Expert: Mary Gordon - 1/6/2007

Question
My dear Mom, age 93 1/2, now late stage 6, diagnosed 1998 (but I first noticed very small things starting mid 1996) has gone downhill physically in past few months, with multiple, repeated infections.  Want hospice care when needed, which I realize may be soon.  Since 1998, she pretty much has spent about 2 years in each stage.  She went into assisted living (United States) in fall of 2003, went from late stage 4 to stage 5 (the AD equivalent of the terrible twos) in early 2004 after breaking her pelvis in Dec. of 2003, and had to be moved to a lock-down facility for wandering, hallucinations, paranoia, delusions in mid 2004.  Put on Respiradol (best AD med for her) at that point, taken off in early 2006 when no longer needed.

She was very verbal until about Mar 2006, then she started losing her speech and vocabulary, and in past 2 months has had repeated opportunistic bacterial infections (almost like an AIDS patient)and now thrush from all the antibiotics, 4 hospitalizations in 1 month to stabilize conditions, dehydration, impacted bowels, bacterial and viral infections.  She is sleeping more and more (sometimes when sick unable to rouse her).  She will/can only use her walker intermittantly or is too weak to stand, so now in a wheelchair most of the time.  Refusing to eat much, or only a few bites every other day.  Then she seems to have a day or two once a week when she rallies and walks.  Still smiles when feeling well, some of her old humor, sometimes knows I'm her daughter, other times at least a relative or health aide or friendly face.

I had her treated for tachtycardia in the hospital because it was causing her discomfort (shortness of breath) and for the thrush for the same reason, but I don't know where to stop the moderate medical intervention.  She never wanted heroic measures, and neither do I, and she has a DNR and legal papers to that end.  I thought she was dying in Dec 2006, but she pulled thru.  But it seems her immune system is going or gone, her speech mostly garbled at this point, and she is losing her ambulatory abilities.  She is in a wonderful facility and they coordinate with hospice.

Is the next round of misery the right time for hospice?  The doctor must assess a 6 month lifespan for the US for hospice, but she seems more optimistic than I about Mom's condition.  Went thru this with my late Dad (diabetes and heart disease, died at the young age of 67), but the decline looks similar at the end and inevitable to me.

Is this the probable beginning of the end?  I am right in thinking she probably won't make it thru 2007?  I don't want her to go thru the worst of stage 7 if she could go more peacefully from something non-painful.  But I don't want her to suffer from infections/conditions that are painful.  That is even harder than watching her die like this.  

Answer
Hi Anna,

Wow, you and your poor mother are really going through some difficult challenges. She's lucky to have you looking out for her.

Because she is so elderly and frail, she's like an egg balanced on end. She's certainly heading into the last stages. Here is a description of the last stage (from Dr. Reisman, who developed the most commonly used "set" of stages).

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost  

I think it would be helpful for you to have a straight up talk with both the doctor and the hospice. Ask the doctor directly to be honest with you (who knows if he's putting a spin on what he thinks to keep your spirits up).

For the most part, hospice means palliative care only - which means that other than comfort measures, they may or may not treat infections and any of the other issues she's had recently. You will have to find out what they would propose if she developed any of the problems she's had over the last months - and then think about what you are ready for. Are you ready to let nature take its course - with the proviso that they keep her comfortable and free from pain. In a lot of ways, this is going to be much more difficult for you than her. Hospice usually means no tubes, no trips to hospital etc. Are you ready to stand by and let her go?

What is likely to send the tide out is the food and drink issue. As she eats less and less - and drinks less and less - she will become weaker and weaker and enter a final spiral. Having seen this with my mother in law, they don't seem to suffer at all. Its very gentle and dignified, but it is hard to endure for the family, since that phase can go on for weeks.

Hang in, and ask to talk to her doctor. If I were a betting woman, I would say you are right, that the end is likely within 2007. They can surprise you though - my mother in law lived two years after losing her ability to walk and talk - but she was only in her late 70's and not as frail as your mother.

It breaks your heart, doesn't it. They don't deserve all this misery at the end. You might also want to talk to the hospice workers to find out exactly what they would or wouldn't do for your mother, so you can gauge if you are emotionally ready to sit by and hold her hand, and have that be enough.

Mary