Expert: Mary Gordon - 10/12/2007

Question
My Mom has Alzheimer's and is in  nursing home because she's no longer able to take care of herself.  She can't stand, take care of herself, can't communicate, doesn't appear to be aware of her surroundings and has bouts of non-responsive behavior.  

The situation has arisen that my Dad took her to the hospital to have her pacemaker checked out and apparently it is nearing it's battery life.  The Doctor told us that it is up to us as to whether we want to replace it or not.  

My Mom has a DNR in place, but my Dad is struggling with the idea that this might violate the DNR if he were to have it replaced, but emotionally he doesn't want to let her go yet.

My question is this... what can we expect if we don't replace it?  The doctor has told us that she would basically just faint and her heart would stop.  Well meaning friends have been quick to tell us that she would suffer and basically suffocate before she passes on.  With that bit of information my Dad almost freaked out.  I have looked up on the web and there's the good possibility she could die of a stroke due to a blood clot.

Has anyone gone through this with their family member?  Is there a Doctor that could give us some advice...

Thank you for any help!  

Answer
Hi Michele,

I haven't been through this particular scenario, but we did lose my mother in law to end stage Alzheimer's. Although she was 79, she was robustly healthy in every way - other than the AD, so there was nothing merciful to carry her off before the slow, lingering end that tends to go with Alzheimer's itself. So, no heart problems, no cancers, no organ failures, no infections - just the Alzheimer's.

Before you consider your options - I do want to tell you about what the end was like. She had gotten to a similar point as your mother - couldn't walk, essentially helpless, had lost her speech. She began to eat less and less, and sleep more and more, despite efforts to get food into her. She got thinner and thinner and less and less responsive. She also got very weak, and could no longer sit up, so spent her days propped in bed. Like your mother, she had a DNR, no extraordinary measures - essentially, hospice like care. We wanted her comfortable and free of pain, but we didn't want her poked or prodded or carted off to hospital.  

In the final spiral, which took about 6 weeks, she just ate less and less, and drank less and less, despite heroic efforts to cajole and coax her. She didn't seem to feel hunger or thirst - so she seemed quite peaceful and not in any distress. I can't tell you it was the same for us. Essentially, in those final weeks, they  go downhill from a combination of starvation and dehydration.  That is reality, even though they seem oblivious to it. They really don't seem to feel pain like a person who is neurologically intact. Probably not a surprise when you consider how much brain damage they have endured by the late stage. It was brutal on our family, because it was so slow, and there was nothing we could do but stand by. It was very, very hard on my husband (an only child), and quite honestly, although it sounds terrible, he felt he was failing her by not doing something to help her out of her twilight zone existance (caught somewhere between life and death).  It was her worst nightmare come true, even though at that stage she was long past any realization of what was happening to her. We actively prayed for something to carry her off mercifully.

Incidentally, when they reach the point of not taking in enough nourishment or fluids to sustain life, things are shutting down. Tubes and IVs involve suffering on their own, and there is little evidence they actually prolong life.

I don't think the well meaning friends have helped your father at all. Everything I have read about death from heart arrythmias suggests its very quick - and given that she is not hugely aware of her body or her surroundings, I would be amazed if any flicker of recognition of discomfort would reach her conscious mind before it was over. I think the doctor is the one with the right idea - the pacemaker would gradually stop doing its thing, and she might have her pulse get irregular and slower and slower, and she'd fade to black. Given any alternatives - I'd say this would be a relatively kind way to go.

As you probably know, anesthesia often presents a HUGE problem for people with AD. It totally knocks them down, and they rarely rebound much from the ground they have lost. You are quite likely to find her profoundly worse in terms of cognitive function if the battery replacement involves sedation or putting her under completely. So - in effect, with so little quality of life left, the procedure itself may further reduce that quality, in trade for longer life. They don't really know why it is that general anesthesia seems to have this impact on the elderly with dementia - even for a healthy senior it can have this effect (they call it postoperative anesthetic-induced cognitive dysfunction (POCD)

I can't tell you what the best answer is for your family. I can only tell you that if it were me, I would make her as comfortable and loved and peaceful as possible, and I would sit by her side and hold her hand, and let the little bird fly. We do not regret for one minute refusing measures beyond those for her comfort. It did take a huge amount of strength to stay the course. In a very real way, she was gone long before her heart stopped beating.

Has the doctor discussed hospice care with your father or family? They can be so wonderfully kind and supportive to all of you, and it sounds like they could provide the comfort and reassurance you all need at this difficult time.

I know how hard this is. You feel like the weight of the decision is too much for you, that your heart will break, that you can't bear it, that you fear you will do the wrong thing, and feel guilty, or blame yourself. But I think all of you who love her have an inner voice in you telling you what the right thing is.  You know she cannot survive long no matter what you do. I know you would move mountains to restore her to who she was, and that that can never be. You know what lies ahead for her involves inexorable decline. Your family know her and love her better than anyone. What would she want her last days to be like? Listen to your gut. I think the burden will be off your father if you come together as a family, and let him know you all want the same thing.

Love really is  a two edged sword - but choose your actions from that strength, not from fear of death, or fear what anyone else will think. You have to be united as a family on this one.

I know your dad is struggling. You are a wonderful daughter, both your parents have so much to be proud of.

Mary G.