Expert: Mary Gordon - 4/4/2008

Question
Hi Mary,

I wrote to you in feb about my mother who is in stage 7 and has been for approx two and a half years.  She was in pain in feb with muscle contractions now she free from pain through muscle relaxant medication.  She is more comfortable but now has a chest infection.  She is being treated with anitbiotics.  She is still eating liquidised food which the doctors are amazed at.  I never thought it could get this bad I am scared and what faces us, as it looks like this disease is going to go through to the very end.  I have asked how long can she stay like this and they dont know.  The nursing staff dont seem overly concerned about her.  I am worried sick.  I feel empty.  She has had this illness 11 years now.  When she was well she was a beautiful looking lady strong minded and kept us all going after my dad died when I was 9.  I suppose my question is do they keep treating infections with anitbiotics She is also on respiridrol and warfren for her blood.  No one can tell us how long she has all her vitals are fine.  Can you in your experience give me an idea of what to expect and how long can this continue for.

Answer
Hi Mary,
I'm glad they finally got her spasticity under control and that she is at least more comfortable. I know exactly how you feel - I know this is absolutely brutal on everyone, and it just wears you down having this stage go on and on.

You can request hospice type palliative care only going forward, if you are prepared emotionally for that. We made that choice with my mother in law. She'd made it clear in a living will, and we'd already but a "do not resuscitate" order in place. We had a care conference with her doctors and the facility staff, and collectively we decided that going forward, we would only treat problems that caused discomfort and were not life threatening. In other words, there were to be no trips to hospital for any reason, no respirators, no tubes, no IVs, no catheters. If she'd gotten a bladder infection or skin rash, we would have attended to those, on the basis that we did not want her uncomfortable. However, if she'd gotten anything more serious, whether heart problems, cancer, kidney failure - or even a life threatening infection like a serious pneumonia - we would have wanted her free from pain, but no treatments beyond that - no antibiotics, only painkillers as appropriate.

I can't tell you that is an easy road, but quite honestly, being carried off mercifully before the natural end of Alzheimer's would be a blessing. The very end stage is very hard. My mother in law essentially stopped eating about 6-8 weeks before the end. She just took in less and less and finally stopped. As I have told others, it was as though she didn't feel hunger or thirst, or have any idea what the food was for, or what to do with it. I think she was at the point where chewing and swallowing were something beyond her. She would just refuse to open her mouth, bat your hand away, or ignore the offered spoon or cup as though it wasn't there. Her end was very quiet and peaceful, and she didn't seem to be suffering at all.

However, my husband went through absolute hell during those weeks. He felt terribly torn. He felt he was doing the right thing, but was still horrified to see the state she was in, and feeling guilty that he was in effect, letting her starve herself to death. It just took so long, it was a real emotional grinder. Having said that, he looks back on the entire experience and has a clear conscience. He regrets she ever got Alzheimer's, but he doesn't regret his decisions at the end of her life. He feels he made the most compassionate, loving choice, based on both her wishes, and what he really believed was best for her in every way.

The hospice care was very compassionate and supportive, and every measure was taken to keep her comfortable and serene. They were also very helpful to our family in what was a very hard time, as we waited for nature to take its course, and for her to be set free of the prison her body had become.

I know you are scared, and it is very hard to be brave when you love someone so much and you are faced with something so hard to watch. I would call a meeting with facility staff and her doctor if that is possible, and have a frank chat about your options, and whether it is time to opt for a palliative approach. You might be surprised. When we broached the subject, we actually thought the facility would object, or tell us it wasn't time, but they were actually relieved, and agreed with us.

I'll be thinking of you, whatever you decide.

Mary G.
Toronto