A recent comment on OurAlzheimer's about a quite common and upsetting situation, spoke about the pressure to conform to doctor's advice. The commentator said she had been told her father's nursing home placement would be put in jeopardy if she did not support their advice on medication use. In this case her relative had been getting agitated and the staff we having difficulty containing him.
The balance of ‘doing no harm' and doing what might be considered best for someone with a neurodegenerative disease such as Alzheimer's can be contentious. Giving treatments to people who are unable to consent to their involvement means we might have to protect them from the actions of others, who for many reasons could abuse that trust.
There are many examples of non-consensual treatments; making people do activities they say they do not want to be involved with, taking drugs with possible side effects they do not want to take, or being subjected to assessments and treatments designed to modify behavior.
As caregivers we sometimes have to make decisions for our loved ones and override the ‘patient's' reluctance or refusal. At other times we have to be led by medical staff who have a lot of experience of similar situations. The good thing is we do not have to make this decision alone. There are doctors and their multi-professional medical teams to help us. But, if you feel the pressure to comply comes from them, to whom do you turn?
There are websites like OurAlzheimer's, local community chapters such as the Alzheimer's Association who can give you support and advice and tell you about local people's experiences of care homes. Even so, your moral compass can be tested to its limits. You have to think that it is not only your mother or father who must live with the consequences of your decisions, it is you who will have to look back and feel comfortable about them too.
Caregivers act as surrogates to make decisions for the person with Alzheimer's once they are unable to do so themselves. Caregivers have to believe is in their best interest. This can sometimes cause conflict and differ from the advice of medical staff. But in the end you have to be practical and weigh up the whole picture of best interest. Like a lot of other things in life it's all about compromise. Even so, all of us can say hand on heart, we do not envy you!
Published On: May 24, 2011