. Aspirin or an aspirin substitute can bring down the fever. Know that fevers can be a sign of an infection and the doctor should probably prescribe antibiotics in order to treat them.
Eye care is important when taking care of a terminally ill person. You may realize that their eyes stay open even if the patient is sleeping. You want to try to avoid the drying out of their eyes by adding eye drops. It may be burdensome for the caregiver, because the patient will require 2 drops every 2 hours during the night. You may want to have a nurse help you with this step.
Dehydration can become a serious problem with the patient when they are nearing the end of their life. This is because they no longer will be able to eat or drink. This is a difficult decision for the caregiver because some doctors recommend that the patient be allowed to dehydrate so that they have an easy death. However, some family members may want to prolong the life of the patient and get a feeding tube in order to keep them hydrated. If you do decide to let the dehydration take its course then you should make the patient comfortable by giving them ice chips or little drops of water in their mouth from time to time.
Most hospitals will provide training sessions in home care for the caregiver. Nurse aides are also available to help the caregiver usually about three to four hours per day. Nurse aides help with bathing, changing the bed, and moving the patient in order to prevent bedsores. As the patient nears their death the hospital will probably provide a nurse for a much longer period of time. Volunteers for hospice care are available and they can help the caregiver with shopping, cleaning the house, or running errands. Caregivers can also call a volunteer to take over for them while they take a break to go on an outing or just to get away for a little while. The hospice will also allow the patient to come in and stay in the hospital for a while if the caregiver needs a break. Allowing the patient to stay in the hospital for the weekend can refresh the mind of the caregiver and gain their energy back. Psychological help is also available for the caregiver. As a caregiver you may experience moments of apprehensiveness and anxiety and you may need someone to talk to about your problems and frustrations. It is very hard for a family member to watch their loved one die and as a caregiver you have to deal with this everyday that they are under your care. Know that it is ok to cry and to speak your mind about the illness, holding it inside can only cause you to become more stressed.
Lastly, take time out for yourself. If you are focusing too much on the patient and not on yourself you can be surprised at the toll it will eventually take on your life. Your health may begin to deteriorate and you may become very depressed. Try to engage in some of your normal activities. Exercise frequently and eat a healthy diet. Realize that your life is just as important as your loved one and if you are not physically or mentally stable then you will not be able to take care of them.
I hope that God willing this guide will help you take care of your loved one to the best of your ability before they leave this world.