Expert: Mary Gordon - 1/13/2012

Question
My mother has been in hospice care since May 2011 and we have said goodbye to her 3 times, the third time being Christmas Eve.  Each time she rallies to some extent.  A few days ago the hospice nurse told me she thought Mama was "transitioning to death" and there were some behavioral changes such as lack of response, staring, reaching upwards.  I am with her daily (she lives in assisted living) and I have noticed she seems less aware of my presence lately.  She talks less but still does talk, although you can't understand what she says.  Occasionally she comes out with real words.

Today her blood pressure is back to normal, 115 over 70, whereas for the past few months it has been 80s over low 50s.  The past few days she is sitting up in her bed again, after just lying there for months.  I know you don't get better when you have Alzheimer's, so what is going on?  Do you know of cases where the person's blood pressure improves like this?  In some ways she seems to be getting better.  Just a few days ago we thought she was dying again.  What a roller coaster ride this has been.  She weighs all of 65 pounds and doesn't eat; she does drink ensure and fruit juice.  She hasn't really eaten for many months, except for a few bites of fruit or pudding on a really good day.  She sleeps most of the time.

Please let me know about this blood pressure improvement.  I am baffled.  Thanks so much,

Leigh Loveday

Answer
Hi Leigh

I wish I had a good answer for you. I know this phase is a complete emotional grinder - and a confusing and exhausting one. This kind of fluctuation just happens sometimes, and it is perplexing. There is no real rhyme or reason to it, and in many families it is deeply distressing, because they then question the hospice option - it makes them think perhaps their loved one isn't necessarily spiraling down, perhaps there is a misdiagnosis, perhaps there is hope - at the same time their rational intellect knows that there is no return to health possible. I know our family went through a two year marathon in my mother in law's final years where we wondered how much longer could it go on -  how much worse could it possibly get? I had never witnessed anything as difficult as what my husband experienced during his mother's last months. I truly feel for everyone who loves your mother. I've been there.

I don't have a real answer. You know that at this point, she is extremely frail and would have no resistance at all to the smallest health complication. I suspect even a very minor infection might push her over the edge. They are both as tough as steel and as fragile as spun glass. They go on when you can't believe they can survive in that condition, and on the other hand, even something like a cold might mean the end very rapidly.

I don't think this marathon will go on much longer, but it is very hard to say. It is very painful when you love someone and want the best for them, and there is nothing you can do for them but sit by their side and pray for a gentle and loving release from all their suffering. The only good part about this is that she is very unlikely to have any idea of what is happening to her, and she is long past fear and regret.

Thinking of you and praying for peace.