How do you know if your loved one is actively dying? - AgingCare.com

How do you know if your loved one is actively dying?

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My mom who just turned 75 (has dementia) had a UTI 2 months ago and by the time she was admitted to the hospital with fever and extreme fatigue was diagnosed with sepsis with gram negative bacteria. Doctor said she wasn't going to make it. (Kind of long question so bear with me) Surprising all of us, after 10 days, 2 different antibiotics and i.v. fluids she recovered enough to go to skilled nursing. During 2 week skilled nursing she improved each day- went from unable to feed herself or walk on her own, to feeding herself and walking with a walker. I Moved her back to assisted living with an increased level of care. For the past few weeks ago she's been walking w/ walker, feeding herself, watching TV and although she seemed to be more confused and slept more than before she seemed to be doing well. Unfortunately 1 week ago, she fell asleep on her couch, rolled off and broke her clavicle! What seems to be overnight to me, over this past week, she has declined SO much. She can no longer feed herself, is extremely weak, very delusional, sleeps most of the day and night and twitches and shakes, talks to people who are not there and doesn't really make any sense when she does talk to us. She also has a grimace on her face, is pulling at her blanket, staring upwards and reaching often when she's asleep. Is mom dying? I'm there everyday and have had to hire home health at night. She is very thirsty and still eating a little but only if we feed her. Hospice is coming on Monday to assess her and I have a long term care facility coming on Tues. I've been told by a friend (who's mother died of dementia) she thinks my mom is in her last days. BUT the RN at her AL says she thinks mom has several months to live and we need to move her to a long term care facility. The main reason I'm turning to you all with this question is I desperately do not want to move her if she only has a short time to live. I know you all have no way of knowing for sure but would love to know your opinion or past experiences. I've always received wonderful advice on this forum! This has all been so heartbreaking and I just hate to see my mom traumatized more than she already has been..

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I hope this helps. From my experience as a Hospice nurse, it seems pretty right on.

From WebMD article; "What to expect when your loved one is dying."

There are changes you can expect to see as an adult body stops working.
These are a normal part of dying. 1 to 3 months before death, your loved one is likely to:
Sleep or doze more, Eat and drink less, Withdraw from people and stop doing things they used to enjoy, Talk less.

1 to 2 weeks before death, the person may feel tired and drained all the time, so much that they don't leave their bed. They could have:
Different sleep-wake patterns, Little appetite and thirst, Fewer and smaller bowel movements and less pee, More pain, Changes in blood pressure, breathing, and heart rate, Body temperature ups and downs that may leave their skin cool, warm, moist, or pale, Congested breathing from the buildup in the back of their throat, Confusion or seem to be in a daze, Breathing trouble can be distressing for family members, but often it isn't painful and can be managed. Pain can be treated, too. But your loved one may have a hard time taking medicine by mouth.
Hallucinations and visions, especially of long-gone loved ones, can be comforting. If seeing and talking to someone who isn't there makes the person who's dying happier, you don't need to try to convince them that they aren't real. It may upset them and make them argue and fight with you.

When death is within days or hours, your loved one may:
Not want food or drink, Stop peeing and having bowel movements, Grimace, groan, or scowl from pain.
You may notice their eyes tear or glaze over, Pulse and heartbeat are irregular or hard to feel or hear, Body temperature drops, Skin on their knees, feet, and hands turns a mottled bluish-purple (often in the last 24 hours) and is cool to touch, Breathing is interrupted by gasping and slows until it stops entirely.
If they're not already unconscious, your loved one may drift in and out. But they probably can still hear and feel.

At the End;
In the last days or hours, your loved one may become restless and confused and have hallucinations so upsetting they may cry out, strike out, or try to climb out of bed. Stay with them. Try to keep them calm with soothing music and gentle touch. Sometimes medication helps. The room should be well lit, but not bright. Make it as quiet and peaceful as possible. Constantly assure them that you're there. Ironically, a loved one may also become clear-headed in their final hours.

When to Say Good-bye;
One of the hardest decisions is when to call in people to say good-bye and to make memories for the future. Let family members and close friends know as soon as it's obvious that death is near. The care team can help you all prepare for what's coming, both what will happen to your loved one and your own physical and emotional reactions. Being together allows family members to support each other, too.
Even though you've gathered, don't assume it means you'll be there at the end. Often the person doesn't die until those who sat with them for hours have left, as if he or she was unable to let go while the ones they loved were there.

Help and Support;
Caregivers, families, and friends of someone who is dying can turn to:
Family Caregiver Alliance
Hospice Foundation of America
National Caregivers Library
National Hospice and Palliative Care Organization
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It can be a long hard march to the end. You're emotions are normal. No one wants to see loved ones linger when the quality of life has gone. Good luck to you.
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Hello gladimhere and Msmadge. I saw your recent post on my question from last fall so I thought I'd update you. My mom (remarkably) survived the sepsis and also recovered from the broken clavicle although took a dip in her physical and mental state over the last several months. The AL she was living in when she broke her collar bone told me in November that they felt she needed to be in Memory Care. So I researched and toured the best memory care facilities and compared them to the long term care I was considering at the time and ended up moving her (1 week before Christmas) to a very nice, newly built Memory Care center not far from us. It's a lovely place, she has her own little room and so far they have done a very, very good job and she now goes out to the activities room and for meals everyday which was something she never did before. It has been a very good experience however in the last few months she seems to have declined quite a bit in her physical state and of course some mental/memory decline. She still knows who I am and eats most solid food although not very much. She has lost some weight and seems to forget where she is and she is now in a wheel chair most of the time. She can sit up for a short time but will lean to the left after a while in a chair requiring to be propped up with a pillow. Some days she seems happy and might even laugh but others she just stares into space. On September 6 it will be 1 year since the doctors told me she was going to die. While I'm truly thankful for the time we've been given this past year my biggest fear is that she will just linger for months or worse, years just declining. My mom was a vibrant, healthy and fit woman and to see her like this just kills me. Most nights I lay awake worrying about it. I hate to admit it but there are times when I wish this would come to an end and she could just rest in peace. I've been considering having her evaluated by hospice but not sure(?) In the mean time we visit often, give lots of hugs, bring her favorite snacks and have her great-grand babies visit when they're in town. Anyways, thanks for the consideration and take care.
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Madge, I often wonder also when people post asking questions and do not return.
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has anyone heard from denverfan in the months since this post?

I was reading her original post regarding her mom's septic UTI which preceded this one
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Denverfan, let us know what Hospice has to say regarding your Mom's condition. And she does with her move to long-term-care.

Hope everything goes smoothly.
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* have hospice assess her (oops!)
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Thanks so much for your answers. I really appreciate you all taking the time to share your perspectives and experiences. It really does help me. I have decided to go ahead and have hospice asses but I am going to move her to the long term care facility as well. It is a wonderful place and at least I know she'll be attended to. I'm definitely anxious and hate seeing her struggle.. It's all so gut-wrenching but it helps to have a network of people to turn to!
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Denverfan- your mothers situation sounds very similar to what happened to my mother. My mother was on a "slow, steady decline" according to the hospice nurse. Although my mother needed a wheelchair to get around and ate less than a bird, she would have a bad few days and then rally- this went on for months. Moms hospice had been extended - it was on a Friday in the seventh month when moms NH called to tell me she had rolled out of bed. This fall triggered a decline bad enough for a hospice nurse to see her both Saturday and Sunday but both days they called me saying she was stable. Then Monday afternoon the hospice nurse called me saying mom was "transitioning" and that her oxygen levels were at 70% - not good. He said probably a few days to a week. I went that afternoon to visit my mom and will always be glad I did - mom passed at 7:25 the next morning. The hospice nurse later told me that rather than moms fall out of bed triggering the end - he felt the end being near triggered the fall. I'm sorry if this is hard to hear but if it were me - I'd want to know. Of course every situation is unique and you mother may be around a while longer. Get hospice to evaluate for you - they usually know the signs quite well and can provide comfort and guidance.
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Denverfan, I think it can vary from person to person. My Mom was doing the pulling at the blankets, moving her feet like she was running, and lifting her arms upwards... thus was in a delirium mode. She lived a couple more months after that.

My Dad, it was only a week after he was showing the mild symptoms and he passed.

Denver, chances are maybe your Mom wouldn't even noticed that she had been moved to a new location. I remember when my Mom moved from rehab upstairs to long term care, she never realized she had moved. Now, don't be surprised if your Mom rallies for a day or two, then reverts back to sleeping most of the day.
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