Expert: Mary Gordon - 5/28/2008

Question
I have asked you a few questions in the last few months. My mom passed away on Thursday, but we were fortunate enough to keep her at home and your answers along with some books helped greatly. She was too weak to walk and bent over in a semi-fetal position. She quit talking months ago. The last few weeks she was not eating much. The last two days she had a fever and was shaking. She would not eat or drink. Are all theses likely symptoms of alzheimers? It was bitter sweet because she is not in pain and with my dad who died 15 months ago. But she will be dearly missed by many.

Answer
Patti, I am so, so sorry for your loss. You must be grieving -  and I do know how you feel. It's so sad to see the final page of their story end, but at the same time, you are relieved that the suffering is over (both hers and that of everyone who loved her).  She is finally at peace and free, and you are right - it is bittersweet. The emotions are so mixed, including the remaining "shoulda/woulda/couldas" as you review everything that happened and wonder if there was anything else you could have done.

I think it's a pain unique to the families of people who pass away from dementias. Its just not like other illnesses. Its like one long goodbye as they die by inches, and like you, we felt helpless and guilty in many ways. You try so hard to think of ways to make them more comfortable, to improve their quality of life in some small way, to ease their agitation - and after a certain point, you don't know if your efforts even reach them.

Her last weeks sound very typical. As the brain damage progresses, they lose control over their bodies - they can't coordinate movement, or balance. It is as though their brain just can't tell their limbs what to do. My mother in law couldn't even sit up in a chair - she'd slump over, and thus had to be propped and supported. It was as though her neck couldn't hold her head.

They lose weight, and take in less and less, no matter how much anyone tries - and they get weaker and weaker, and finally everything just shuts down. They don't seem to feel hunger or thirst - or perhaps if they feel a sensation, their brain doesn't interpret it in a way that makes them want food or drink. I can't tell you what they feel, but I honestly think that who they are is far away from that physical body they are tied to. Its like they are silvery balloon, tied to their body by the thinnest of threads, and it takes almost nothing to break that final tie.  

As to exact cause of death for anyone in the last stages - most often, the underlying cause is the dementia, no matter what else is going on. When they get so frail, almost anything can be the final straw - even a tiny infection that a healthy person would barely notice. In that end stage, there isn't really anything that can be done for them in terms of medical intervention. There have been studies for example, about feeding tubes and IVs, and there is no evidence that they improve comfort or prolong life. Some of the shaking you were seeing might just have been signs of her neurological shutdown. We aren't used to seeing dying, up close and personal in a home environment in our culture. Think what a life transforming thing you've been through with her. It is a rare privilege to be there with them - she was with people who cared about her, she wasn't in pain - and no one can ask for more at the end of their life, for themselves, or for their loved ones. You were there with her right to the end of her road.

Be kind to yourself. Its over now, she's at peace, and you can be at peace. If you search your heart, you know you did the right things. You did the best you could, and you loved her - and she knew you loved her, even when she couldn't tell you so herself. You are living proof that her life was worth so much.

I liked this quote by Joyce Carol Oates

Our lives are time travel, moving in one direction only. We accompany one another as long as we can; as long as time grants us.

And you were with her, and she was with you, and wherever she is, she's glad of you. It's doubly hard to lose your mom so soon after you've lost your father. So strange to be an "orphan".

Look after yourself. Give yourself some time to rest and recover and to adjust to life without her. The caregiving has likely taken up so much of your time and energy, you haven't really been aware of all the stress you were under, and doubtless, you'll feel at loose ends for a while.  

She'll always be there with you, and there are happier days ahead. Thinking of you.

M