Expert: Mary Gordon - 12/7/2010

Question
Hi Mary:

It seems to me that this end-stage of AD turns everyone into the same person. This Mother that I say is mine is exactly the same as anyone else's Mother at this end of this disease, except she looks like me. I wonder if my continued sadness after all these years of tears isn't now, at this point, a sort of vanity?  

Answer
Hi Catharine

The disease does gradually strip everything away from the person, until there is nothing left but living body that is like an empty shell. You are right in that without an intact brain, we're nothing more than 140 pounds of generic carcass - I do understand that feeling. Dementia isn't like other illnesses. You do your grieving over many years as you watch the person you love slowly disappear. I know when my mother in law finally passed after two long years in the final stage, most of what we felt as a family was relief that it was over, not just for us, but for her. She didn't deserve to live out her worst nightmare, even if she was blessedly unaware of most of what happened to her.

I've often said the last stage gets to be like having a body laid out without the closure of a funeral. I really believe that almost everything that made my mother in law who she was was gone long before her last breath. Her personality and her memories, her kind heart.

You would feel the same way if someone else you loved had Alzheimer's other than your mother and you were slowly losing them - whether it was a dear friend, an aunt, your grandfather, or a spouse. My husband certainly felt that way about his mother - who actually looked nothing like him. I don't think it's vanity. It's human nature to be hopeful. You keep the vigil until the last breath is gone, because you never know if there is some tiny ember left inside that is still her and needs some comfort. Even if she is like a tiny baby, living in the now and only reacting to the most basic functions, you worry she might be scared or in pain, because you are a compassionate human being. You also respect the person that was, and want to do the right thing by them, the same way you would hope someone you love will do the right thing by you.

That's not vanity. That is love in action - because you can't expect anything in return for your caring but being at peace within yourself when you look back, and know you did the best you could. You certainly don't do it so others will admire your selfless devotion. You do it because you can't do anything else because you are a good person. You feel a deep duty to her, and you can't leave her without protection and comfort, and it's sad. Maybe that is partly fear of our own mortality and decline - but as human beings, we are called to be responsible for each other.  

By the time you fully realize they are slipping away, it's almost too late to really say goodby and that's painful too - you don't get closure. You are with them and you know they don't really know who you are, they can't remember your relationship, or return your love, be glad you are with them, be grateful for your efforts. There is just nothing but pity, and that is devastating emotionally in a way that doesn't happen with other diseases.

My mother died from cancer when she was 47 and I was 17. She was alert and still herself until almost the moment of her passing, but here we are 37 years later, and I'm still sad, and I still grieve. Every single day of my life I've thought about her and missed her. In a very real way, your suffering has been much worse than mine because your agony has extended on for so long without resolution or respite from the pain. I didn't have to endure watching a slow motion death.

I don't think your grief is vanity at all. It's really a testament to the value of her life. She must have done something right to raise a caring human being, capable of such deep feeling.

I'm thinking of you.

Mary