Expert: Mary Gordon - 4/17/2010

Question
my mama was diagnosed with alzheimer's at age 63 at age 64 she went into a nursing home wheres she still resides she is 67 now and is at the end stage, not eating much wheelchair bound she does not talk just babbles when is it ok to tell her it is ok to go? what are some of the end stage signs? this is so hard for me,my sister and my nana who is 88 alive and well. we are just watching her die, it is the saddest thing i have ever had to deal with in my life. any suggestions?

Answer
Hi Laurie,

I know this is completely gruelling and heartbreaking, and my heart goes out to you and your sister. I really feel for your grandmother as well - it is every mother's worst nightmare - to see your daughter in that condition. End stage dementia is just not like any other illness. It is brutal on the family because it is like a marathon. It gets worse and worse and it gets to be exhausting as it goes on and on. I know this is agony. We've been there in our family - my mother in law lived a full two years in the final stage.

When she is close to the end of the road, your mother will be losing weight continually no matter how carefully they hand feed her or what the dietician comes up with to try and get calories into her.  She will not be much interested in food or drink and will take in less and less - it is as if they don't feel hunger or thirst, or if they do, they don't understand what it means or why they should be interested in eating. It may bother you that she won't eat or drink, but it won't seem to bother her at all. Her immune system will start to fail, and she may get repeated infections.  She is likely to get very thin and frail. As she gets weaker, she will not be able to sit up in a chair - she will spend most of her time in bed, propped in place or she will slump or slide, unable to even hold her head up properly. She will move less and less and have to be repositioned frequently to prevent bedsores. She will not really be aware of where she is or who she is with. She will verbalize less and less - even the nonsense syllables. She will sleep more and more. Eventually, she will lapse into a coma and pass away. Although it sounds horrible emotionally, and it is for those she leaves behind, it almost always a very gentle and peaceful passing.  

The only positive in all of this is that it is much tougher on you than her. She is like a tiny baby in that she is not aware of the past or the future. She lives entirely in the now. She can no longer worry about what might happen next, or have regrets about the past. She can't torture herself with fears or worries. She doesn't remember her past life. She can't understand what has happened to her. She doesn't realize what you and your family are going through. Think how truly merciful that is. You see her, and you are filled with grief over what your family has lost. You fear for her future and that she may be suffering. She has none of that left - she's only vaguely aware of right this minute, and nothing else. What a kindness that is.

Like a tiny baby, she just needs to be loved and cared for, and that is all that matters.  You can tell her everything in your heart - and you should. Whether she can understand any of it doesn't matter - you need to do it for you, while she is still here. You won't regret talking to her about anything you need to say.

She's like a silvery balloon floating about her body tied to it by a very thin thread. Her body will shut down with time, and it's very hard to say how long that will take. In the end stage, they are very fragile but also very tough. Sometimes the smallest thing, like a cold, can tip the balance and start the final spiral. Other times, they can live on and on in a really awful condition and you can't believe they can keep going so long.

Where ever she is now, she knows you all love her. There is nothing to be ashamed of in praying for her release. At a certain point, when there is no quality of life left and no hope for anything other than continuing decline, it is a rational and loving reaction to her situation. If you could restore her to health, you would move mountains, but if that cannot be, I totally understand wanting her to be at peace.

Have you had a conversation with the caregivers and doctors involved in her situation about end of life issues? Do you know your mother's wishes? If you have not already done so, whoever has power of attorney for her personal care decisions should have a talk with the nursing home and the doctors about the hard choices that may lie ahead. For example, if she develops infections or other health crises, do you want her taken to the ER or admitted to hospital? Do you want aggressive treatments to keep her going? Tubes and IVs? Would you want her resuscitated if she stops breathing or are you ready to have a DNR order for her? Do you want her to have antibiotics and other medications?  Do you want to keep going with any ongoing medical care she may be having for other conditions? Does the nursing home have hospice or palliative care programs you may want to look into? That would involve keeping her comfortable, well cared for and out of pain, but letting nature take its course.  Many hospice and palliative programs have wonderful supports not just for the person, but for their families, who can be in more distress than the person.   

If you haven't already done so, do some serious thinking about the coming time, and discuss your options as a family - and then talk to her doctors and the nursing home to see what is available to you that would be best for your mother, and the most supportive for you as a family.

Hope this helps.

Mary G.