Expert: Mary Gordon - 8/27/2010

Question
I read a thread just now about someone who's mother was in the final stages...my mom is just 73 and is in the final stages as well.  She started refusing food and drink so all 5 of her daughters came and spent a week with her - visiting her in Hospice Care daily and talking with her.  She is unable to communicate and does not have the use or her arms - so we have no idea at what level she even comprehends what is going on around her.  After a week, my eldest sister recommended they try pureed food and on Sunday she ate about 50% of her breakfast and 25% of lunch.  Since then she has again refused food.  
I had to return home on Saturday night and have not seen her nor do I expect to be able to spend these last days with her as I have young children and cannot be away for extended lengths of time.  The guilt is terrible.  I feel like she knew we were there and started eating, then realized we left and stopped again.
I don't even know what my question is - just trying to deal with all of this.


Answer
Hi Shan, I know how heart breaking this is, and how torn you feel. None of this is your fault and there is nothing you or anyone else can do about what is happening other than make sure she's kept free from discomfort and pain.  

Where ever she is, she knows you love her. She's passed knowing where she is or who she is with in any way you or I would understand it. She's just adrift in a twilight place, just in the moment like a newborn. I don't think she is consciously aware of what is going on around her, or is able to interpret physical sensations. In a way, it's a huge kindness. She can't torture herself with regrets over the past or fears for the future. Her mind can't formulate thoughts of wanting anything or anyone.

They fluctuate up and down and who knows why. Don't try to put too much interpretation on it - I know we all wish so much that the person could know we are there and care so much.  It's random - just as earlier in the illness, they have good days and not so good days - and days when they suddenly amaze you by having a few minutes of clarity. Completely out of the blue - like the lost connections in the scrambled wiring suddenly line up for a little while and then are lost.

I don't think they even know what food is or what it is for. They don't seem to feel hunger or thirst, or if they feel those sensations, they don't know what they mean or how they are connected to the bothersome activity of eating. My mother in law was the same in the last weeks. Her pattern was that she took in less and less no matter how often if was offered or in what form. Gentle encouragment, coaching, enticing - no matter who was there or not there - eventually she just stopped.  I don't think she knew what the purpose was or why she should want to eat. It's part of the natural course of the end of life. Things are shutting down, and she's just drifting away.

Don't beat yourself up. You were there for it when it mattered - when she really knew who she was and who you were.  I completely understand your need to focus on your children - they need you in a very real way that she no longer does. My mother in law's final spiral sputtered on for about six weeks - during which time she ate and drank so very little, we couldn't believe she lived on.  We had three children under the age of 8 - and it just wasn't possible to maintain a bedside vigil when the process was so very gradual and slow - life does go on, whether we are ready or not. When the very end came, one family member was there, but by then, my mother in law was gone in every way that mattered. It really is like the person is a silvery balloon that has floated off out of sight, but a thread like a spider web holds them to their body - and then ping - the last breath goes - at which point, everyone is relieved, but guilty to feel so.

It's an illness where you have done so much of your grieving already as you have gradually watched her disappear. What lies ahead is peace and release.

Put the guilt away - the love she created in her lifetime doesn't go away.  She must have been a wonderful mother for you to  feel so strongly. It's a horrible, horrible disease in that it has taken from her her ability to really be with her family and enjoy her grandchildren in what should have been golden years.  I truly think the dying is much worse on the living than on the individual. You are the ones who are suffering - and she's just sighing away like a whisper.

I'm thinking of you. You have done everything you can. It's in other hands now, and rest is coming.

Here is a quote I've always loved, that really seemed appropriate for the gentle going out of the tide with dementia.

Mary

A Parable of Immortality, by Henry Van Dyke

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch until at last she hangs like a speck of white cloud just where the sea and sky come down to mingle with each other. Then someone at my side says, "There she goes!"

Gone where? Gone from my sight ... that is all. She is just as large in mast and hull and spar as she was when she left my side and just as able to bear her load of living freight to the place of destination. Her diminished size is in me, not in her. And just at the moment when someone at my side says, "There she goes! there are other eyes watching her coming and other voices ready to take up the glad shout, "Here she comes!"