Expert: Mary Gordon - 4/14/2008

Question
Hi Mary,

Once again I am writing to you in a quandary.  My mother has been in stage 7 for best part of 3 years now.  She is a shell of former self.  She recently had a bad chest infection and was given antibiotics.  She has gotten over the infection but is weakened.  I am the youngest of three children.  I want my mother to have palliative care only.  I don't want tubes or even antibiotics.  They don't agree.  They think the she should be given antibiotics for every infection because she isn't ready to leave this world.  i love my mother as do they but I cannot bear what is happening to her. I visit her 4 days a week they visit once a month and every other month.  i feel i am letting her down by letting her go to the end of this disease. However my hands are tied I know it is not how it should be hoping each night before I go to sleep that she will be taken.  She has done her bit and I know she would want anything else but this at the end of her days. My siblings reckon I am too close and should take a step back.  How can I be to close to my mother.  I know I am not asking any particular question but just had to get how I feel off my chest.  Thanks for listening.

Answer
Hi Mary

I really feel for you. There is nothing worse than living with a situation every day, and feeling so strongly about what the loving option is - and not having other family members share your views. Who in the family has the power of attorney for health care decisions? Can you call a care conference with her doctors and the staff, and invite family members to attend, and perhaps hash this thing out, face to face. Have you spoken to the doctor about the options to see if they would support your view.

We found the staff were quite relieved when we agreed that palliative care and a "do not recuscitate" order were the only real choices that made compassionate sense to any of us. We would have treated anything that caused discomfort like a rash or sore, but if she'd gotten a serious infection or illness, we would have wanted her to have painkillers and be made comfortable, but no tubes, no fussing or poking or prodding, no running around, no trips to emerg or the hospital. We wanted her to be serene and peaceful and as comfortable and happy as was possible.  

Is your siblings fear of palliative care really about what your mother would have wanted or what is best for her now, or is this about their own inability to face her death? Maybe they feel terrible guilt and grief, and just don't have the courage and strength to be the real adults in the family.  Maybe they are just scared and have no experience of how kind and loving and supportive hospice workers can be for everyone in the family. Our experience was very positive. We are sorry that my mother in law had to go through Alzheimer's, but we aren't sorry we allowed nature to take its course.

It's hard to make a choice to just love someone, sit by their bed and hold their hand and do nothing but watch over them and let them go. We think we have to be doing something to fight the end of life - and the end isn't always the enemy. In what way do your sibs suppose they are helping your mom to the best possible quality of life?  Just because we can keep someone going, that doesn't mean we should - they have a lot of machines and drugs and gadgets that can keep a person's body alive - that doesn't mean the person is really LIVING in the way anyone would want to live.

In a way, its as though by your sibs coming only once a month, or once every two months, they can pretend the time in between doesn't exist - that each and every day isn't a slow misery for your mother, and for you. You are the one who has a much more realistic view of what she goes through. Its not that you are too close. Its more that they are too far away. They don't SEE it, because they don't think about it every day, or see it several times a week like you.

I don't have any good answers for you, other than talking to the doctors and staff, finding out what they think, talking to the palliative care staff to see if she would qualify. If everyone is in agreement, and she qualifies, I'd try to have a family conference to more seriously put this option out there.

I am so sorry you are in such agony. I know exactly how you feel, and I do remember how awful that stage of the disease was for everyone who loved my mother in law.  Its like your mother's worst nightmare for herself has come true, and you can't do anything to help her. You can't bring her back to health, and you can't help her to move forward, and you can't even stand back and let nature carry her to freedom and peace. She's stuck, and you are stuck, and its awful.  

Mary G.