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A Guide To Understanding End-Of-Life Signs & Symptoms
Crossroads Hospice & Palliative Care created guidelines to help family caregivers better understand the physical changes of the end-of-life process, as well as the emotional and spiritual end-of-life changes taking place.
The following describes the physical symptoms you may observe. Here are end-of-life signs and helpful tips:
Coolness. Hands, arms, feet, and legs may be increasingly cool to the touch. The color of the skin may change and become mottled. How you can help: Keep the person warm with comfortable, soft blankets.
Confusion. The patient may not know time or place and may not be able to identify people around them. How you can help: If this end-of-life sign is occurring, Identify yourself by name before you speak. Speak normally, clearly, and truthfully. Explain things such as, “It’s time to take your medicine now.” Explain the reason for things, such as, “So you won’t start to hurt.”
Sleeping. An increasing amount of time may be spent sleeping. The person may become unresponsive, uncommunicative, and difficult to arouse. How you can help: Sleeping more frequently is normal. You can sit quietly with them. Speak in a normal voice. Hold their hand. Assume they can hear everything you say. They probably can.
Incontinence. They may lose control of urinary/bowel functions. This is a common end-of-life change that can occur during the process of passing on. How you can help: Keep your loved one clean and comfortable. Ask your hospice nurse for advice.
Restlessness. The person may make repetitive motions such as pulling at the bed linen or clothing. This is due in part to A decrease in oxygen. How you can help: Do not interfere with these movements or try to restrain them. Speak in a quiet, natural way. Lightly massage their forehead. Read to them. Play soothing music.
Congestion. There may be gurgling sounds inside the chest. This is also sometimes referred to as a "Death Rattle." These may be loud. This end-of-life symptom does not indicate the onset of severe pain. How you can help: Gently turn their head to the side to drain secretions. Gently wipe their mouth with a moist cloth.
Urine decrease. Output may decrease and become tea colored. How you can help: Consult your hospice nurse.
Fluid and food decrease. Your loved one may want little or no food or fluid. The body will naturally conserve energy required for the task ahead. Food is no longer needed. How you can help: If this end-of-life symptom is present, do not force them to eat or drink if they don’t want to. It only makes them more uncomfortable. Small chips of ice or frozen juice chips might be refreshing. A cool, moist cloth on their forehead might help.
Change in breathing. The person may take shallow breaths with periods of no breathing for a few seconds to a minute. They may experience periods of rapid, shallow panting. These patterns are common and indicate decrease in circulation. How you can help: Elevating their head or turning them on their side may bring comfort. Hold their hand. Speak gently.
Fever. Increase in temperature is common. How you can help: Consult your hospice nurse. A cool, moist cloth on their forehead may bring comfort.
Wishing you good luck & Godspeed at this difficult time. Sending you a hug and a prayer for peace.
You might try having your dad take a bite here or there every half hour or hour instead of trying complete meals three times a day. I found with my dad near the end that a sip of water, or a few drops of medication, frequently rather than at three or four hour intervals, made a big difference in his comfort levels.
You've received a lot of great input to your questions and I'm sorry you're so upset due to the confusion surrounding the situation.
There will be things that are common from person to person and then there may be some things that are different in how one responds.
One thing is the elderly in general often lose their once healthy appetites because they do lose their keen sense of taste/smell which makes food unappealing in a way. They will also eat smaller portions. I think of how when I have a cold, nothing tastes good so I don't feel like eating and yet I can feel a sensation in my stomach that my body is hungry.
My mom was 89 with Alzheimer's when I moved her into an ALF and she simply didn't enjoy their food. But if I brought a little something, she would eat it.
When you say when he eats, it's making him sick. Maybe it's the type of foods which he can no longer tolerate. I know with my mom now that she's 95 and under hospice care due to nearly dying of severe dehydration and COVID, she can't eat heavy, rich foods i.e. meats, heavy pastas etc. She had lost 20 -30 lbs during her hospital, rehab stays and then moving into a memory care unit. I thought three times she was near death. Currently, she is doing better than she has in the last six months. I was told she finally gained some weight too. But in the meantime, I was bringing her individual ice cream cups, some soft rice pudding, V8 Energy + drinks which have one serving of fruits and vegetables and Nestle Pure Life "Splash" which is a slightly flavored water to help with getting her to drink water. Hospice is now providing the Ensure Protein drinks as well and apparently, she will eat small portions of her meals. That is an improvement from when she was at rehab in April/May.
I never forced her to eat and drink, I just brought the items for the staff to have on hand if she wouldn't eat or drink what they gave her and I would just encourage her to eat so she has come a long way.
Although, I haven't been able to read through each comment, I know "cwillie" provided you with signs of someone who is actively dying. You can also go to the upper right hand corner and click on "care topics" on the teal/green bar and under "E" there's information about "End of Life Signs."
I know this is distressing for you but, right now, I feel like the more educated you become regarding all of this, the more at ease you may feel. It's really when we don't know what's going on that creates a lot of angst and confusion for us. I'm not suggesting it's easy when we do know, it's just easier.
You and your dad will be in my thoughts and prayers!
She was done eating and drinking.
This is different from someone who won't seek food on their own, but will take some when it's presented to them.
One, there is a choking hazard. Your dad may not be able to swallow well, get that checked out if you're not sure.
But also, if they are on hospice, I don't see the point of nutrition intake. Without knowing anything else, I'd say if he doesn't feel like eating then don't force the issue too much. Many people have said they give ice chips for some moisture in the mouth, a little something to suck on. That makes a lot of sense to me.
You could give him the Ensure Plus shakes and encourage him to take some sips. That's about the most I would do, personally.
Big (((((hugs))))), this is a hard time.
***So I learned something reading a few comments, that some declining elderly will take food when presented with it, they just won't necessarily seek it on their own. That's different to me than refusing food.
My grandmother refused food but I would try to insist, and really wish I wouldn't have. I could have focused on making things peaceful for her in her last few weeks and instead I was making her do things she didn't want to do. I just wanted her to "get well" so much, but that's not the track she was on.
My husband stopped eating one day. Never asked for food again, and when I would initially ask him if he wanted something, he would say no, and I knew then that his dying process had begun. He had been running a high fever 2 days prior to him stopping eating, and was in a partial coma for a few days as well. His hospice nurse said he would be dead in 3 days, but he lived for 41 days without eating and about 25 days without any sips of his drink. It was hard to watch as my husband went through all of the phases of dying, including extreme pain, agitation, slept a lot and more.
Just enjoy whatever time you have left with him. Let his hospice nurse answer any questions you might have along the way, but remember that they are human, and only God knows the day and time that He will take your father Home. May God give you His peace and comfort during the days, weeks and months ahead.
Same with fluids.
Do not force someone to eat or drink.
Is your dad on Hospice? If not you might want to contact a Hospice they can help you and help you recognize signs.
There are changes in breathing, changes in sleeping, changes in skin coloring. One of these alone might not mean much but together they do indicate a transition to what is called "actively dying".
There is a lot of information about the active phase of dying but concise, easily understood info about the preactive phase is harder to find. I'm including a quote from Hospice Patients Alliance
"There are two phases which arise prior to the actual time of death: the "pre-active phase of dying," and the "active phase of dying." On average, the preactive phase of dying may last approximately two weeks, while on average, the active phase of dying lasts about three days.
We say "on average" because there are often exceptions to the rule. Some patients have exhibited signs of the preactive phase of dying for a month or longer, while some patients exhibit signs of the active phase of dying for two weeks. Many hospice staff have been fooled into thinking that death was about to occur, when the patient had unusually low blood pressure or longer periods of pausing in the breathing rhythm. However, some patients with these symptoms can suddenly recover and live a week, a month or even longer. Low blood pressure alone or long periods of pausing in the breathing (apnea) are not reliable indicators of imminent death in all cases. God alone knows for sure when death will occur.
Signs of the preactive phase of dying:
increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
withdrawal from active participation in social activities
increased periods of sleep, lethargy
decreased intake of food and liquids
beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
patient reports seeing persons who had already died
patient states that he or she is dying
patient requests family visit to settle "unfinished business" and tie up "loose ends"
inability to heal or recover from wounds or infections
increased swelling (edema) of either the extremities or the entire body"
(https://hospicepatients.org/hospic60.html)
I want to add that according to my research the timeline for someone dying of old age is often considerably longer than someone dying of some other terminal illness; think months rather than weeks, weeks rather than days.
If your dad doesn’t want to eat please don’t make him. He will intrinsically know when he wants or needs food and when he doesn’t, and when the time comes that he doesn’t, food will be no good to him and even possibly harmful. Maintain fluids in small amounts at a time. My dad lost all desire for food four days before he died and never ate another bite. It happened very naturally, he just couldn’t do it anymore, no need or desire for it. He had fluids until the end in smaller and smaller amounts through a straw or in ice chips. I also made ice chips out of his favorite drinks, like Sprite.
The end of CHF makes a person so exhausted and tired of this world. Focus on comfort, I’m sorry for anyone on this road. Wishing you both peace
Hospice moistened her lips frequently with a q-tip, when she stopped taking fluids by mouth during that last week.
I knew pretty much when she was imminently in the presence of death. She was not making any sounds or moving. She died about 7 hours after my last visit.
There are certain markers for some people, but at 95, I think the course of her death was pretty predictable.
How is your Dad generally?
What do you mean by "make him" eat, by the way? Make him, how?