As Death Approaches: What to Expect, What to Do

If you are a caregiver for a terminally ill loved one, impending death can be a very scary time. Recognizing and understanding the final signs of death can greatly relieve the stress at this time. Below is a brief description of some of the stages of death.

***Everyone does not go through all of these stages. ***

Confusion
Confusion can vary from mild to severe and can last for several minutes to hours and even days. It could be confusion about something as simple as using the wrong word for something or not knowing where you are to not recognizing a person.

Causes: Confusion can be caused from many things such as medications, low potassium (especially if using a urinary catheter), and tiredness or over sleeping, among other things.

Example: My husband was constantly thinking his bed was a car and always asking where the keys were and wanting to know how to start it. His confusion would come and go, sometimes lasting for days at a time. Other days, he would be totally clear-headed and almost back to his normal self.

What to Do: For mild confusion, mildly correct it without making an issue out of it and continue the regular conversation. For medium confusion, state the correct facts and try to re-orientate them to reality. For severe confusion, it is sometimes best to "play along" with the conversation instead of causing more stress and upsetting them.

Paranoia
At some point, they may go through a period of being extremely paranoid. They may be convinced that you are trying to hurt them or even kill them. This paranoia is usually directed at the primary caregiver or someone very close to them.

Causes: There is no known reason for this reaction, but it may be a manifestation of their fears of death.

Example: One night, a friend knocked on the door. My husband started screaming, "Help me! Help me! Call the cops! I've been here for 3 days and they won't let me leave!" He used to wake up and get mad at me because I wouldn't call the nurse and let him go to the nursing home so someone could take care of him. He even told his Hospice nurse that I was trying to kill him. I think this is the worst pain a caregiver can go through. I had to leave the room in tears several times. After several days of this, he did a complete turnaround and I think I heard "I love you" more times in the next couple of weeks than I had heard in our entire married life!

What to Do: Most of all, be patient! Reassure them. Talk calmly. Leave the room briefly if you need to cry or scream. Talk to people about it. Cry. Cry some more. Have someone else stay with them for a few hours and take a break. Always remember that they don't know what they are saying and that this is not who they really are. Be strong. This will usually pass.

Hallucinations
Don't be surprised if they have mild hallucinations such as seeing people or things that are not there. Many hallucinations can be much worse, such as a major event happening. This can come and go and may be a fleeting thing or last for days.

Causes: This can be caused from lack of oxygen as the body begins to slow down or maybe even from the mind trying to escape from reality.

Example: Many times, my husband thought there was someone else in the room, ranging from our puppy to people he knew to total strangers. The worse hallucinations were when he was convinced that everything was on fire. He thought that the car was on fire, his bed was on fire, the room was on fire, everything was on fire. He really thought that we were letting him lay there and burn up. This lasted for 4 days and he didn't remember any of it later.

What to Do: Reassure them. Try telling them that everything is fine and it was only a dream. Tell them it's not real. Let the nurse or doctor know. There are many medications that can be used temporarily to calm them down.

Odors
As death approaches, you may notice strong odors. These odors are indescribable. The best I can do is to call it the "smell of death."

Causes: These smells are not caused from not keeping them clean. It could be caused by the body releasing certain chemicals through the skin.

Example: I bathed my husband every day and within a couple of hours, the smell was always back. It was so strong that it would literally take my breath away every time I turned him. Every time I washed his back, my cloth would turn dark and look like I was washing thin black mold off his backside.

What to Do: Bathe daily. Sprinkle them and the bed with baby powder. You can spray air freshener before turning them and again afterwards to keep the smell down.

Vital Signs
Normally, the vital signs will rise the last few days. Temperature can spike to 104 F or above and normal temperature can run around 101 F. Blood pressure can drastically rise. Pulse will race above 100/minute. Pulse will be hard to check in arms and legs because circulation is decreasing in the extremities. The lower body may feel cold while the upper body is sweating.

Causes: Elevated vital signs and decreased circulation is just a normal process of death.

Example: My husband's temperature spiked to 105.6 F one day and 106.8 F the next day. His blood pressure went as high as 248/198. He was breathing as many as 30 times a minute and his heart was beating 140 times a minute. My husband suffered a mild stroke during the worst episode of this. All of this would come and go throughout the last month.

What to Do: The body no longer feels cold, so only use light weight covers to avoid overheating. Give a fever reducer such as Tylenol and place a cold cloth on the forehead until temperature comes down. Give a blood pressure pill if prescribed. Use oxygen if available. Always contact doctor or nurse.

Food and Drink
At some point, the body reaches the point where it no longer requires food. You may notice that they are eating less each day until it reaches the point of not eating anything at all. The need for food stops long before the need for liquids.

Causes: As death approaches, the body starts to conserve all the energy that it can to help maintain the more important systems to stay alive. If the body doesn't eat, it doesn't use the energy required to digest it.

Example: My husband stopped eating a month before he died but didn't stop drinking until 2 days before his death. In his mind, he thought he was still eating. When I'd offer him food, he'd say, "Not right now." When I'd ask if he wanted something a little later, he'd say, "No, I'm still full." Some days, he would only take a few sips of a drink, but other days he couldn't get enough to drink. Toward the end, he was unable to hold his drink alone, but thought that he still could which led to many spills in the bed. I started using a baby's no-spill Sippy cups. This worked great. He could keep it in bed with him and manage to take a drink whenever he wanted.

What to Do: Always offer them something to eat often, but don't try to make them eat. While you are eating, it might help to say, "This is really good. Try a bite and see if you like it." Usually, they will let you know if they are thirsty, but offer them a drink often anyway. Let them drink whatever they want, even if all they want is cola. Try Sippy cups if their hands are shaky.

Convulsions
The body may go through a series of convulsions. It may jerk, jump, tighten and stretch the arms and legs. They may moan and groan like they are in severe pain, but at this stage, they do not feel much.

Causes: When the body starts shutting down, convulsions may occur as they lose control of the muscles.

Example: It was heart breaking to watch my husband go through this, but with extra doses of medications, we soon had him calmed down and the convulsions stopped.

What to Do: Call the hospice nurse or doctor right away. They may say that you can double the dose of meds or if you don't have anything, they can have something delivered. Gently stroke the arms and legs and talk softly, letting them know that it's going to be alright.

Death Rattle
You may hear a funny gurgling sound coming from their throat. This is commonly called a death rattle because it comes so close to the end of life.

Causes: The swallowing reflex has shut down and fluid has built up in the throat, making a gurgling sound when breathing.

Example: I guess I was lucky because I never heard my husband make this sound, but he did "throw up" fluid a few times so I guess this kept it from building up.

What to Do: Elevate the head and turn them on their side. This will allow some of the fluid to drain out and keep them from choking if they "throw up."

Cheynes-Stokes Breathing
Breathing normally changes drastically within the last 24 hours. You may notice an increase in the number of breaths taken each minute. This can continue for several hours before Cheynes-Stokes begins. Cheynes-Stokes breathing is a series of fast breathing mixed with apnea. They will have fast shallow breaths for a minute and then stop breathing for 15-30 seconds, then breathe fast again. This cycle may continue for several hours. Breathing will eventually begin to slow down to only 5 or 6 breaths a minute. After a short time, you will think that they have taken their last breath. Don't be alarmed if they take 1 or 2 more breaths a full minute apart.

Causes: The brain controls the breathing, so as the brain shuts down, so does the breathing.

Example: After my husband took his last 3 breaths so far apart, I realized that I had sat there a full 10 minutes waiting on his next breath that never came.

What to do: If you have oxygen, use it. Other than that, there is not much that can be done. Sit and hold their hand. Talk to them and let them know that they are not alone.

The Final Good-bye
The good before the bad is a common occurrence. There may be a period of time before death when it seems that they are actually getting better. They may seem more like their old self than they have been in a long time.

Causes: Terminal ill patients sometimes "come back to us" for a short time to take care of unfinished business or to wait on a certain event to occur.

Example: After a month of bad days, my husband had a good week. We'll never know for sure why this happens, but it was a chance to settle issues. We talked about a lot of past things. He made peace with God. He had a chance to see his children one last time. He saw his grandson's 1^st birthday. He talked to his family on the phone one last time. He was finally totally relaxed.

What to Do: Spend lots of time together. Talk about everything. Let them know that everything will be alright. Give them the forgiveness they need for past actions and mistakes. Let them know that you will be fine alone. Let family and friends visit during this time to discretely say their goodbyes. Let them call the ones that are too far away to visit.

*** I would like to thank Sta-Home Hospice and Home Health Care for the wonderful job they do and for their help with all the useful information I used in this article.