Expert: Mary Gordon - 5/9/2006

Question
Hi Mary,
I just read your description of your mother-in-law's alzheimer disease process and it described our family's  present situation. About 4 weeks ago my grandmother (who has been bed ridden and has not spoken for 1 1/2 years ) became constipated for over 9 days. She started to be quite agitated and showing signs of pain ( grimaces and clenching). A fleet was given and supposidely "cleared her up".From then on she always seemed to be uncomfortable. The family was pushing to increase her pain medication which was 2 regular tylenol every 4 hours. The pain got worse and so dilaudid was prescribed (0.2) every 4 hours plus ativan. She went into periods of sleep and resting well so she missed some meals. She then seemed to refuse to eat(open her mouth) for food anymore. And if the food made it in she did not swallow. 10 days ago now ...She has not had food or liquides other than swabbing her mouth. She continually seems to get a tolerance for the meds( or her pain is increasing) because they always seem to be wearing off...She is on 12? Dilaudid on the hour with a top up of "Versaille?" every half hour...the latter med was said to help the Dilaudid work better. Two days after she stopped eating we thought she was going to die within the hour because she was having periods of apnea for over a minute. We and the medical staff were wrong. Her heart is strong and she is fighting fevers as she is waisting away to bone and skin. The family and I can't understand how she is surviving?...Are we killing her?....Is she not ready?....Does she even understand what is going on? ...Is her pain contolled?... Why does she have pain?...
Sorry for all the questions. I know you can't answer most of them. I guess I am just so frustrated because I am a health professional ( Physical Therapist) and I can't help my grandmother...
Thanks for listening, Donna.

Answer
She is likely very near to death - so the real question for you, is there any alternative to letting her go? If you were able to pull her back from the brink, would there be a purpose, other than continuing an existence where she has no quality of life, and a steadily declining condition - where she is in essence,  already gone in every way that matters.  

Some of what you are seeing is probably from the dilaudid itself.  Dilaudid causes constipation all by itself, and worse if the person isn't taking in enough fluids. It also causes irregular and suppressed breathing.

I can't answer why she's having pain. It would not be from the Alzheimer's itself, which causes death when the brain damage reaches the point where the person really has no control of their body, little awareness, no feelings of hunger or thirst - eventually, as the brain shuts down, so does the body.

Many people who die in later stage Alzheimer's actually die from other causes, because having late stage Alzheimers makes them frail and vunerable to all kinds of health complications. On top of that, if the person does develop other health problems, they are extremely difficult to adequately diagnose or treat. If the person can't answer questions, if they can't cooperate with tests or treatments, or if the tests and treatments are frightening or upsetting, uncomfortable or outright painful, families often opt just to leave it be - to keep the person comfortable, control pain, and as calm and happy as possible (i.e. palliative care). If for example, you knew your grandmother's current pain was from cancer or an infection - what would you do differently? Probably nothing. She's fought the long fight, and nothing medical science has to offer will bring her back to either physical health, or a better cognitive condition. Treatments at that point don't restore health - they just prolongue the misery.

I know how very hard this is - you are doing everything you realistically can do. The bird is on the branch, about to fly. We always feel like we should be DOING something to fight - when maybe our real job is to sit by her bedside, hold her hand, and watch ship set sail. It won't be long now.

What a lucky woman to be so loved.

Thinking of you.

Mary G.
Toronto