Expert: Mary Gordon - 1/23/2008

Question
My mother has had Alzheimer for 11 years. She is very poorly with it now.  She can do nothing for herself.  She needs 24 hour nursing care.  The nursing staff wake her to be feed and she falls back asleep immediately, sometimes she doesn't open her eyes as they feed her.  On occasion when her eyes are open she stares blankly at the ceiling or light without blinking.  I sit and hold her hand and ramble on about my kids and my day when I go and visit.  But I find its getting harder.  Particularly this week I have cried my way through the whole week.  I need to be strong for her and for my own kids but I don't know if i can be strong.  My dad died when I was 9 so really it has been mam and I since then.  I have older siblings but they cant handle seeing her like this and while in the beginning I couldn't understand now I have grown to accept and understand how they feel.  I still get times when I lash out in my own mind at how unfair it is and cry for the things she is missing and indeed the relationship with my mother that i had and now so desperately crave.  
I have asked the medical staff how much more has she to go through and they don't know.  She has been like this for almost 3 years now. i suppose my question is how long can the last stage of Alzheimer last for and is scared by where she is heading.

Answer
I'm sorry I was so slow to respond - I was out of town.

You poor thing - I know exactly how you feel. My husband was an only child, and his mother died of end stage Alzheimers. It's absolutely horrible at this phase. You are grieving - you've lost the parent you love so much in every way that matters, but her body lives on. Its like having someone laid out indefinitely without the closure of a funeral. You can't go back to where you were before this, and you can't move forward emotionally. Everything is just "stuck", and it's brutal for the family. You feel helpless, and can't think what you are supposed to do. She has no quality of life, you fear she may be suffering physically or mentally, and there is nothing you can DO to fix this, to make it better, to help - other than what you are doing looking out for her interests, and seeing she is well cared for. Its particularly hard when you have been so close to her, and you have no other parent to turn to. You're becoming an orphan, even if you are an adult, and that is tough emotionally.  You've lost your biggest cheerleader, the one person who truly loves you unconditionally. You'd have to be made of stone not to feel the way you feel.

I can't tell you how long this will last. For the majority of the frail elderly, it isn't a long phase, since once they are bedridden, they become so susceptible to infections. They tend to become very thin and wasted because they can't or won't eat enough to keep their weight up. They just don't seem to feel hunger or thirst like a normal person. As you have observed, at times she seems almost comatose - she's awake, but not really aware of her surroundings, and not responding. For most, the end would be coming within the next few months - but every now and then, there is an exception - a person who lives on in the twilight zone (between life and death), despite the odds.

Have you thought about what her wishes are? Do you have a "Do Not Rescusitate" order on her? Have you discussed palliative care (i.e. hospice) with her doctor and the care facility? What will you do if the subject of feeding tubes or intravenous comes up? All tough, tough decisions, and ones you have to be at peace with.

My heart really goes out to you - you are in agony, and I agree -its crummy. Its unfair, its cruel and lousy and miserable. You have every right to be angry. No one deserves this - not you, not your family, and certainly not her.

You are doing exactly what she needs you to do - you are making sure she is well looked after and treated with dignity, and you are loving her. That is all you can do. And you are doing your grieving, which is natural, and normal and necessary, even though it hurts so much. When she does pass on, you will feel that she has been freed and that she is at peace at last.

That you are such a caring person is truly a testament to what a wonderful job she did as a mother - and look what a role model you are providing for your children. They see you treating your mother with love. They are learning about respect, and love and how family members look out for each other no matter what, even when the going gets tough.

Hang in there. She's lucky to have you. I'm thinking about you, and hoping for peace for you, and for her.