Expert: Mary Gordon - 3/4/2010

Question
Mary,

My mother is 83 years old and in the last stage of Alzheimers.  She only weighs about 75 lbs. and is living with and being cared for by a CNA in her home.

The last solid bite of food (ice cream) my mother had was Thanksgiving of 2009.  Since then she has had 1-2 bites of applesauce a couple times a week.  No ice cream of any other type of food.

Her caregiver gives her small sips or droppers of fluid, but probably no more than 1 oz. per day.  There is NO feeding tube or any other external sustenance.

Hospice is completely baffled and does not understand how my Mom can still be alive.

We eliminated all medications (except comfort meds)in October, 2009.

Have you ever heard of a case like this?  We have been expecting her to pass since before Christmas.  Needless to say, this situation is killing me.  Watching someone die from Alzheimer's is not for the faint of heart.  I pray every day for her to pass and leave this world which has nothing left for her.

Thank you for anything you can tell me.

Marcia Row

Answer
Hi Marcia, there isn't much I can tell you. I know this is a grinder for you - the waiting and waiting, and not be able to do anything is very stressful. The very frail elderly can be as tough as nails and live on longer than you ever expected - and at the same time, they can be so fragile that they are like an egg balanced on end, and some tiny thing can tip the balance.

Her survival is a testament to how well cared for she has been - that she hasn't had any minor infections or colds. I suspect she wouldn't have much fight left in her immune system.

All I can tell you is the common signs when death is getting close.

1. They either can't be awoken at all (ie. a coma) or you can wake them only with great difficulty, after which they quickly go back to sleep (semi-coma)

2. Agitation, hallucinations, fidgetting, plucking at bedclothes, perhaps talking "crazy" It's caused by low oxygen.

3. Dramatic changes in the breathing pattern including periods of not breathing (apnea), but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow). This is called Cheynes-Stokes breathing.

4. Rattling sounds when they breathe caused by congestion or fluid buildup in lungs.

5. Not taking anything at all by mouth - inability to swallow at all.

6. The person cannot speak at all even if they are awake, and they start breathing through a wide open mouth continuously.

7. They produce less and less urine, and it gets to be a very dark color (often like tea). This is a sign the kidneys are shutting down.

8. Their blood pressure starts to drop dramatically from normal (more than a 20 or 30 point drop). Systolic blood pressure below 70, diastolic blood pressure below 50

9. Their hands, arms, feet and legs feel very cold to touch. This is because as systems shut down, the body is diverting blood flow to internal organs.

11. Their hands, arms, feet and legs start to change color - bluish or purple coloring or mottled appearance.

12. They may hold their body in a rigid unchanging position

There really is nothing you can do other than watch and wait. The CNA should be able to alert you to any changes, so if you wish to be there, you can take up a vigil. Believe me, I know exactly how this feels. The last weeks of my mother in law's life were absolute hell on my husband. However, her end was very gentle and quiet and he was there with her, and is glad of that.

Even if she can't respond, she is likely to be able to hear you even to the end. Hearing is usually the last sense to go, so use this time to tell her everything in your heart, that you want or need to tell her. I know you won't regret it. You want to get through this with no regrets. I think this is much harder on you than her. She really isn't aware of what is happening to her, and she is past any worries or fears or regrets. That is a kindness, in a bleak scene.

Thinking of you, and knowing that it won't be long now. Hang in there. The little bird will fly from the branch and she will be free.

Mary G.