Expert: Mary Gordon - 5/2/2008

Question
QUESTION: My mom has had alz for about 10 years. My sister has been taking care of her at home. On April 8, 2008 she stopped eating and drinking. On April 10 she was admitted to the hospital with sever dehydration..the doctors said she was in kidney and renal failure, and time to let her go as she would not last more than a few days. She was not put on life support..only comfort care of morphine and ativan. Her vitals have been consistently good (normal), with very little change. She has been coherent and aware. She started convulsing on the 29th...they got it under control and took her off morphine and put her on phenobarbital drip of along with the ativan drip. On 4/30 her vitals dropped bp 50/32. Now today, her vitals are back up to normal, she is coherrent, and is urinating normal. She has had no food, nutrients or water for over 3 weeks. How is it that she is still alive? She has been healthy her whole life, no problems except the alzheimers. She is 83 yrs old. We are all baffled and no one can give us any answers. How long can a alz patient live without nutrients and water?

ANSWER: Hi Chris,

She is getting fluids via the drip they are using to give her drugs. That she is producing at least some urine likely means she is not dehydrated at the moment, and her kidneys are working at least somewhat. That she is alert and coherent also suggests that her kidneys must be functioning a bit, or she would be very sleepy and disoriented, and even comatose, from a build up of wastes that the kidneys filter out of the blood. The wastes in her blood stream (like urea) what probably caused her seizures.

It is hard to say what will happen. She is not dying from Alzheimer's, but from renal failure (which is the same thing as kidney failure). A person CAN live for several weeks without food.

Usually, dying from kidney failure is fairly gentle and most symptoms can be suppressed. It sometimes takes a while - for example, if a person on dialysis decides to stop treatment, they can sometimes live for months.

My mother in law did not have any IVs, and she took about 6-8 weeks to die after first starting to refuse food. She ate and drank less and less, finally stopped entirely, lapsed into a coma and died. It was a very gentle, peaceful death, and she was not suffering at all, but  I know what you are going through. It is very hard and exhausting to have the end drag on - your emotions are all over the map, from hopeful one day, to despairing the next, to grief stricken and distressed, and back again. It is extremely hard on the family, and I know you are very stressed out watching this, and I know you are worried she will suffer or be scared.

All you can really do is what you are doing, and see what happens. Have you talked to each other and to the doctor about options? Would you want her moved to hospice for palliative care? In that case, they are likely to remove the drip, and she would likely pass away within a week if she continues to refuse drink and food by mouth.

I am sorry you are going through this. You sound like caring daughters.

Mary G.

---------- FOLLOW-UP ----------

QUESTION: Mary,
Thank you so much for your prompt respose, insight and kind words. Last Friday mom was moved to a hospice that was recommended by hospital and social workers. It was a disaster and like something out of a horror movie..they were in no way prepared for her and did not have staff available to take care of her properly. Within a couple hours she was removed from there by ambulance and had to be admitted back into the hospital. We have been very leary since then.  Because of hospital policy, they say she has to be discharged once again. Our plans today are to get her off the drip and on pheno patches and bring her home to spend her final days in familiar surroudings. Thanks again for being there.
Chris

Answer
Hi Chris, I don't blame you for being upset at the hospice care. Usually they are terrific, but it sounds like you got a real lemon. Seems crazy they didn't have the staff to look after her - after all, a lot of people who are in their last days need very heavy care (its  not like they send healthy people to hospice - most need complete care).

Taking her home sounds like a wonderful idea. My grandmother died at home, and I was there when she passed. It wasn't scary at all, her family was all around her, and she went very peacefully and gently - in her own bed, surrounded by familiar things and people. It seemed so right - and a much better way to go than in a hospital setting. It may sound strange, but the memory of that evening is something I treasure - sitting there, holding her hand, all of us whispering our love to her.  

Thinking of you, and hoping for the kindest end to her story.

M