Expert: Mary Gordon - 7/17/2010

Question
Hi,

My mom has been in a nursing home with alzheimer's for 10-1/2 years. It is a wonderful place and they have done a phenomenal job taking care of her.

When she went there she needed more care than my dad could give. She already didn't walk or speak too much. She has held on much longer than any of us believed possible so she has obviously wanted to live.

She has always known me and opened her eyes the minute she heard my voice. She hasn't been able to move her arms and legs for several years already. She has no sense of time but I know she still understands certain words.

Last week they had to stop feeding her because she cannot swallow at all anymore. She has not had food or water in around 9-10 days already. I expected her to just sleep as her body gradually shuts down.

But she has had her eyes open and been response with her facial expressions every day when I go there. She is not in pain although morphine is available should she need it.

She is 86-1/2 years old. She has an incredible will and has not wanted to die or she would have many times already over the years. She has a very strong faith in God and is a Christian.

My question is: any idea how long she might live without food or water as it has already been well over a week? I just want whatever is God's will to happen. But I feel bad she is in this state for so long.

She has nothing wrong with her other than alzheimers and the only thing she has ever had in almost 11 years at the nursing home is vitamins and stool softeners. She was able to be in her wheelchair every day until last week when she stopped swallowing and they said she would just stay in bed till the end.

Have you ever seen a situation like this before?

Thanks,
Diane

Answer
Hi Diane, I know this is so so hard to watch. The waiting and not knowing is difficult. It won't be long now. She's like a little bird on a branch that is about to fly away home. I genuinely think you are suffering more than she is. At this point, I truly think they are like a whispy silvery balloon floating away, barely aware of their surroundings, and they are tied to their body by the thinnest of threads. I expect in the next couple of days, she will be set free and be at peace.  

My mother in law ate and drank less and less in her final months until she stopped almost entirely. Like your mother, after that point it took a few weeks to the end. No one could believe she could survive that long. She was a fragile as blown glass, and as tough as nails at the same time. I do think she was ready to go - she'd been pushing away offered cups and spoons, but sometimes the shell that is the body is made of strong stuff!

It's so sad that your poor mom has had such a long struggle with dementia. No one deserves that as a cap to a long life. Sounds like with such a robust constitution and strong will, she lost many years when she should have been able to enjoy her family.

All you can do is sit by her side and hold her hand - and whisper in her ear everything you need to say to her.  Wherever she is, she can hear you and she'll know you are there. Tell her how much you love her, tell her what having her as a mother has meant in your life, tell her it's okay to let go.

I think you are doing the most brave thing by putting your trust in God's hands. She is not suffering, and this is the kindest, most loving gift you could give her - to keep her comfortable and out of pain, but stop the fighting against will be a most merciful end. This is not an easy choice for many families, and it requires a person to put away their own fears and prejudices, and really be mature, and think about what is best for their loved one and what they would have wanted.

Signs that death is coming in the short while:

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 drifts.

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.

Mental confusion or disorientation: Organs begin to fail, including the brain, even beyond what has been caused by the dementia. Higher-order consciousness tends to change. 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, may seem to say nonsensical things, may be confused about time, or may act restless and pick at bed linens.

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." This can sound alarming, but the person is not aware of it and doesn't seem to be uncomfortable.

Social withdrawal: As the body shuts down, the dying person may completely 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.

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.

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.

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.

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.

I wish you peace as well. You have been with her on this long hard journey, and it will be over soon for her. I hope sincerely you can look back on her long life, and rejoice in the gift that she was - be glad for all the happy memories, and regret only that that dementia took some years from her. I want you to have no regrets about your choices or actions - you have done everything you could do to make her comfortable and surrounded by wonderful care and love.

Thinking of you and your family.

Mary