Alzheimer`s Disease/End of life symptoms?


Hi Mary,
I'm looking for a little clarification and perhaps you can help.  I've noticed my mom, in the last two weeks, has begun to have raspy breathing, sleeping quite a bit through the day, and is unable to hold her head up.  This sounds like end of life symptoms to me, but I really don't know what that means.  From what I've read she could still have up to two years.  She's currently diagnosed with Alzheimer's.  Her mother died with it, as well as two of her sisters.  Now its our turn.  Is this end of life for mom?  What does that mean, timewise?  We've battled this for so many years, to think she only has a month or less (my guess here), just floors me.  Do you know of any timing guidelines relative to mom's symptoms?  I'd take any "guess" you could offer.  Thanks.

Hi Beth - I assume your mother has the usual end stage dementia characteristics - she has lost speech, she is incontinent, can no longer walk, spends most of her time propped in bed or a chair, has to be hand fed, and is losing weight. When things are starting to go south, they also often start to get opportunistic infections as their immune system becomes less effectiveness. As you note,  people in the late stage often get very weak, and sleep all the time, and frequently are not very reactive - they are pretty much oblivious to where they are, who they are with, or what is going on around them.

It is very hard to say what is going on and whether the end is close. I don't know if you have had a doctor see her, to see if she has developed any kind of infection. Do you have hospice involved for palliative support? As I know you know, sometimes something very small can tip the balance and send them into a final spiral, and at others, they can be very tough and live on in terrible condition much longer than anyone expects.

Here are some signs the end may be coming relatively soon.

10 Usual Signs When Death is Coming

No one can predict the moment of death. But physicians and nurses involved in end-of-life care know that certain symptoms are usually associated with the body’s shutting down. These signs of approaching death are specific to the natural dying process (apart from the effects of particular illnesses the person may have).

Not all dying symptoms show up in every person, but most people experience some combination of the following in the final days or hours:

1. Loss of appetite

Energy needs decline. The person may begin to resist or refuse meals and liquids, or accept only small amounts of bland foods (such as hot cereals). Meat, which is hard to digest, may be refused first. Even favorite foods hold little appeal.

Near the very end of life, the dying person may be physically unable to swallow.

How to respond: Don’t force-feed; follow the person’s cues even though you may be distressed by a loss of interest in eating. Periodically offer ice chips, a popsicle, or sips of water. Use a moistened warm cloth around the mouth and apply balm to the lips to keep them moist and comfortable.

2. Excessive fatigue and sleep

The person may begin to sleep the majority of the day and night as metabolism slows and the decline in food and water contribute to dehydration. He or she becomes difficult to rouse from sleep. The fatigue is so pronounced that awareness of immediate surroundings begins to drift.
How to respond: Permit sleep. Avoid jostling the person awake. Assume that everything you say can be heard, as the sense of hearing is thought to persist, even when the person is unconscious, in a coma, or otherwise not responsive.

3. Increased physical weakness

A decline in food intake and lack of energy leads to less energy, even for activities like lifting one’s head or shifting in bed. The person may even have difficulty sipping from a straw.
How to respond: Focus on keeping the person comfortable.

4. Mental confusion or disorientation

Organs begin to fail, including the brain. Higher-order consciousness tends to change. “Few conditions leave people hyperaware when they’re dying,” says palliative-care physician Ira Byock, author of Dying Well.

The person may not be aware of where he or she is or who else is in the room, may speak or reply less often, may respond to people who can’t be seen in the room by others (see Passing Away: What to Expect When Witnessing a Loved One’s Death), may seem to say nonsensical things, may be confused about time, or may act restless and pick at bed linens.
How to respond: Remain calm and reassuring. Speak to the person softly, and identify yourself when you approach.

5. Labored breathing

Breath intakes and exhales become raggedy, irregular, and labored. A distinctive pattern called Cheyne-Stokes respiration might be heard: a loud, deep inhalation is followed by a pause of not breathing (apnea) for between five seconds to as long as a full minute, before a loud, deep breath resumes and again slowly peters out.

Sometimes excessive secretions create loud, gurling inhalations and exhalations that some people call a “death rattle.”

How to respond: The stopped breathing or loud rattle can be alarming to listeners, but the dying person is unaware of this changed breathing; focus on overall comfort. Positions that may help: the head slightly elevated with a pillow, sitting up well-supported, or the head or lying body tilted to the side slightly. Moisten the mouth with a wet cloth and moisturize with lip balm or petroleum jelly.
If there’s a lot of phlegm, allow it to drain naturally from the mouth, since suctioning it out can increase its quantity. A vaporizer in the room might help. Some people are given oxygen for comfort. Be a calm, physical presence, stroking the arm or speaking softly.

6. Social withdrawal

As the body shuts down, the dying person may gradually lose interest in those nearby. He or she may stop talking or mutter unintelligibly, stop responding to questions, or simply turn away.
A few days before receding socially for the last time, the dying person sometimes surprises loved ones with an unexpected burst of alert, attentive behavior. This can last less than an hour or up to a full day.

How to respond: Be aware that this is a natural part of the dying process and not a reflection of your relationship. Maintain a physical presence by touching the dying person and continuing to talk, if it feels appropriate, without demanding anything back. Treasure an alert interlude if and when it occurs, because it’s almost always fleeting.

7. Changes in urination

Little going in (as the person loses interest in food and drink) means little coming out. Dropping blood pressure, part of the dying process (and therefore not treated at this point, in tandem with other symptoms), also contributes to the kidneys shutting down. The concentrated urine is brownish, reddish, or tea-colored.

Loss of bladder and bowel control may happen late in the dying process.
How to respond: Hospice medical staff sometimes decides that a catheter is necessary, although not in the final hours of life. Kidney failure can increase blood toxins and contribute to a peaceful coma before death. Add a bed pad when placing fresh sheets.

8. Swelling in the feet and ankles

As the kidneys are less able to process bodily fluids, they can accumulate and get deposited in areas of the body away from the heart, in the feet and ankles especially. These places, and sometimes also the hands, face, or feet, take on a swollen, puffy appearance.

How to respond: Usually no special treatment (such as diuretics) is given when the swelling seems directly related to the dying process. (The swelling is the result of the natural death process, not its cause.)

9. Coolness in the tips of the fingers and toes

In the hours or minutes before death, blood circulation draws back from the periphery of the body to help the vital organs. As this happens, the extremities (hands, feet, fingers, toes) become notably cooler. Nail beds may also look more pale, or bluish.

How to respond: A warm blanket can keep the person comfortable, or he or she may be oblivious. The person may complain about the weight of coverings on the legs, so keep them loose.

10. Mottled veins

Skin that had been uniformly pale or ashen develops a distinctive pattern of purplish/reddish/bluish mottling as one of the later signs of death approaching. This is the result of reduced blood circulation. It may be seen first on the soles of the feet.

How to respond: No special steps need to be taken.

Note: These general signs of impending death can vary in sequence and combination from person to person. If a person is on life support (respirator, feeding tube), the process dying follows can be different. The signs of death listed here describe a natural dying process.

My best advice would be to have a discussion with her doctor and care team to see what they think may be going on - and what, if anything, you will want done for her. If you have hospice services, they can be wonderfully supportive for both your family and your mother, to make sure everything is done to keep her free of pain, to keep her serene and as peaceful as possible. If you have not already done so, this is the time to make sure everyone is on the same page with respect to caring for her - and discuss whether or not you would want any interventions or trips to hospital, medications or procedures etc. or if you are ready to let nature take its course if these are indeed her final weeks.

Thinking of you.  

Alzheimer`s Disease

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Mary Gordon


Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.


Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

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